Tuesday, July 15, 2014

Vacation and Back to Reality

Bex was given permission to make her first trip to the beach, so we spent the week after the 4th of the July in Emerald Isle, North Carolina. While Bex didn't really enjoy many typical beach activities, she did love stroller rides on the beach as well as naps by the pool. She also had quality time with her aunts and grandparents.

Loving walks on the beach!

After a vacation well spent, this week we have quickly gotten back to reality. She had her weekly check-up with the pediatrician. Her blood pressure continues to be within the average range. Despite her insatiable appetite, her weight has been holding steady and she is not showing any signs of infection. Her latest blood work results did show elevated glucose levels. This could just be a side effect of the steroids, but we are following up with neurology tomorrow for more clarification and will continue to monitor these levels closely. 

At one point, Chris and I were cautiously optimistic that the side effects might be diminishing with the decreased dosage of ACTH. However, over the last two weeks, her appetite has really increased again, she seems to be increasingly cranky, and she is not sleeping well. It was actually refreshing to have the pediatrician I saw yesterday (our normal doctor is out of town) ask me if I was keeping my sanity before I even provided an update on how Bex is doing. He acknowledged how difficult and exhausting the constant hunger, fussiness, and lack of sleep can be on the family while the baby is on ACTH. I feel like there are many times that Chris and I have looked at each other recently wondering "Is this normal?", "Do other babies act this way on ACTH?", or "What happened to our Bex?" The appointment yesterday left me feeling that our experience is "normal" and hopefully, in a few more weeks, we will have our Bex back again. It has also motivated us to find a way to be a resource for other parents that may walk down this path in the future.  There are so many times that I wish there was another mom that I could pick up the phone to call to be reassured that their baby also wanted to eat all the time, stopped liking activities that they enjoyed pre-ACTH, and that once their baby finished the ACTH the side effects started disappearing.  However, when only 1 in every 3,000 kids will be affected by IS, there isn't a huge support network of parents readily available.

Bex also started Physical Therapy this morning. Obviously, since her mood is not ideal these days and she is not overly interested in playing, it was hard to get her to engage in many activities. The therapist was very understanding. She provided us with some ideas of small things we can start integrating into her daily routines and ideas of activities to try when Bex is in a good mood and wants to play. Chris and I are excited to have some new things to work on with Bex. We plan to capitalize on those moments when she is in a good mood because we are maintaining the perspective that every little bit helps!  After all, Rome wasn't build in a day.

As of right now, her last ACTH injection is scheduled for August 4th. Between now and then, River and I will be taking lots of walks to the park with Bex, since her stroller always seems to make her happy. Chris and I have also agreed "lights out" by 8:30 most nights, so we can make sure to get as much sleep as possible!  We are basically in survival mode until the shots are done and life will start to normalize again...hopefully!

I know this is a long update, but this is what happens when you take a 2 week break from blogging.  

If you can't tell her foot is in there...that's about as far as she'd go!

Pool side naps with Aunt Calli

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