Friday, June 21, 2013

Roller Coaster of Emotions

After crying all week and being sick as can be...I decided to start researching...I was determined to find a Doctor who could still do the endoscope procedure...the thought of my baby's head being cut open from ear to ear and her skull being taken out and reconstructed terrified me to say the least. 

What is Craniosynostosis???

It's the premature closing (or fusing) of one or more of the boney gaps in an infant's skull. These gaps are known as sutures. The sutures are supposed to remain open until 2 years of age to allow for 
proper brain growth. 



The different types


These sites will help explain it more





I came across several great sites...some that offered alot of information, support sites, sites that offered care packages, forums where I talked to other parents going through the same thing or that had in the past. I couldn't believe it...this long "C" word that Alice was diagnosed with has been around for a very long time, yet I had never heard of it?!?! Many sites were trying to raise awareness to help other parents detect this birth defect in their children. I hope this blog of our journey helps others that are going through this and helps raise awareness as well. 

These sites are very helpful for families going through this journey. Cranio Care Bears actually sends out care packages to families. Please, if you want to do something for these sweet babies going through this, donate to any of these sites to help assist families and also consider donating blood to help children that need transfusions during these surgeries. 




In the forums I came across so many friendly moms that were willing to help me, it was so refreshing and really felt good to know that I had a support system of people that had gone through this. I was told about several doctors in the U.S that offered the less invasive surgery or endoscope surgery past 3 months of age. I reached out to Dr Mark Proctor in Boston, MA and Dr Jiminez in San Antonio, TX. I also reached out to UVA for a second opinion, although they didn't offer the endoscope procedure past 3 months of age. Monday morning I heard from UVA first, scheduled an appt with them, shortly after that Dr Proctor personally emailed me himself and thought Alice would be a good candidate for the surgery based on the photos I sent him. I heard from the practice in TX a couple days later. The entire week of June 24-28 was a roller coaster of emotions. I had read so many conflicting reports about which surgery would help Alice the most....Jason and I went back and forth, trying to make a decision and we finally decided to go with Dr Proctor at Boston Children's Hospital...but it wasn't that simple...now we had to get the approval from the insurance company and convince them that Dr Proctor was the best fit to help our daughter. The last couple days I have been working with the case worker from out pediatrician's office to gather a file to present to them...we had a doctor's note from MCV we hoped would help along with all office notes, etc. The file is ready to go and will be faxed first thing Monday morning (7/1/13)...we hope to have a decision by Monday evening, as this is a rushed case with not much of a window for opportunity. The endoscope procedure needs to be done asap or we will no longer have that option and she will be scheduled for the CVR surgery, the much larger, longer and more invasive surgery all around.

As some of your know my family has been through some very scary things recently and many trials and hard times for almost 2 years now. My sister was in a very bad accident last weekend, the car rolled over and by the grace of God she made it through and is ok. My mom was ventilated and sedated back in December for what was believed to be caused by an allergic reaction to newly developed allergies. It was a very scary week, but thanks to God and 'our angels' for watching over her. She also had another scare on June 11th (the same day as Alice's first neuro appt) and had to use her epi pens and was in the hospital... luckily this time it wasn't as severe. I hope 'our angels' are watching over Miss Alice Mary like they so amazingly watched over my sister and mom. Our Angels are my Mema and Grandaddy, who we lost 10 months apart just recently...

Please keep Alice and our family in your prayers as we anxiously await this decision. If we get good news...we could be on our way to Boston Children's Hospital as early as next week...if not we could try to appeal it but may run out of time for getting this procedure done and will have to schedule the larger surgery...