It's November and once again I realize how behind I am in writing on my blog; I have a new family picture I need to add. I REALLY need to update the grandkids' birthday tickers. But what I'm actually doing is sitting up at nights to make sure Alex wears his oxygen! Stinker!! I shouldn't complain, in fact I should congratulate all of us! He's wearing it up to 85% of the day. But for some reason at night is a fight. He fell asleep on the couch the other day, so I laid on the other side bound and determined to keep the oxygen on him through the night. Yeah... Neither one of us got any sleep. And Mike didn't either because I made him lock the cat in with him so he wouldn't bug Alex and me. Instead he bugged Mike!
Alex caught a cold and has missed almost a whole week of school. It's not a horrific cold, but with his low sats to begin with it just adds to the complications. I was going to send him today since he played well yesterday afternoon, but when I woke him up his sugars were at 38...that's not good!! So he's home again, today.
Since he's been home, he's got me hooked on Dr. Who. It's a good, clean show! And I must admit, I'd go with The Doctor if he showed up in my neighborhood in his TARDIS. And I'm only a couple seasons into it!
Did I mention in my last post why Alex is on oxygen? Or at least the guess? For the past 6 months or so whenever we went to any doctor his oxygen levels were at 88 or below; if levels are below 90 the doctors get worried. Well, this became a problem that no one could seem to figure out. After seeing the cardiologist, the pulmonologist and the pediatrician multiple times, getting x-rays and sleep studies, the decision was that for some reason he needs oxygen. The guess is it's because he's gained so much weight lately that the lower lobes of his lungs aren't inflating enough. (Some of the meds he's on for behavior cause weight gain, plus he's at the age of maturity, which hits kiddos with DS hard in the weight gain department.) Since wearing the oxygen, we have all seen an increase in his activity level. He's participating much more in gym and wrestling classes. He will go for walks with me. He will ride his bike around the neighborhood again. So, hopefully with more exercise we will see more movement and maybe some weight loss. Then we will know if the weight gain is the reason. The only problem is Alex is quite the sloth. Even though he's moving more, he is SO slow there's no way he's burning calories! So - that's it in a nutshell.
So that's about it. Chillin with Al watching Dr. Who and trying to get some sleep while making sure he has oxygen on. It's a glamorous life and I wouldn't trade it for nothin!!
A note to my nephew: one cancer survivor to another
2 months ago