730 days....

well, survived another anniversary. Yesterday and this morning were definitely rough and things were not looking good, but after a good several laughs with Joyce and an outing with my mom I'm feeling better. Happier. Thankful. I'm glad the overwhelming anxiety has ceased for the moment (to rear it's head in a few days I'm sure) but for now I'm just grateful. Grateful for the gifted team of physicians, nurses, NPs, PAs and everyone else who worked with us in Detroit. Blythe, the music therapist. Freddy the front desk guy. BIGBYS of course. Subway Pizzas (which I lived on in Detroit for that month)  The shunt as much as I hate it, it saved her. And it was very closing to going the other way.  Every minute I've had with Charli, that we have all had with Charli since 5-26-10 has been miraculous. Her strength has never been more evident than this last year while in and out of the hospital God knows how many times, 4 shunt revisions, starting full day 5 day a week pre school and still continually making progress.Yes she has missed a lot of days due to drs appointments, her being tired, sick whatever, but she STILL continues to make gains. NONE of this would be possible if we had not had the surgery. I can't even let myself think about the possibilities if we HADN'T had the surgery. Sub clinically seizing every 2 seconds. That is essentially status. Who knows how long she had been seizing like that. Transition into LGS would have been completed. Charli was rare, she made progress (albeit slowly) despite the frequency of seizures. Dr. Chugani was very surprised. But who knows how long she could have kept going at that pace. There were no more meds to try, no other options. She was a clear surgical candidate. It was what we needed to do and we had to be in Detroit.  Sometimes the amount of trauma this family has suffered overall escapes me. But as I looked back thru the pictures, the montage, it is so real I feel raw. Her birth, and the hell that ensued after, her seizing the day after Christmas, the IS diagnosis, her father having a spontaneous carotid artery dissection and stroke when she was 6 months old, the agonizing months and months of seizure meds, changes, force feeding her meds, food aversion, the hellish 20 some odd hours spent in the ER when we thought she was having an aortic dissection and we couldn't get any peds anesthesia to come in and do the tests she needed to rule it out, and we had no idea if she would live thru the night, traveling all over New England for drs and tests. steroids, the decision to go on Vigabatrin and risk the vision loss to get rid of the seizures.  Hoping that would be our miracle drug. The disappointment when it wasn't.  The thought and amount of process and time going in to the surgery decision. And then going to Detroit. Where it just all made sense. I wish I had gone there about a year earlier.  It just all clicked. It was right. Everything they said, how she would be, why she was seizing, it all made sense.  Going thru the surgery was pure hell. Nothing short of it. The hemi was bad, but no where near as bad as the shunt. that was the most agony I've ever been in.  Not knowing, anything. would she live? Did she have a stroke? is the clot going to break and cause a stroke? will she be the same?  Could she survive the surgery only to have another possibly fatal stroke from the clot in her transverse sagittal sinus?  But that pressure change was another miracle. Brought my girl right back to me. Smiles and all (after 12 hours of her sleeping off anesthesia)  I had never been more happy in my life.  We were going to do intensive in pt PT there, but after the shunt it was clear she needed time to just rest and go home. and that's what we did. shortly after being home for a week or two I get a call I have stage 2 superficial spreading melanoma. Not what I was expecting to hear. And a few months later my mom was diagnosed with it as well.  And I don't know all the details , but I believe Charli's other grandma Kitty had thyroid surgery because of a malignancy. For some reason it seems we just can't catch a break. But I'll tell you this. Nobody loves this girl more than me, but it's a close second with her dad, and then our families and friends. Larry and  I would die for her if it meant she would be ok. And she is lucky to have grandparents and cousins who love her , and friends who think of her always and send good thoughts and love.  We are lucky. Larry and I are lucky, because we have the most amazing daughter, a beautiful girl with a big heart, strength that blows me away, and love and smiles to share with everyone. I know she teaches me things daily. Her persistence and will is so unbelievably strong.  I knew from the first day in NICU I had a fighter. She has had to fight for so much, and thru so much, but she always does it with a smile (and some complaints sometimes) but always smiles. And big bright appreciative eyes.  I've never been more proud in my life. She is my hero. She always surprises me, impresses me, makes me laugh. We have the most amazing daughter. We've all been thru hell. Most recently Larry just underwent surgery to repair an inguinal hernia. sometimes it feels as if its neverendless.   But we got thru it all, and we will get thru it all again if need be. Because that little girl, I'll do whatever I need to, and her dad will to. The one thing ALL of us can agree on is Charli, and she deserves to have the best.  I love you Gooch. I'm glad you had a good day at Daddys tonight. I miss you. I love you more than anything <3

the countdown begins...

For some reason all I can think about today is the chair. I don't remember being uncomfortable really.. just bouncing nervously the entire day.  But that chair. I sat perched on the edge, listening to All That Remains and FFDP, over and over again. Waiting. People came and went. Dr's came in and gave updates to the other families. And I clung to the edge of that chair like it was the Titanic.  I don't really remember much else (at least right now) except for the immediate pre op time. And when Dr. Asano came out. I think back to 2 years ago.. and nothing seems real. None of it. Like it happened to someone else. Well, it has.. many someone elses. Most recently Charli's friend Jadon, who has had some great publicity about the procedure and the hospital. It's all very foggy for me. Charli sat with me today singing the Fresh Beat song and I thought back to the chair. The endless hours. And my little girl, who underwent one of the most RADICAL procedures that can be done... was singing a song for me today.  I don't think there is a day that goes by that I don't think of it. But as the anniversary gets closer it's like black and white turns to technicolor. Memories fade in and out constantly. EVD, vomiting, the look on her face, the smile she had in ICU when she woke up, the bag that hung next to her crib for her transfusion, the blank look in her eyes before her shunt, when Dr. Chitlur showed up close to 7p and told me she had a clot in her sagittal sinus and they thought she had a stroke.. not knowing if I'd ever see that smile again when they took her back to OR. Not really knowing if she'd live, much less be my Charli again.. sobbing watching whatever movie that was about the guy who died and the dog who sat outside the train station waiting for him, the day that never ended until she woke up from anesthesia and looked around still not smiling, until I did a dancey dance. The relief that I saw that crooked smile again. There it was. Tired, but it was there. My girl. My incredibly strong amazing girl.  I still can't believe it's been 2 years. ... to be continued.

We made it to the SEMI FINALS for the NMEDA Mobility Awareness Month!!!

Best Mother's Day/ Mother's Day weekend. Ever.

 A very COMPLETE unexpected surprise from Charli when she came home from Daddy's.

 It made me cry. The kindness and thought put in to it means more than anyone will ever know. Thank you Grandma Kitty <3  Happy Mothers Day to you, Mema, Carrie, and Marie.

 A gift from my IS family. My angels here on earth, who wanted to assure safety and sanity on my part with her being in the big girl room. Most wonderful surprise, an amazing gift from some amazing women that I am proud to call friends, although they have many titles.. super moms, angels etc. Thank you all for such a great weekend.

Back to the 313

So it's been a LOOONG time since I've blogged. I guess for a lot of reasons. But I feel it's time again. We have had a LOT going on, so much going on in my head.

I guess I'll start with now and work my way back. Slowly. There is a lot to talk about.. first...before anything.. I need to talk about the passing of Charli's birth buddy, her first friend in life... Hannah. Hannah was such a beautiful amazing child, and she and her mommy have given me strength and inspiration from day 1. You can see her photo book from the balloon releases done all over the country here. Hannah, we love you. Our group has also had several other losses in the last few months, and it's becoming quite hard for us to take. Please, just say a prayer for all of our sweet kiddos, the ones here and the ones who have their wings and our watching over us all.

So, my girl. She had a rough evening. I had to give her codeine...she was screaming and crying and grabbing her head, pulling her hair. It could be just the weather (we are having our first actual snow storm finally this year) or it could be something else. I'm just hoping to God that we can get thru the next few days and make it to Detroit. We are headed to Detroit because about almost 2 months ago now Charli was hospitalized for what seemed like classic shunt failure/ICP change. Scans negative..no big surprise. They had to give her Versed and Fentanyl in the ER plus Zofran. When we got to the floor (after arriving in the ER via ambulance from a frantic 911 call because she had been inconsolable for hours and then vomited) she started have very bizarre neurological changes. She was hyper sensitive to light, noise, had a very strong prominent ATNR to the left, was moving her right arm in strange manners. Very much like what she used to do when she would seize. I kind of wrote it off as side effect from the meds, pain meds have a tendency to make your brain hyper excitable. But something that occurred about a week before this hospitalization (same shunty type behavior) had an accompanying tone change on her right side that didn't resolve. Since she went back to school they had noted some changes on the right side as well. So we are headed to Detroit to A. rule out the possibility that she had another small infarct and that is why we have this tone change and B. hopefully figure out a way to deal with this constant shunt issue. Every ER trip to Alb Med is getting worse. Charli was terrified of everyone when we were just hospitalized, and I can't keep subjecting her to this bullshit when they dont really have a clue as to what they are doing.

I'm getting nervous. I realize that if she had a TIA or a small stroke it's already done. Nothing to be done about it. But I don't know if I'm ready to hear it or not. I'm not evenly remotely recovered from ...anything! Plus the potential for this being something vascular and needing intervention exists also and that scares the shit out of me. She hasn't had an MRI in I don't even know how long...and I get very nervous when she has them. And they are doing an MR Angio as well. We are going to see Dr. Chugani and Dr. Sood, and if need be I suppose we can get in to Dr.Chitlur quickly. She has the history of the clot in the transverse sag sinus, which is what makes me nervous as hell. So that's why we are off to Detroit this weekend and next week.

Overall, aside from the shunt stuff she is doing AMAZING. Her language is astounding. She started school in September with 43 words, and she easily (I've lost count) has over 110 words and several 2-3 word sentences. She pretty much says at least one new word a day. Usually more. She is doing really well in her gait trainer at school, she is recognizing and saying her friends names in circle time. Eating is still an issue. Gotta figure out where to go from here with that. She is doing a hell of a lot better than ever, but I have to get her off the high sodium lunchables and figure out a way around the SPD picky issues.

Well, that's about all I can muster for now. I have a lot in my head, but it's overlapping and making my head hurt now.

I'm going to go sleep while my girl is asleep. (in her BIG GIRL bed!!!!!)

I'll try and get on her more often. Sorry I've been absent for so long.

Love you all.

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.

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.