The Mighty Monkey

Ignorance must be total bliss, just ask my sister in law Carrie

2011-11-23T20:42:00.000-05:00

Stay tuned.... Updates will be coming

2011-10-06T21:04:00.001-04:00

your heart can break the same way twice......day 365

2011-05-26T19:59:00.002-04:00

Contains Graphic Pictures .....

They say it doesn't but I don't believe that...because sitting in family court for hours today away from my baby made the tear in my heart from surgery feel like it was just freshly done. Details aside, Larry and I are having issues, and in Charli's best interest I took it to family court today. Not something i wanted to do, but I felt my hand was forced and I'm tired of being verbally abused and emotionally blackmailed. Being away from Charli was torture. I wanted to hold her all day today. I wanted to see her in her gait trainer in PT and see her walk again. Instead Shawn was kind of enough to come down in lieu of sleeping to watch her so my mom didn't have to leave work and I could go and not bring her and cancel her tx's. Apparently they had quite a good day :)

This time last year I was staring at drains. Blood tinged CSF, the bag of blood that was hanging, how pale she was. After almost 8 hours in surgery in hind sight she looked pretty good. Hardly any swelling, just a SMALL bit above her eyes. A few hours before this Dr. Asano had come out with the picture. He took us in a room and asked us if we wanted to see it. We had donated Charli's hemisphere to DMC for research, and Dr. Asano (being the research dude) had a picture of it. Two actually. I'll post them. It was then I knew for sure (even tho I was 99.9 % sure after the pet scan, I knew after seeing the pictures that I made the right decision. ) It was shocking. I'll never forget that moment. The morbidity of wanting to see it, but having to , needing to know what it was that caused so much damage to my girl. I can close my eyes and see the waiting room, feel the cold hard chair under me.

It was essentially the same in family court. Cold bench, same blank stare, checking my phone for updates from Shawn about Charli. Except today my girl was in therapy, and playing with Shawn, and watching Popeye. Not in the OR. She had ba's instead of IV fluid. Today the girl with half a brain 365 once again got in her purple GT pacer, and walked a few steps (perhaps not as happily as yesterday since she was crying,but she did it with assistance from Colleen) Like I said yesterday, a year ago Charli could barely hold her head up well, and she couldn't sit. She was like the leaning tower of Charli her core was so weak. Her head control in the hospital post op was AMAZING.

The next few days are going to be very difficult for me. This is when we started to see a decline in Charli as the hydrocephalus set in. By the time she went for her shunt she was unresponsive. She hadn't moved in close to 24 hours. She only blinked. I watched my girl who woke up from anesthesia smiling slowly start to slip away. And so began the hardest time of my life. Follow up MRI would show a clot in the transverse saggital sinus, and what they thought was either post op bleeding or possible ischemic event near the CC. Hematology came in (this was about 4 days after her surgery) at 7p .. Dr. Chitlur, she is so amazing.... to tell me about the clot and the possibility that she had or was having a stroke. We had no idea what to expect, we were going to go ahead and do the shunt, but if she was having another stroke it may not change anything. So basically they wheeled a catatonic baby in to the OR and I had no idea if that is what would come out again. And essentially it was. She scared the life out of me because she slept ALL DAY. her surgery was first in the morning, and she didn't come out of anesthesia until almost 6p. Myself, my mom, and Dr. Paredes were there when she came around. I remember my mom and I had been balling watching the saddest movie about a man and his dog in Japan, and the man died and the dog waited at the train station for him for years. It was heartwrenching. Charli woke up, and didn't really respond right away. Until I started doing the dancey dance. Yup. (Mary will appreciate the Yo Gabba Gabba) The dancey dance worked. Even Dr. Paredes danced. Because she smiled. Not just a little smile. but a BIG CHEESE CHARLI smile. The best thing I've ever seen. The days in between the hemi and the shunt are some what of a blur. Oddly enough there was a tornado then not even an hour from us. Tonight there are tornado warnings here ...have been all day. Before the shunt Charli's EVD site was kind of like it has been lately...golf ball size, and her demeanor changed slowly. She lost the brightness in her eyes. Her smile went away. No laughing. Lots of vomiting. If I never smell banana pediasure again .... I just remember feeling so helpless...lost...scared. I didn't know what to do, there was nothing I could do for her. She had to fight her way out of that predicament. It's a bit like I felt last night into this morning. Helpless. Scared. But the difference now is I am stronger, because Charli has made me strong. I CAN help her now, and I had to do that by going to family court and sorting out some things. I didn't want to , but to help her I had no choice. I control our destiny. I control our outcomes. I couldn't then, I can now. I'm not as scared now as I was earlier. (the xanax helps for sure!) but the retaliation will be swift from the enemy camp I'm sure. But I'm prepared for it. I know it will come. And I will stand up and fight and do what I need to do just like every other time I have for her. She deserves and will get the best, and she should not be shorted anything. I've worked my ass off finding her the best dr's, getting her the best therapy team, working with them to get her the best equipment, to find the best school. I will not let anything be taken away from her.

In my life, right now, I have everything I've ever wanted. I have a beautiful, healthy, amazing, strong little girl. A girl who constantly beats the odds. The odds given to her at day 4 of life, when they said she'll never walk. She'll never talk. Well apparently they didn't know who they were dealing with. I have a man in my life, an incredible man, who loves not only me, but loves my daughter with a fierceness and sweetness that melt me. Everytime. Someone who considers us a family. Who puts my daughter first. And me first. Who I know will always be there if I need him to be. And will do anything to help , for example today...driving an hour (Shawn lives in Shushan...yes, you are all scratching your head going where the heck is that) it's near VT. .. so he could play and watch Charli, so I could do what I had to do for her. He did her therapies with her. He texted me updates and pictures. I came home to see a happy smiley baby greeting me with "hi" and my love looking so very tired and concerned about me. But he said they had a great day. I so needed him. He was the answer to a lot of my prayers. And as a song just popped into my head... I could not ask for more. I've found all I've waited for....and I could not ask for more. Shawn came in to my life for a reason, I'm certain of that. And with him and our relationship I have found a new found hope, a positive outlook that I thought was long since buried. And someone in our life to love us both so well. And I so needed it. And he is everything I needed and more. I will forever be grateful to him for coming into our lives, and not being afraid of my life...and being willing to be a part of it.

Back to surgery.... around this time I think I was getting ready to leave the hospital. She was in ICU and the nurses told me to go to the hotel and sleep. It was the next few days I would need to be there. We got back to the hotel and had the most DELICIOUS confections waiting for us when we got back from the head chef...because my friend Kamal who worked in the kitchen told the chef about us, so they made us a special dessert. So my mom and I went back to the Renn center and ate our fine delicious confection and crashed. I wanted to be back as early as possible in the am. And I think that is what Im going to do now. I think the time has come to crash. to go rest my weary head from the days events, try not to think about what may be coming from it, and to just enjoy being home with my girl. My healthy, strong, walking girl.

what a difference 365 days makes. Like it was yesterday , yet seems so far away at the same time. I still don't have it all out. There is still surgery stuff buzzing around in there. I am sure there will be plenty of blogs the next few days. They will probably be scattered much like my brain, but I'm trying to get it all out. I'm gonna go sleep next to my girl and send her my love while she sleeps. And send my boy my love while he sleeps and then goes to work. sigh.. it really was a HELL of a day. Bed sounds lovely right now. Love hard, laugh often, hug your kiddos, and try to get along with your exs. it is just so unnecessary to battle. its just wasted energy. Love and prayers to you all.

364 days.....

2011-05-25T21:20:00.002-04:00

I really want to blog tonight. I have so much in my head I need to get it out. Tomorrow is the one year anniversary of Charli's hemispherectomy. Tonight, in her brand new purple gait trainer, she took her first steps. My totally non weight bearing child took her first steps. and not just one or two. SEVERAL.

The problem is I have so much in my head it's hard for me to get it all out right now. I'm fighting with Charli's dad quite bad so that has just pretty much pissed all over my day. Now my urge is to just go to bed and pick up with a new day, a bright outlook, a great PT session tomorrow, and not let the negative crap bother me. But I'm tired, and it was a big day, and it's an emotional week for me to say the least.

So I'm going to blog about this. Just maybe not right now. It's funny, this time last year I was sitting in the Renn Center freaking out about how to send my child into the OR. What was going to happen. Would her smile go away. would her seizures go away. Did I make the right decision?

Tonight I got my answer as Charli cruised in her new Rifton Pacer. Everything in the last 364 days has been miraculous for us. May 26 2010 gave Charli a whole new life. In the NICU they told us she would probably never walk. I want to take these pictures, mail them to Dr. Foster with a very short note containing a few expletives.

HOPE exists. Everywhere. In all of us, in every tree, leave, cloud. Everything is bright with possibility, every dawn a new opportunity for a great day. Sure, we have bumps, and hurdles, and bad days, but my philosophy as of late is the glass is half full, things will be ok, I CONTROL MY DESTINY. I CONTROL THE OUTCOME OF OUR LIVES. And from here on out its ease up on the negative, full steam ahead with the positive. I feel alive. I feel better. Everything is brighter, more crisp. My appreciation for life is at it's highest. My daughter WALKED today!! I think I was numb with pride as I sat there taking pictures. I couldn't even cry..I was so happy. Because I KNEW she could do it. I had NO DOUBT. I knew once she got the right equipment she would be fine. And thankfully she has a wonderful therapist who agrees with me. Linda made this happen. She knew she was ready for a gait trainer. She fought to get her one, did the letter of justification , set up the eval for it.

Today was a glorious day. For many reasons. Overshadowed by sadness, friends losing children...a heartbreaking loss during a hemispherectomy, a friend taking Charli's birth buddy Hannah to the ER as we speak. My ex trying to assert his power and ruin my life yet again...but I won't let that get to me. He can do whatever he wants ...his failure to realize by getting me evicted etc doesn't hurt me, it hurts Charli. It's laughable really at this point, that he still doesn't get it. But whatever. this isn't about him. This is about all these emotions and feelings tied to surgery buzzing around in my head. and the fact that I watched my child walk tonight. Amazing. My heart was about to burst. I was so proud, and amazed..yet at the same time I knew all along she could do it. What an amazing feeling to watch your child stand, and then take steps. And MANY steps.

Ok. this is all over the place. Larry is text arguing with me so I'm losing all train of thought. Good night for now my friends. I will be all over the place emotionally tomorrow I'm sure...so expect a blog :) In the meantime, love hard, laugh often, hug your kiddos.. say prayers for those in need.

Love to you all.

Detroit 1-8-7 (well, ok, not really, but we like to pretend)

2011-04-17T17:07:00.002-04:00

This is your baby. This is your baby burrito. This is your baby burrito with EEG leads and VEP goggles on. This is also what a CLEAN (outside of the left hemi schtuff) EEG looks like. Yup. That's right, you heard me. Clean. As in, almost 11 months without..you know, those things. The things that we were having HUNDREDS of a day, that knocked my girl on her butt, that suppressed all her little brain wanted to learn but couldn't. This is what removing half of your brain will do for you. Dramatic, eh?

So, as you can tell we had a recent visit to our Angels in Detroit. Where we once again got bundled up and sat in front of the video monitor for what was supposed to be a 23 hour VEEG. Charli however decided that at 1am she had enough and they had enough info and ripped her leads off. And the tech wisely decided to not attempt to re attach the leads. Im sure someone would've gotten bit. Sure of it. So Monday at 10a we were hooked up, and came off at 1am Tuesday morning. Dr. Sood and the gang came in on rounds for consult (asked by Sarah very nicely several times) because of the fluid issues we have been having. Charli was awake this time and showed some of her stuff (only a little bit) Previously Katie and Trish had come in and she was sound asleep. Everyone wanted to see her and have her show off her talents. Dr. Sood ordered an ultrasound of her tummy to rule out fluid accumulation...so off to Radiology we went. US was neg, so we were out of there...to the Ronald McDonald House to be back the next day for our appointment with the Rock Star and the junior Rock Star Kevin. OH. Let me back up a bit. Monday when we were checking in to EEG Kevin came walking thru and immediately came out to say hello and give hugs. He knocked me on my ass when he sat down and said "whatever happened with her sinus venous thrombosis?" My doubt is that he had just been reading her chart. My belief is he is just that good. How he remembered that is beyond me. But it floored me, and reminded me of yet another reason WHY I LOVE DETROIT SO MUCH. The care and concern and attention to detail that is shown by ALL of her medical team is astounding. So we somehow started talking about her last eye exam (and the disaster that it was) so Kevin hops up, and goes in the back, comes back to us, and says when she gets disconnected tomorrow we'll do a VEP. HELLO. Do we know how long it takes to get a VEP in Boston? ANNND not only did they do a VEP, they did an ERG as well. So I don't have to get back to Boston til May now. EAT THAT ACCREDO!! Seriously, these are tests that we fight over. There are only so many spots on the ONE Thursday a month they do them and it's not an easy feat to get scheduled. And Kevin (Dr. K) goes and gets it set up like *snap* that.

So on to Wednesday, our appointment with Dr. Chugani and Dr. K. (Sharief was out of town, so we missed him this trip) :( We did see Dr. Asano tho!! Dr. K comes in before he sits tells me that the EEG was clean (outside of the slowing from the left hemi, because, well..there isn't one...so that will always be there) but there were no recorded episodes or spikes or discharges. YAY! I was dreading the results for some reason. I don't know why. I always have a freak out moment right before getting EEG results. Because I know they can change in an instant. We even discussed (once Dr. C came in) how prone she is to focal and partials because of the shunt. (and given the possible focal activity during her second revision and a few weeks ago I don't doubt that for a minute we could be faced with a med change at some point) But for now I celebrate our clean EEG, and the fact that my girl is doing AMAZING. She was VERY cranky and had a meltdown in the appointment, but was quiet long enough for Dr. C to look at her, and assess her a little bit. He was very happy with her progress, and said that if not for the revisions we probably would be farther along. He said, confidently, "She will walk. She will. probably soon" He also said "she will talk" If Dr. Chugani says something with confidence, in that manner that he has, sitting back after pondering for a few moments, I know without a doubt it will happen. He told me that pre op. "she will be fine. She will progress. She most likely will not have another seizure" If he speaks, I listen. We had a fabulous conversation about a possible new treatment to reverse the vision loss from a hemi being done on monkeys right now, albeit a very risky surgical procedure. Dr. Chugani is in the process of researching a med that could produce the same results. He has some of his older kids in the study. He said maybe Charli could be in it as she ages. Talk about cutting edge.

There was some concern about the fisting of her right hand and indwelling thumb. Dr. C had talked about a tendon release surgery before she had her hemi to happen sometime down the line. Kevin had looked at her hand when we were sitting in the waiting room when we first bumped into him. We actually bumped into Dr. C in the elevator when we were going up to 5West for the EEG Monday morning. The first thing he did when he saw her was pick up her right hand and look at it after he said hi to us. So a conversation started about rehab, and physiatrists (and the lack there of around here of pedi ones...much like neuros) and Kevin asked if she had ever seen anyone before. I said no, she saw Dr. Chinarian when we were deciding on inpatient rehab vs going home, but she has never actually been to a dr of physical medicine. So he says "hold on" and leaves the room. Comes back and says "I had to pull some serious strings, but I got you an appointment with Dr. Pelshaw for tomorrow morning." WHAT. What neurologist sets up appointments? Ours. That's who. I laughed later at the thought of Nichter even suggesting she see a rehab dr much less attempting to get her an appointment. There is the difference between AMC and CHM. Dr. Adamo would do it. He is different. He is special, and has a Childrens Hospital special quality to him. But the rest of AMC...I think not. We are lucky enough to have dr's that not only care but are proactive and thoughtful. Dr's that want to see their patients get the BEST OF EVERYTHING. Including physical medicine. So we met with Dr. Pelshaw Thursday morning...who is an amazing person, kind and considerate for seeing us first thing before his day even began (when he had to see patients then go off campus to another location to see patients) Dr. P was very impressed with her ROM, even tho her right hamstring is tight, her heel cord tone is good, supination of the right arm is good (worse on the left but we are all aware of that on her team at home) He asked what therapies Charli was receiving. I rattled off her list and her frequencies and he stopped and looked at me and said "you are quite the advocate. That is WAY more than most of our kids get here" I shrugged and replied, "nothing but the best, that is why we are here". So the plan is to do Botox in her right hand by her thumb in her palm. ANNND we have an appointment MAY 5th!!! That means back to Detroit in a few weeks! and this is only made possible because of Dr.K. I know for a FACT that would NEVER EVER happen at AMC. We are lucky to be listened to at Albany Med. The docs at CHM make us feel like Charli is the only patient they have that's how devoted they are to her and her care. I honestly, truly, can NOT say enough about CHM and the dr's that are part of Charli's care.

I wish I could accurately convey my thanks and gratitude....and I'll never be able to...for as long as I live. But this smile ------> over here, that smile...that is my way of showing them all they have done for us, and how they changed my little girls life. Because everyday is truly a gift. Everyday is miracle. A blessing. Everyday this is possible because of CHM.

I love you Detroit, and all of CHM. And my favorites. You know who are you...... :)

Where all they do is for them......

2011-04-11T20:16:00.002-04:00

Hello Detroit my old friend

2011-04-09T08:45:00.002-04:00

Currently I'm still in Delmar, sippin on coffee listening to Mumford and Sons Pandora, waiting on my mom and my baby to come home.

This is our first trip out to Detroit since our surgery. It makes me a little nervous I have to admit. I've seen some suspicious activity in the last few weeks so this EEG is making me a wreck. (not that they don't always) but I'm praying there is nothing going on. Her shunt is still having the fluid issues, so I know that could become an issue at some point.

I'm also excited to see all of the WONDERFUL people and her amazing medical team. I can't wait for them to see her, and see the amazing progress she has made. Charli couldn't hold her own bottle, sit up, barely hold her head up..much less talk when she had surgery! She also had little hair then, so EEG glue oughta be a ton of fun now. UGH. I hope they are all as amazed an impressed as we all are with her. It's because of her strength and resilience, but because of them she is able to do all of these things. They gave her this amazing opportunity. And I don't know how I will ever put in to words my thanks and gratitude. I think about surgery and close my eyes and can feel the chair underneath me in the waiting room, the bouncing non stop of my leg, cranking All That Remains trying to lose myself in the music, with absolutely no idea what was going to happen. Would she be the same when she woke up? Would she have a different personality. Would her smile go away... will she lose what she could do with her right side. Will it even work, or will we still see them. When he said give it a few months and you'll see her take off progression wise, is that true? I'm tearing up now thinking of all of the doubt and unknowns I had that 7 1/2 hours. When she smiled in ICU when she came out of her anesthesia some of the doubt melted away. I questioned so many times was I doing the right thing by letting her have the surgery. She's going to live the rest of her life with half of a brain. Could I do that to her? Her vision...what happens when you take out half of a brain. So many times I thought maybe we shouldn't, I should stop this. But they knew. They saw it in her, and since her hemi I've seen the amazing other miracle hemi kids and their amazing stories, and my amazing miracle hemi kid writing her own amazing story. They knew that once they removed those pesky parts that were left in the left hemisphere she would be ok. She would stop being ravaged by hundreds of seizures a day, stop being a guinea pig with meds. They knew that this was her miracle. They knew that this was her chance. And even tho I trusted them with all of my heart and soul the fear and doubt was still there. I love these dr's with everything I have, but that fear, the demon that never sleeps, kept harassing me..despite how loud I'd turn up my ipod. "I will not fall, I will not fail." over and over. I couldn't. I couldn't give in to the fear. I wouldn't. I didn't. Because if she didn't, I wouldn't. And when Dr. Sood hugged me and said "It's all going to be alright, you'll see" I knew... these dr's know, they see it in her, they see the potential if only the seizure monster would go away and let her brain rest, and learn, and take in the world.

For those of you questioning surgery, I feel your pain. But I can honestly say it is the single most important, best decision I have ever made. Not every outcome is the same obviously. (like us needing the shunt) but if you or your kiddo is a candidate, I urge you to consider every possibility and outcome if that surgery works. Because it is a life changer. One that will live with you everyday, and one that will bring you amazing gifts and miracle days. It's not easy, it's not all flowers and rainbows...but with my heart and soul I tell you it's worth it. HOPE in one Hemisphere. It exists. It happens. There are many wonderful, beautiful adorable stories and pictures to prove it. Miracles happen. Everyday, everywhere, in everything. In my case, it happened in Detroit. So for me, my favorite place in the world is Detroit. It always will be.

So I'm going to shower, put my miracle baby in the car, crank the tunes, and make the 10 hour drive to the city of Miracles, and proudly show the dr's at Childrens one of their success stories. And thank them (again) for the most amazing gift I've ever gotten.

I <3 Detroit.

Denial and the blow I never wanted to acknowledge happened today....

2011-04-05T03:13:00.000-04:00

We had TVI today as usual, but she was at a conference over the weekend. We are due to attempt to get in to Perkins School for the Blind for better visual acuity testing, but now they aren't open until FALL!!!! for scheduling. That really pissed me off since I've been trying for months, and my TVI mentioned to the person doing the conference that we have been trying to get her in for a while. So while she was there she learned a basic acuity exam that will give us a ballpark idea of what she is seeing. It was a long wooden dowel rod with a mini koosh ball hanging off of it. While I was in front of her it was introduced in to her visual fields and we noted when she saw it. Left side she saw it peripherally. from the top it took until about almost midline for her to see. the right, she didn't see it. It crossed over midline. :( So as near as we can tell she doesn't see with that side. Honestly it hasn't hit me yet. I expected it, I knew it , but to see it be so dramatic...was just heartbreaking. But my TVI reminded me (and she is right) about how well she has compensated for her vision and that you can't even tell she has a vision defecit. And according to her last ERG her developmental vision is still improving, so we can only speculate that she compensated for her vision loss from her stroke, not her surgery and that is why she doesn't show the typical signs of CVI/vision loss. It was just a major blow on an already crappy day. I guess I knew it all along, I just never acknowledged it. it was like her stroke in the beginning, if I didn't acknowledge it then it wasn't there..or at least not as bad. sigh. sometimes I hate testing.

New kicks and kickin butt.

2011-04-04T18:49:00.002-04:00

Well, let's start with the new kicks. I bought new shoes (again) in the hopes that she might ACTUALLY keep them on. My child hates things on her feet. I don't know how she hasn't inherited my love of shoe gene, but she hates them. Hopefully these she can't Houdini out of. She kept her AFO/SMO and sneaks on thru PT and Horse Tx today.... which brings me to kickin butt...

We have to be at the barn at 3. It was about quarter to 2 and I was packing up her stuff to get her going (it takes me like 30-35 min to get there) and the phone rings. It's the Center for Disability. Melissa. The secretary. "I just wanted to let you know that Charlotte can't go to Hippotherapy today because the treatment plan Liz wrote hasn't been signed off on by our dr". I was like, so... why is that our fault. She started explaining there was nothing they could do, the dr was gone, it should be ready next week. I was like, that's fine, except she will miss next week because she is in Detroit, and has missed the last 2 sessions because she was hospitalized and sick. She will not be missing today. So she is hemming and hawing and telling me there is nothing she can do. I said fax it to the dr. "It's a computerized system" I said "Ok, email it". she said "well...I don't think we can do that. I'm just calling to tell you, that is what I'm in charge of." So I said "ok then, let me talk to who is in charge of you" so she gets all pissy and finally gets (of all people) a Charlotte on the phone. Who is very sweet. Unlike Melissa. I explain the situation and how I'm NOT a happy camper, and I realize it's not there fault the dr didn't sign off on it, but isn't there a dr in the building that can sign it? Every missed session is a missed opportunity for us to get her on her feet. So at first she was like there is nothing I can do, I promise it will be ready next week...so I give her the we were just in the hospital and she needs this therapy and she'll miss a whole week of therapies next week sob story and she said, "let me call you back in 5 minutes". Meanwhile I have the CPSE Chairperson calling, who has now called 3 times..lord knows what she wants, I just didn't have the time or patience to deal with her today. So Charlotte calls back and didn't sound too enthused...and she TOTALLY psyched me out..she said "I got it signed!!" I was like OMG YOU ARE THE BEST!!! I don't think she knew what to do with herself because I was paying her so many compliments. So off to hippo we went. Liz was like "how are you guys here?" and I told her what happened and she went "THANK YOU!!" because she was not happy that they screwed up and should've had that paper work done...so the fact that I fought for our session today made her very happy. And she did very well. Good trunk control until the end when she got tired, said "go" a few times to make Babe go, lots of "hi's" to the therapists, and lots of talking.

So, all in all it's been a pretty miserable day, but at least I won one for Team Gill.

My little equestrian has tired herself out and is asleep already. I'm not far behind her.

Til the next one... love and prayers and good thoughts to you all.

Charli 2, accumulation 0

2011-03-27T17:32:00.002-04:00

So, yet again, there it is. And there it goes. It's like a tide. Except a big, engulfing, horrifyingly scary tide because you don't know if it is or is going to result in failure. Really it's a giant pain in the ass.

So two days in for observation of the "accumulation", 2 CT's and Shunt series' later... the cause is abdominal distention/abdominal processes. Ok. so off we go home, satisfied (sort of) that it's just poo causing our pocket.

Until the night before last, when the vomit happened. Followed by the spike in temp to 102 (which is the highest she has EVER been) She was with daddy when it happened. As the day progressed so did her whimpering, irritability, and decreased appetite. Off to the ER. This time I wasn't there....I had a blinding (or still have I should say) migraine, so I stayed home not convinced that this was a neuro issue. Bags packed in the event I get a call saying surgery, or admission. Well, admission happened...but Larry was kind enough to stay. The were admitting to give fluids and observe. I walked in this morning to a playing monkey who gave me a bright cheery "Hi". They got an IV on the second shot last night (go Stephanie!), she had yet again another CT/shunt series which still showed no neurological changes, but changes in her abdomen in terms of pressure/gas/stool. (lovely, right) Once again nsurg is convinced that this is not a shunt failure, but just ICP changes due to increased abdominal pressure. Blood cultures and urine culture pending....Dr Brand said if the UA was clean we could go home because he wanted to minimize her hospital time. We all agreed. So they straight cath'd her (never a good time) and the UA was clean. So my monk went home with daddy to play with Mema and I could try to sleep off this migraine. It's getting to be really annoying..just when I think I'm good it's back. I'm currently biding my time so I can go to bed. It's only 545. And I'm ready for bed. The last several days have tapped me beyond belief. And we have A LOT coming up.

We have Detroit which is obviously the biggest, she has her evals for CPSE (IEP) and the tour of her new school, pedi appointment tomorrow with Dr. B for hospital follow up. Thank God for him that's all I can say. I think I texted him 5 times yesterday, talked to him on the phone twice, and there he was this morning ready to see her. Then I bumped in to him at Dunkin Donuts and he offered to buy my coffee. I'm pretty sure he is an Angel here on earth. I know we are with him for a reason. I can't say enough good things about him. Or the office (especially Danielle) and Precious who must be out having or have had her baby (yay!) because she hasn't been there the last few visits/calls.

I cant wait for Detroit. For as much as I'm not looking forward to making the drive, I can't wait to see everyone. And knowing Dr. Taraman is leaving this summer I am so thankful that we get to go now and see him one last time.

Well, my migraine is telling me to get off the computer, but I just wanted to give a quick update as to our week. Saturday was Purple Day for Epilepsy btw in case you didn't celebrate and rock out your purple. Ours didn't end very well with a hospital admission. I'm thinking Purple Party next year. Perfectly Purple Party. Cuz we have to make up for this year. And a party sounds like a good idea. Plus it allows for cake. That is always a plus.

Purple Rules. Just sayin...

accumulation

2011-03-21T20:32:00.002-04:00

No, for once, I'm not talking about snow. Although it did do that today.. the first day after the first day of spring.

This time the accumulation is CSF around the shunt. For those not in the know, Charli has a valveless VP shunt, something that should not be accumulating fluid because there is no valve to regulate flow or to not regulate flow. So something, Lord knows what, is malfunctioning. According to the CT and shunt series done in the ER Thursday there were no obvious blockages or kinks in the tube.

So currently we are dealing with mystery fluid pocket. And let me tell you, mystery pocket is driving me out of my mind. I am scrutinizing every inch of her head, looking for other possible hygromas and lines of demarcation, every little behavior, every head tilt. Every time she doesn't want to finish a bottle right away. I'm GOING CRAZY. Normally it's malfunction, ER, emergency surgery. While scheduled surgery certainly is better for all involved, it's still nerve wracking as all hell to sit her and count the hours til our appointment with nsurg. OH. that reminded me I wanted to email Dr. Sood and see what he thinks. That may have to wait til tomorrow now. My eyes are getting heavy.

My only hope that tomorrow is quiet, and that no other symptoms start to present. Hopefully she can maintain til we see Dr. Adamo on Wednesday. Dr. Brand feels that he is most likely going to schedule a revision. There is no reason for fluid to be built up there, and now that her stomach issue has resolved there should DEFINITELY be no reason for a pressure change.

Sigh. I don't even know how I feel about this. This valveless shunt has worked the best, we've had no overdrainage which was a big concern, and it's lasted the longest out of all of the other ones. I don't know why we keep having problems with them. It's driving me batty.

Top that off with when I went to pick up Charli from her dads today her grandmother showed me a video of my nephew CLEARLY having a seizure (this is all new...the past week) while playing a video game. To me it looks like partial/absence. Probably will go on Depekene. Just what our family needed, another epilepsy. So that has had me thrown off all day. I'm a freakin mess. I need to lay down for 24 hours not get out of bed except to pee and make coffee. That's it.

So for those of you that pray, please pray for my brother and sister in law, and for Charli's grandparents...they are all under a great deal of stress right now and obviously very upset and need some good thoughts and lots of prayers. If you could say some for us as well if we need to have surgery again I'd appreciate it.

I'll update more after Wednesday when we see neurosurg.

I'm beat. Going to bed. Nite all.

Let's talk about STROKE, baby.

2011-03-13T19:18:00.002-04:00

Yup. I said it. Stroke. I bet some of you didn't even know that Charli had a stroke. All I ever talk about is seizures, seizures, epilepsy. Not that there is anything wrong with that. But lately the dusty recesses of my mind have been stirring, and I realize now that I've let the stroke part of my advocacy brain lie dormant for too long. And for that I apologize. Time to devote (or try) equal time. This comes at a time when stroke issues are (at least we think) more of an issue now than have previously presented themselves. (Hence the KKI feeding eval) 1 in 4000 babies will suffer a stroke in either the neonatal or perinatal period. When Charli was born it was barely noticeable. A small lip issue. Larry noticed it. Everyone thought he was just being hyper critical. Little did we know that within the next 12 hours shit would hit the fan like we wouldn't believe. Charli (come to find out several months later) has a clotting disorder, as do I. Factor V Leiden mutation. It is a hyper coaguable condition which increases risk of stroke, clots, and miscarriage. Casting and surgery usually require an anticoagulant therapy, and birth control is a total no no. In the beginning the initial MRI showed what they said was a "bilateral MCA infarct" meaning both sides of the brain, middle cerebral artery infarction. Or BIG STROKE. Come to find out in Detroit that wasn't quite the case, but the stroke was significant enough. It almost completely wiped out the left side of her brain, and her right side does have abnormalities. Thankfully it was fully formed, unlike her left side. Charli didn't begin to show signs of her stroke until she was about 5 months old. That was when I began to notice her left sided preference for trying to do things. Not that 5 month olds are doing that much... but I noticed. It was then I knew we didn't escape unscathed as I had hoped and prayed everyday. Her tone had always been symmetric and equal. I thought...maybe, just maybe...we were ok. Boy was I wrong. In over a month we would have the seizure disorder, and life as I knew it (when I thought it couldn't get any worse) got so much worse it's unspeakable. But I speak about it, because it needs to be told. For the first few months I couldn't even say the word stroke. If I said it, then it was true. How could my baby have a stroke. Babies don't have strokes. Old people have strokes. (of course Larry had to go and prove us all wrong by having a stroke when the baby was 6 months old...which you all probably didn't know as well. Spontaneous carotid artery dissection) 2 strokes and a catastrophic seizure disorder in 6 months. And people wonder why I need xanax.

I had a purpose...then the song just changed on Pandora to Metallica One and I lost all ability to think past "GET OFF MY COMPUTER".

Most people often think of stroke and think paralysis. That usually (or often I suppose) is the case. Charli is right sided hemiparetic, meaning she is not paralyzed, she has movement, it is just not very volitional. Which is why she gets every therapy known to man. To increase her muscle re-education and prevent atrophy. She has gone through 5 hand splints so far (I think..if memory serves me correctly..and usually as of late it doesn't) has one that still works, her AFO and SMO, and a scoli vest which she has worn probably once. That didn't go very well. The problem with hemi kids (and now by that term I mean hemiparetic and hemispherectomied) is they have weakness (obviously) so she tends to be the leaning tower of Charli. This has caused a slight functional scoliosis. It is beginning to get better as she is able to strengthen her core muscles and sit upright for longer period of time. She has also developed the ability to lean forward and back up again in a sitting position, and has some righting ability while sitting up. These are all things that prior to surgery were non existent and not even on the horizon. Charli was not able to sit up prior to her surgery. Mostly due to seizing which was controlling everything at that point (which is why I rarely talk about her stroke).

http://www.kidshavestrokes.org/

I really hate ending a blog like this. abruptly. But literally, all thought has left my brain about how I wanted to write. My brain is a cycling of thoughts at all points in the day, but I am currently unable to get them out now. Which frustrates the hell out of me. Well, I guess this is how it's got to be til I can collect my thoughts again. The main purpose of all of this is that Charli isn't just epileptic, she is a stroke SURVIVOR, and that every day there are more stroke survivors born, more lifetimes of therapy. That can't and shouldn't go unnoticed and people need to be aware of the symptoms and the frequency that pediatric stroke occurs.

http://www.chasa.org/

Ok, so I'm out. Like trout. Til next time.... remember Kids (even BABIES) have strokes, too.

KKI, nutella, curls and other randomnings.....

2011-03-12T04:49:00.003-05:00

Let's start with the Nutella. Chocolately hazelnut spread of the Gods. Which I have now given up for Lent. After polishing off two jars for the first time in almost 35 years. Why has no one ever had me eat this before? And for the record, no sugar Hazelnut Coffeemate has nothing on Nutella. In fact, not such a fan. I need my Baileys creamer.

It's currently 451a, EST, and the world is a strange scary place. Just getting back from Baltimore today about 12 hours ago (or so) during massive rain and flooding in MD, NJ, NY...and Japan sustained an over 8 magnitude earthquake today which triggered a tsunami with waves 23 feet high. Parts of Japan are demolished, and the aftershocks and tsunami waves reached the west coast and Hawaii. I woke up a while ago for no reason after a very restless night of sleep. Probably cuz Monk was up most of the night last night, and she isn't here tonight (with Dad now) and I miss her so much. According to Larry she woke up around the same time I did. Guess we are pretty in tune to each other even when not together.

So my little Curli-locks had her feeding eval at Kennedy Krieger Institute on Thursday. It was an almost 3 hour appointment, with a PA, OT, Nutrition, and two behavioral psych people. It was a lengthy H and P, and full exam. It was exhausting both mentally and physically on all. Charli rocked as she always does. She was great thru the ENTIRE thing, hadn't napped since early that morning..tolerated me trying to feed her, sat in the high chair and played, and for the second time that day ate a few bites of frosted animal cookie for me in front of the team (so at least OT got to see her ability to chew..which she said looked good, and was good because she showed ability for munching which means she has the ability to chew and eat) They all loved her (of course) and she showed ALL of her tricks while I was going thru her medical history with the team. I was off my game that night too. I don't know if it was because it was so late, or what, but I was not on the ball like usual. I couldn't remember the name of her Nutramigen. How the hell did I forget that, she was on it for almost 2 years!

They said that due to her complex history and all she had been thru it was not hard to believe she has difficulty eating. She was recommended for the intensive inpatient feeding program, which is 7 days a week, in a hospital, with therapy being OT and SLP. I'll have to figure out something for PT. They prefer her for inpatient because of her severity of food refusal and because of her shunt issues they would rather her be monitored in a nursing unit. (which is kind of fine with me, if we are going to be there for 6-8 weeks, we might as well be in house) It's all just starting to sink in now. The program is INTENSE. They use all, if not almost all, ABA. The beginning does not sound pleasant and I know I will be popping xanax during it. It is basically "you don't get to stop eating by refusal, period.. you will learn that the spoon and food is ok" Trying to reduce refusal behavior by methods that one would rather not have done on their child (similar to force feeding topamax, which is when I used to be a sobbing mess) so this ought to be interesting. They have a developmental play room, where they do pre school type teaching and playing, and you can get "leave" for up to 4 hours a week to go out in the community. That will come in handy so we can see our friends! The current recommendations while we are on the waiting list is to start a timer method for feeding, and have feeding be done when the timer is up, not because she has refused. That way she starts to associate the timer with end of meal. The second is that we drop a bottle of pediasure a day and replace it with either water or milk. I was planning on transitioning her to milk when we got back anyway, because I know she doesn't need the psure outside of the vitamins and minerals (which we can supplement easy enough) So we are going to start that this weekend I believe. Going to try and mix milk and psure and alternate water and milk to drop a bottle of psure. She was 22 kg at her appointment. (that may be off slightly because she had a wet diape and was fully clothed, but I don't believe it is that far off) I've been saying I thought she was around 43-44 lbs lately. Don't ask me what the exact conversion is. She was also 38.4 for length. She is above 99th percentile for both. My big girl. Needless to say, she doesn't need the high calorie drink now.

While we were in MD we got the opportunity to meet some friends from the yahoo group and facebook. We met Chrystal and Robbie in Jersey on the way down, who kindly drove out to meet us and give us leftover Vigab she had. In MD, I got to meet one of the first moms I ever started talking to, Tara. She is one of my biggest heroes. We (of course) got coffee :) The kids weren't with us unfortunately, Aiden was at school and Charli was at the hotel napping with my mom. Later that day Kari came to the hotel with JayJay and the kids got to see each other and I got to meet another amazing wonderful mom and great friend. I love them all so much. Charli was so cute with Jay, she was staring at him and rolled over and grabbed his hand. I've never seen her interact with another child like that. I truly believe she knows how connected they are, and their moms are. I can't tell you how excited I was to take this trip, not just because of the eval, but because I was going to be able to finally hug some of my super moms and kiddos.

So it looks like we will be spending our summer in MD. Hopefully it won't rain like it did on this trip. I had to trudge thru some serious water to get to the car, and they (the hotel) had the most ridiculous pump set up to try and drain. It was hysterical. (see pics lol)

Well, I think I will start reading my ABA book I just purchased so I can learn a little bit about what we will be doing. Good timing on my part!

As always, thanks for reading about my little (well, not so little) monk.

top o the blog ta ya.

2011-03-05T19:16:00.001-05:00

Currently it's 717p and I'm fighting to stay awake. I'm so lame. I'm also drinking far too much coffee lately. (a hush falls over the crowd) I know. I can't believe I said it either.

I feel like I am getting/fighting some variety of stomach bug. Nothing horrible yet..just feeling a bit off. But there are some nasty flu bugs floating around. I don't have time for that shit. I'm leaving for Maryland in a few days..and can't be sick.

I was going to fold the laundry, but with most things today I've decided it can wait til tomorrow. So I'm blogging instead.

I've been having this mixed source of emotion today. Part of it is an overwhelming sadness, something I can't put my finger on. The other part is joy, being grateful for the absolutely most amazing group of people I could ever have imagined meeting.

My facebook has 600 some odd people on it, and of them I feel a connection with almost them all in one way or another. Whether it's music, school, family, or the biggest collective of seizures, or stroke, or developmental delay.. I love each and every one of them. I often hear about how all I do is bitch and whine and complain on fb. And yea, I do. But I do that because I know I CAN. I know within a matter of minutes there will be a mom or two to leave a kind word, or tell me they are having a bad day too, and dr's suck, and reports suck more. I know that it's a safe place, where i can speak my mind and not be condemned for it by most. (Most.) I don't mean to be negative all the time on there, and I certainly try to share the positives, but if I weren't comfortable with it, and with my friends, I wouldn't say anything at all, and then my page would be barren and boring. And who wants that. I have a core group of people that I talk to on usually a daily if not every few days basis, and without them I don't know how I would function. I get up in the morning and look forward to seeing their statuses about how their nights were, how work was, how the kiddos slept, and before I go to bed I do the same, to see how seizure control was, how kiddos are responding to meds, what fun things did someone do, did someone have something nice happen and smile. I LOOK for the good. I may talk about the bad, but I look for all the good. And I let it in, and cherish it. Because I am able to share with all of my friends their good. Just like they share mine when I post. It gives me hope, drive, fight, laughter, sometimes sadness...which just strengthens my resolve and fight.

This week I'm going to Maryland, and I am finally going to meet some of my core crew. Friends that have been there since day 1. And I can't wait. I've been wanting to get down to Maryland forever now, and it's finally happening. I can't wait to see what this eval brings about, and I can't wait to finally hug my friends and meet the amazing kiddos whom I love so much.

This week has been long, even tho it was short. I didn't get the baby back until Tuesday morning, but she hadn't been feeling well and sleeping even worse than usual, and I haven't been feeling well, then fell..it was all a big mess. Then I got the report from Opth in Boston. Normally I don't have issues reading reports. I'm used to it. But this one mentioned a "right visual field deficit" and that she was "properly registered as legally blind". I've had reports knock me on my ass before...that's why I don't usually read IFSP reports and I hate IFSP time (as I'll hate IEP time just as much) I don't need people to tell me what's wrong with my child. Call it ostrich syndrome but sometimes I just dont want to hear it. Then it was with mixed emotions I saw Heather post Jakes Help From Heaven and the First Annual Fundraiser. I'm so incredibly proud of Heather and Brian and Ethan for organizing this. But we shouldn't be having this. He shouldn't be gone. None of them should be gone. So it was with great pride and sadness I registered us. But I know it will be a wonderful event, one celebrating Jake and all the love that people have for him, and all of the good that his parents are doing by starting this foundation.

I was also asked the question "do you ever think you will have any more kids" this week. Obviously for those of you that know me really well you know I am going thru a divorce, so now it is not an option no matter what. But truthfully, I don't know. I'm scared to freaking death about having another child. I always wanted 2. But the unknown is too much to deal with. So I automatically answer no. Done. This baby baking machine is off. But I don't know. I assume that is the case. But I don't know. And that makes me sad. Because I would like for Charli to have a brother or sister. But I couldn't do this again. There are days (and they are far more frequent right now) where I can barely do this. So many times lately I have just wanted to throw in the towel. Wave my flag. Hide in someones suitcase and land on an island like Lost. Because I've hit (well, LONG LONG AGO..like 4 surgeries ago) my breaking point. My daughter is tough, and amazing, and beautiful, and strong and resilient. And I take all of that and I hold on to it with all that I am. Because I feel weak, and tired, and lost. Therapy is driving me nuts lately. Time changes, tardiness, missing sessions because of illness, or weather, broken car seats...it's all driving me nuts. 18 therapies a week. That's a lot of Frackin therapy. And now I'm trying to shuffle them around because when Charli was younger, she didn't do well in the mornings..so they are all clustered in the afternoon. Now I'm trying to space them out a little bit so they aren't so clustered because it's just getting to be too much. Horse therapy just moved to Mon from Thur today and a different time, OT is changing their Thur time, and Speech is trying to come Wed instead of Thur. Respite starts this week THANK GOD. I use my respite so I can go see MY therapist. Because let's face it folks, if you think Im going thru this without the help of a professional and medication you are all looney. So Respite Tuesday, leave for MD Wed, eval Thur, come home Friday. Next weekend is my Early Intervention Training Partners Session III in Saratoga...that will be fun. We have a dental appointment for Charli scheduled for the 28th...that oughta be interesting. Then we leave April 9th for Detroit for a week. I know there are some other appointments in there as well. My glasses will hopefully be in on Mon or Tues so I can actually see when driving at night (always a plus), I have my list for MD ready to go just need to have the Cheese home so I can start to pack her bags.

