Busy, Busy Bexley

Bex has had a busy two weeks. I actually said to Chris today as we walked into the pediatrician’s office that I am a little burnt out of doctor’s appointments, ha. Hopefully, once we hit mid-August, our doctor’s visits won’t be quite as frequent.  Here’s an update on what is going on with Bexley:

 

Pediatrician: All has been going well with those appointments with the exception of one minor hiccup last week. I tend to worry about everything under the sun when we go to those appointments: blood pressure too high, high glucose level, gastrointestinal bleeding, too much weight gain, infections, etc. The good news is that all those things have looked great!! Last week, they combined her 9-month check-up with our weekly visits. When they measured her length (height), she had not grown at all. She was 27 inches at 6 months and 27 inches at 9 months. While with many kids, parents might be told “maybe we measured wrong (that actually happened to us at her 2 month check-up) or everything else is going okay, so we’ll only worry if there is still no growth at 12 months.” However, with Bex everything is a red flag or a cause for follow-up, so the pediatrician had to consult with neurology and genetics.  Neurology and genetics had no real answers at this point. It could be that the ACTH did possibly impact her growth or there could be something else going on.  We will have to take her in for a “height check” at that end of August to see if she is started growing again once she is done with the ACTH. While Chris and I were pretty frustrated last week that we have one other thing to worry about, we have decided this week to not borrow trouble at this point and not waste time worrying about this until we have more information. 

Physical Therapy: Our therapist is great! While Bex was not the most willing participant this week, the physical therapist reminded me that it is actually a good thing. It means that Bex has an opinion about what she likes and dislikes, which is very age appropriate! As Chris and I had been suspecting for awhile, Bex has slight torticollis, which is a tightening of the muscles on the right side of her neck that cause her to hugely favor looking to the left. This has actually nothing to do with her IS. It is either the result of her positioning in the womb or could have happened during delivery. The therapist has been giving us lots of ideas for helping her to actively stretch those muscles. I have found it so helpful to have someone coming in every week giving me guidance and support about what I need to be doing to help Bex work on improving her gross motor skills.  

EEG Follow-up: The neurologist recommended a follow-up EEG before our appointment on August 12^th.  We had the same tech perform the EEG this time and she was wonderful.  While we have not officially received the results from the neurology, the tech’s opinion was that her EEG looked good and she was not seeing any signs of hypsarrhythmia.  Hopefully, the neurologist will have the same report in two weeks.  

As of Tuesday, we continued giving Bex the lowest dosage of ACTH, but we started every other day shots. This morning was the first morning in 7 weeks that we did not have to give her an injection, which actually felt kind of weird, since it has become such a part of our morning routine.  Bex has 3 shots left to go and will finish up her last one on Monday.  Her poor little thighs look like pin cushions, but she continues to be such a little trooper.  She is still not 100% herself, but about a week ago, her personality slowly started coming back. Chris and I are so thankful that her smiles and giggles are becoming more frequent because they are the absolute best medicine!!