Thursday, May 26, 2011

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

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.

Wednesday, May 25, 2011

364 days.....

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.

Sunday, April 17, 2011

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


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...... :)

Saturday, April 9, 2011

Hello Detroit my old friend

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.

Tuesday, April 5, 2011

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

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.

Monday, April 4, 2011

New kicks and kickin butt.

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.

Sunday, March 27, 2011

Charli 2, accumulation 0

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...

Monday, March 21, 2011

accumulation

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.

Sunday, March 13, 2011

Let's talk about STROKE, baby.

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.

Saturday, March 12, 2011

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






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.

Saturday, March 5, 2011

top o the blog ta ya.



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

Monday, February 28, 2011

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

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!

Monday, February 21, 2011

The Mighty Monkey: Bearduary

The Mighty Monkey: Bearduary

Bearduary



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.

Thursday, February 17, 2011

March Madness indeed!!!!





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

Sunday, February 13, 2011

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



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

Wednesday, February 2, 2011

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




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

Monday, January 31, 2011

Random....

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.



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...

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

Saturday, January 22, 2011

abstract. sometimes it's all I know.




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.

Saturday, January 15, 2011

The Monkey Mat...a photo tribute Part 2






video

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