I envision our parallel bars getting a lot of usage this winter, from each of the kids.
Colder temperatures have bothered Anna ever since her system's upheaval in the spring. Her sensitivity is not quite as bad as it was in May, but the trips between the van and a building can be pretty uncomfortable for her on cold, windy days. We are working on different ways to keep her safe and comfy.
As the cold was really starting to set in last week, the kids and I took a trip to the Conservatory at Olbrich Gardens after school one day. I'm realizing more and more that not a lot of kid-friendly wheelchair accessible places exist around Madison, so we'll enjoy whatever we can find. If only we had learned about the wheelchair inclusive playground at a Madison elementary school before the weather got cold! Oh, well. The Conservatory has always been a cold weather favorite for our family and this winter will be no different
Now that our life is a bit more stable and consistent, Ethan and I are able to participate in a few different toddler oriented activities in the mornings, such as story time, playgroups, etc. He seems to enjoy being around other kids his age, or at least the toys in these different locations. Of course, by being around lots of other kids, he catches their colds. He's working on big cold #2 since October began; I think the poor boy had about a week without a runny nose. But, he hasn't had a fever and doesn't seem to feel too bad with his illnesses, so we will just keep plugging through them and consider them added immunities.
Last Thursday afternoon, Anna had a few follow-up appointments at the hospital. At the audiology appointment we learned that Anna's hearing is still well within the normal range. Hearing loss is one potential side effect of the radiation she experienced; problems can surface up to two years after treatment. Anyone who knew Anna prior to her treatment knows that her baseline hearing was pretty exceptional. We will never really know if her hearing is any worse now than it was before, but at least we know that it's still really good :)
At the endocrine appointment, we learned that we are approaching Anna's steroid taper in a very appropriate and common sense fashion. She typically feels extra tired and/or cruddy when we reduce her dosage so we cut back on her steroids on Saturdays to give her a few days to recover before Monday hits. Plus, we opted not to reduce her dosage on the Saturdays immediately after her chemo treatments or on Saturdays when she was in-patient for a fever; she already had enough reasons to feel cruddy those weekends. Because of these delays, Anna is still on steroids, albeit not nearly as much as she was in May. Assuming there are no bumps in the road, she may be off of this medication sometime in December (hooray!), but will still need stress dosing in the event of a serious illness or injury for several months while her adrenal glands heal completely.
Finally, Anna had her blood drawn again for labs. We have been told that the counts will dip and rise during the next few months. Everything is still looking good, even if some of the numbers weren't as high as earlier in the week.
The highlight for Miss Anna on Thursday afternoon, however, had to be our visit to P4. We decided that with all of the waiting we did on the second floor, we deserved to see our friends up on the fourth floor while we were at the hospital. Miss Anna's face lit up when she realized that her favorite nurse was working; I don't think I've ever seen her move that fast in her wheelchair as she raced down the hall to give him a hug. Many other familiar nurses were working that afternoon, including Anna's daytime primary nurse. All were very happy to see her, especially since it was simply for a social visit.
No nap on Thursday made for a tired girl on Friday morning. However, after a nap in the afternoon Anna was energized for one more physical therapy session before the weekend. Anna even does some standing exercises with Matt using the parallel bars, in addition to her physical therapy sessions at school and the schedules ones at home. Way to go, Anna!
Time for prayers
Thanksgiving
Please give thanks that Anna will have NO CHEMO this coming week! (This would have been the scheduled week.)
Please thank God for our warm home and the good food we were able to preserve from this summer. We count these blessings every day.
Please thank God for all of the people who continue to work with Anna and our family.
Requests
Please continue to pray that Anna's treatments were 100% effective.
Please continue to ask God to heal Anna's body and help her reach her fullest potential.
Please pray for peace and wisdom for Matt and I as we continue to make decisions about Anna's rehab and education.
Please continue to pray for all those working with Anna and our family.
One more thing ...
Matt informed me after Halloween that he had taken a few pictures of Kate that day, or at least when she had her make-up on, if not her costume. Matt did a great job creating her leopard face!
No comments:
Post a Comment