Totally off topic, but I'm also getting very restless with my house. I bought a painting tonight and some frames to print out some pics and put on the walls, because ever since I re-feng shui'd the living room my walls are bare. And I am itching to finish her room, and maybe even put her in it. That will be odd. She has slept with me in our room since day ..well, 14 since she came home from NICU. I want to get that other room done, get a new couch, and get some paintings and prints up. Spring cleaning and re vamping is starting! I have to finish stuffing envelopes for the Shining Star Epilepsy program, hopefully Stroll Committee will start up again soon, and its almost spring which means camping weather!!!! WOOOOHOOOOO. That will be the first thing I do when it's nice on one of my weekends. I need to get my camp on. And thankfully thru fb I have some new peeps to go camp with. yay! Well, I guess I've blatted on long enough... I think I will say good night, thanks for reading..and go to bed. I'm going to try and sleep off whatever my body is fighting.

PS how come no one told me Nutella is one of the most delectable items EVER. shame on you guys.

Good night my wonderful friends. God Bless, be well, safe, happy and healthy. xooxo

the doctor.. taking care of mommy to take care of the monk

2011-02-28T08:41:00.003-05:00

My baby should be on her way home right now, but I asked her dad to keep her one more day to allow for the antibiotics I got yesterday to kick in. Sinus infection, possible ear infection and bronchitis. Joy. I'm going to attempt to sleep it off today. We have LOTS of appointments starting this week (March Madness begins) so I need to be as close to 100% as possible.

I miss my girl sooo much. But I know she is having fun at Daddys.

So today is the end of Bearduary, but there is still time if you want to sponsor the beard growth. Click Bearduary, then Charities, and donate a few bucks to the Epilepsy Foundation of Northeast NY. It is greatly appreciated. Again, thank you to my wonderful friend Bob Buckley for this awesome opportunity to help one of my favorite causes.

Today is also Rare Disease Awareness day. Click here to learn more, and how you can become a Rare Disease Ambassador.

Sooo ...for this week we have therapies, appointment with our local opth, and next week we are finally going to Maryland to Kennedy Krieger for the evaluation to get into the feeding program. I'll be there for a few days, but the programs have a 4-6 month waiting list, so it will be a while before we actually get in. How I maintain my sanity until then will be the trick. Charli refuses to even attempt food now. She used to love cereal bars and puffs, now she wants nothing to do with it. I have anxiety when I'm trying to get her to eat like I used to trying to get her to take her topamax. I know it will come..I just need to give it time and let the pros deal with it. It's just so hard knowing what she is capable of and knowing that she just doesn't seem to want to. But hopefully we will get at least some ideas when we go for the eval. I know nothing major will happen until we get into the program, but I'm desperate for anything at this point.

And for my next trick...I have decided (as part of my Early Intervention Training Partners intercession homework) to make one of my individual leadership goals starting a local chapter of the hydrocephalus support group. I wanted to focus mainly on pedi but I figure why exclude. I have already been in touch with a physician who would be interested in being part of the medical advisory board and speaking. YAY. Now I need to track down more professionals and get some parents. I started a facebook group (Hydrocephalus Support Group Upstate NY) but I don't have any members yet :( If you build it, they will come. Eventually. Maybe if I tell them I have girl scout cookies.

In the meantime, I think I am going to stick to my plan of sleeping off the sinus infection and go nap while I can.

Remember, it's not too late to sponsor the beard! Beards rule. SEIZURES SUCK!

The Mighty Monkey: Bearduary

2011-02-21T22:29:00.000-05:00

The Mighty Monkey: Bearduary

Bearduary

2011-02-21T22:02:00.002-05:00

In case you aren't on facebook and haven't seen the most AMAZING friend make the kindest gesture in growing a beard and having it sponsored with all proceeds being donated to the Epilepsy Foundation of Northeastern NY.. I give to you a link. To behold the beards. And the kindness and compassion. And the awareness. Bob Buckley, a friend of mine from "the good ol days" is kindly donating his face and facial hair and TIME to our cause, and raising much needed funds for the EFNENY. I really can't accurately get out how touched, honored, grateful I am for him doing this. He made a video to promote the last week of Bearduary and I balled thru it. To have someone, totally outside of our situation, take the time and energy and devote it to our cause, our mission of fighting epilepsy and supporting our local epilepsy foundation... I can't even explain what that means to me. I wish I could put in to words what my heart wants to say but it isn't enough. Bob has always been the sweetest, kindest most amazing soul I've ever known. Someday I hope to find the words.. and to thank him (and his wife for supporting the beard too!) and to all of those who donated, THANK YOU! I just can't say thank you enough.

Now to my wee one. I NEVER find myself questioning surgery,or anything that has happened since then. We have made steady, consistent gains and progress since we left the hospital. With the exception of the triple shunt revision frenzy this fall, she has not regressed hardly at all. Except for one thing. EATING. I would be lying (and lord knows I will always tell you all the truth..because, that's what blogging is for!) if I didn't catch myself complaining about it lately. I'm not complaining about surgery.. it's just that she has consistently and steadily lost her interest in eating, particularly with self feeding, tolerating oral stim, taking food off a spoon etc. I was looking back thru pics and I found pictures where she was feeding herself with a spoon, she was holding and eating her teether feeder, a bitter cookie. I don't get it. I don't understand why THAT of all the things that could've regressed that was the one. And now I'm stuck. I have an almost 3 year old getting ready to go off to program that doesn't eat. It's SOOOOO frustrating seeing those pictures. I think a lot of it aversion from being in the hospital. I can't figure why she would just not want to eat anymore. We are going to Kennedy Krieger in March for an intensive feeding eval and I know they will be able to help. They are top of their game. I expect to leave there with better methods than what we came in with. It's just so damn frustrating because everything else is going great. It's all wonderful.. Just the oral stim/eating piece of it. Sigh. I know it will be ok. I just don't know what to do anymore. I guess we'll find out when we get there.

March Madness indeed!!!!

2011-02-17T19:29:00.002-05:00

In like a lion, out like a lion. March brings about our busy season, if you will. Almost all of our out of town appointments begin (again) in March. It's much easier to travel at the end of winter obviously. So far we have local opth, audiology eval, and Maryland feeding eval. April is Detroit (yay!)

It seems like we have something at least every week starting the beginning of March. And, I've decided she should have a tricycle. She has figured out how to spin the weeble elevator with her foot. If she can do that she should get the trike down no problem. (she is, after all, a very smart cookie).

So my new super mom trick will be to make that happen. Somehow I don't think it is going to be as easy (and by easy I don't mean easy) as the Kimba and the bath chair. But, if we know one thing it's I like to fight. And fight I shall.

First, I think...is bed. This past week I thought Melatonin would bail me out of non slumber land...but no such luck. It's worked ... to a degree, except that now she is just falling asleep earlier and waking up earlier to be up all night. Not quite what I had in mind. We got back to almost schedule tonight with naps so I'm hoping that she will fall asleep at daddy's at a good time and sleep thru the night. Hoping even MORE that when she comes home she'll do that. It's one thing to be in the ER or the hospital and stay up all night, but when you are home in your jammies somehow it just becomes that much more difficult, and suddenly every minute seems like an eternity. Thankfully I'm fully stocked on K Cups right now.

And everyone wonders why I've been going to bed like an old person. Cuz my night owl likes to par-tay. At college hours. zzzzzzz...

Night all. xoxo

Wonder what Molly is doing... (hopefully sleeping, like I should be)

2011-02-13T02:20:00.004-05:00

so before you click here get some tissues. I was fully warned before watching this even shorter version of "where's Molly" in my EI Partners class today, and I thought.. I can tough it out. I won't cry, not in front of a room full of strangers. I'm good. Not so much. This short, very briefly worded clip with haunting music and even more hauntingly somber music, is a tear jerker no matter what. It made me want to walk out of the building and drive to Larry's and hug Cheese. I can't imagine what life must have been like for those who were dealing with or had a disability before modern times.

Institution. Think about what pops in to your head when you hear the word. The associations you have with it from movies, TV. Big sterile buildings, full rooms of people wearing white, drooling, rocking, yelling. Or worse yet, just sitting. Relegated to what is the space of their own body and that is it. Left there. To just be. Not to be the best, or be everything they can be.. but to just be. Because that is how they handled disability back in the day. Or mishandled. And maybe I'm shaking my mommy finger and saying shame on you out of line, but as a mommy of a special needs, highly medically complex child...I don't think it's wrong for me to pass some judgment.

Part of this is why I try so hard to make sure Charli has every available opportunity we can get right now. Because I know she is more than just being. SO much more. So much life and progress and opportunity. And I also know that isn't the case for everyone, and not everyone has the ability to be home all the time. But something about the way it was handled before is just so heartbreaking. Not something, everything. They didn't HAVE what we do. The tests, the multiple diagnoses. The ability to participate in a society that once said you have to go be in a home with other people who are just like you. Just that alone is reason enough why we should proud. WE DON'T tell people you have a disability, go hide. Or hide it. We stand on corners, or shout on rooftops, or facebook and tweet our causes. We don't put it in a room and pretend it doesn't exist. We join panels and support groups and meet other people because we WANT to know MORE. We want to know that there are OTHERS out there. In essence, what we have now may be almost harder (i know, not really) but it's hard to find others that understand the situation you are in sometimes. Sure everyone wants to get it, or tries, but they don't. Unless they are in it. And unless you find people who are dealing with it too... you are on an island. It may be an island you choose to put yourself on, but it's an island none the less. Alone. I'm not ashamed of all we've been thru. I know that what we have been thru has been hell, and we have all come out on the other end. I don't want to stick my head in the sand and pretend it didn't happen. I did that in the beginning actually, which is why the small part in the back of my head understands some degree of "Where's Molly". Because I wouldn't even acknowledge that Charli had a stroke for the first five months of her life. If I didn't say it, it didn't happen. At the time it seemed like I could get away with it. She was seemingly unaffected by the stroke. Everything could be fine. I could just pretend like it was a glitch in the mainframe and none of it happened. But reality was December 26 2008, when she had her first seizure. Her first of what would be (one could only speculate) hundreds of thousands..maybe million or so seizures. When she started to grow larger and show that left sided preference (that doesn't typically emerge certainly before a year) It was then that I had the fight or flight response. And that time I choose to fight. And fight like hell. And not ever turn my back on it again, because if I do, it could sneak up and knock me right on my ass. Well, it has anyway at times, but this time it wouldn't be because I was sleeping on the job. I threw myself into research, groups, learning as much as I could. I tried to get as many therapies for her as possible with the possibility of severe damage lurking daily from her seizure activity. New catastrophic diagnosis brought about the ability to have more services, and I gladly ate up all time slots I could...to the point where it was, and probably is too much. But we need it. I need to know what to do with her, and we need to push her. Look at where it has gotten us! Since May, my girl who didn't talk babbles and jargons constantly, rolls ALL over the place (she hadn't rolled since she was four months old) has at least 20-25 words, 5 of which are functional. She is holding her own bottle, She is sitting up unassisted (wish a spotter.. but still...she sat up in the IFSP the other day for TWO hours playing with her IPAD) It's because I researched my ass off, and talked with other parents that I found Dr. Chugani to begin with. And that brought us to Detroit, which brought us our miracle. It will be bringing us to Maryland soon for a feeding evaluation so hopefully we can get some good insight on how to properly go about feeding Charli, and what her possible areas are that need work. And what is causing her stomach issues would be nice to know too (which I guess I do..it's more of what can we do that we aren't already doing)

I guess the really messed up point to my rambling is that she is my life, this is her life, and I am going to make it the best life possible. We all are. Here family, therapists, doctors. Charli inspires me to greatness. I want to do everything I can to advocate and educate people for her. I want people to know there are options, you dont have to like your dr, or listen to what he says. That there are surgical options, that there are new drugs coming down the pike all the time. I want to do as much as I can parent to parent. It's a hard road to start on , but as you travel down it eventually you realize it's not all that bad. You meet people that get it. That understand You. And then maybe you decide someday you want to do something... like me. I try to be as active with the groups and push my causes when I can. Everything I do I do for Charli, and I just want her to be a happy, smiley little girl like she already is.

I kind of just lost my ooomph for blogging, getting really sleepy again.

I think, if you have a child with a disability, you should watch the movie. It's heart wrenching. But it's worth the time to stop and appreciate the world we live in now, and how lucky we are and how lucky our children are.

I think it's time for bed again...

Not solely what I wanted to blog about, but there is always another day. Makes sure you go see Molly

It's 4:04 and I can't sleep

2011-02-02T04:04:00.002-05:00

and to end on a happy note...here is our first ever sleigh ride

I hate it when we get up at the ass crack of dawn, and then she falls back to sleep but I can't sleep. Don't ask me why. I should be able to sleep where I stand for the 3+ years lack of sleep I've had. But alas, here I am with my coffee (and sugar!! for those who follow my fb) intermittently blogging and trying to find a place to stay in Baltimore. I've been filling out release of records forms which is boring the hell out of me. I think I have all of our KK paperwork for the most part figured out and done. Just a few more parts that Tracy will help me with and that's it. Then it's Boston next week for a clinic appointment with Dr. Fulton (of course we don't have an ERG scheduled until May-ish, whenever that schedule opens up..maybe March tho) and our VEP is in August. Then the following week we set off down south FINALLY to Maryland. The one place I've been TRYING to go the last few years. I finally found a good medical excuse to go and visit friends. Since Charli was diagnosed there have been a few moms that have been my "core group". Carrie O,Carrie M, Cara, Jen, Danielle, Chris Tucker and the CHOP crew, Tara, and Kari. I can't remember a time they weren't around, listening to my every whine, whimper, cry, shout, laugh. They have been thru it all with us. Since then, my core group has expanded GREATLY with the most amazing group of strong, wonderful women (and some men!! Don't want to exclude the guys!!) and the most beautiful, handsome, amazing strong kiddos. I've been blessed to be able to "meet" the people I have on facebook. Now I will be blessed in actually meeting my MD family. MD has a VERY special place in my heart. My MD family has been so incredibly available and supportive. I feel like I know them, and have known them my whole life. We laugh, we cry, we bitch, we talk jello shots...We've talked about living on the same street. My wait is soon over as I get to go and not only have the Monk evaluated at one of the top feeding disorder institutes, but I get to meet my precious MD family. I can't wait. And it couldn't have come at a better time. (or worse, rather) Kari was just told by doctors that her son, JayJay, has a rare (extremely) disease called Gallowy-Mowat. Less than 50 cases, with no identifiable gene. Right now he is in kidney failure. My heart is in failure now. This breaks me on so many levels that I don't even know if I can accurately convey it. In a world like ours... Holland, we expect things, yet we don't really know how to deal with them when and if they occur. The thing with Holland, it could be anyone of us, at any time dealing with this kind of news. Some of us have already had it. No words can say how I feel...how my heart aches for Kari and her family, for Jay, for us moms who see his pics and hear his updates, for those of us who consider them not only friends, but family. I am so thankful that I am able to go to Maryland and see everyone in the next few weeks...because I just want to hug and squeeze JayJay and give Kari the biggest hug ever. And kick back a few jello shots. Our group has suffered so much this year. These last few months. If I haven't said it before...I EFFING HATE SEIZURES, I HATE CHILDREN BEING SICK. It shouldn't happen. I have said this before so many times...I'll take it. All of it. Leave them alone. PLEASE. I'm tough..give it to me. I will build all of their protection with bloody hands. Because they aren't just support for me, or "social networking peers"...they are all family. Every one of them. Even all the new people who I've just added, or who just added me. Family. We are all joined by this in one way or another. We all rely on each other so much. Like Family. Ok, I need to stop because I'm going to cry and that is not good cuz I won't stop.

I guess I'll go watch some tv til the Chooch decides to wake up. I think my mom is coming over today.. (yay!) so I can nap, and brave the blizzard of 2011 to hit up the grocery store. We've gotten a LOT of snow the last few weeks. Today we are due for up to a foot. Ay ya. Ok. I'm going to go make my hotel res. for MD, and make my list of things to bring. Cuz before I know it I'll be on the road headed south. Heading to what I feel like is home.

xoxoxo

Random....

2011-01-31T21:26:00.003-05:00

I tried yesterday to promote my friend Stacy Fulkersons new page and the link didn't work, so I'm going to give it another shot. Click here for her FB page.

Make an on-line slide show at www.OneTrueMedia.com

A quickie montage I did the other day about the first 6 months of Charli's life, Life Before Seizures.

So, I have multiple calls in to Boston....we are NOT scheduled for an ERG like I thought we were so that makes our trek to Boston on the 9th somewhat a waste. I'm waiting to see if they can get us in another date in Feb or we will have to wait til March. I left messages all over the place down there. Haven't heard from anyone. Trying to set up our Perkins appointment as well. KK should be all set, just trying to plow thru the tons of paperwork and get the records I need. I really don't have that much time to get all of this done. Leaving in 2 weeks. For an unknown amount of time. That is kind of hard, not knowing when we'll be back. And it sucks cuz it's just her and I....but we'll get thru. We always do. ANNNNNNDDDDD I get to see my MD friends FINALLY!!!!! After all of this time!! I can't WAIT. Not only am I SUPER excited about the program, I am so thrilled that I get to see my friends down there. I figure we will be down there at least a week or two. That reminds me, I need to make a list for our trip..I was going to do that earlier. My brain is mush tonight. My heart is overruling everything and I'm zombified right now. I've been whiny all day because I'm lonely. I love Charli more than anything in the ENTIRE WORLD but i'm lonely. I want someone to ask how my day was, to be there for me. To give a shit. Because it's been a long time since I've had that. It's come and it's gone, and at one point i thought this is it...I found the one who can handle it...and he ran faster than a person allergic to bees fallin in a hive.

Live and learn I guess. Dont date friends...no matter how well you know them, or how long you've known them. Don't do it.

And On that note, I think it's time for me to say good night. Be well, stay safe, seizure free. Love you all!

well...It's 230a, which means it's time to blog somewhere...

2011-01-31T02:33:00.002-05:00

I suppose I might as well blog since my night owl has decided it is a good time to get up and play and have a snack.

I of course got coffee and half and half yesterday, but neglected to get sugar. It's going to be a long day. If it isn't freezing and snowing horribly I might have to round up the monk and go to stewarts and get sugar. Unless the sugar fairy decides to pay me a visit.

So January is coming to a close (doesn't seem possible!! I swear it was just Christmas) and I am CERTAINLY not complaining...but this brings February and lots of trips for my traveling gal. But first, I have some things to discuss.....

Cure Rayan A very good friend of mine is asking that people get tested for a possible bone marrow transplant... a 3 year boy was just diagnosed with Acute Lymphoblastic Leukemia. A bone marrow compatibility test is free, painless and takes 30 seconds. Gender is not relevant, but SOUTH ASIAN ETHNICITY (Pakistan, India, Bangladesh, Srilanka etc) is very important, due to the under-representation of South Asians on the national donor registry.

Second... another VERY good seizure mom friend of mine (Stacy Fulkerson..mom to James who is super cutie) and who is HIGHLY creative and helped me soooo much with my epilepsy montage and by making all of our purple ribbons is making hooded towels and will be making memory blankets (send her your favorite outfits instead of boxing them up and have a beautiful blanket made!!) For information you can email her here

Next...if you are from NY specifically the capital district, Troy Pride shirts are now available thru McPride Apparel. Or if you are Irish and want to sport some sweet Irish gear and do it proudly, order now. Kids sizes available and a new line Binky Rose is coming soon. Check him out on facebook. And I can guarantee your satisfaction...the owner is Charli's Godfather. :)

Notw that I think I got all of my current promo out of the way, time for what we are up to. February is the start of our busy season. Once the snow (in theory) starts to taper off we get movin again with our out of town appointments. February 9th we are in Boston, although I'm not sure why. I actually need to call TJ today and figure out what is going on because we don't have any tests scheduled, so it is kind of a pointless trip I think. The following week we are off to Kennedy Krieger and the Feeding Disorder Program. I am VERY excited about this trip. While we may be there for a few weeks, they are recognized as one of the top institutes in the country. I am very excited to hopefully get to the bottom of why Charli doesn't want to eat and to learn ways for us to help her get the food she should be at almost 3 years old. It took me a while to figure out where I wanted to go, and what program would be the best for us, and even tho it means we may be out of town for a few weeks I think that this is the best fit for us. The goals they have are almost 100% of our goals. I have a very positive feeling about this trip. Not that I'm looking forward to being gone for a period of time...and when we come back we will be scheduling and headed out to Detroit hopefully for March or April, plus most likely another Boston trip...but Detroit I am 110% looking forward too!! I can't wait for Dr. Chugani to see her. They aren't going to believe she is the same little girl!

Another thing on my mind and stressing me is our transition out of EI into CPSE. I actually just sealed an envelope going out to Deirdre (my first service coordinator who is now the EIO) about our transition paperwork. :( I can't believe we are getting ready to transition already. Our last IFSP is Feb 7th. I remember when we came in around 6 months I thought 3 seemed like it was forever. Now I can't believe it's 6 months away.

Well, Charli has decided it might be good to sleep after all...so I guess I will too. On a good note, her GI issues seem to be resolving. Not sure whether it's the Flagyl because all of her cultures were negative, but it's working, so I'm not messing with it. So that is a huge relief. And, we will see GI when we go to KK so I can address her motility issues finally which I have been dying to do!!

Well friends, I guess I'll go try and sleep... and look forward to rationing sugar packets that I found when I get up again. :)

Nite all

abstract. sometimes it's all I know.

2011-01-22T08:56:00.003-05:00

In taking this picture my thought was how beautiful it was. Snow sparkling in the background...a single stalk standing out among snow much scenery. And then I realized why it called to me. Resilience, strength, waiting to flourish when the sun from the spring hits it, not even a kink or bend from the high wind and all it has had to endure. Sound familiar? I thought so too.

My daughter. The ER visit on Thursday was hell. I can honestly say I haven't been this drained or this anxious/stressed in a long time about anything with her condition.

