Medical Updates

It's been awhile since we've provided a comprehensive medical update about Anna.  I've purposefully put off summarizing all of the various appointments in the last few months so I could gather everything and share it all at once.  Here it goes!

Eyes - Anna had a check-up with the ophthalmologist in June.  He was able to check her vision more accurately this time and she has a new prescription for her left eye.  However, less than a year had passed since she got the new set of glasses, so we have to jump through some insurance hoops to get her the newest lenses.  She should have the new pair (which look exactly the same) by the time school starts in September.  Anna's double vision is still present, but we are pretty much out of options now for correcting that issue.

Teeth - Anna had four teeth pulled in May and the matching four on the other side of her mouth pulled in late June.  She was a trooper and hardly complained about it at all.  Of course, the shells remaining were pretty small, so there wasn't much pain.

Thyroid - Anna's thyroid levels were checked in February.  They are stable, but will need to be checked every 6 months.  Her daily thyroid medication has remained stable for a few years.

Growth - Anna had an endocrinologist appointment in mid-June.  Her growth is much more typical of another girl her age, but her height percentile is still less than 10%.  Her growth hormone therapy dosage was increased to adjust for her weight gain.  (It's still tricky to respond when people comment about Anna's growth now.  Now that she has grown, people notice.  But what are we supposed to say?  Usually, not much.)

AFOs - Anna's braces were adjusted back in May to account for her growth.  This pair will probably last her another 6 months or so, at which point she'll be casted and fitted for a new set.

Hip/spine x-ray - Anna requires a couple of x-rays of her hips and spine prior to her intensive therapy program in the summer.  They want to make sure they don't do anything that might cause more harm to a kid than good.  The last two summers, these x-rays have been positive for osteopenia (precursor to osteoporosis).  The osteopenia was caused by radiation, chemotherapy, and a few of the medications Anna was on in 2014.

The good news this time around was that there was no evidence of osteopenia!  Hooray!  The bad news this time was that they have detected enough of a curve in Anna's spine that she was referred to a pediatric orthopedic specialist for scoliosis.  There's always something ...

Neuropsych evaluation results - For my own records, this was the year that required mucho communication about the "official" results.  For everyone else's information, the results were pretty much consistent with those of 3 years ago, with some additional concern about Anna's executive functioning skills.  Again this time around, the testing showed some ways in which Anna is a really intelligent person, but also how she is very, very different from other kids.  Although these results are hard to digest, we appreciate having the documentation to help us advocate for Anna in educational settings.

Now it's on to the good stuff.  Most of the above was just the nuts and bolts of what we have to keep track of.

Food update - Back in April, we began the process of weaning Anna off of tube feeds.  At that point, she was getting 300 mL of formula each day that was a total of 450 calories, in addition to the homemade purees.  Every few weeks, we'd cut back on the amount of formula she was given throughout the day.  We would keep track of her oral intake and her weight, to make sure we had the data to support our own observations.  Things were going very well and we were given the approval of the GI doctor at our June appointment to continue as planned.

As of June 27 (Anna's 11th birthday), Anna is no long receiving formula.  She still receives three "meals" of our homemade purees and a bolus of water in the mornings, but that's it.  We are hopeful that Anna can continue to make forward progress in this regard so that some day she can be completely off of g-tube feeds.  (What an amazing goal to have reached and what an amazing goal to have!)

PT update - In May, Anna had an OT/PT evaluation in preparation for her intensive therapy program.  Here are a few of her numbers.

For a balance test, she had previously scored 24 in 2016 and 28 in 2017.  The maximum score for children over 6 is 54.  In May, Anna scored 39!

Last August, Anna could walk 140 feet using her crutches during the 6 minute walk test.  In May, she walked 855 feet with her crutches, while wearing her backpack.  Whoa.

Last August, Anna could walk 10 meters using her walker at a speed of 1.16 m/s.  With her crutches, she walked at a pace of 0.15 m/s.  In May, she went 1.13 m/s with her crutches, 0.6 m/s with two single point canes, and 0.69 m/s independently.  That's right, people, she's now being testing on how fast she can walk without using any assistive devices.  She was certainly on a roll the day that she did her evaluation, but everyone is looking forward to seeing what this summer's Advance program has in store for her.

Anecdotally, Anna prefers to walk on her own in our house.  She either cruises from object to object and wall to wall, or walks carefully on her own.  More than once in the last week, Ethan has said, "Mom, Anna looks normal!" when Anna is standing in the middle of a room.  (We then have a conversation about what normal means.)  Given the choice, Anna more often asks to use her crutches when we're out and about.  If she knows there is a lot of walking, then she'll ask for her walker.

This journey has been several years in the making, and will continue for the rest of dear Anna's life.