Sunday, June 30, 2013

Well, I guess it's about time I got around to blogging!

Hello world. It's been a while. A LOT has happened since my last blog post. We've seen another hemi anniversary come and go. We've had NUMEROUS hospitalizations and several surgeries. We've set up shop in Childrens Hospital of Boston with Dr. Benjamin Warf, neurosurgeon and humanitarian extraordinaire.   He performed the last several revisions (Sept '12, March '13 and May '13) and I love him to pieces. Charli also had tubes put in her ears during the last revision because since Nov '13 she had 9 ear infections.  She's officially had 12 surgeries, 11 brain , 1 ear.

We went on Charli's Make A Wish trip in October 2012. We went to Florida and stayed at Give Kids the World and went to Sea World and Disney, and went to the beach which she LOVED.  I will try and blog about that separately, because it deserves it's own post. 

Charli has lost several friends this past year, but most recently was her soul mate JayJay, the son of my friend Kari. To say I'm still not recovered is putting it mildly. But Jay has come to visit Charli a few times. And I always look forward to him visiting again. 

Today as you can all see is June 30th. A start (or continuation of) something 5 years ago that would change our lives forever. I don't know that it's the hardest thing I've ever been thru in the last 5 years, but at the time I didn't know how I'd ever get thru it.   We knew Charli was in trouble, and the drs didn't seem to want to speed things up at all. So there she sat, in distress the whole time. Having a stroke the whole time. And there was NOTHING I could do about it. I sat there paralyzed from my arms down, praying to whatever I could to please get my baby out safely. We talked, all the time. I kissed her first sonogram picture every single night cuz I had it taped on the wall on my side of the bed.  I told her night night peanut, every night. I told her about all the things we were going to do, and I would teach her. NEVER suspecting there would EVER be anything wrong.   Nothing could have ever prepared me for the few days of my failed induction and the 48 hours after that.  It seems so long ago but I can close my eyes and be there instantly. Every word out of the neuros mouth,  those initial things they first told us.. massive brain damage, little to no normal brain activity. What the FUCK. I had just been to the dr a week ago and everything was fine!  Obviously, every year it's rough. Of course it's a celebration of her life, and these last few years a bigger celebration of all she has overcome. But it still hurts. And it still leaves me with questions that will never be answered. People who should be held accountable that never will be. It still makes me relive every emotional pain I felt those 5 days I was in there. Because the physical pain of the c section was NOTHING compared to the emotional havoc that was being thrown our way.  

But despite the dwelling, and grieving, and reliving... there are BIGGER things to focus on. Charlotte Hayes Gill will graduate Pre K on August 16th. She will attend Kindergarten in the Fall, and has a LOADED IEP. Despite the 5 surgeries Charli has had since last summer she has made SO much progress. Her vocabulary is INSANE.  She is starting to have emerging expressive language and saying things in 4 word sentences. Sometimes more. She knows and says so much I can't even keep track of it.  She knows all the words to her favorite shows. She started drinking from a straw with her SLP in school. (still trying at home, she wont do it here.)  Apparently she loves salami sandwiches which she eats at school. She LOVES music. She sings, in key, with perfect rhythm. She has been walking better since this last revision. She missed almost this entire year of school due to shunt and ear issues. When she came back in May she fell right in no issues at all, participated and was so happy. School couldn't believe how great she was doing with therapy MUCH LESS that she transitioned so well. Of course we have hicccups, but that is to be expected.   Charli has blown us all away...again, with how much she has done, regained (she lost ability to sit independently in the last several months between shunt revisions...and regained it when she went back to school.) She's pulling from sit to stand in pool again, wheeling her wheelchair, walking with max assist with no complaints, and in the gait with moderate complaining. She is TOTALLY independent with her ipad, she does it all on her own.  She knows her ABC's, can count to 40, can count to 3 in spanish and chinese.  She knows quite a bit of Spanish actually.  She is still doing hippo every week, and after kindergarten I will get her in to outpatient aqua therapy again.  

She is the happiest, silliest, funniest most beautiful little girl.   I think as a family we are just all in awe of how incredible she is, her strength and resolve, and her ability to just show people pure love. She absolutely adores her cousins Carly and Tyler. Carly is so great with her and is growing up to be such an amazing young woman. When she goes to daddy's house she loves to get silly with grandpa, color with daddy, boss Mema around and hang out with Grandma while she's on her laptop Chz is eating crackers on her ipad.   I could NOT have made it this last year if it weren't for Larrys parents. They have been absolutely amazing to me and of course to Charli, and have helped me SO many times. I have a pretty bad shoulder and about a month ago I fell and messed up my ankle really bad and they stepped up and took my Chzy for me. I owe them everything. We are ALL doing this together. Chee had a party at daddys today with her cousins and Uncle Shawn and Aunt Carrie...who made her the most BEAUTIFUL Pocoyo's AMAZING. (I'll put pics up later) and tomorrow she'll come home for a Yo Gabba themed party, pizza and cupcakes with me, grandma and Poppa Loren, Uncle Chris and Sami and Nick. She has quite the social calendar. 

Despite all the craziness of surgeries, and injuries, and illness, and random other things going on... and of course reliving the trauma that was the few days of labor and birth.. I have not been so at peace with life, myself.. .everything. I've worked really hard the last 2 years to be a different person...for many reasons but mainly because I didn't like who I was and Charli deserved better than that. Everyday is an unknown, and although of course there are days where I wallow, and sometimes get mad at the world, I approach each day looking at it full of possibility for me and my Chz.  I strive to be the best person I can be for her, and to help her be the ABSOLUTE best she can be, and we all work together to get her the best care, education, therapy..whatever it is she needs, we all tackle it together. 

God, 5 years ago I was laying in a bed.. miserable and contracting... and I think about now was when they turned the pitocin off because she was deceling so bad. I didn't know but in a little over 15 hours my baby would be here, and our journey would begin. We got thru it then, and every hurdle since. I know my daughter will get thru anything and do great things in this world. She's proven it already time and time again.  There are days I long to go back to when she was a baby, and I could swaddle her and put her on my chest and sing the snuggle bunny song. Before seizures, before the hemi, before revisions, and hip dysplasia and an upcoming bi lateral hip surgery. In those 6 months after NICU and before 6 month vaccinations things were just total bliss (sleep deprived, but bliss none the less)  I miss the days where she would cuddle up and fall asleep on me. But I don't ever want to miss something she has to say. Her voice, and's everything to me. Actually her singing is everything to me...and when she tells me to stop singing lol. 

Charli Hayes you were such an incredibly beautiful baby. So perfect, and so well behaved. Now you are a beautiful little girl, still perfect, ... sometimes not so well behaved lol.... but it's all good.   We go with the flow, and sometimes it isn't easy, sometimes it's harder than hell, but it's always worth it to see that smile and hear "I love you". Together, we can do anything. I love you very much....its not even possible to put in to words how much.  Most would say to the moon and back, but my love for you far exceeds that. 

I love you my little cheeto chz. My mighty monk. <3 br="">

Saturday, May 26, 2012

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

Thursday, May 24, 2012

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.

Sunday, May 13, 2012

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.

Wednesday, February 29, 2012

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 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.