But like that pictures. She remains steadfast in the face of adversity. Always. She is strong, happy, determined. She had 2 failed IV attempts, a straight cath, couldn't eat for HOURS in case we had to go into surgery, a CT, and a shunt series, and when they came in to try the second IV she was sitting up playing on the stretcher. And when she feel asleep she looked so peaceful, as if none of it had it even happened. Or she was so wiped from it sleep was the best escape.

My daughter amazes me. I watch her, listen to every noise in amazement. My baby...who they said wouldn't do anything...is this blossoming beautiful child. And thru it all, she smiles. That amazing, beautiful smile. And she shows just how smart she is. she was grabbing her right arm when they were trying to find a vein like "Oh HELL no" and was hitting poor Cliff yelling "stop" and shaking her head no. Cliff and Jen looked at me because a month ago she didn't know how to do that. I said "yea, she's getting bigger" and Cliff said "she's so grown up now". Even the nursing staff and our known dr's are amazed at her. Before she would have just cried, and been sad. This time she was hitting them, telling them stop and no, calling for her dad. Amazing progression since the last few ER visits.

My daughter is amazing. She is my life. My reason for taking breath everyday. She makes me smile even when I don't think I have the energy or one more smile in me. She is my everything. I love her more than anything in this entire world. I hope she knows it...at least just a little.

The Monkey Mat...a photo tribute Part 2

2011-01-15T20:18:00.003-05:00

So I did it today.. I moved the monkey mat. Took the tree down yesterday, vacuumed today, washed all the blankies, and rearranged all the toys in a big girl way. Bought a couple of new storage bins (her latest obsession is dumping things out and putting things back in.) Surprisingly I didn't cry when I did it. I've been rather ok with the exception of different flare ups for various reasons (thank you ABILIFY!!) NO seriously, thank you. Stuff really works. As evidence by I'm not a sobbing mess anymore like I've been the last few weeks. I'm of the school of thought that if a med can fix it I will take it. Sure therapy and yoga and finding my chi and all that is important. But so are my meds. I'm not ashamed of it. I think after all that my family has endured the last 3 years I'm entitled to need meds. And while I don't attribute my sanity (HA! That's funny. sanity. ) to meds since I'm still obviously nutso I don't give my meds all the credit. A certain amount of adrenaline, persistence, strength, and I don't even know what has kept me going through all of this. *yes, obviously the baby has*

Anyway, I digress. These last few days have been rough. Again, various reasons account for my facebook statuses at any given moment in life... but currently my heart is heavy for several reasons. Heather and Jake. I think about them everyday. I've been talking to Jakey a lot the last few days, as a fellow mom and her daughter (Keely and Sara) have been in PICU battling infection and seizures and heart problems. I've been asking everyone I know to please pray for them, think of them, send healing powers. It's worked. Sara has been taken off the vent and is on NC O2, no fever, and starting to get better. Keely is sick herself so we need to keep praying that she feels better and can return to the hospital. If there is one thing I understand more than anything it's when you are sick (or injured as I've been) and can't be there..especially when you are in a hospital situation. Back to Heather and Jake. Everyday they are in my thoughts, and everyday I wish I could do something...get my prayer warriors to pray him well.. give her strength, take care of them all. I know in time, it will be ... whatever it will be. It will never be ok. It's not ok. Frankly, it F*cking sucks (excuse my language). I saw a post on fb about a girl in college who just passed away from SUDEP. Sudden Unexplained Death in Epilepsy. These are the things that we FIGHT AGAINST. NOT ANOTHER MOMENT LOST, NOT ANOTHER LIFE TAKEN. There is no ok in this. It will never be acceptable, we will never feel better about it. There was no GRAND PLAN. It sucks and I don't want it to be like this anymore...and I can't even begin to imagine if this is how I feel how she is feeling. I just hope she knows how much she is loved, and Brian and Ethan, and most importantly Jake. My angel friend. We love you.

Then there is this whole EI training project, which is stirring up some latent seizure monster dust in the back of my head (hence the video) Because while it seems like forever and a day ago, it wasn't. It wasn't that long ago that the monster was breathing down our necks constantly...lying in wait...no matter what we did... subclinically firing every 2 seconds. Try counting it out. one one thousand, two SEIZURE. that fast. I've been recalling a lot of the early days lately. I don't remember who I was telling the other day , but I said when I was keeping a seizure journal (which at the time seemed like a good idea) I couldn't write as fast as she was seizing. It got to the point where once we hit around 300 I would just give up. One is too many. As I was in my webinar today for the EI partners project we were discussing IFSP's and tx's, and service coordination yadda yadda yadda. And I recalled the day that I made the call to Deidre about getting rid of Jaime. I had issue with her since the beginning. But I had it. So many things about her set me off it's not even funny. Like when I told her you can't have her in prone unless she is on a boppy or something cuz when she has a spasm her head will slam forward. So she proceeds to put her in prone and trying to position her right arm when BAM. Head right on the floor and screaming baby. I won't even get into the rest of the shit because it angers me so much. But all of the memories, the early goals, the original eval, how I felt when I got the eval and read all about how below the mean and standard deviations etc etc. I laughed when they talked about not having goals be jargon, but be more family based. Not in my IFSP's. I get as technical as the tx's. It just makes me sit back and go "huh. has this really been my last few years? is this my life? was that my life?" because look at her now! Big sitting girl. Saying "pop" today while she was on the phone with me. And "Bob" lol (Trac- I don't know if you ready this but she said bob a few times LOL) When I brought pics in to her pediatricians office and picked up her script for her GAIT TRAINER I saw Dr. B, and he asked how she was. I was like "you wouldn't believe it! She is going development crazy!" he kind of chuckled and said "well, she looked good here the last time, I don't doubt it" so he was looking at the pics from the last few days, and I was telling him some thing she was doing..and in classic PROUD Dr. B form, he got misty and excused himself. And when he walked away I looked at the girls and I said " you realize this (waving the picture of her sitting up playing ipad with Tracey) is possible because of you guys. Because you are always on the ball with scripts, and getting me in here, and letting me talk to him and everything else you do!" and Danielle said "and his cell phone" I laughed and said "I bet he's sorry he gave that to me." it sees traffic from me.

She is doing so great. Except for the current explosive poop she has goin on. Not sure what's going on there. Daddy is calling the dr tomorrow. Hopefully it's nothing. She has been on SO many antibiotics since the beginning of November I get really worried about intestinal issues. But she is sitting up so much and motoring around so much now her motility has had to have increased. YAY! And there is no happy medium I'm afraid. It's either this or constipation, and constipation means flow back up of shunt...so explosive it is. Still not happy about it. Need to make sure it's nothing. She is so amazing. I love listening to her when I call for updates...she is in the background babbling like crazy. She cracks me up. I hope she remembers home when she gets here. Especially since I moved stuff around in the living room to make more play room for her. But her cribbies is the same. And our room is the same. It feels like forever since she has been here. My right shoulder feels fine now. My left is still tweaked a bit. But I'll deal. I need my baby home. I feel like I've missed so much of her life the last few weeks. I hate that. I hate missing anything. I know I can't be there for everything, but this was such a stupid move on my part by trying to short cut, and not just putting her down and THEN moving the chair. Totally preventable. I'm just lazy. And I paid for it. In pain and guilt and depression and missing my daughter for weeks. She has been in excellent hands tho. She has been having such a ball with her dad and grandparents. And playing with her cousin Carly whom she adores. It's been really good for her to be there. And I am very lucky to have them. But she is coming home tomorrow YAY!!!! I'm going to bed soon, I know I'll be up in the middle of the night tomorrow :) My night owl hasn't changed THAT much. And I feel a little stuffy. Probably more allergies from dusting today. But going to bed early regardless.

Charli coming home is like Xmas for me. I want to go to bed so it's tomorrow already. I still have to finish cleaning when I get up tomorrow. We have to move like half of her stuff back here from there that has accumulated. Although, we got rid of her toddler rocker yesterday. She doesn't use it at ALL anymore. She used to LIVE in that. When she graduated from bouncy and went in the rocker I didn't think she would ever get out of it. But like the chewie, she just stopped. She didn't want it anymore, It wasn't cool I guess. So no chewies, no more baby rocker, no more monkey mat, no more .... SHHH... , what a grown up girl I have coming home to me. I hope she knows how much I've missed her. And I will be glad to get her tx's back in here. I've missed all of them as well. Not that have missed anything with me really. I've talked to them all, and there really isn't anything going on :(. But I miss them anyway.

Well. I think that's enough. If you wouldn't mind, please say a prayer or two for Keely and Sara, for Joseph, and for Heather...continue to give her strength. And you can always pray that the Abilify continues to work ;) I'm not kidding!

Til the monkey is home..... xoxooxox

The retiring of the Monkey Mat. A photo tribute.

2011-01-13T22:19:00.002-05:00

20 Days old with her bff the "chicken" that cousin Nick gave her

Apparently you can only upload so many pics on Blogger. That's kind of balls. So this will be a multi part tribute blog. With my random babblings in between. The monkey mat has been with us the whole time. The one pick up there (with the yellow and while jammies) looks like she is playing, but it's a spasm. That mat has seen a lot of spasm activity, a lot of miles, a lot of love from Charli, and MUCH abuse lol. It's been to all of our travel destinations, several hospital stays, and has been a favorite since as far back as I can remember. She has the "chicken" right in the middle the whole time. Her favorite. I realized this morning as I was looking around that I have to retire the mat. She doesn't need it anymore. My little baby, who you could barely see on it in the beginning she was so small...my now independently sitting and playing with all of her other toys toddler... doesn't need her mat anymore. And I didn't know how to feel about it. I should be happy...she is progressing so much she doesn't need the "infant" toy anymore. She is a big girl, with big girl toys, and sitting up like big girls do. Suddenly, I realize, that while my baby was growing up and will be THREE in July I feel like I've missed it. because it's been all medical. all the time. 24/7. I don't want her to not have her monkey mat. Because that means she doesn't need it. And that means to a degree she doesn't need me. She can sit (with a spotter but still) and doesn't need me to pick her up and put her on and off her mat. She is holding her bottle now. I don't have to do that anymore either. Suddenly my girl, the love of my life and entire world, is a big almost 3 year old girl. And all I can think is scratch marks in the seizure log, and Keppra changes, and ACTH shots, and ambulance rides thinking she had an aortic dissection, and sitting in the waiting room bouncing with caffeine and anxiety as she had MAJOR RADICAL brain surgery...to make the spasms stop. To make what has kept her on the monkey mat go away. Suppressing the toddler, keeping her in the supine position, batting at her toys... like my baby. But the spasms are.. well... we know we don't speak of it. I don't like to even let it creep into my head. For fear of it awakening. Because you always have fear. There is always fear of the monster. The monster that made her stay on an infant mat and use infant toys, because it was keeping her in it's grasp. Not letting go. Until we saw the light, Dr. Chugani, Dr. Sood, Sarah... Detroit. Until we pried the monster from tired, strong, brave, amazing, miraculous girl. And let it go. And I realize now I need to let it go. Because it was the past. Part of a bleak past, which at the time had a bleak unknown future. But the present is big girl toys, and iPads, and using her AFO/SMO in the stander.. and getting bigger. Becoming a toddler. no longer a baby. But a little girl. A bright, shiny, happy, beautiful, amazing little girl. My little girl. I feel like I've missed so much. So much time consumed by seizure counting. When I should've just enjoyed my time and what she was doing... but how do you do that when you are watching hundreds and hundreds of seizures a day. How is that not the focus? It's not now. Now the focus is the amazing abilities that she is gaining. Like putting a ball in a toy. ASTOUNDING for me to see. My baby repeatedly picking up a ball, and putting it in a toy, waiting for it to come out to do again. And shining at a new iPad app that Tracey has, and weight bearing for Joan, and standing in the pool with Linda, and telling us "tap" so we play too. That is no baby. That is a little girl. My little girl. Who no longer needs her monkey mat. But I think I do. I'll keep it no matter what. But I think I'll keep it out, just move it so it isnt focal anymore. So it's more if she wants it she can sit and shake Mr. Chicken. Until I feel I can put it away in her "box of things". I feel like I've missed so much time with her in life somedays. 13 days in NICU, these last couple of weeks at Larrys. They (Larry and family and the therapists) have all been great in keeping me updated, and pictures, and phone calls home. And I go visit. But the guilt is killing me. The loneliness is only bearable now because I had to ask Dr. K to put me on something else because my Effexor alone wasn't cutting it. Weeks I've missed...months even because I was so focused on appointments, and seizure tracking, and my journal. I should get rid of that too...but I do find it's useful even still these days for ER trips to have what's been going on written down. When Charli comes home, she is coming home a bigger, smarter, cuter (as if that were possible!) girl. Who doesn't need her monkey mat anymore. Even tho mommy still does. It's like an old friend. One that has probably overstayed it's welcome ten fold...but I hate to box it just yet. Even tho I have thrown out most of the toys associated with spasms after surgery, the mat stayed. Because she LOVES it. So it will be close by. In case she decides she wants to go grab it and chew on Chicken or froggie. But the focus will no longer be the "infant mat" it will be the new play area with all (and I mean ALL) of her toys out to play with. The ones with balls that she couldn't use before because she hadn't learned it yet... she knows now!! She can roll about the house and motor all over now. My little girl. My teeny 6 lb baby girl, who looked so lost on that mat in the beginning. Is now a beautiful, smart, amazing girl. I am so proud to be her mother, and proud to have the family we do who does anything and everything they can for her. Both sides. And therapists that go above and beyond the call of duty for us. I'm so incredibly lucky. She is so amazing. I need to buy that elephant thing Joan has cuz she loves that. My girl. My big girl. That I love more than anything in the ENTIRE world. I am so thankful to Larry and his family for helping her so much, allowing the therapists to come out there while she is there. They have done so much for her I don't know how I could ever possible thank them.

So the next blog will have more monkey mat pics. and probably more rambling. For now, I think it's bed time. Good night my sweet Chee... I miss you. I love you.

It happened when? In 2010 (graphic...warning)

2010-12-31T22:32:00.007-05:00

Im not even sure how to accurately convey all that went on in 2010. I often think during the times I am telling our story people must think I have one very overactive imagination. I only wish that were the case.

I'm ending this year the same as I started. Alone with the Xmas lights on, drinking hot chocolate. My baby is with her daddy right now (hopefully sleeping). My heart and thoughts are all over the place. It seems every year I say that was the most trying year. I think this year definitely wins that title. If you had told me on Dec 31 2009 that a mere six months later my daughter would undergo the biggest, most radical surgery one can have, and come out of it smiling like she didn't just have half of her brain removed I would have thought for sure you were smoking.

But, that was 2010. Surgery. So much happened this past year. But really, it will be known as the year of the surgery. The life changing, life saving, life altering, traumatizing, most radical, amazing, glorious, miraculous gift we could have ever been given. It isn't often that you get excited about having half of your childs major organ removed. But I was. I was ecstatic actually. Because she was a candidate. Sadly, many are not. So May 26 after about 6 hours Dr. Asano came out to tell us how things were going, and to show up the pictures of her hemisphere. My daughters little brain, that never even was able to develop because of her stroke. Like Shel Silverstein... a big missing piece. But we found the piece that fit in Detroit with her surgical team. We had a rough go for a few days and she ended up needing a VP shunt...which of all the things this year that has been the most problematic.

Since Oct 28 she has had 3 emergency shunt revisions. One colonized atypical staph meningitis. A UTI that grew pseudomonas. And currently, as I type, Micro at Alb Med is keeping watch over the gram positive cocci growing in pairs and rods that seem to indicate there is some variety of staph or strept infection. That is really just a small sampling of the crazy that has been this year. With only 57 minutes left of the decade, I could easily be up for hours writing about all of the goings on in 2010. But I wanted to be in bed an hour ago, so I'll wrap this up quick I think. (there is a slight chance at the 48 hour culture mark we could get admitted so I need sleep NOW)

This year has been a roller coaster. Joy of meeting new friends, new children who share the same journey as Charli, new parents who understand how frazzled I am and totally get it. Sadness at the lives lost this year.....Jakey, Brex.. my school friend Jared, Todd, most recently the week of Christmas my Uncle John. Gratitude for the amazing dr's that are involved in Charli's care...specifically her pediatrician who if I didn't have I don't know how I would function. He is my angel. I trust him more than anyone in the world, and he knows my daughter quite possibly better than I do. The neuro and nsurg team at Detroit is beyond phenomenal. And an even bigger surprise was find a neurosurgeon who was at the Med Center who not only knew what he was doing, has a kind heart and personality and an amazing amount of patience, and wonderful bedside manner. I have nothing but the best of things to say about Dr. Adamo and the neurosurg team at Albany Med. It was a blessing we found him (or landed in the ER and he happened to be on that day) because he has saved the day twice with two of her revisions.

Sadness. Lot's of sadness. Sadness over loss. Sadness over seeing my baby girl fight so hard everyday of her life. Seeing her eyes pleading with me while they try for the umpteenth time to find a line. The sheer horror I felt watching her vomit from the hydrocephalus after her surgery and the pain she was in. Sadness because my family fell apart. Not for any one reason. Many, rolled into a newly wed couple has a baby born with a massively complex medical history. That is enough to tank the most solid of marriages. Pride- in watching Larry grow this past year with Charli, seeing him get more involved...like picking out Xmas toys this year that had therapeutic value instead of just buying toys. That was huge to me. I'm so proud of who he is for her. And we are finding our way back to being friends and doing it all for her together.

Anxiety. Cuz with shunts (and seizures) comes anxiety. I've spent many a day analyzing her behavior instead of just enjoying being with her. That is something that will change in 2011. I'm going to let her be. Just be a kid. Not a kid that has a catastrophic form of epilepsy. Not the kid that had a stroke. Not the kid that is missing half of her brain. Just a kid. A kid that is going to do Kindermusik, and go to play groups, and have fun. Because Damn it she deserves it.

There is no greater thing in any day of any year since July 1 2008. That was the single most amazing (and again, terrifying, chaotic, catastrophic) day of our lives. But it was the day my life started. It was the day my mom hat was on, and it soon merged with advocate mom hat. Mom. still seems weird. I forget sometimes I am a mom because I so often function as a nurse or medical professional. But that girl. That precious little curly headed girl is the most amazing thing in my life. And I will make damn sure that this year is good to her. Because she has made my life amazing by being in it.

So, while I didn't get out all that was in my head. I feel like I can go to bed now. If we get admitted tomorrow I'll need all the sleep I can get now. Good bye 2010...I have mixed emotions about you. Let's see if 2011 will treat us right from the start.

Happy New Years everyone. Be safe, happy, and healthy...and seizure free to all.

there is no way around it. I HATE this day.

2010-12-26T22:26:00.002-05:00

Nothing good, I feel, will ever come from this day again. Maybe I'm being over dramatic. Whatever. This was the single most horrifying, panicked day we had ever had. The first seizure. The first of what would be thousands and thousands of seizures. Of dr's, ER trips, ambulance rides, side effect, transport method, med changes, med increases, med decreases, The Beast that took hold of my life, shook it to its core, caused more collateral damage than one could imagine, and robbed my beautiful girl of months. Months of learning, developing, playing, sleeping, eating without gagging.

I know this day is long behind us. But the scars are fresh still. The memory remains like it was yesterday. I close my eyes and can smell the ER as we waited. I remember breaking in to the hospital at 11p to bring her to the floor because we were being admitted and security tried to stop us and I essentially told them to go eff themselves because my daughter needed treatment so they could either get out of my way or I would plow thru them.

Since that fateful day, life was never the same again. In any way shape or form. My marriage has fallen apart. For reasons not specific to any one thing, just that it was too much for us as newlyweds and first time parents to deal with. We choose to deal in different ways, and those ways just don't work together. I love him, he is my best friend, he adores our daughter ,and I trust him implicitly with her. But our marriage was slain by the beast. Friendships have been slain by the beast. People you think would be around suddenly fade off into the sunset. Although in the interim you meet TONS of parents who are JUST LIKE YOU and know just what you are going thru. So I guess it's kind of a good trade off.

Life. What exactly is that. Our life consists of 19 therapies a week. At the most we have 4 or 5 a day. Not much time for anything else. And the small amount of time we do have is spent for follow up drs appointments.

Larry and I have joint custody. He gets the baby on the weekends. I have such great aspirations for the weekends. I'll clean, I'll nap, I'll go to the mall and use a gift card, I'll go visit Joyce and see the babies. I end up on the couch watching NCIS marathons.

Dating. psssh. WHAT. who has time. Who the hell in their right mind would want to get involved in the constant chaos that is me. No one sane that is for sure. And on the few occasions where I've found someone who I think maybe, just maybe, this person is the one who can handle it. They can hack my craziness. They don't mind my quirky. They are ok with me being OCD stalker about my baby. And, inevitably something happens. Most likely me being the screw up I am and never allowing my self even the smallest bit of happiness sabotages it. I don't even realize I'm doing it. I always said I would be the crazy cat lady with the big old house on the corner and sit in my rocker and the kids would throw eggs at my house at halloween.

My focus. My only focus. That sleeping beauty in her crib right now. But I do admit that it would be so nice to have someone to swoop in and save me from time to time. someone who doesn't run the first chance they get because my usual sparkling demeanor (***cough cough BULLSHIT)) hits a snag because of what ever brand of stress is being thrown at me from life. I can't smile and nod thru it all. I have to vent. I have to get pissed. I have to be angry. I need to cry. Because otherwise I would end up the emotional Mt. Vesuvius and that would be good for no one.

So today. Day that I hate. Day that never ceases to amaze me the amount of horrible shit that can happen in this day. Not just in my life, but in others. Like the new parents I heard that were on their way to the med center with a seizing baby. Just starting their journey. My heart breaks for them. And I will be here for them for anything they need.

The only thing that I did that gave me a sense of accomplishment today was I went to visit Jakey. I left an ornament on his tree. Told him we think about him all the time, and his mom and dad, and brother Ethan. I asked him to please take special care of his momma. And that Charli and I will do our best here to make sure she is ok. Being with Jake was the only time today that I had a sense of calm. A sense that it will be ok. His energy is so powerful. I will persevere thru all of this for him, and for Charli, and for Heather. Because, when it comes down to it. I have no right to bitch about anything at all.

