When you have no where
else to turn, there is always hope !
Well I'm going to try and keep you guys updated on how Madison is doing from time to time.Today my baby started preschool and I'm so excited for her and myself. This was a big step for me to take, I'm very over protected of her. I want her to be able to play with the other kids her age. She has always been scared of kids her own age but, since has learned to walk she doesn't mind it now.
Madison started walking 2 days before she turned and it's so amazing to see her. Since I was told she never would do that. I'm going to school with her thou and waiting in the hall way, I know I can't let go all the way yet. The only time when I have not had Madison, is when my oldest daughter or husband has had her. Baby steps I say, one day at time for me to trust other people with her. She is so excited to being going to school like her big brother and sister.
Madison loved her teacher today, she had so much fun with the other kids.
I'm so proud of her when they were doing class time she was the only one that knew her colors. Miss Becca said " I'm so amazed that she has just turned 2 and knows all of her colors, count to ten by herself ". I told her we have really worked alot with her so that she could live a normal life as possible for her. I have to say thou sometimes I find myself in awe of Madison on some of things that she does. For so long when she was born I was told that she would never do anything.
October 21st,2008
Well today Madison has surgery to remove 7 plates and 32 screws from her head, from when they did the Cranial reconstruction last November.Madison skin on her head is very thin. i noticed in the beginning of October that there seem to be something poking up at the skin trying to pop out. I wasn't sure what it was so I made an appointment with her plastic surgeon ans NS to find out why.
Dr. Havlik (PS) told us that it was a screw and that it needed to come out with a few others. We were told it would only take it about an hour or so for the surgery. Every time she has a surgery I think I will be ok because she has gone through them before. Boy am I wrong I still ball like a baby when I hand her over.
Well it took over 2 hours and I was a nervous wreck by the time they let me back in the recovery room. Madison did very well 2 hours later we were on are way home. First time for that ever, we always had to stay at least one night but she was doing so well they said we could take her home. I don't think I could leave fast enough, she hates that IV in her arm. I'm so amazed that 2 hours before that she was in surgery and now she wanted to run around, eat and was laughing. She truly is my hero.
October 24th,2008
Today feels like one of the worsts days of my life. I took Madison Madison's bandage off her head. I started to cry cause the one screw and plate that was the most dangerous was still there. How could this be I watched him mark that spot myself so that he wouldn't miss any. The nurse wanted to do and I said " no i want the doctor to it".
We had to pull her out of gymnastics and preschool cause of it. They said " If it pokes through her skin she could get an infection and make it worse". So we stayed at home with until the surgery so that nothing would happen. I called the Doctor crying and told him that he had left it in. I knew what he was going to tell me my baby would have to have another surgery again.
It sickend me to know that he didn't double check to make sure he had them all. she had 7 incisions on her head. Why wouldn't her double check to make sure he had them all. He said that he wouldn't be able to fit us in until November 6th. My baby still would not be able to go back to school and mommy had promised her, she could it broke my heart. We are going to South Carolina for Halloween to be with other Hydro friends and I'm scared to take but they said she would be fine.
October 31st,2008
Well it's Halloween and were in South Carolina with Christy and Charlie (www.littlecharlierocks.com ). I love that family so much, I never knew I could meet another family with Hydrocephalus and love them like I do. I meet Christy online when I was trying to find out all about Cranial reconstruction and what it was. She helped me a great deal with that time of my life. I don't think I have ever been so scared in my life to make that decision. She is one of my very best friends... I owe alot to her. Well Madison is going to be a little sheep with Riley and Molly is little Bo-peep.
Novemer 6th,2008
Well it's Halloween and were in South Carolina with Christy and Charlie (www.littlecharlierocks.com ). I love that family so much, I never knew I could meet another family with Hydrocephalus and love them like I do. I meet Christy online when I was trying to find out all about Cranial reconstruction and what it was. She helped me a great deal with that time of my life. I don't think I have ever been so scared in my life to make that decision. She is one of my very best friends... I owe alot to her. Well Madison is going to be a little sheep with Riley and Molly is little Bo-peep.
November 27th, 2008
Today I have alot to be thankful for... I have family and friends around me on this blessed day. I'm so glad for everyone in my life and I would truly be lost with out you guys. Madison has decided that she can help mommy cook today it's so cute. She is running around the house telling everyone she's cooking.
... Our Family...
December 23rd, 2008
Well it's 2:45 in the morning and I can't sleep like always, before one of Madison's surgeries. I just wanted to let everyone know that Madison is having eye surgery today.Her eyes have started to cross really bad and they think it is from when she was born. The doctor who put her programmable shunt in didn't turn it to drain fast enough. So for the the first two months of her life we thought she was blind.
Well come to find out when we got a second opinion, they was to much pressure from all the fluid. The next day Madison was a whole different child she could see and seem to want to do more. So the doctors say they have to a laser surgery to zap the muscles back into working again. It has been giving her some visual problems. It is going to be an out patient procedure they say. She still has to be put out but God will see her thru like he always does.
It never fails to amaze me about some people, they just assume because she has been through surgeries before that she will be fine. Do that not understand that my baby is going to be out once again. That she is going to be in pain once again...
I wish they knew what it is like for me to have to hand my precious baby over to these doctors and say here you go. It never gets easier and it never will. Please don't get me wrong I would never wish upon any person to have to go through that pain. I just wish they would understand, why I can't sleep and why I worry. I thank god everyday for my little miracle and would be lost with out her. It kills me to see my child have to go through this and I can't do any thing for her. I know she has to have these surgeries done for her own good. I just wish I could take all of her pain away.
