I am so sorry I have not updated Zane’s webpage in a very long time! It is partially due to the fact our computer had a nasty virus… My Dad helped me get rid of that (Thank you!) then I had issues with my battery cord not working! I finally just bought a new computer. Fresh Start!
So, Zane has been doing absolutely amazing! Thank you to everyone who continues to pray for our little guy, it is working!
Let’s see… So we went to Florida… came home…
then Zane had a BIG surgery… ready for this one? Uvulopalatopharyngealplasty!! hahaha… (not laughing at the procedure, but that extremely long medical term that had all his doctors and nurses tongue tied during rounds!) Plus Adenoidectomy, Tonsilectomy and Uvuloectomy. What does all this medical jargon mean? Okay. Means some horrible torture for our poor boo boo (and his momma) This was thee hardest surgery to watch him go through. It may be a toss up between neuroblastoma resection and this one. During the removal of his neuroblastoma I atleast knew he wasn’t in pain as they kept him asleep, and on heavy pain meds… he was also younger. This one he came back from the OR awake, not intubated (because this was a surgery in his throat and we could not intubate in order for his throat to heal)… he had a “trumpet” shoved in his nose that went to the very top of his throat to allow him more air through his nose while he recovered. He absolutely was not happy about that! Sooo… Uvulopalatopharyngealplasty means they reconstructed his uvula, partial palate and throat (UPPP) which is a rare surgery. It is basically a face lift in the back of his throat. They also removed his adenoids, tonsils and uvula (dangling thing in the back of your mouth). I spent many worried nights watching him recover hoping this surgery would be worthwhile. This was extremely painful for little man. And in November he went back for a sleep study which showed that 98% of the night he held his oxygen completely on his own! UNBELIEVABLE! This boy could not even get through his first sleep study without oxygen because the doctor was worried as he kept dropping below 60% saturation levels… I think over 78% of his night… something like that. He would even stop breathing for over 20 seconds at a time. It was scarey as a parent watching him sleep like this. They sent oxygen to the house back in the day and we lugged the tanks everywhere we went, he had to have it on every time he fell asleep… this oxygen concentrator in my bedroom was as load as a generator. The first night we brought the machine home… between the loud oxygen concentrator and his new pulse oximeter going “beep beep beeP” I tried hard to fall asleep… eventually kicked my feet on my bed like a two year old and yelled “how can anyone sleep like this!!!” lol and then laughed at myself for doing that and went to sleep. haahaha… Well our baby is now oxygen free! No Tanks! No Concentrator! and believe it or not… in February… we also got the okay for No Pulse Oximeter! I thought we would never see the day…. I would never feel comfortable not knowing what his heart and oxygen was doing. I tell you I sleep well every night and so does Zane. Not even worried! He looks great! Kick Laryngomalacia’s butt- check. Kick tracheomalacia’s butt- check. Kick Sleep Apnea’s butt-check!
He also had a heart echo that showed his outflow tract obstruction is completely resolved! His has less than 17% thickening in his Left Ventricle (The Pumping Chamber) coming from 60-70% thickening originally. He is still taking heart medication, but they did not even need to see him back for a whole entire year! (so we haven’t seen them since August!) Kick hypertrophic cardiomyopathy’s butt- check
His biggest development has been in the form of therapy. We started occupational therapy through Vision Forward at the end of June 13′. He was rolling by September and now is a pro at it! We started Vision Therapy at the same time as OT. She brings fun things over to challenge his vision. His favorite toys are now shiny pie plates! lol. We added Physical and Speech Therapy after his surgery. He now rolls anywhere he wants… he can SIT! Not super well yet but you can sit him on his own as long as you stay there to catch him as he wobbles now and then to one side or the other. He can sit in a wagon! He can also stand if you hold his body but he will bear weight on his feet. He loves when i dance with him! He laughs… omg does this kid laugh often! He smiles all the time! He has a favorite Mickey Mouse doll that never ever gets old.
It is getting late so Im going to end this post with the intention of posting more often now that I have a computer! Note to self: You MUST tell everyone about IGG Therapy and Opsoclonus!
Here’s a photo of Zane: