I have been asked for a current update of where we are in Jacks care, so I will pause from the chronological events of Jacks life from the last post and tell you where we are now.
Last week we met with the fourth and final (we have to stop somewhere) surgeon group. This group was in Chicago. After a three hour appointment the Surgeon assured us that he is not worried about Jacks brain at all for right now! Praise God! He said that with the two soft spots and confirmed with the CT scan, we can push Jacks skull surgery back until he is about 1 year old. This is huge because it means less surgeries for Jack this first year.
We also discussed the other two contenders with him and he recommended that we start surgeries with the Drs in Dallas. The reasons were many:
1. Dr Fearon (Dallas) is an expert with the cranial vaults (suture release of the skull) that Jack needs
2. He also does the hand and feet surgeon. Every other orthropedic/hand surgeon that we talked to wont touch the feet. Doc says that he does the feet since so many of the kids ask for it later in life and then it is much harder due to the complexity of the surgery
3. He was the only Doc that stressed the importance of overall development for Jack. He seemed to be an advocate for kids with Apert syndrome, where others seemed informed but less like they would fight for my son.
4. Without asking, he answered questions that when I asked other surgeons, the questions fell on deaf ears. He seemed to understand how to care for Apert, which is so what I need!
So… I could keep going but there are some of the top reasons.
And here is Jacks rough NEW timeline for surgery:
9 months old (May 2014): 1st hand surgery
12 months (Auguest 2014): 2nd hand surgery
15 months (Nov-Dec 2014): 1st skull surgery
Click here to go to Dr Fearon’s website, where he goes system by system of how Apert affects our kids. It was very informative (though the website looks ancient… apparently the surgeon is a surgeon and not a website developer..hehe)