Thursday, May 26, 2011

your heart can break the same way 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 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 expect a blog :) In the meantime, love hard, laugh often, hug your kiddos.. say prayers for those in need.

Love to you all.