Well, we're almost done with what is usually a difficult week and, so far, it hasn't been as bad as it normally is. The steroid meltdowns have been minimal and we haven't seen too much muscle weakness.
He has had a tummy ache off and on, but nothing that hasn't been helped by some Benadryl and rest. He's been a little tired at school and hasn't always gone to gym class, but he has been able to stay awake. On Thursday night, the bone pain was pretty intense. He had a lot of jaw pain and said he hurt all over. For the hour before he fell asleep, he cried from the pain. Since he didn't have a fever, I gave him some Tylenol and he finally fell asleep. On Friday morning, he was still moving slowly and said he didn't feel well. Luckily, my mom has been able to have most Fridays off for the last year, so she's able to help us out more when he's sick. He spent the day hanging out on her sofa and watching movies.
For about the last 6 weeks, he's had a nasty cough which is worse in the mornings and at night. I check his oxygen level often and have increased his asthma meds but it just won't go away. His O2 is usually good, but it has gotten a little bit low a couple of times this week. Yesterday (Saturday), he and Katherine we playing and running around the basement. He was coughing almost non-stop and was breathing really hard. I checked his O2 and it never read higher than 94%. I gave him is inhaler and made him rest for a little while. The steroids should be helping him and he takes an antibiotic every weekend, so I don't think he's at too much risk for lung issues, but I'm keeping an eye on it.
We had several fun things this week including riding the Party Bus and looking at Christmas lights, having cookies with the Man/Woman of the Year candidates, and going to a Christmas party with our Bible Study friends. We're so thankful that he was able to enjoy all of the fun things even after having the strong treatments this week.
Sunday, December 11, 2011
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