Wednesday, September 3, 2014

"Due to Bex's History...."

We have had a temporary hiatus from blogging, since we have fortunately had a temporary hiatus from doctor's appointments. This morning we had a check-up with the pediatrician. As you remember from Bexley's 9-month check-up, she did not grow in length between 6 and 9 months of age. No one was quite able to answer if this was a side effect of ACTH or there was another underlying issue. Today's appointment was primarily for a height check, but Chris and I had a few other issues that we discussed with him. Below is a summary of the appointment:

Height: Chris and I were relieved to hear that Bex has grown an inch in the last month. I honestly would have been happy with a 1/4 of an inch of growth because that would have meant she was starting to grow again and her growth hadn't stopped.  I think we both feared what sort of worst case scenarios would have to be discussed if she went another month without growing; therefore, we were over-the-moon excited to hear she gained a full inch. We actually cheered when the nurses read off her measurements. I think they might have looked at us like we were crazy that we were so excited to hear she was measuring in at 28 inches, but we have learned to truly celebrate the smallest victories.

Breathing: Bex started breathing heavier when she was on ACTH. We were told that was a side effect of the medicine and that we should only be concerned if she did it in her sleep, which she doesn't. When I mentioned this again to the neurologist last month, he basically wanted to make sure she never turns blue around the mouth and brushed it off as lasting effects of ACTH or weak breathing muscles. Anyways, a month later, she still has the tendency to breath heavy. Bex's physical therapist has even asked me if it is normal for her to breathe heavy, so I knew this was not something that I was just imagining and we wanted to see what the pediatrician had to say. He said her lungs were crystal clear, there was no blockage in her nasal passages, and no heart murmur. Based on his assessment, this is nothing that requires further testing at this point. He also didn't really have any answers, so the good news is there are no red flags right now and hopefully, it is still the ACTH working its way out of her system. 

Spine Alignment: The neurologist had pointed out that Bex's spine appeared to have a slight curve, which was impacting the alignment of her body.  He didn't order any tests at the time, but said we should continue to monitor it. Of course, that planted a seed in our heads, so we asked the pediatrician if he had every noticed it before. He said he had not, but did a physical exam today to look at her spine.  When she turned her head to the left or straight, he said he could see a slight curve and due to Bex's history recommended a referral to a pediatric orthopedic doctor. That appointment will most likely involve spine x-rays to get a baseline of her spine development and then from there we will just wait and see if or how this might impact her development.

All in all, it was a good appointment.  We really weren't surprised that he made the referral for us to see an orthopedic doctor, since we both realize that anything that veers slightly off the course of normal development will result in additional follow-up and monitoring.  We both laughed that "due to Bex's history" and "wait and see how she develops" are becoming common themes in all doctor's appointments. We are also learning to accept that most appointments will leave us with more questions than answers. There are days it is hard living with so much unknown about her future, but we remind ourselves on a regular basis to not let that worry stop us from enjoying moments like this with her!

"Yes pool boy, one more circle around should do it."
Bex Sandwich!

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