Next year I want to do something completely crazy outlandish and fun on this day. Sean Miller is coming with me whatever I do. He has a hard time with today as well. Next year we shall start a tradition.

In the mean time. I count the many blessings I have. My friends, family, my amazing support system of moms. Most importantly my beautiful daughter. The strength I know I have, the tenacity to keep fighting and power thru this depression that is plaguing me. A family unit that was once fractured that is healing, and coming together for Charli, and to support each other which is all I've ever wanted for Charli.

54 minutes til the 27th. This day is almost done. I've survived another one. Wounded today, yes. Hurt, yes. But I will recover. I will smile because I deserve to. I will rejoice in the fact that my daughter is healthy and happy. And I will start to prepare myself for summer projects which will keep me occupied. And that is always a good thing. Distraction is good.

Farewell December 26th. I'll see you next year. Not willingly, but we'll meet again. But for now it's your time to leave. And let me carry on the rest of this year and start the new year in a new and hopefully better frame of mind.

Take your cheer and shove it...just sayin

2010-12-16T21:37:00.004-05:00

Before I become a total downer let me start with this... I always love being able to show off the great advances and research that is done at one of the hospitals we go to. Kudos to CHOP for it's epilepsy research!!

Now, Christmas. There was a time that I loved Christmas. Heck, I even liked shopping. Wrapping, not so much. I enjoyed the lights, and the tree, and the Xmas eve traditions my family has.

Then there were seizures.

Going back, I had a hard time with this time of year because my grandfather died at Christmas time. Then my dad had his first heart attack December 23, followed up by a fatal heart attack in January the next year. I have been pretty down on the holidays with all that. If I am honest, I knew my first Christmas as a mom was going to be hard. My 5 month old had been only months earlier diagnosed with perinatal stroke and we were just trying to come to grips with the developmental delay. SO all of my big mommy thoughts of having this wonderful big first Christmas were already not going to happen. Second, we were (are) broke. So you can only do so much spoiling. But I bought 3 different Xmas outfits (including santa outfit) and went forward with Christmas Numero uno. My family celebrates Christmas eve, Larrys celebrates Christmas Day. Works out well. Our first xmas eve the baby was off. Very crank which was not like her at all. She was miserable. I thought maybe she was teething. Christmas went the same way...cranky. Not ripping papers like I had expected. I should've known something was in the wind. Dec 26 she went to get her 6 month vax. That night with a spiked fever came her first seizure. (complex partial) she became post ictal and slept for hours. And when she woke up she almost immediately went into a cluster. And that was my first introduction to infantile spasms. We went to the ER, where they told us that she wasn't seizing because they didn't see it. and basically tried to kick us out. I flipped. We went home, and as soon as we got home she immediately went back to back clusters with probably 200 spasms. Right back we go this time with covering pedi on our side who got us direct admit to the floor. IV in her scalp at midnight, and they did NOTHING that entire time. Dr Crappy Neuro came in, sat on the other side of the room and didnt care to see my video and said sometimes kids get febrile seizures, and because she isn't seizing now you can go. I said not without a med until we get an EEG. So he placated me and gave us Phenobarb. So he sends the little girl out the door who has a CATASTROPHIC form of epilepsy with phenobarb and no EEG. Now I've started to research, spoken to my pedi who I love, and I'm nervous as hell. It looks like it has to be IS. It has to be. We were right. Dr. Almost as ignorant as the other called to confirm the worst. Infantile Spasms with hypsarrythmia. Which brings us to now. Last year was slight better, her meds had her less in a fog so she was able to appreciate the goings on a bit more. But I dread the holidays. I dread this time of year. So much has happened and I associate so much with this time of year.

And then, as if life doesn't hand us enough shit. Jake. Everyday I wait for Heather to write Jakey a letter. And I cry, and I feel numb, and I want it to all go away. My friend just buried her son. Do I really think I should be all about holiday cheer right now. Eff no. I put up our tree for Charli. and lights. But my mind is so far away from here, my body would give anything to be anywhere but here. I want Charli to have a Merry Christmas, and I want to take the pain away from Heather...and I feel lost and useless. Winter as a rule makes me miserable, but this is a new brand of miserable even for me. I wish I could close my eyes and make everyone I know and love happy, healthy, and alive. And I hate that the holidays depress me like this now. I hope someday I will get better because I don't want to be like this when she is older. I don't want to have to fake it. There has just been so much pain, and loss, and trauma with this time period it's hard not to be affected.

I honestly can't recall a time I've been this depressed in a LONG time. The last few months with all the in patient stays and surgeries, the infections, my health has been crap...I just cant take it anymore. I just want for once something, anything, to go smoothly. I know. that is asking for a lot. I just wanted you guys to know that if I seem off this is why. Jakes death has profoundly affected me, and this time of year is horrible for me in terms of associative trauma. I am in AWE of Jakes mom Heather. Her strength and ability to write her feelings so openly amazes me. She has always been my hero. That will never change. And I thank her for letting me have the opportunity to know her and Jake. Because Jake is an amazing boy who taught so many people so much. Resolve, Strength, fight, love. That's just a few things that Jake taught the world. I know I feel better knowing that he is watching over Charli. But it doesn't negate the fact that it FUCKING SUCKS that he is gone. I would do anything to bring him back for Heather and Brian, and for his big brother Ethan. But I will help to continue on his story and legacy.

I hope I can snap out of this funk soon. I'm sorry guys. I know it's miserable having to read this. I just needed to get it out.

This blog is dedicated to Jake Straughter... a beautiful life taken too soon. NOT ANOTHER MOMENT LOST TO SEIZURES!

2010-12-10T21:39:00.006-05:00

This is Jakeys blog. His amazing, strong, beautiful mother Heather started this blog for him not too long ago. They are inspiration for me. The strength, resolve, love, patience, ability to still smile in spite of it all... it is what keeps me going. I have been on the Stroll Committee with Heather the last two years, and I consider a kindred friend. Seizure mom. And Jake. Sweet Jake. I am so thankful that you were a part of our lives, and that life allowed me to meet your amazing mom. She loves you so much. And I know how much you love her, and your family. I told Charli Thursday that she has a new angel in heaven watching over her. Listen for us.. RIP Jake

I don't really know what if anything is in my head right now. My heart is broken. The ability to form a thought or sentence seems to have left me. So I guess right now, I'll say this. My heart is broken. Reading Heathers last post to Jake.... I think I just went numb. Nothing you can say, nothing you can do will make this better. There is no making this better. They just lost their CHILD. As friends, and co seizure moms...what do we do. We sit back and we mourn this tragic loss. We figure out who to help a friend who is going to need support. I can't even imagine what they are going through right now. Nobody should have to go through this. No parent should EVER have to bury a child. The many ways of how wrong it is don't seem strong enough to point out the fact that children aren't supposed to get sick. Children don't leave. They get bigger, and different tx options, and they live. I want that for him. I know it's not possible, but I wish it was.

Jake gone too soon..... <3

All that, and a UTI, too.

2010-11-12T17:32:00.002-05:00

Wow. I need to blog more often. I just noticed tomorrow it will be a month since my last post. I should realize that nothing in life is certain, and know how much can happen in the blink of an eye. But a lot has certainly happened since my last post (when I was advocate, strong, soldier mom) A lot has changed.

They say writing (really any art form) as expression is cathartic. Honestly it's kind of painful to write all the things down that go on in my head, which is probably why I don't. Then I just see it in black and white, as opposed to the swirling incessantly in my head. But I do admit I feel better usually once I've pounded out a post, so here goes.

All was peachy in the month of September and beginning of October. Or so I thought. I had noticed things. Things that anyone other than me probably would never notice. She's a little more cranky than usual. Her tone seems a bit more increased. Is it just me or is she tipping her head to the left a lot. She doesn't want to eat Nutrigrain Bars anymore, or yogurt melts...what's with that. She doesn't want to eat food at all. Hmm. All seemingly benign things. Individually. But add them together...

As October came to an end I noticed that her head tilt had become more obvious. She wasn't wanting the bottle as much. The day I took her to the pediatrician she was having a constant head tilt, didn't want to eat at all, and was not attending or able to look at anything for a period of time. She was having a few seconds lag time when she was looking at something. Danielle noticed almost immediately that something was wrong. Or maybe it was the horrified look of panic on my face. Dr. Brand noticed almost instantaneously. She hardly responded to him at all. It wasn't long into the appointment that a CT was recommended, and the fastest way to obtain that was to go thru the ER. A bit of urgency I think was behind his message of apology (he knows I HATE going to the AMC ER...and avoid it at all costs). So off we went. SEVERAL hours later after being in the C overflow hall, we got moved to a room. Several hours after her CT we got word that she had a right subdural hygroma and a midline shift. I knew the hygroma. WTH is a midline shift. I should've just been oblivious and not Google'd it on my phone. It all started making sense tho. The sudden over reactions to when you touch her right arm, the hypersensitivity issues, why even in the pool Tuesday night she didn't want to splash, her left sided tone was ridiculously high. A big pocket of fluid was compressing the right hemi from not only the top but had pushed the middle off to the side. It all clicked. Unfortunately for me..I was right. It was a shunt malfunction. It was hyrdro. I just didn't know how bad it actually was.

So Wednesday the 27th they went in to do the shunt revision. All was well at first. Until the valve grew staph. Localized thankfully. But staph none the less. Atypical presentation of bacterial meningitis they said. IV antibiotics were started. (which sounds like it wouldn't be that bad...but as they said in ICU to the STAT nurses when calling for another line she is a "vascular nightmare". I'm not entire sure why she seems to have the smallest vessels ever. Not sure if it is a tone/small vessel issue. All I know is that since NICU, and the countless amount of lines and scans with contrast we've had one thing has been determined...this kid has NO ACCESS. So it was nothing short of a miracle when the line that Cliff put in went in on the first shot. (They are STAT nurses, after all. Essentially the best of the best for sticks) It was another miracle that it stayed as long as it did. It was, however, also not surprising when her left foot line came out, and when they attempted to put it in her left AC it infiltrated within 6 hours. Her arm was so swollen it was hard. She couldn't bend it at all. The STAT nurses were all busy, so they brought in the best of the best on the floor. 2 tries (right foot, right arm) and nothing. So they went for the jugular vein. I thought it was pretty horrid the first night in AMC when they put a line in her head (when she was 6 months old) the line protruding from her little neck was definitely more traumatic. For all involved. She left it alone for the most part. And it stayed (by the Grace of God) til we left. Even tho we had almost lost it two times before that. So Vanco on board, we started combating our other issue. Constipation. For those of you with kiddos who have had strokes you all probably know decreased peristalsis is part of the package. So our kiddos aren't necessarily regular, and it isn't ever an easy process (at least for my kiddo). So, the main goal was seizure meds and miralax when she decided to go on food strike. From previous hospital/constipation mom experience I knew we needed an NG. Not a fan, but the only way to sneak fluids into a kid that doesn't want a bottle. So in it went. Content with the way things were I decided to wave my flag and go home for the night and sleep. Dad was on night shift. I walk in to a baby with no NG and a staph infection result. Huh. Why do I never leave the hospital... So Dr. Greek Resident decided that because he didn't know why there was an NG in place (because it had been ordered by Peds Attending nice guy) he decided it didn't need to be there. So three seizure med doses and much yelling later we put ANOTHER NG in. Can I just mention that I was already at my breaking point by now.

Flash forward a few days (9 actually) and we are seeing the light at the end of the tunnel. One week of Vanco almost coming to a close. Home in our sights. Thursday (after a poop and some bottle eating finally) I decided it would be a good time for some food and Starbucks. An hour or so later I walk in to my sleeping baby and my mom watching TV. She had scooted to the bottom of the crib, so I lowered the crib side and went to scoot her back up top. I stopped, silently stared, raised the crib side, walked into the hall and asked Heather to please come in our room for a minute. She said "is everything ok?" to which I shakily replied "Not at all". A stain had saturated the bed sheet she was on. Her head wet. Actually dripping from her suture site. CSF...all over the place. The next few hours were quite a blur of pacing and caffeine. We caught it at 8p, by 1115p she was smiling at her two favorite neurosurgeons as I walked out of the OR to go and contemplate what the hell I had done in a previous life that would warrant my child to pay so greatly. I must have pillaged towns of children and women for sure. Because how can this much possibly happen in 5 months, much less a little over a week. Around 145a Dr. A came out and sat on the chair next to me...looking very clean shaven and a bit perplexed and a lot exhausted. It was, their speculation, that while pooping a good poop, the abdominal pressure was slightly reversed or possibly blocked the shunt and the shunt malfunctioned. Pooping = spinal fluid leaking from head. That was pretty much all I heard. Sometime a little before 3a my very tired and disoriented baby came up from PACU crying. I've never seen her handle anesthesia so poorly. They said she had a freak out in PACU, and wasn't much calmer in PICU. After playing her song, finally getting a gown on her, and giving her the blankie back she fell asleep. So much for that last Vanco dose at noon on Friday and discharge on Friday afternoon. Saturday (after the cultures came back clean from second surgery on prelims) we rolled out of there. Soooo very happy to go home. Blissful almost. I finally started my hospital PTSD decompression by the beginning of the week. A bit depressed, a lot of crying, tired beyond all comprehension. Tuesday brought respite (literally). Now, I have been on probation with respite because I never use them. It's hard to leave your constantly seizing child with someone. Anyone. Much less random respite worker. Things were somewhat more stable now...so I decided ok, I'll go shop. When I walked in and saw my extremely pink faced kicking happy baby on the floor, I thought huh, this is why I never leave the house. A quick temp revealed not much of a temp.. but one to warrant a call to the peds and nsurg offices. NSurg nurse called and I could tell as soon as she took a hesitant breath before speaking we were going. So I started to pack. Kind of mindlessly. Throw some stuff in my hospital bag "in case!!" we have to stay. Not thinking I would need it. They called ahead and told them we were coming so it was right back, and nice ER 3 year resident guy from last time came in. Another quick temp revealed a rising temp now. Still not really high, but high enough for 3 year resident guy. Work up for fever of unknown origin. First thing.. tap the shunt. (I forgot to mention the shunt tap on our last hospital stay..) The first needle she rocked. She didn't even move except her eyes in the direction of Dr. Jey.. like "hey. what you doin, Willis" The second one wasn't well received. Then come the STAT nurses. Cultures needed, CBC etc. Talk of a UA. As the night progressed and talk of admission started I had "UA/UC" in my head. I think I muttered "if they did the UA I bet that'd be it" at least a dozen times. I'll try to shorten this extremely lengthy diatribe as best I can. Admitted to floor. WBC's elevated, total protein in CSF elevated (indicative of infection, however non specific) WBC's in CSF. She was only a few days post op...of 2 surgeries I kept thinking. I felt better when Dr. A said the same thing. He didn't seem convinced that this was the same bacteria we had been battling. The 48 hour culture results at 5p yesterday proved him right. They were clean. However, her urine, that we finally collected Wednesday afternoon..had growth. Not just growth..but Pseudomonas. For all you non micro peeps.. bad bacteria. Not necessarily uncommon in UTI, but not really common either. I already had my bags packed, sleeping baby in the crib unaware our walking papers were on the way..and I get socked with a UTI diagnosis that could've been found in the first several hours of our ER visit. Sigh. While I applaud the dr's for their aggressive and cautious approach, REALLY!!?? A freakin UTI. Off we went Cipro script in hand. Which brings us to now I guess. After a visit with Dr. Brand today to pick up U bags, clean catch containers and a VCUG script (to make sure ureter reflux isn't an issue so we don't have any possible surprise bugs at a later date) the baby is safely and antibiotically sound (I'm pretty sure that isn't a word) with her dad for the weekend..and here I am. Blogging about the ridiculousness that has been the last few weeks. I'm not really sure what I hoped to accomplish by unleashing this on the interwebs...but I guess I feel slightly better. Maybe not so bogged down by the time line of it all. Slightly in awe that I am actually still awake. And as usual realizing how incredible my little girl is. Her strength and determination know no bounds. She will never cease to amaze me..that much I know is certain. And I think a good portion of the neurosurg and infectious disease dr's are pretty impressed with how much of a trooper she is. I think she won a few of them over in the end. I mean, come on.. who couldn't fall under the spell of this little miracle? She is quite the mighty monkey.

And a sea of purple spread across a social network....

2010-10-13T22:30:00.002-04:00

It's hard to say how it makes you feel. On one hand you are so connected to all these people, these families, soul mates, stories...each profile picture represented by a purple ribbon representing our collective. The IS bunch. On the flip side, to see the purple ribbons pop up as the day went on (Thank you to Stacy Fulkerson who started them for her son, and was kind enough to do them for all of us) it brought about a feeling of sadness. So many of us, connected, by the same devastating disease, having the same unanswered questions...the same tiresome med changes, neuro follow ups, MRI reports, VEEG's. We are a family. No doubt about it. And unfortunately in every family there are always periods of grief. We recently lost one of our angels, Brextin, who went home to be with the Lord. His mother Randi was one of the strongest voices on our IS board. She has always been a wealth of information, a tireless advocate for Brex, and still now thinks of us. Those of us out here still fighting the fight. Still searching for the miracle. Still looking for the right dose, the right drug, the right surgical procedure that could end the constant chaos that is ravaging their brains. This week is Infantile Spasms Awareness Week. Questcor (of course) is gladly sponsoring the 2nd annual celebration and awards ceremony. This brings about a bit of rage in me. As I said on facebook, if Quescor wants to do something to help the IS community then perhaps they should think about lowering the price of ACTH from nearly 30K a vial to something , oh, I don't know, maybe actually REASONABLE. Stop monopolizing the market on Acthar. Thankfully, coming down the pike we have several new anti epi's and one is a Vigabatrin type drug, with less peripheral visual side effect issue and seemingly a good 200 percent more effective than Vigab. It is during these times ...like IS awareness week, and next month being Epilepsy Awareness Month, it hits closest to home. We were one of the lucky ones. If you can call having half of your brain removed and subsequently VP Shunt. But that is luck. It is the miracle I never thought I would be happy to have. I never thought I would say Radical Brain surgery saved the day. But it did. For us. Not everyone can be a surgical candidate. Not everyone who is a surgical candidate remains seizure free. This is why in times like this, when Questcor and Lundbeck are paying attention, we need to push. We need to remind them that WE are the ones in the trenches. We are the ones fighting this fight day in day out hour after hour. They need to come up with some new meds, new interventions to help those who are not surgical candidates, who have failed almost all of the meds like we did. We need our voices to be heard. Or at least our color to be seen. So if you have a facebook page, and you are friend with a mom who has a child that suffers from Infantile Spasms (or RE, or any type of rare epileptic syndrome) Go purple. Make them take notice, that we are here, together, fighting together, and we are not going anywhere.

This week is not without sorrow, or grief. Just recently, we lost Brextin. An amazing little boy who fought the good fight along side of his amazing mom Randi.. who tirelessly advocated for him. Randi has taught many of us ways to navigate getting equipment, pushing for EI Services. Always fighting for Brex. He is now watching over all of our kiddos here, and I know he is watching over us all, a smile on his face, and so incredibly proud of his momma. So Brex, this week is for you. WE miss you. You are loved, and never forgotten. <3

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End of summer slack off

2010-09-20T12:07:00.003-04:00

Yup.

Not that I have ever been good about blogging before. Because I am horrible at it. I've been slacking off. A lot. It was after all the dog days of summer. And post op anatomical left hemispherectomy for those who missed it. And VP shunt placement June 8th.

It was a long ride. It was a traumatic, scary, at times heart stopping, wonderful, amazing, awesome ride. Hard to put all that together with the words "brain surgery". But I really look back on Detroit as the start of a new era. It was an amazing experience, even with all the scary crap. I will expound on all of this at a later date. For some reason I just felt like blogging. And the cheese is still sleeping. So I can.

We are coming up on 4 months post op as of this coming Sunday. 4 amazing, glorious, incredible months. Every single day since surgery has been something new. We hit the 3 month post op mark and she took off...just like Dr. C said she would. We have weight bearing, she is almost sitting independently, her attention is better, she has all sorts of new sounds, she can roll over from her back to her belly, roll weak side over strong (which we could NEVER do before). Everyday is a miracle. A miracle made possible by the gifted physicians at CHM. Not a day goes by where I don't think of them and how much I owe them. I am currently awaiting an email back from Dr. C. We saw Dr. M last week for her first discharged EEG, and according to Dr. M it showed abnormalities consistent with post op changes, no S, no discharges. WOOT. Not that I will not say the S word. I don't even like to think of it.. But it creeps in to my brain when I least expect it. The other day a toy that she used to play with all the time went off and I think I became frozen in time for a minute. As soon as I heard it memories came flooding back...things that I have been able to keep locked up since the night of May 25th. I shook it off, threw out the toy, and moved on. That's how I roll now. Move on. Always something better around the corner. Tomorrow is a new day. Miracles can and do happen. If it isn't brain surgery..I don't need to stress it. And I am working really hard to do just that. Don't stress. Enjoy all this wonderful time watching my baby explore her new world around her. With that famous crooked smile. The best thing in my life.

I heart crooked smiles.

Off I go to check for a reply from the rockstar.

xoxo

The 411 on Room 635

2010-05-29T11:18:00.000-04:00

Hello from Detroit!

So we are three days post op and it's been a roller coaster for sure!!

We weren't even ICU a full day, and we got moved to a general surg/ped floor
because the hospital is so full. The surgery went without any issues and was
about 7 1/2 hours long.

