I made this page for my beautiful daughter who has craniosynostosis. Now although we havent had a true diagnosis i am working hard to try and get one. So we are here so all our family and friends can experience this crazy journey with us. And i would like to say from me and both we love you all for joining us.
Well it all started on August 18 2009 when miss Peyton Olivia entered this world at 6:57 pm at a healthy 8lbs 5oz via emergency c-section. She was perfect. After she was born the doctors told me that she had a smaller than normal soft spot but not to worry about it, only a small number of children have something wrong with them. So i didnt really worry about it then i believed the doctors, they know best right? Well before her 2 month well baby check I was feelling her head for some reason, and i felt a very hard ridge on the top of her head from where her soft spot is supposed to be to the back of her head. I typed that into the computer and came across craniosynostosis, and after reading the info and seeing some pictures i just knew thats what she had. Craniosynostosis is the premature closure of the fiborus joints in the skull and surgery is the only fix. Well i broght it up at her check and the dr felt it and said he wanted to send us for a st scan. Well we had the scan on Oct 23, that day was really hard i couldnt feed her before the scan so that she could eat just before it and sleep during and that went well. So they told us that the results would be in within a week to a week in a half, i waited the week and a half before i started calling for answers, and they told me i had to wait for a neurosuregon to call (he was on vacation) and to give it another week, so i did and that came and went, so i called the peds office again. I finally got a call from the neuro and got an appt for Nov 19. I still didnt know what the scan said at this time. So Nov 17 came and i got a call from the neuro offiice saying that the dr was sick and couldnt see us and that i had to now wait another 4 weeks for an appt on Dec 10. I was getting pretty angry at this time because i still had no idea what was on the scan report. So again i called and called and called the peds office trying to find out what her scan said. Until finally i went down to the office and sat there until they would answer my questions. I finally got somewhere and they told me that it looked like craniosynostosis, i already had that feeling but i needed to hear it from a professional aspect, so i have been dealing with it. Well Dec 9 came and i got another phone call from the neuro office and they cancelled my appt yet again. I am FURIOUS to say the least. Here it is monday the 14 and they have yet to call me and reschedule another appt. I have been waiting almost 2 months to find out what is really going on with my baby girl and theses drs are not handling it the proper way. I have a eye dr appt set up for her now so that they can check the pressure in her brain as this condition can cause intercranial pressure. But the main reason i am doing this appt is so that i can get a referral to a different dr. He is 3-4 hrs away but i am willing to travel to texas if i have to for my baby girl. so we will see what they have to see on wednesday.
Wow!!! I can not believe how fast the time is going. In just one short week my beautiful will be in the hospital not know what is going on or where she is, awaiting to go through what I hope to be the worst thing she will ever have to endure. I hope I can find enough things to do while I await for her to be in my arms again, I will have great family and friends to support me. I cant tell you how nervous and anxious i am about this whole thing and really just want to run the other way and not look back and not have to put her through this, i know its the best for her but VERY scary. We are a couple stong girls and i love her more than words or expressions could tell. I cant wait to be on the other side of Cranio.