A new boy?

The endoscopic procedure to relieve the pressure on Jack’s brain took an hour. Just one hour to make a bur hole in the top of his head, put a camera in, and then make two holes in the base of the third ventricle that allows the fluid to leave his brain so his body can absorb it.

He woke up and what did he do? He PLAYED! My jaw literally dropped when I walked into the recovery room and saw that his head was visibly smaller than it was when we handed him over, hours earlier. He was reaching out with both arms! Before, he wasn’t using his left arm at all…. now he has been rolling both directions, lifting his head up, playing games, talking (babbling), singing… the list goes on. He has a spark again. I can’t tell you how proud of him I am. How grateful that God has kept him during these past few dark months.

I wish I could show you the picture of his brain the surgeon showed us last wednesday… All darkness – with his entire brain pressed the wall of his skull. It’s a miracle to me that he is still alive… no wonder he wasn’t learning anything new!

The big question for us all – Why did we wait then? 

The answer is because we take one step at a time. We won’t put a shunt in until we are positive he needs one – if the fluid builds up again then surely he needs it. My soul was able to be at ease when the doctor assured me that it was a GOOD thing that Jack was 15 months old vs 13 months or any smaller to do this type of procedure. For, the older he is the more likely the success. So that is my prayer for why it was delayed..  Why Jack got sick in October when we were supposed to get the scan and come to boston… I have to trust that God knew my baby… he is the only one that truly knows the ins and outs of this precious child I am privileged to watch over. And for that I am thankful. He gives grace for the moment… which is good… because I am only capable of living moment by moment anyway. How kind is God?

Our mystery boy continues: We were able to follow up with the opthamologist for Jack’s right eye that has been wandering like crazy since the skull surgery. We were sadly told that he has lost some vision in his right eye that is irreversible due to the damage done to the optic nerve. Neither glasses or a patch would help heal the damage. Also, we learned that because children with Apert syndrome have  shallower eye sockets, the muscles attaching the eye to the head insert differently than normal – of course 😉 and therefore he may need corrective surgery for the actual muscles later on in life. Since he now has vision loss, the muscles may grow weaker and therefore his wandering will continue. We will be following up with them again next month when we Lord willing, return to Boston for his rescheduled hand/foot surgery!

Meanwhile, we are laying low this weekend in our cozy hotel room where we are resting up from the long week we all just lived and basking in God’s goodness for this season. That Jesus would really take on the flesh we wear… so that he would put death in its place and these broken bodies we live in will not be forever. Amen.

baldspot drseuss firsthug IMG_1346 jackplay MRI


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