WE’RE BACK! We made it back to Our Children’s House at Baylor yesterday around 10:00 and when we got here were told we would be sharing a room with another patient. EEEEEK. I politely let them know that I didn’t think that would work and they assured us that we would have our own room by today, and thank goodness, they kept their word. So we are getting all settled into our new, private, comfy room.
Everyone is, understandably, shocked when they see Madie. She is a completely different little girl than she was when we left here in November. She has also gained 6 pounds and probably grown just as many inches. We have met with all of Madie’s therapists and she seems to really like all of them. Her OT and ST are new (to her) but her PT, Mary, is the same one we had when we were here the first time. All of Madie’s therapies since we left OCH in November have taken place in our living room with very little distractions so I was a little concerned about how she would do in room full of kids all doing their own therapies. Well, she LOVED it. It made me so happy that she didn’t have a complete melt down. I will do my best to get a list of goals that we are trying to achieve while we are here so that I can keep everyone better updated on her progress. So far it has been mostly evaluations so I don’t have too much to report.
Speaking of things to report, I know I am horrible and never filled everyone in on Madie’s EEG. I am not exaggerating when I say I have been busier than ever before. Here is an excerpt from an update I posted on September 9, 2010….
Then came the neurologist with the EEG results. The good news is that there are no seizures. Then they let us know that her brain activity is still slow and that she has most likely has lost some brain tissue. She said that Madie will probably always be at risks for seizures and will also be developmentally and cognitively delayed. There is no way to tell right now how minor or major these impairments may be, especially only 2 weeks after her accident. They mentioned that her brain really took a hit since it was without oxygen for an estimated 25 minutes. We, of course, knew that these terrible things were possibilities but to hear someone tell them to you so bluntly is hard to swallow. I asked the doctor what she thought Madie might be like compared to other kids her age, 5-6 years from now. This was such a strange question coming from me because I am so focused on the now but I kind of just blurted it out. The neurologist then said that there is no way of telling that and I just left it at that. Matt and I gave our same speech about how we are going to stay positive and focused on Madie’s healing and we have faith that she will still be one of those miracle kids you hear about all the time. Then about 30 minutes after she left I just broke down. I thought about Madie and that strawberry shortcake ball and everything else that she and our family has been robbed of in the midst of this accident. Then all of a sudden I realized I’m listening to what SCIENCE says. We have had numerous doctors tell us that brain is a crazy thing and there is NO WAY to predict what it will do. I reminded myself that God is in control and then I read Psalm 139:13-16. Everything that will happen in Madie’s life story was written before it takes place. It isn’t like the neurologist said this is as good as it will get for Madie. They are just telling us where we are now and I am pretty sure they will be shocked when we come back in a few years and they see Miracle Madie and how far she has come. It seems that most people I have talked to agree with me.
So, the EEG…it was completely normal, perfect and beautiful. Long story short, what that means is that Madie’s brain activity is normal and she is no longer at risk for seizures. After Dr Castro gave us the results, she then brought in the doctor who said that Madie would ALWAYS be at risk for seizures and would ALWAYS be on seizure medicine as long as she was alive. She told us she was so very happy that she was wrong. If only all of those doctors would have listened to Matt and I from the beginning when we said that we had faith that God was going to take care of Madie….
I have so much more that I want to talk about but I am so very sleepy and we have a busy morning. Maybe, just maybe, Madie will take a long afternoon nap so I can tell you all about Madie’s 2nd birthday party.
Please pray that Madie’s time spent here at OCH is productive and please also pray for all of the other children here.
With greatest gratitude,
Kristin, Matt, Molly Michael and Madie
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