Double Fun

We finally got the results of Spencer's last sleep study. His apnea has gotten worst, doubled in worse-ness actually, but he is still in the mild range. His oxygen saturation levels are better, and that is what kept him off 02 again at night...for now. The doc wants to do another echo to make sure his heart isn't having any hypertension problems. If he does, then it's either back on oxygen at night or CPAP. We've been warned that CPAP will mess up with his already messed up jaw, so O2 is the only logical option. Big question...how do you keep a kid with aversions to having anything on his face on oxygen at night? I was pretty devastated by the news; I though we were done with him being on supplemental oxygen for forever. I had planned on coming home and celebrating.
His feeding is coming along pretty well. He flips out over anything on a spoon, but will eat pretty much anything sugar-filled that we put in his mouth. He loves Swedish Fish and cereal puffs. Tonight he ate a whole serving of tomato puffs, which taste like ketchup. What kid can resist ketchup?
It's becoming quite apparent that Spencer's sensory issues are pretty severe. He has some type of sensory intergration disorder. I'm overtly paranoid about all this turning into autism. Anyhow, we're going to start brushing therapy with compressions next week to hopefully help him with some of his tactile issues.
I also bought little man his first pair of tights. We are turning them into shorts to wear under his cloths to help provide support at his waist. If it works, we'll probably end up ordering him a spio-type suit. Have I mentioned how much I love his new occupational therapist? I actually like all his new therapists...but she goes above and beyond. When we went to the center's Halloween party, she climbed in a jump house with him and he had a blast. She gives him hugs and kisses and says he's her new favorite and she is going to take him home with her. Her little sister has CP, so I think she really gets it on another level.

Quick Post-Op update

Spencer's surgery went well. He looks and is acting awesome for a kid who had part of his face cut off. We are calling it his old man surgery. He was compared to Benjamin Button since he has hearing aids, had an eye lid lift, and is getting a walker soon.

We figured he would be confused and screaming his head off after surgery. He was very mellow and seemed happy to see us. Before surgery, it was the first time I was there when they put him to sleep. It seems like every other time that they put him under he got the one OR room that they don't have an anthesia area separate from the OR. He's considered an anthesia risk, so they didn't feel comfortable putting him under in the hall so we could be with him. Anyhow, it broke my heart. He just stared at me and looked so confused. Of course, I lost it. I tried to keep it all in, but it about killed me. I couldn't tell him I loved him without losing it, so I waited until he was asleep. Thinking about it now, I should have signed it to him.

It took forever to get us back to recovery. He was still snoozin when we got back there. After he woke up, he didn't really cry or anything. He was up and looking around in no time. His face was pretty swollen, but I believe he was able to see better already.

Good news, little man doesn't need glasses! His vision is in the normal range for his age. It doesn't mean he won't need them in the future, but we are safe...for now.