Since ICU we have run into a few issues. She was transfused on ICU, but her Hgb
is slowly coming back up. We have had some real drain issues. The morning in
ICU her EVD was filled with bright red blood so they went for urgent CT to see
if she had a bleed. Everything was post surg appropriate. That damn drain has
been nothing but issues!! She started vomiting in ICU, and when we got to the
floor by bed time she was vomiting " coffee grounds" so she was put on protonix
to treat for stress ulcers. Zofran was ordered as needed. With the coffee
ground issue arose another EVD issue, and what once was clearer CSF became all
blood again. So 2am urgent CT showed really nothing. Since yesterday she has
been leaking around one of her drains, presumably because a clot is in one( most
likely JP). I hear the word clot and freak because of her Factor V issues and
stroke!!! We had some BM issues as well.. She is chronically constipated from
the stroke and straining is a big issue (forgive the TMI). So ICP went nuts
after some result, and EVD went back to
bright red.

I am seeing a lot of twitchy movements, as well as a few seizure-y looking
things. We restarted her Vigab yesterday and she was started on Dilantin post
op. Every time she moves I freak because I don't know how much pain she is in,
was that a seizure or did she jus startle. Seizure waiting as you all know is
torture. And with her drains we have no EEG on sight so the plan is to stay on
the two meds an eventually add trileptal.

Currently she is getting the most and best sleep she has had post op. Yesterday
had to be exhausting for her. We had her out of bed twice so they could change
her bed ( she freaks out when you try to log roll her) so it was just easier
(and of course I wanted my baby!!). It brought back NICU all over again. I
was so afraid to touch her, I had a pillow under my arm, and she was so
uncomfortable at first. Then next thing you know she is pulling herself up from
a reclined position in my lap to sit up. Something she doesn't even really do
on good days! So she sat up looked around and started babbling .. Getting back
to herself. Then she promptly fell asleep. :) I love snuggles, even if I
couldn't snuggle her too right for fear of hurting her.

Neurosurg just popped in, saw she was sleeping and said they will be back for
the JP.

I think the night we were moved from ICU to the 6th floor the hospital
exhaustion/post traumatic hospital stress started to hit. Today I'm more
exhausted than surgery day. I have been doing rather well in the keeping it
together part. I lost it in ICU when I first saw her throw up and the pain she
was in. Yesterday she had a coughing spell and the look of terror and pain on
her face will forever be embedded in my
mind. So much so that I have begun second guessing myself ( or I was last
night). I texted Larry and asked him if I made a mistake by going a head with
surgery. He said this is all temporary and in the long run will be worth it.
After the look on her face yesterday I have doubt in the back of my mind.
Logical part of me knows we had to do it, but mommy part can't rationalize all
the pain she is in and how I put her there.

But enough negativity.. Today she is getting much needed rest, and I am grateful
for that. One more tube comes out today so that is great. And above all else..
I got a smile before they drew her six am labs. A real, big, toothy, very
lopsided now smile. What my heart has been longing for and needing!!

So we still have a few days with the EVD and then I am
not sure where we go from there. I kind of hope to be here doin in pt rehab,
but part of me wants to go home. Her EI therapists miss her so much, and home is
so quiet.. But pretty content out here. I'd move if I could. I love Dr
Chugani, Dr Asano, Dr Sood.. Some of the nurses have been outstanding !!
Others.. Eh..

And that is where we are at right now.

Day 2 coming to a close.....

2010-05-27T21:49:00.001-04:00

Sorry I've been off the Grid today guys. Been in ICU most of the dealing with stuff, now on the floor so I can use my cell in her room. Drainage issue is getting better, CSF is looking less bloody... Still having some vomit issues, but Zofran has been ordered already. She just got Morphine a little while ago so she is resting comfortably. Spiked a temp of 102 but it's back down on it's own to 100.5.

I'm taking first overnight shift in case the docs need history etc, then I think we are going to alternate between the four of us. So currently things are stable, still watching EVD drainage and temp, as well as for seizures. Hard to tell with all the startling going on. Dr C and Dr A stopped in as we were moving up to 6, plan is to keep Dilantin in house, reintroduce vigab when she starts taking PO anything ( ng has been mentioned if need be) then she will be on vigab and trileptal, with the plan to wean vigab over the next several months based off of EEG's. I love my neuros, they are the super duo.

I had the most traumatic experience yet earlier when i first saw her throw up, she reached up with her left hand and grabbed her bandages and let out the most horrific scream of pain. I thought I was going to pass out. I have never heard her scream like that. I immediately burst into tears. I keep begging them to give her a suppository because I'm afraid if she tries to poop her ICP is going to be off the charts!!! I've told everyone so far. Her ICP is a big worry for me... Everytime she coughs ( or vomits) I freak. She is sleeping well with occasional little sleepy moan noises.

It's been a pretty long exhausting day.... More so than yesterday I think ( or yesterday is just catching up). Between the drainage scare, CT, and constipation issue I'm pretty pooped (ha. No pun). Ruth, one of Dr Chuganis nurses came down to go over some research paperwork with me and said " has anyone told you how good she looks?". We were like no. She said " she looks really good. Granted, tomorrow we may have more swelling, but she looks great for immediately post op". Yay!! My girl kicks surgical ass.

So we have our own room which is nice, but we are on the 6th floor instead of 5th... And it's fairly noisy up here. We were told to just let her do her own thing, don't try and wake her up or over stim her as the brain is still traumatized and learning to adjust. So noisy floor doesn't thrill me too much but I've loved her nurses down here so far, and the pedi resident. I called to report home to our pedi but missed his call at the end of his day because we were just about to leave ICU. So he left me his cell in case I need him tonight. And Dr C said he was going to pop in tomorrow morning and leave his cell because he is going away and " it's a long weekend" and if we need him he wants us to have his cell. Have I mentioned I think I have the greatest drs in the world. Dr Asano was a neurosurgeon in Japan, now he does more research here (he is a PhD and a freakin genius) he works very closely with Dr Chugani and is conducting a few studies right now.

I finally ventured out in the tunnell tonight and went to Wendys. I wasn't that impressed. And so much for not stress eating. The executive chef at the Marriott where we are staying whipped up some chocolate mousse - y hazlenutty yumminess just for us because our room service angel Kamal and his manager Michele love the baby and have been ao incredibly kind to us. They are incredible at the Ren Center Marriott.. I highly reccomend if coming to Detroit staying there.. It's well worth the money!! So I think I blew my ww points for the month with thAt chocolate confection but it was worth it.

I'm dragging ass right now. I don't want to go to bed cuz it's so early, but I'm really beat and really bored. I can't get the tv to work at all so it's stuck on ESPN. Ugh. And I can't turn it off. Oh well. If that's all I have to complain about then it's a good night.

So I'll say adios for now. I promise I'll fb update more tomorrow since we are no longer in ICU. Since froggie joined her in her new roo
she has picked him up and was whipping him around like she loves to do. So that is a very promising sign!!!

Xoxo

2010-05-26T16:28:00.002-04:00

Dr Asano just stopped in, surgery is almost over, no major complications... we saw a picture he took of the hemisphere... Amazing. The whole middle area was missing. Dr Sood should be down about 430 to talk with us. Not sure if she needed a transfusion or not. And I had an amazing wonderful surprise! A lab mom who was in Detroit popped in to see us! My mom and I were blown away... She brought flowers ad yummy Italian pastries. Saratoga Hospital Lab you guys are the best!!! Xozoxox. Everyone just went to grab lunch... I'm kind of hanging by myself still trying to absorb. We probably won't get to see her til 630 or 7 when she gets to ICU. It's almost over (this part at least) I can't believe how fast it's actually gone by. I can't believe it's almost 4. I can't believe I just saw my childs brain. But I had to. I had to see for myself. Something that will never leave my memory.... But I'll never forget how that impacted the last year and a half. It's amazing how fast the day has gone. I was so worried about what I would do, how would I be during the wait.. but aside from some occasional tears ( and LOTS when I kisses her goodbye and watches as Larry carried her in back). I'm ok. Maybe cuz I'm
in denial, or compartmentalizing like usual.. or maybe it's the complete faith I have in her drs... But I'm ok. I'm sure when I see her poor swollen face I'll lose it.. But right now I'm ok. And ok isn't bad. I'm ok with ok.

Not just Hockeytown, it's where the man has all the power

2010-05-25T15:56:00.000-04:00

No... I'm not talking about God, although technically he is the man with all the power usually. But yesterday I met God, in the form of a miracle worker neurosurgeon named Dr Sood. He is my God, because tomorrow my childs life will literally be in his hands. He has the power to change the course of all of our lives. To drastically change Charlis. From seizures all day long... Which have transitioned into prolonged tonics that scare her and she cries after them... To what he told us yesterday..."95% chance for seizure freedom". 95%. That's right... Ninety-five freakin percent. Seizure freedom. The best words in the world. Words that I dreamed of since I heard the words " she has hypsarrythmia with infantile spasms".

I have met a lot of Dr's in my day. I worked for some of the best pulmonary and critical care dr's in our area (probably anywhere). I have bumped heads with ER docs drawing bloods, run into cardio guys in ICU, had docs pop in the lab to read cultures or gram stains or whatever. I have met the most amazing pediatric dr's since Charli was born. Her pedi is a gift from God I am certain. Her cardiologist is wonderful. All of her neuros are great. But here, in Detroit, I think I may have found the two men who will undoubtedly be changing my daughters life for the better, and that my eternal gratitude will not be enough to ever thank them... For giving us a chance.. For giving HER a chance.. At a life with no seizures, no meds someday. A chance to sit, stand, walk, talk ( which Dr C says she will be doing more of 6 months post surg).

I've met a lot of dr's, and admired many, and disliked many, and there a few who if not for them I wouldn't be who I am, have the knowledge I do.. Which has helped me help my daughter. Never have I met dr's like these two before. Maybe because I hold them in such high regard because they are the ones who are about to shape my daughters life into a life with 95% chance no seizures. Dr C I knew a little before I met him. We had exchanged a few emails before we came out here. But Dr Sood. No idea what to expect. He is a neuro surgeon for Gods sake. Specialist. Top of his game. In my experience surgeons are rather cut and dry ( bad pun) kind of no nonsense... Get in get out let's get to the next case. Dr Sood walked in and this kind, gentle man said hello to Charlotte and began asking me questions about her history. Then he started discussing surgery. 6-8 hours probably, unless Thebes is an issue or she needs a transfusion then it could be more like 10. " did you see the MRI" he asked me. I replied " the DTI? no, Dr Chugani had not seen it when I saw him" he said " I will show you" so we started talking about surgery again. 95% chance of seizure freedom. And not cocky, like surgeons can be. He (and Dr C) have a confidence about them that is contagious. It's magical. I wasn't nervous, or scared talking to him. I felt calm, confident, optimistic. We talked about the DTI, and her right sided motor functions. He asked me how her movement was... I told him what she was able to do. He waved his hand and said " I'm not worried at all about her leg... That will be fine and all come back. Her arm, she can lift it?" I said yes. He said "that will come back as well". Her hand.... Different story. She has no volitional control over her hand. No dexterity. Never has. But he said "sometimes with surgery you can gain movement. It's very hard to say, but there are cases where it has happened." ok once again good news.

He mentioned that there is always a possibility with surgery that at the site a clot can form. My biggest fear. Charli is Factor V Leiden positive.. Meaning she is prone to clots (hypercoaguable) he said if that were to happen then they would go back in and remove it. He also said in all of his surgeries ( and I don't know his numbers) but he said it is very rare. We spoke about my appointment with heme an what Dr Chitlur said...and agreed no intervention was needed right now.

We spoke about some other stuff.. Mostly a blur because at this point my brain was spinning, tears already in my eyes.. Looking at my beautiful girl kicking away on the exam table.. Knowing in two days we are about to do the hardest most horrible thing ever but also the best and most wonderful thing ever. Because of two Dr's in Detroit who have made it their lifes work to help make miracles happen. Now I know the odds, I know the numbers game... Nothing is ever a gaurantee, but 95%.. how could I not be excited, optimistic . Then he said he'd be right back. When he returned he said ". Come on mom ... Dad you too." He walked us around the corner to a screen with my babies brain on it. I've seen her MRI's before, and her PET. But never a scan this clear. Immediately I saw the two areas.. The frontal and occipital areas that are hypometabolic on her PET. As clear as day. And I saw the black. The darkness that was once healthy tissue, that was destroyed by her stroke. ( middle cerebral artery infarction if you want to be specific). Those two little areas, trying to grow and develop... With no presence of middle lobe tissue.... They became irritable. Hyperexcitable. Seizures. Larry asked something about what he was looking at, and not thinking I just kind of blurted out " no, that's her ventricle , the rest is ex vacuo" (fluid from cell loss) Dr Sood looked at me and said " nice! You've certainly done your homework". Kind of nice coming from a famous surgeon. Looking at her MRI was once again clarification ...like seeing her PET that this is the right thing to do. I started getting teary again becaue he also said "and here is her right hemisphere, normal.". We've never head that about her right side before. Buy you could see it. No darkness. A few little white areas, but no darkness. Normal. Dr sood feels that most likely because there is no presence of motor tracts on the left hemisphere her right has picked her motor. Which means we may see less impairment. MAYBE. But it will be easier for her to regain function because of this. So as I tried to
Take this all in, head spinning, teary blob, Dr Sood put his arm around me and gave me a hug and said "it's going to be alright mom, she's going to be great". I don't think I remember much after that. I don't really need to. Because it is going to be alright. She is great, and she will be better than great after this. She will be my beautiful amazing little fighter, seizure free.. Ready to take on recovery and therapy...ready to take on the world. All because a Dr in Detroit answered a desperate moms email, and set in motion the next chapter of our lives... Which wouldn't be possible if not for Detroit Medical Center/ Detroit Childrens, Dr Chugani and Dr Sood. Miracles do happen, and Detroit is the Rock City... Rockstar dr's and rockstar hospital staff. Detroit for all of it's flaws, will forever be my favorite place in the world.

I'm not sure what Garth Brooks was talking about....

2010-05-15T09:43:00.003-04:00

Not that I haven't always had wonderful friends, and know that they have always had my back. But these last few weeks, these last few days in particular...I couldn't be more blessed than to know all of the wonderful people I know in life. From my lab moms, to the teachers at Slingerlands, my primary care dr, his nurse and office staff, friends I have known almost all of my life, to friends I have met who have become family to me since I started this journey called mommyhood. I don't say it enough...I don't write it enough...but you are ALL truly amazing. Each of you in your own way has touched my life, my childs life, or my family in a way that is truly wonderful. Some of you pop in from time to time to say hi, and check up on us. Some of you I talk to daily (or try to...I'm such a slacker lately) and listen while I vent and whine about the latest chaotic thing to go on in life. This is going to sound corny (but it's how my brain works) If I had to think of you all...I picture it like this in my head...it's either one of two scenarios....it's the community outpouring saying "move that bus" as Ty shows a family their new life... or it's the Verizon dude with the network behind him. Because I as hit the thruway and head out of NY that is how I feel...that is the strength and the power I feel behind me. I have never had this kind of outpouring of support before. Frankly a lot of times it's so overwhelming to me I don't know how to handle it. But it's the unity, the strength, the kindness and caring keeping me up right now, making me able to walk my path toward Detroit. So if I mutter "nurse, move those bandages" they'll probably think I'm insane..but so be it. Because this is the start of a new chapter, a new life for Charli... and all of you are a part of it.

So I don't know what Garth was talking about..friends in low places...because from the way I see it.. you were all sent from above.

I hope you ALL know how much I love you.

Hemi's have more power.

2010-05-14T21:11:00.001-04:00

So, here I sit, yet again procrastinating my packing to leave Sunday morning for Detroit, for what will be the most life changing event ever. Her's a little recap just in case you've missed the last 22 months.

July 1 2008 after a hell of a labor and urgent C section the world welcomed my little angel Charlotte Hayes Gill. Within a few hours she was in the NICU with a pulmonary hemorrhage, on a vent, and having what they thought were seizures. Subsequent EEG's would show (first, little to no normal brain activity and then marked improvement but still many abnormalities and slowing). But no seizures. It was determined by MRI July 8 that Charlotte had a bi lateral middle cerebral artery infarct (big words for stroke). After reeling from the devastation that our baby had suffered a stroke, we began to settle in to life a bit.

Not for long. The day after Christmas Charli received her 6 month vaccinations and hours later went into a complex partial seizure, became post ictal, and upon waking up started what would be the first of what I can only imagine as thousands of spasms by now. At the end of that month my husband Larry had a spontaneous right carotid artery dissection and also had a stroke. Needless to say my family keeps me on my toes. EEG on Charli on January 7th revealed what I knew in the pit of my stomach all along. Infantile Spams with hypsarrythmia. A rare, catastrophic, devastating form of epilepsy.

Since January 2009 we've tried Phenobarb, Depekene, Zonegran, Topomax, ACTH, Keppra, Vigabatrin , Klonopin (her three current meds). During the past year we have had numerous trips to the ER via ambulance because of prolonged clusters of spasms, Generalized Tonic Clonic seizures, Status Epilepticus (or Status) and a plethora of other things including work ups for vascular anomalies because of bi lateral discoloration in her legs in the dependent sitting position, Pulmonary follow ups for R lower lobe atelectasis with a sub pleural bleb, Cardiology follow ups for a functional heart murmur, and for what was seen on a thoracic MRA as a possible aortic dissection where we didn't know for 18 LONG agonizing hours in the ER if she was going to go at any minute. We still haven't quite cleared all of that up, but it wasn't a dissection thankfully.

We've been to Philly for stroke follow up, Boston for eyes, NYU for seizures, and now we are headed what I refer to as home...to Detroit. To be in the hands of Dr Chugani and Dr. Sood, and for what will be the beginning of the best next chapter in Charli's life. After failing so many meds, and countless amount of research hours I've put in and mommy networking (thanks D ) ;) We landed ourselves in the Detroit Medical Center....home to Detroit Childrens hospital. After meeting with Dr C (or the Rockstar as we call him in the IS world) and Dr Velagabhanti (his fellow whom I ADORE) and going over VEEG results and results of her PET scan done there...it was determined that she is a perfect surgical candidate. Her stroke left her with basically little to no activity on her left side...except for two hypometabolic areas in her frontal and occipital lobes. Dr C thinks these are seizure culprits and are not allowing the right hemisphere to full take over the left side functions. We know that her right side has in fact taken over left side functions because she has speech (jargoning, babbling, 3 words...with maybe a forth on its way TRACEY!!) For a child with no language area (Broca's and Weirnekes) that is pretty damn impressive.

So, the plan. Monday we see Hematology because she needs to be followed because she is Factor V Leiden positive (which means she is hypercoaguable) and she may need coag therapy. Tuesday we have a new MRI Diffusion Tensor Imaging done to look more closely at the motor tracts in the left hemi to see if there is any activity. Wednesday with meet with Dr. C. Thur and Fri I think I may either sleep or drink myself into oblivion. Kidding. We might take in the zoo if the weather is kind to us. (open air good, closed contained environment bad!!) Then Monday the 24th we meet Dr Sood for the first time and have our Neuro Surg consult. Then the big day. Wednesday, May 26th. I kind of peeked ahead in a prayer book I got from a friend of my moms...and that days psalm is John 10:11-18 I am the good shepherd. The good shepherd lays down his life for the sheep. Lord Jesus, thank you for being my Good Shepherd to watch over me and give me what I need most. Amen God gave me what I needed most in life. My reason to live, breathe, fight, smile, love, laugh. My daughter. He also gave me a chance to meet people along my journey who have become kindred spirits, really family to me...who share my fears, inner most dark thoughts, joys, sorrows, tears, smiles. He gave me my daughter because she needed me. And I needed her. And I have stopped at nothing to get her the best care since the day she was born...and I will continue to do so for the rest of my life. I know Charli is an angel among us. You can see it in her eyes, the way they twinkle. The way she scrunches up her nose and smiles. The way she rolls over and throws her strong arm around my next and gives me squeezies (which I think is her learning how to hug). She is my reason for living. She was my path chosen and laid out before me. And I gladly walk this path. I might stumble, and fall, and lag behind at times feeling sorry for myself, but the light at the end of the tunnel is coming. So I will walk strongly, my head held high, carrying my daughter into the pre op room, knowing that when she goes away it's going to kill me, but when she comes back my little girl will be better than ever. I know this to be true, because I have so many of you out there praying for us, pulling for us, and I have more faith in my daughter than anything that she will come out kicking IS ass.

These last few months have been hell. I am not going to lie. As some of you know my husband and I have split up, but we are bonded as a team to fight for Charli and her well being. Unfortunately stress from medical crisis after medical crisis takes a toll on a marriage. It's been a roller coaster of emotions, illness, dr's appointments, traveling, lost cats, adopting epileptic dogs, cars breaking..you name it, it's happened. But this Sunday, as I drive in to Detroit (rollin up listening to Eminem of course) I know that Detroit will be the place that miracles happen. I've seen it, I know it to be true, and we will be among those miracles. So for those of you who pray...please continue to say prayers for Charli...to come thru her surgery, to have strength to recover quickly, for the seizure monster to be slayed and gone forever. And please pray for her family, to have the strength to wait the agonizing long hours in that surgical waiting room, to find some peace in knowing that not only is she in the hands of 2 brilliant dr's, but God is protecting his little lamb. To not get sick on the dozens of Bigbys coffee's I intend to drink (had to make ya'll smile!!) And for those of you who dont pray, maybe just think of that day. As you go about your day, and see the sun shining, or a butterfly, or a beautiful flower, think of my beautiful daughter..and wish her well.

I hope you know how much I love all of you. You are all amazing, I don't know what I would do without some of you (HEATHER, JEN, TARA, DANIELLE, AMY) so many people to list...who mean so much, and are in my heart forever...because of a common bond we all share in one way or another. We are moms (and dads) we love our kids. And we fight. Always. For them. For all of them.

I intend on making regular fb updates, as well as trying to update my blog from out there...so stay tuned. I'm sure you'll get some good five hour energy ramblings from me in the next few days ;o)

HOPE in one hemisphere

Post Surgery Hat Fashion Show

23 days. But who's counting

2010-05-03T00:43:00.002-04:00

It would seem like there should be another way of dealing with time in a situation like this. Instead of just sitting and letting time win out day after day. Making it so we are that much more closer to leaving, to a week of pre surg appointments, to meeting with neuro surg and setting up a game plan (if that is possible) It doesn't seem that time should be able to taunt one so much. My biggest issue with time is that there is never enough of it, and sometimes there is far too much to even be able to comprehend. I don't know for the life of me what I am going to do. How do I go downstairs and order a coffee (a really GOOD coffee mind you) but not have it looming over me that my child is upstairs in the OR right now, and they are removing HALF of her beautiful little brain. So maybe it doesnt work the way it should. I get that. It's causing her seizures most likely. But it is still her. It's her brain,her beautiful little brain. How do I sit and wait for them to come out and tell me hourly updates while they cut into my babies skull. My baby that I grew in my belly, and tried so hard for her to have the best pregnancy, and to be healthy. How do Iwait for that dr to come out of the OR and do the family talk thing. I'm losing it her. I need to have a plan. Bigbys for coffee, phone,listen to music, just sit and look out the window. My child is my life. She is everything to me. She is the single , by far, best thing I have ever done in my life. She is my everything. My hope, my inspiration, my love bug, she is everything to me. Nothing means more to mean that the health of that child. and Whatever we have to do to get her well, that is what we will do. I love her that much that I will put aside fears and go into this as hopeful and positive as I can be. Because I know my girl is strong. She fights ..like her momma. I know she will kick some serious brain surgery seizure fighting ass. I just hope her momma can get thru the waiting without collapsing at the end of the day.

fear and trepidation

2009-07-08T23:35:00.003-04:00

Yesterday was one of the best of all bestest days. A day that I DREAMED of. A day I feared would never come. A day that still doesn't feel real to me. Yesterday...7-7-09 was the day that the monkey was declared "hypsarrhythmia" free.

I saw it before he said. I watched the EEG on the monitor. I shook my head out of confusion, the words "no, it can't be possible" coming out every few minutes as I looked confusingly at my mom, the monitor, the tech, and my spasming monkey lying next to me. I couldn't be seeing what was on the screen. It isn't possible, right? She is having spasms. Six of them just during the EEG. So how is it possible?? When?? Was it the last bump in Vigab to 2000k..was it the ACTH increased dose? I don't know how, why, when ..all I know is Hyps has left the building.

So...now what? I was SO incredibly happy yesterday. But now I have this latent sense of fear and the unknown scares me. Scares the crap out of me, actually. The loathing is for seizures in general. I hate that my happiness is riddled with little bullet holes of epilepsy/IS facts. That we don't even KNOW what kind of seizure type she is having... nor do we know why she is still having SPASMS. I read today that the hyps and spasms don't have to leave at the same time, spasms can follow a "non-hyps" EEG for several days after. I also read that sometimes "clean" EEG's can show hyps in sleep...so now I am wondering if we are truly free of it. (see how my realist/pessimist scared self is taking over my less than 24 hour ago happy self) When do I start asking them to put us back in for VEEG. When do I find out what seizures we are dealing with? Should we really start a new med (or kind of old one..Zonegran) if we don't know what we are dealing with??

Plus the general ACTH wean has me a bit nervy. I heard what I longed to hear yesterday, a mohters greatest day, and here I sit, confused, scared, in unknown territory...almost where I was when we first got this damn diagnosis. I have lived my life around IS and hyps the last 7 months. Now it's gone (sort of) and I don't know what to do. I don't know how to feel. I was happy...I want to be happy, be positive..but so much doubt, and info, and anxiety is lurking in the back of my head. I'm trying to push it down and enjoy yesterday still...but I've been an emotional mess all day today.

I guess one day at a time is all I can do right now. And love that little girl like no one has loved before. She is my life, my soul, my heart. My world. My everything. So I will go back to positive mode (or try to as best I can for her sake) because she needs me to do that.

I HATE hyps. I HATE seizures. Hate is a strong word, but not strong enough I think for IS.

My daughter is strong. Strong enough for IS. She kicked Hyps ass. Hopefully we'll get a VEEG set up soon and calm mommys nerves a bit ...but for now, Monkey TKO'd Hyps. She has the scars to prove it unfortuately (in her legs, from the last 2 weeks of injections...the IV they put in when we were in the hospital over the weekend, the blood work she had this week..etc.) She will never falter. She is strong. And I will NEVER give up hope, belief, fighting. I won't stop. Ever. For her, for all IS children. For all those affected by seizures. I'll never stop.

Sometimes ...lately...I feel like all I can do is fight, because there is very little else I can do. So that's what I do. And I fight well, let me tell you! Don't give up out there. Fight. Believe. Pray. Good things do happen. It make take time, but it will happen. We are proof!

Love and hugs to you all. My mind is tired now, and I think I should stop before I start crying! Good night friends. Much love and SF'dom.

Deep in the recesses of my mind, where I thought they lay hidden...they now creep..

2009-06-21T23:50:00.003-04:00

This is what I was doing this time last year. June 22, 2008. What seemed like a normal day. A really hot day. A day that I did not feel well, and thought I was getting third trimester morning sickness back after being ok for a few months. This apparently was about the same time my daughter, while inside her mommy (who should be protecting her and knowing what is going on ) was having a bilateral middle cerebral artery infarction (better known as stroke) While I opened gifts and joked and ate cake, my daughter was in the beginning stages of fighting for her life. I can't quite wrap my head around it. How did I not know. How did something not scream at me get her out..something is wrong!!! What the hell was wrong with me. It wasn't until the next weekend they hospitalized me, only to send me home again..to go back in on Monday and have them try to induce. How did I not know my precious angel was in distress. How did the idiot dr's not realize that when fetal variablitily is flat, and you fail a biophysical profile that is NOT a good thing, so bring the baby out, start stroke protocol...get her out of there. Hind sight is a funny thing. All the things I should've done, should've said, should've fought for. As the babys birthday gets closer I find myself struggling with the events of last year and the events leading up to now. We have come a long way for sure from those first few NICU days, but honestly it haunts me. It sits in the deep in my mind waiting for a weak moment to pray on me, make me remember how terrified I was (and still am) for all the things my daughter has gone thru. Never really having an answer, or an answer to if it could happen again. Speculative doesn't work with me. But, I look at my monkey, my beautiful, strong, bright eyed, happy monkey, and remember that it all worked out. SO no matter how hard it is to relive it right now, it turned out ok. She is ok. We will be OK. It may take time, but it will happen. And as we near the celebrating of monkeys 1 year birthday all I ask for her for her birthday is seizure freedom. The rest will be nice, but SF would be like Christmas. We let monkey have cake tonight. Because I don't know (thanks to ACTH) when she will be able to have her party. SO she enjoyed making a mess of cake tonight . A pre birthday cake smushing. So, while there is no doubt that from June 22nd until July 13th I am going to be more of a basket case than usual, I will try and persevere and be strong, because monkey needs me to be. Especially in NY.I will do my best to try and stuff this back in the dark closet from which it came. Hopefully I'll have some good news to report soon.

Thanks all.

HUGE news on the IS research front!

2009-06-19T23:38:00.003-04:00

I'll post about us soon...I promise. I know you guys are just waiting for me to drone on and on about waiting to go to NYU for ACTH. (lol) In the meantime...here is some great news from CHOP about having the FIRST mouse model for research!

Findings in Epilepsy Gene in Animals May Guide Treatment Directions for Infants

    PHILADELPHIA, June 1 /PRNewswire-USNewswire/ -- Researchers studying a
difficult-to-treat form of childhood epilepsy called infantile spasms have
developed a line of mice that experiences seizures with features closely
resembling those occurring in patients with infantile seizures. These
genetically engineered mice provide a new opportunity for scientists to
test treatments that may benefit children.

   "Approximately one out of every 100 infants has a seizure. Many of them
go on to have epilepsy -- characterized by recurrent seizures. One obstacle
to developing better therapies for children has been the lack of a good
animal model," said study leader Jeffrey A. Golden, M.D.,
pathologist-in-chief at The Children's Hospital of Philadelphia.

   Golden's team described a new mouse model for infantile spasms on May
12 in an online study in the journal Brain.

   Infantile spasms are a type of seizure that occurs in an estimated 1 in
2000 to 1 in 6000 babies, with onset between ages three months and one
year. During the seizures, infants have jerking movements and abnormal
brain waves (seen on EEGs). "Children with infantile spasms often have a
poor developmental outcome," said Golden. "Despite current treatment, many
children with infantile spasms go on to develop lifelong epilepsy and
varying degrees of mental retardation."

   Finding a treatment for infantile spasms is crucial. "If we could
better treat the infantile spasms, it is very possible some of these later
problems could be prevented," added Golden.

   Neurologists previously knew that mutations in Arx, the X-linked
aristaless-related homeobox gene, were associated with abnormal brain
development, neurocognitive problems, and with childhood neurological
conditions involving seizures and spasms.

   Golden's team developed genetically engineered mice in which the Arx
gene was removed from interneurons, a type of brain cell that inhibits
electrical firing in brain circuits. Removing the gene's role appears to
have resulted in overexcited brain cells and seizures in the mice. The
seizures resembled human infantile spasms. Equally exciting to the
researchers, these mice had another brain wave abnormality similar to that
found in children with infantile spasms -- an abnormal background EEG.

   "This is the first genetic model of a developmental epilepsy, and even
more importantly, it was generated by mutating the same gene that can be
found mutated in humans with infantile spasms," said Golden. In an
unexpected development, the researchers found that half of the female mice
carrying the mutation also developed seizures. Because the mutation occurs
on the X chromosome, it was expected that male mice would have seizures,
which was true, and that all the females would be unaffected carriers,
which was not the case.



   This discovery prompted the researchers to take a closer look at human
families with an infantile spasms patient. They found that the patients'
mothers (14 women) had experienced normal development. But of the patients'
nine other relatives -- sisters, aunts and a cousin -- six had neurological
problems, including four with epilepsy. The neurological problems included
varying degrees of mental retardation or other learning disabilities. These
findings, said Golden, will immediately change the evaluation and testing
of women with mental retardation and epilepsy, particularly in families
with other affected individuals.

   This new finding will also assist genetic counselors in advising
parents who already have a child with an Arx mutation and are contemplating
having another child.

   Going forward, Golden said, this new animal model provides an important
tool: an opportunity to begin testing drugs in the mice to identify
potential treatments for children. "We can screen existing drugs to see if
they are effective against this type of epilepsy," said Golden, adding that
understanding the biological mechanism by which infantile spasms develop
may also lead to more specific treatments.

   Golden and first author Eric D. Marsh, M.D., Ph.D., are both from
Children's Hospital and the University of Pennsylvania. Other co-authors
were Amy Brooks-Kayal, of the Children's Hospital, Denver and the
University of Colorado; and faculty members of the University of Chicago;
Vanderbilt University; the University of Rotterdam, Netherlands; and the
University of Pennsylvania School of Medicine. The National Institutes of
Health, the American Epilepsy Society/Milken Family Foundation and The
Children's Hospital of Philadelphia provided funding support for this
study.



   Marsh et al, "Targeted loss of Arx results in a developmental epilepsy
mouse model and recapitulates the human phenotype in heterozygous females,"
Brain, published online May 12, 2009.

   About The Children's Hospital of Philadelphia: The Children's Hospital
of Philadelphia was founded in 1855 as the nation's first pediatric
hospital. Through its long-standing commitment to providing exceptional
patient care, training new generations of pediatric healthcare
professionals and pioneering major research initiatives, Children's
Hospital has fostered many discoveries that have benefited children
worldwide. Its pediatric research program is among the largest in the
country, ranking second in National Institutes of Health funding. In
addition, its unique family-centered care and public service programs have
brought the 430-bed hospital recognition as a leading advocate for children
and adolescents. For more information, visit http://www.chop.edu.


   Contact: John Ascenzi
   Phone: (267) 426-6055
   Ascenzi@email.chop.edu

SOURCE The Children's Hospital of Philadelphia

Holding pattern...the waiting game SUCKS.

2009-05-20T02:37:00.002-04:00

I can't beleive how long it's been since I've blogged last. SO much has happened in the time since my last blog. I will fill in the in betweens at a later date. Right now I need to vent about the past 4 days and waiting on NYU to call and get us a bed so we can start ACTH. We are on standby because there are no beds, and waiting is horrible. I'm going insane waiting for the phone to ring, and everytime it does ring I think it will be them and it's not. Not that I am looking forward to this, but I'd rather just go and get it over with so I can bring my baby home. Especially now with the 16 mo old boy who passed away from the flu I REALLY dont want to be in the city. I hate waiting. I hate knowing that my daughter is going to have to go through hell yet again, and we are just prolonging it at this point. I want it to be done ..get the process started so we can be closed to be over with it. And please God, PLEASE let this work. Don't make me do this to her for nothing.

Charli is making incredible advances in PT and Speech. She has been sitting better and sitting unsupported for short periods of time, and she is taking her right hand and bringing it to midline and using her left hand to play with her right fingers. She is using her right hand so much now its amazing. And..she is also making NEW noises the last few days, especially last night and today. She has been so chatty, and making "ooh and Ahhh" sounds, and a few "b" and "n" sounds. Her head control is great, she is moving her left leg so much and bringing it up so high in front of her she almost has grabbed her foot. She is also have flexion on the right side from her ankle down, and moving her knees up as if she is shifting weight in antipication to either roll or attempt to get up on her knees. She continues to amaze us everyday, and her smiles and laughs only get bigger and better. She is an amazingly strong girl.

I will update about our trip to Philly, our emergency trip to NYU right after Philly, and our last pedi appointment, and our appoint with Heme later. Now I am getting sleepy...so I think it's time to turn in. Thanks to all who read our blog and follow the monkey. I promise I won't take so long between blogs next time!!

The choice (almost), doubt, doubt and more doubt

2009-02-27T17:30:00.002-05:00

So, it's been a crazy few days around here. No surprise, right? We've seen increased seizure activity, decreased Charli. Several days ago I noted Charli wasn't smiling as much, she was laying like a blob when she should be playing on her mat, not engaging with us when we talk..slipping away from me. I think this is mostly related to the increase in Depekene she was on. She doubled her dose overnight, and since then things have deteriorated quickly. We've made some med changes (adjustments I should say) and yesterday my bright eyed smiley girl returned. A miracle in itself.

Now for the spasms. Damn spasms. Yesterday was what I call a good day. 80 by 930p. That is a good day. She ended up with about 100 for the day after she finally went to sleep around 12-1230a, still a "good day". That is pretty sad , isn't it? That 100 spasms is a good day? After seeing her smile disappear for days, and then reappear yesterday it essentially scared me to the point of no return. I can't, I won't watch my baby slip away. I can't have the glorious smile fade, those bright shining eyes glossed over with medication haze and confusion. I had to make a choice. Continue my pursuit of Vigab and the strong instinctive feeling that it will prove all the dr's wrong, or give in and deal with my fears of ACTH and give it a go. I heard myself tell Dr M that I think it's time, and didn't really know I was saying it. My heart made the choice for my brain. Rational thought and side effects and anxiety can't rule anymore, that smile, my reason for living, for fighting, for researching is what drives me. I can't lose it. My heart can't lose it. I need that smile to know that life is ok, because when she smiles at me ( as she so often does during the day and night) it's the only time I feel like life is ok. I get lost in that moment, that overwhelming feeling of having those blue eyes stare at me and that big gummy grin, and I know my little girl is happy and loves me. She does not know of the demons she fights, and I fight for her daily. She just knows that her mommy loves her, and her daddy loves her. And that is all I need for her to know. No, that isn't true. I need her to know (someday when she can understand) that I will do anything, everything for her to keep her safe and healthy. I will go to whatever lengths needed, push myself harder to get her the best care and treatment, reach out in more avenues to get her story heard..and the stories of her friends (and super moms) that we've met along our journey. Kindred mom spirits that share my frustration, my joys, my fears, my tears. Without them, and without the smile that is the light in my life..I would be lost in a sea of fear, guilt, doubt, anxiety, sadness, anger. So to you moms (super moms..you all know who you are..moms who have to watch or have watched their child/children struggle with health issues) I say thank you. For your support, friendship, kindness, laughs, distractions, coffee/tea latte tips. Please know that we will fight as hard for your causes as you have fought for ours.

I sit her second guessing myself even now. And I'm sure this will be the case all weekend. Should I do this, can I do this. I know the answer is yes, but my brain is fighting my heart right now...but my heart will win. Because my heart is my daughter, and I will do anything for her. And my heart knows that it will be ok, because that big smile and bright eyes tells me so.

Confusion takes its toll

2009-02-18T23:20:00.004-05:00

Well, lets start with the progress we have been making before we get into the sheer frustration and anxiety of choosing a med.

Over the past several days I've been noticing Monkey using her right leg more. She always has used it, but these last few days she has been a kicking maniac in her crib, and I've noticed that her leg is moving with a more fluid motion. (not the locking type motion she has had) She has also been lifting her legs up together using her lower abdominal muscles, and is bringing her legs up bent together. Before she would really only get her left leg part of the way up in front of her, now she is getting both of them up. She is also moving her right arm around more which I've noticed today. During PT today she was holding on to a toy on the floor mat with her right hand over her head (Jaime put her hand on it) and she took her left hand while still holding it in her right and started grabbing the toy. These are all HUGE developments for her. I've also noticed that her head isn't as wobbly when she is sitting up (supported still). I can't believe the change in her movement. Jaime said she was really loose today. I think she was tired because she was letting Jaime put her on her side and staying there with no complaints. We'll see how tomorrows PT goes. So, I'm very enthused about the leg movements and improvements with the arm.

Then there is the meds. We've essentially topped off with the Topamax right now (200mg / day). She was on 225mg but we had to drop a pill per the NYU neuro because she was so lethargic and really not eating well. Local neuro started her on Depekene last Thursday, and we were supposed to be on a increasing dose for the next 2 weeks. I had left a message for NYU last week because I wanted to talk to him about possibly going to Vigabatrin, but I forgot he was on vacation. I waited for him to call me yesterday but he didn't , so I left another message today. He called back this afternoon, and after I filled him in on what was going on he decided it would be best to drop back the Topamax dose and really treat aggressively with the Depekene right now. He said if we don't see a response in a few weeks, his recommendation would be ACTH. I spoke with him briefly again about Vigab, and he said if she had TSC (tuberous sclerous) he would DEFINITELY go with Vigab, but his thought right now is that ACTH would be more effective. He did tell me to get some other opinions, speak with other dr's about what they think we should do for treatment and then we can discuss treatment options again in a few weeks. I emailed Dr Chugani (from Detroit) and he said he would DEFINITELY go with Vigab starting at 250 mg (I think twice a day..can't remember. Have to look up the email) So that really pushed me to want to do Vigab, but now I am to the point where I will do whatever I have to. I have to call him next week to let him know how she is doing on the increased Depekene. So once again I am back in the ACTH vs Vigab boat. The struggle with how do I choose is killing me. What choice do I make? How do I know if it's the right choice, what if it is the wrong choice? Can I do the ACTH?? Do i have it in me? I know I will because I have to...but I worry all the same. I feel like I did before we went to see Dr. Miles for the first time. Lost, scared, confused, mad, sad, anxious, numb. Numb is a good adjective. Except for the stabbing pain in my head I've had all day courtesy of yet again another migraine.

So, that is what we are up to right now. We started the increase in depekene and decrease in Topamax tonight. We go to the ped on Friday for a general check up and weight check (he is so good..he has me come in every month to check on her) So, hopefully we will see a change with the increase in Depekene. Keep your fingers crossed for us!!

Thank you all as always for your support!!

Love,
us

Eye Appointment for the monkey..and Hope for Hannah project

2009-02-12T00:12:00.004-05:00

So for Charli it's been a quiet week really. We had an appointment with the eye dr yesterday. It took FOREVER. He is an odd duck, that's for sure. He said structurally her eyes are fine, they do have some movements that aren't normal (her eyes move out a bit farther than normal) but he said he does not feel she has any vision impairments at this time, and as she gets older she may have one eye see better than the other due to the stroke, so they would do a patch probably to strengthen the weaker eye. He feels the movements she has with her eyes (the deviation from the middle) is due to her stroke and or seizures. He said it could possibly resolve as she gets older, her seizures become under control, and her brain matures. If we choose to go on Vigab (which we probably will) he will monitor her as best he can for visual field issues. He was freaking out initally when we mentioned she might be going on it, but then he said the most important thing is seizure control obviously. And as Jen said, her son was on it for almost 4 years and has no visual issues. (something I need to drill into my husband) Other than that I was playing phone tag with our NYU neuro (who I totally forgot was on vacation this week) so they knocked down her afternoon dose by 25mg to try and combat some of the lethargy and appetite decrease. We will probably be making a switch when I speak with Dr Miles next week when he gets back.

Larry has had several appointments, and is going to get his bloodwork done every 2 days for his coumadin, so that's keeping us busy.

I wanted to take this opportunity to mention a friend of mine (well, two friends) who could use all the support and hands willing to help. Carrie is the super mom to Hannah, who is Charlis birth buddy. Hannah has been diagnosed with Gauchers disease. Right now they are in the process of finding out if it is type 2 or type 3 and Carrie is gearing up for a battle..and she needs recruits. And I wouldn't be a friend if I didn't help support her as she has supported me in my efforts to raise awareness for IS and for pediatric stroke. Carrie has set up a board the Hope for Hannah project..and this board serves as a place for people to give ideas, help with research, awareness, give fundraising ideas etc. If you have the time, please check out her blog http://littlemisshannah.com/ and if you have facebook you can join the Hope for Hannah cause (it's on my page as well) Thank you all in advance!

Some info about IS.

2009-02-07T20:33:00.001-05:00

http://www.infantilespasms.com/ Brocs story

What is it like?

Here's a typical story: "At first I thought Chris was just having the little body jerks when he was moved or startled, like my other children had when they were infants. But then I knew something was wrong. The jerks became more violent, and his tiny body was thrust forward and his arms flew apart. They only lasted a few seconds but started to occur in groups lasting a few minutes. It was so hard to see such a young baby having these things."

Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.

Infantile spasms are most common just after waking up and rarely occur during sleep.

Who gets it?

Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.

Tell me more

When a baby with infantile spasms has an EEG, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis.

Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling.

How is it treated?

