Ava's brain surgery, and other stuff

Well the doctors office has scheduled Ava's brain surgery for her Cranio, it is going to be December 9th. We will be in Boise Idaho for a week. Well when I say we, I mean Ava and I, the rest of the family will be staying here in NM to go to school, and work. It's going to be hard to be so far away from everyone when we are there. It was hard before when we were only a few hours away.
Ava has had brain surgery twice already. One was to place a VP shunt for her hydrocephalus, and the other is what alot of people call a CVR(cranial vault reconstruction) and a decompression of a Chairi Malformation type 1(she has a zipper scare at the base of her neck). She will be doing another CVR.
They will make a cut from ear to ear across the front of her forhead(where the hairline is)and pull it back, and then cut the skull and remove it, and shape it, and then replace it. I hope that it works like it did last time. The last time it was done on the back portion of her skull, and it did amazing things for her. She looks so much better already.
I wasn't really thinking they would for sure need to do another surgery for her head, but after our last visit with the doctors they called and stated that if it wasn't done within the next few months, then the surgery they did last time would be all for nothing, because they left the back portion of her skull open, and if we left the front closed then her brain would start to grow in the the area where the skull is open in the back, and cause another deformity in the back again. We sure don't want that!
I'm glad that we have found some great doctors, to bad they are states away. We have one Neurosurgeon here in NM and he is not a pediatric NS. We saw that doctor here, hoping that he would be able to manage the care of Ava. Well it turns out he wasn't what I thought he should be. He in my book, would let his mouth override his brain. He was cocky, and seemed to have a God complex. What I mean by that is that he told us that Ava didn't need any more surgery, and that what she looks like now is the best I could exspect her to look like. This was all without tests to confirm anything of what was going on, and without looking at what had been done, and what was still in need of addressing. He didn't even bother to look at previous scans that I had brought to his office for him to veiw.
I feel bad that other people go see this doctor for there children, as it seems alot of people in NM have no other choice of doctors, if they get medical assistants from the state. I guess they don't know any better, but coming from where we did, and having the doctors we did, we were acustomed to alot better treatment, and more thorow doctors.
I am hoping that Ava's surgery goes well, we will have to have her on IV Vancomiacin again, as she was colinized with MRSA at birth in her nose. She hasn't had any infections from the MRSA, but there is always that chance, so vanco here she comes.
Ava and I both were colinzed with MRSA, although mine was actually in my blood stream. I almost died after giving birth to Ava and Ella. I was blessed as is Ava. I know we are both fighters, and I pray that she will continue to fight and beat this disease, as I am doing.
I always find myself asking why does it have to be that Graves disease doesn't affect the adults in the manner that it has the children? This disease is so much more life altering for the babies that are born with it than the adults. I know the answer to this question, but really why should they be the ones suffering the most? The complications from Neonatal Graves disease is so much worse for the babies than what Graves disease is for adults.
People think that this disease isn't really all that bad to pass on to there child, and although it may not be, there is no indication on what it has done to them until they are here. Each child I have has been affected by this disease in so many different ways, and there is no one thing that the doctors could have done that would of caused it to be different for any of them. It makes you wonder why if they were all treated the right way, why then are they all affected in different ways. That is what one doctor said to me(a Genetics doc). No one knows this answer, but I sure wish they would find out.
There is hardly any research into this type of thing, and I wish there was someone that would do some so that we would know why our Ava, Ella, and Faith all have had a different outcome. I have done searches on Neonatal Graves disease, to find that there isn't a doctor around that is doing research into this at all. They are researching all types of Graves issues, but none for Neonatal Graves. Like they think they have all the answers, but they don't! Not one doctor can tell you why my daughter has developed hydro or Cranio, but they know it is linked to Neonatal Graves. This disease leaves me with so many unanswered questions. I am always going to wonder why no one wants to know. Maybe it's because it's not there child, maybe it is because this doesn't affect enough children. Maybe it is because it is so unpradictable. Who knows. Guess I'll never know.
Thanks for the prayers, were still using them....hehe.
Valarie