December 8
Ally and Benjamin are doing very well. We had a wonderful Thanksgiving last week, and I got up all the Christmas decorations, including the tree. Both kids have been doing very well with it. Actually, Allyson is the one who touches it the most. She has her own ornaments on the tree, so she loves to look for them and take them off from time to time. Sometimes I find her carrying one around or sitting with one in her hand. - I have yet to set up our manger scene. I think I’m going to have to put it on the fireplace mantel so baby Jesus does make his way into the baby crib of Allyson’s dollhouse.
This past weekend we went to two Christmas parties on Sunday. We didn’t know how long we’d last because Ally Pally was a bit tired. Friends of Kids with Cancer held their annual holiday party at St. John’s. We went, but lasted maybe ten minutes. It was soooo crowded and loud, Allyson couldn’t handle it. (You know, when you tell people who have kids with Down syndrome that, they don’t blink an eye because they understand. Many kids with DS tend to have sensory issues, especially with sound and noise; the problem is real and not something we can make her “get over”. We are hoping that in time, she’ll learn to cope with the noise. Until then, she does what she can.) Ally and Ben got to see a reindeer. Benjamin actually went into the party for a little bit. (We, Ben and I, basically crammed our way in the door and walked around a bit.) For one brief moment, he got to sit on Santa’s lap. He wasn’t too sure about it, but he did it. He was all about talking to Mrs. Claus though ;-). — So, that party wasn’t a success, so we were off to the Down Syndrome Association bowling/holiday party. Ally didn’t last long there either. She really didn’t want to bowl…she was tired. Benjamin was happy to sit and eat snacks.
We found out Ally has to have another spinal tap and big dose of chemo next week on Friday. This is the one where she’s admitted to the hospital…we thought she’d have that treatment every three months, but she has to go in and have it done every two months. She also has to begin a week of Dex ( yes, the lovely steroid from hell that make her hungry constantly and quite a bit moody) the day before the big treatment.
Trying to plan a trip to New Orleans around Ally’s chemo schedule was a bit challenging, but we did it. We’ll be down less than a week, but that is the best we could do. Thankfully, Dr. Rob was able to adjust when she begins the steroid just a bit so she won’t be on it while we’re driving to New Orleans. I can’t imagine being in a van for ten hours with a constantly hungry and more than slightly crabby Allyson. (God only knows how Benjamin is going to travel for that long. He tends to get C-R-A-N-K-Y when he’s tired and when he gets too frustrated.)
Ally’s b-day party is this Saturday. I can’t believe she’s going to be FIVE!!