Steroid therapy (adrenocorticotropic hormone [ACTH] or prednisone) is the primary treatment for infantile spasms. Some experts recommend trying a seizure medicine such as Sabril (vigabatrin, not available in the United States), Depakote (valproate), or Topamax (topiramate) before steroid therapy. In countries where it is available, Sabril is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. It is especially effective for children with tuberous sclerosis (a disorder associated with abnormalities involving the brain, skin, heart, and other parts of the body). Sabril is associated with damage to the retina of the eye and should be used with caution in children.

What's the outlook?

Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.

When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome.

http://www.epilepsy.com

Could I possibly be dreaming?

2009-02-07T20:02:00.003-05:00

Hi all. The baby is asleep, and I'll try and update as best I can without making this into a never ending blog. Let's go back to where I left off. I'll time line it so it's less "wordy"

December 26th- baby starts having seizures the night of her 6 month shots. That morning around 9 (after speaking with her pediatrician who advised us if it happened again go to the ER) it happened again. 7 hours in the ER, where they took her temperature 3 times, refused to look at her birth records I brought, and the neuro resident examined her with a pen light they made the determination she wasn't having seizures as she didn't have one there. I started getting really p.o'd and requested to see the ER attending, who to pacify me gave her a dose of phenobarbital and sent us home with some. An hour after we got home she had several more seizures, I called the on call pediatrician who sent us back to the hospital to be directly admitted. We stayed until Sunday afternoon, and they did nothing in the hospital except put an IV port in her head. The neurologist that came in on Sunday didn't look at the video I had, or even examine her. He sat in a chair across the room and talked to me. Then left. No EEG, no MRI. Nothing.

December 29th- went to my regular pediatrician who ordered an EEG. Thank God for him.

January 5th- Saw pedi neuro, he said he thinks it's muscle spasms/ spastic movement, a product of the stroke

January 6th- 1st EEG. It was horrible. The baby cried almost the whole time, they glued the electrodes to her head, and she still has glue on her head from it. We've since found out they have paste that they use, and usually don't glue them on for short term EEG's.

January 7th- Our Pedi neuro calls and tells us she has hyppsarrythmia (otherwise known as Infatile Spasms). This is what I had feared all along, but kept telling myself since the neuro didn't think it was an issue I shouldn't. Infantile spasms is a catastrophic, rare form of epilepsy that is very difficult to treat, and causes developmental delay and regression. 1st line treatment is usually steroids (side effects can be hypertension, problems with glucose/electrolytes, irritablity, weight gain, increased appetite, kidney issues, decrease immune function) or Vigabitrin (not FDA approved, major side effect peripheral vision loss). We were started on Topamax (an anti eleptic drug/migraine drug).

January something or other- baby has a series of seizures and can't tell if she is responsive during it, so we call 911 and take the ambulance to the ER. Her evaluation there was good, she stopped seizing before the paramedics even showed up, and played the whole time in the ER.

January 26th- went to NYU to see neuro specialist who specializes in IS and childhood epilepsy. He increased Topamax to a very high dose in a 3 week step up period. Side effects lethargy, decreased appetite, metabolic acidosis, kidney stones.

January 31st- We are supposed to leave for CHOP on Monday February 2nd for our Feb 3rd appointment. Larry wakes up, starts complaining of a headache. 330 takes ibuprofen. Still complaining of what we think is migraine symptoms. I gave him a Treximet (migraine med..I can't take it because I had a bad reaction. Same as Imitrex, what he usually takes..just has naproxen in it) Starts complaining of "bright spots in his vision" and double vision. Goes to lay down. I check on him a few minutes later and he is complaining of burning in his right hand and fingers. I notice his left pupil is small and fixed. Our room is dark, so it shouldn't be small. I tell him we need to go to the ER, NOW. He says no, it's a migraine. I tell him no, we need to leave. He says no. A few minutes later he says he has pressure and tinigling behind his left eye and in his face. I say that's it, we are going. Get to the ER and I tell them I think he is having a stroke. They immediately take him in. While talking to the ER dr I notice his speech pattern is different. CT's, EKG's are done. When he came back from the CT his speech had improved. Waiting for MRI. ER dr comes in and shuts the door. CT was ok, no masses. CT angio showed he has a clot/blockage of his internal cartoid artery. He was having a stroke. He was admitted, had an angiogram Monday Feb 2nd that showed a cartoid artery dissection. He had a tear in his carotid and the flap from the tear is what was causing the blockage. It is at the base of the brain, too risky to operate and because he has good flow in all his other vessels they don't feel the need for invasive treatment. He came home Feb 4th on blood thinners, Lipitor and needs to be closely monitored right now. They gave us no indication as to why this happened. Because his brain redirected the blood so quickly his stroke symptoms stopped and no other neurological deficits occured. Neuro said to follow up 6-8 weeeks. We saw our primary yesterday who said he needs to be seen before that...can't believe they would make him wait so long. He is home, tired, anxious, and not understanding why this happened.

Feburary 7th- as of last night the baby started refusing solid food (so she is not taking her seizure medicine now because she gets it in her food) She cries when she sees the spoon. As soon as she gets a taste of the sprinkles in her mouth she holds it under her tongue, usually gags, and throws up. Or she cries until eventually it just goes down her throat. I have been able to get maybe 2 full doses in her in 36 hours. Obviously seizure activity has been very bad today. I called the ped in desperation and got tablets to crush hoping that will work so she can take her meds. We were supposed to start her last step up today. We are pretty sure we are going to have to choose either Vigabitrin or ACTH now, because the Topamax isn't providing enough reduction in spasms and now she won't take it anyway. (at her worst she had over 200 spasms in one day).

So, that is what I've been up to lately. Top that off with my usual migraines and overall anxiety and depression (which today has been horrible). I've pretty much cried all day today because the baby won't take her meds, and I feel like a failure. I can't keep her safe and protected from all of this horribleness (is that a word?) that plagues her, and I can't get her meds in her to make her seizures decrease. And my husband is a mess, crying most of the time, depressed because he thinks it's his fault we didn't go to CHOP, scared about what is going on with him, scared about what treatment we will do next with the baby, stressed because I am so stressed. I've tried so hard to keep it together...but today it just all fell apart.

I really appreciate everyone who takes the time to read this, and to leave kind words and thoughts. I have better support from my online friends than I do from my best friends (who literally havent called me..one not at all and one not since we got the IS diagnosis). I thank you all for your continued support, and ask that if you pray just say a little prayer for my husband and my daughter, and if you aren't religous maybe just send a good thought their way. It is much appreciated.

I'll blog more later, I just wanted to let everyone know what was going on, and why I haven't blogged sooner. Hopefully I'll have better news to blog about.

Thank you all again!

I'm sorry I've been gone so long...

2009-02-07T18:48:00.001-05:00

Thank you all who have visited, are following, and have left comments. I'm sorry I've been absent for such a long time, but it has been one HELL of a month (pardon my mouth). I asked Larry (my husband) to go on baby duty after dinner so I can blog...as I need some time to vent. So I will be back soon and fill everyone in on the chaos that has been happening around here. Thank you all for stopping by! Your support means the WORLD to me!

Hope all of you are well, and your little ones are wonderful and healthy!

BIG scare...now more unknowns

2008-12-27T08:17:00.000-05:00

Charli had her 6 mo immunizations yesterday. She had been cranky all day (as she has been the last week or so..we think she is teething). She woke twice last night (unsure of time) crying out..she has done this occasionally in the past..I gave her the bink and she feel back to sleep. She woke a third time and my husband was just coming to bed (around 4a or so) and I went to give her the bink and could feel the heat coming off of her. I flipped the light on and she was pinker than pink, her whole face. I took her temp, 101.3 rectal. She has never gone above 99.5 for anything, not with her ear infection or shots. I called the ped and while waiting for him to call back I started noticing a pattern she was making with her right arm (her affected stroke side..something she never does). She would bring it off the bed in like a half arc to straight up in front of her then put it down again. I looked at her face and her eyes were open, she was moving her head back and forth (not fast, but like she does almost when she sleeps and is restless) and she was smacking her lips and kind of licking them with her tongue. she was also kind of straightening her legs out at the same time together..tensing them. That was when I started to panic. The ped called, I told him all of this and he said to try and record it with a camera if I could so they could see if it was definitely a seizure. My DH couldn't find the camera *he had taken his Lunesta already and was OUT OF IT!* and while still on the phone with the ped she stopped doing it, at the same time my DH was talking to her and she started opening her mouth and moving her left arm at him (she looks at us and opens her mouth wide ..like a little bird all the time. Not sure why she does it, I guess it's a happy thing). Ped said he thinks it's a partial seizure given the fact she "came to" or oriented again so quickly, and didn't really lose consciousness. I have no idea what a partial seizure is, or really what to expect with febrile seizures (FTM here) he said it didn't sound like a febrile seizure to him, and based on her stroke history she is at risk to have seizures with fever I guess (no one ever told us that before...but It's something I've always worried about for some reason. I'm OCD about her temp and never knew why really) We were told in the NICU and at follow up with the ped neuro she didn't have seizures and they didn't think she would have any. Now I'm freaking out (although surprisingly calm given how anxious I usually am) He wants me to call neuro and get a repeat MRI and EEG (both of which haven't been done since NICU) and if her temp goes over 102 or she seems to have another "episode" call 911 or go to ER depending on how stable she is. I think my calm is I need to be calm and keep my wits about me in case something else happens. One thing I've always been is calm in a crisis. My mom is on her way down to watch her so I can get some sleep later. I'm sure I'll lose it then. I've always been so scared of her having a febrile seizure, and now the ped says she may need seizure meds etc. I guess the point to my rant is has anyone dealt with this "partial seizure" before, and what really happens during a seizure? For working in health care as long as I have I've never seen anyone actually have a seizure. I know what they tell you to look for, but should I be noticing or looking for anything else that they don't normally tell you about?

Somewhat of a mess, part 2.

2008-12-18T23:12:00.002-05:00

It's been too long since I've been able to blog. Blogging is cathartic for me. I need time to do it more often. I'm not sure what my deal is today. Nothing in particular has me upset today, just random general things. The baby has been teething (or we think is teething) this week. I brought her in to the ped Monday because she was cranky over the weekend, and pulling on her ear again Sunday. I thought maybe her ear infection was back. (the cranky could be we were staying at my in laws so her usual routines were interrupted a bit due to the massive ice storm we had. I know I was cranky) He said she had fluid in her ear but they were not infected at this point. He looked at her teeth and said he thinks the two are coming in, they aren't through yet, but are making their way. Needless to say we had one night of blood curdling screams, and on and off crankiness and general not happy monkey this week. She hasn't wanted to play, she wanted NO PART of PT today (which is another aggravation I had..not on her part, on my therapist..I'll get to that). I feel horrible that I can't help her with her pain. And I'm stressing because I can't seem to find anything for her teething that she can really hold on to. Everything is too bulky, or too big, or would require two hands to hold. So she just mostly chews on her fist. I think I'm stressed because I know the difficulty she is having trying to chew on things with just her one hand, and I don't know what to do about it. I try and hold the things for her, or encourage her right hand by placing it on the object, but most of the time she gets mad at me. I hope they come in soon. I hate seeing her in pain. Top that off with she has been constipated (not that you needed to know that lol) so she is in double pain. Poor thing.

So, PT today. Or lack there of. The therapist calls at 1:56p to say she is running late, has to see one more person, and will be there around 2:45 (our session is at 2) I was rather annoyed that she waited until 4 minutes before our session to call. But whatever. She said "I hope it will be ok" I said "we'll see, the baby was up late last night and hasn't napped today, so she is pretty tired and not too happy" She goes, well maybe she'll sleep now and be awake when I get there. I was like " she doesn't seem like she wants to go down at this moment". So, Jaime gets here, the baby is already on her way to angry, and Jaime starts playing with the baby and trying to do some stuff with her and Charli freaks out. She went into a full meltdown, complete with sobs and those cries where the mouth is open, but nothing comes out. Much like I had the other night when her teeth (I'm assuming teeth) were bothering her. So she puts her down on the ground and takes her socks off to continue to do therapy. My child is practically choking at this point she is crying so hard (in the meantime I kept holding my hands out for her to give her to me) so I snatch her up and I'm like "ok, thats it" It took me a bit to get her to settle down, and after she did she fell asleep in a matter of minutes. She was out cold poor thing. Of course she only napped for 40 minutes, I'm thinking she would go down for a few hours. I don't know, our last session I was kind of aggravated as well because I thought she was unusually rough with the way she was handling her, but I treat her like she is porcelain most of the time, so I figured I'm just being PMS'y and overly critical. So Jaime says her right arm seemed tight again today, and was saying that when she moves the baby side to side or front to back, the baby should be moving her head the opposite direction and she isn't doing that. So of course I got all freaked out and am nervous now. We've always had good reports from our therapy sessions, and now I'm anxious again. But, the other day the baby sat unassisted (except for her baby boppy) for I'm not sure how long (not long mind you, but it was a big accomplishment anyway!) . We tried again today but didn't get too far because she got mad.
The other thing is she needs to get out of her bouncer. I want to get her an excersaucer or jumperoo ( I haven't figured out what would be better for her yet) so she can get out of the bouncy seat. She will only tolerate floor time for so long, and even less time in the bumbo. Jaime wants me to turn her in the seat to encourage her looking to the right more, but then I'm on her other side so she is looking more to the left to see me. It seems like no matter what way I turn her bouncy there are more cons than pros. The way she is now she can see whats going on, the tree, the cats and dog, me, Larry, the TV (very important for when Pinky Dinky Doo or hockey is on lol). So I'm concerned about her not looking to the right as much again now. She was doing pretty well with that for a while. I think getting an exersaucer (or something similar) will encourage more midline and hopefully equal time looking to the sides.
I am just overthinking and stressing everything today. Top that off with I've been following a heartbreaking story from the BBC boards and I'm just sort of an emotional mess. I've been praying for Kayleigh, and asking everying to do the same. This little girl has been through so much, and is such a little fighter. I hope they get a Christmas miracle.

It makes me realize just how lucky I am to be home with my angel.. she's here with me, and I love her more than anything in this world.

Nothing short of a mess right now

2008-12-02T22:29:00.002-05:00

I thought I was scared enough in the NICU, or at our follow up appointments. Today's events may have topped that. I was putting Charli's ear drops in her ears this afternoon, first the left side, then the right (well..trying to anyway, because I can't seem to get them in her ears..even when she is cooperating) and she was falling alseep on her right side (it was nap time). She usually sleeps on her side (alternating) at naps, because of her plagiocephaly. I was about to leave the room when I noticed the chewy (bink) had fallen out of her mouth (more like she spit it out). I went to give it back to her when I saw her right arm was completely blue. Bluer than blue. I picked her up and frantically rushed around trying to find the phone to call 911 (the only thought in my head) and noticed the color coming back, so we rocked a bit and I massaged it and let her relax for a few minutes. After calling my mom I decided it was best to call the ped and let them know. What they told me when I called nearly made me lose it. Ok, I really did lose it. I called and explained the situation, and that I was concerned because it was her affected side after the stroke, to which the nurse promptly replied "she needs to come in so we can check and make sure there is no damage, her circulation is good, and that she doesn't have a clot and have another stroke." WHAT!!!!!!! I literally almost passed out. Probably a good time for me to start the blood pressure meds that I've been putting off at this point. I never even CONSIDERED for a minute she could have another stroke because of this. So now I'm frantically and hysterically calling my mother in law at work to come get us ( the brakes in our other car gave out yesterday so I can't drive it), and trying to have someone find Larry at work to tell him..but he's in a meeting. We get to the dr (our ped was off today) and see the PA whom we've never seen before...she comes in and does her exam and says she seems great, she has a strong pulse in that arm...was moving (to the best of her ability) but she would speak with the other 2 dr's on and see if they wanted to do tests. I'm thinking..yes, please..tests. I can't wonder and worry about this now! She comes in and says no tests. I'm thinking ..that's it? You put the fear of God in me and now you are sending us home with a feel better, she's so cute? So I call the neurologists office from the parking lot...thinking I'll speak with his nurse and tell her what happened and see what she thinks..and he gets on the phone. Which I guess was a good thing. I'm not entirely fond of him, but what he said made sense (he basically in different "neurologist" lingo backed up what the ped said, it was probably positional, she isn't at risk (as far as they know) for clots, "normal" children have issues like that where they lay on a limb and forget to move or don't move and lose circulation yadda yadda yadda. He said that he believes the pulmonary hemorrhage is what caused the stroke (this is the first time he's ever indicated what a possible cause was).So for once I'm grateful for speaking with him. But I'm still not at ease. I can't get that thought out of my head..and it's scaring me. I'm trying so hard to push it out of my mind..but it isn't working. It also brings me back to my intitial "why aren't we seeing a pulmonologist for follow up?" which I am going to call tomorrow and find one and make an appointment. I'll deal with the regular ped later regarding it. So my little monkey is fast asleep...and I'm a mess. I hope she feels better tomorrow. She seemed better this morning, but acted like she hasn't felt well all day again, especially tonight. Of course two trips to the dr in two days probably didn't help. Sigh. Ok, I think I'm going to go find some cookies, and call it a night. It certainly has been a long day.

Our first sick trip to the ped ;o(

2008-12-01T22:49:00.003-05:00

I can't believe my baby is 5 months old today!!!
So the past few days Charli has been very fussy and irritable. (which is so NOT her, she generally is the happiest baby ever!) so I knew something was up. Then today I noticed her pulling on her left ear. So I moved our ped appointment from Friday to today. He looked in her left ear, and said "nope..it's fine" looked in the right and went "oh my..that is infected!" I felt so bad. And the poor thing had to tug on her left ear because she can't get to her right ear. My poor baby. She is so uncomfortable. So we started Amoxicillin and ear drops tonight. Hopefully she will feel better soon. I hate knowing she is sick and in pain. It's killing me. She's been such a snuggle bug today tho. That was nice! She now weighs 16 lbs 10 oz (2 pounds since last months appointment) and her head grew what he said was a centimeter and a half. I have to go and look at her records because I think last time the nurse measured incorrectly and Dr. B checked it and got a slightly smaller number..which would mean she went up 2 and half cm's I think. I can't remember tho..I really need to find that piece of paper.
Speaking of paper. I have almost everything I need to send her records to CHOP. I spoke with them today and if I can get to St. Petes to get her NICU discharge summary I can send everything this week. That is my goal! I still need to do a check list and make sure I have everything ready to go.
On a different note...the monkey was really using her right hand alot today. ( at least she was when I was holding her. She tries SO hard to get her right hand in her mouth when she has a toy in the left. She really wants to get them together.) PT last week was basically watching her to see what she can do and what she needs to work on, and teaching me some ways to stretch her muscles out, and help loosen them up a bit. Apparently it's worked because I swear since Wednesday she has been moving the right hand to her mouth more. (It could be I'm seeing what I want to see...but I'm going with she is a quick study) I can't wait for our PT this week. I just hope she feels better by then because otherwise she isn't going to want to play so much. Our therapist is very nice. I was a bit nervous about how Charli would respond to her, but she walked over to her and smiled at her, and Charli gave her a big smile back. I guess she likes her too! Ok, I guess I'm going to watch my DVR'd General Hospital and go to bed. Everyone else is already asleep...so I'm listening to easy listening with the xmas lights on and enjoying the quiet. I'll write soon...here are some pics from today

Am I nuts?

2008-11-25T12:21:00.002-05:00

So the monkey woke up late this morning for her bottle. She also took a while before falling back to sleep (our usual routine is up around 630a-730a, bottle, change diaper, then back to sleep for anywhere between 40 minutes and 2 hours or so) So far she has been asleep for going on 3 hours!!!! And instead of enjoying my quiet time, I'm pacing between the computer and the bedroom wanting her to wake up! I miss her, and I want to snuggle. Completely selfish, I know. I tried to sleep but just couldn't for some reason, so instead of doing what I should be doing (mopping floors etc) I'm blogging. It's a lazy rainy day, I'm only on my first cup of coffee, and I really just want her to wake up!
So on a different note, we start PT tomorrow at 10a. *hopefully based on todays schedule already she won't sleep through it!* As excited as I am about this, I now find myself getting anxious. Anytime there is a professional involved, it opens the door for them to tell me more things that I don't see. I hate that feeling. But in my rational mind I know this is going to be so good for her, and we are going to accomplish great things with our therapist. I have spoken to her on the phone a few times, and she seems very nice. She has 2 kids, and a very hectic schedule. Our day is actually supposed to be Thursday..but given it's turkey day we'll do tomorrow instead. I just hope the morning time will work for her tomorrow. We are scheduling in the afternoon because it's her most active time (and obviously like today, morning appointments will be a crap shoot if she decides to slumber a bit longer) Other than that nothing really going on right now. We have an appointment with the regular ped next week(is it next week already??) Dec 5th. to check her head circumference. I was concerned because the dev ped wrote in his dictated letter that her head circum. had "dropped percentiles". Turns out this is totally inaccurate. I mentioned it to my ped at her 4 month check up and he checked her twice, and she had gone up 2 cm, and was perfectly normal and steadily growing according to him. (I think she was in the same percentile group per him...I can't really remember, but she hadn't gone down at all!) Reason number a billion why I want to seek a second opinion from dr's who actually have a clue! I have to run around and pick up different documents (the final ones) to send in my packet of records to Childrens today. (if my mom ever gets here...I don't want to bring the baby out because it is raining and supposed to turn to snow...but I haven't heard from her yet.)
I know I'll kick myself for saying this later when I want to check my email, but YAY. She's awake. Gotta run!

Major accomplishment!

2008-11-22T15:05:00.000-05:00

Yesterday Charli was on her monkey mat on her side, and she rolled over on to her belly again (she's done this a few times before). She got her right hand stuck under her body as she has done in the past. THIS TIME tho she worked SO HARD, she scrunched her knees up and put her butt in the air, lifted her head and was looking around for a solution, and kind of tipped to the left a bit and pulled her hand out!!!!!!!!!! This was HUGE for her. She hadn't been able to figure out how to get that arm out before, and I didn't touch her at all! I was SO PROUD OF HER! What a big day for us!!

The mighty monkey rocks!

I'll try and update later...someone is up from a nap now!