I can't believe it's been almost a year since my last post. Last time I wrote, we had just discovered that Liam's syrinx (the cyst in his spinal canal) was back. It is still there - surgery was planned for January 2017, but then he got sick with pneumonia and it was postponed. His doctor has since decided to take a more cautious approach, choosing to wait as long as we can before operating again. Auggie also has a retroflexed odontoid which complicates matters and could indicate that he needs fusion surgery - a different type and more complex surgery.
Right now we're buying time, time to rule out other conditions that could make his condition worse, time to let his bones grow and his neck become stronger. In order to try to get a complete picture we have added several more specialists to his list of doctors - new last week was urology and neurology, new last month was pulmonology. We've seen 4 different geneticists in the Bay Area hoping to figure out if he has any other chromosomal abnormalities. Since he has Noonan Syndrome he most likely has some type of connective tissue disorder which could be why he has a slumping brain to begin with.There are still so many questions and so much research to be done in this area - another reason why holding off on surgery might not be a bad idea.
In the next couple of months Auggie will have a sleep study to rule out central sleep apnea - the presence of CSA would indicate surgery sooner rather than later. Also, if hes shows signs of further neurological impairments he would need surgery sooner.
In the meantime, Liam continues to live and love life just like any other 7 year old. He is finishing Kindergarten next month, has lost 7 teeth, loves books by Mo Willems, Teen Titans, soft sand beaches and peaches!!
He had his first unsedated MRI last month and he was a champ! He did so well - last time we tried it he was kicking and screaming and in panic mode.
We have learned to make accommodations for him; limiting his physical exertion, no rough play, no trampolines, no bouncy houses etc. Some days plans change at the last minute when he gets debilitating migraines. He still drinks from a straw and drinks a special non-dairy formula to supplement his calorie intake.
He is our little fighter and has a wicked sense of humor. Oh, and he loves rock n roll!!
