July 12, 2011

A Tale of Mama's Instinct

Titi Aury reads to Bertrand.

Remember back in March how Bertrand was facing the prospect of phenol injections in his right adductor muscle to help with his hip subluxation? How I cancelled the appointment just a few days beforehand because I didn't feel right about it?

Well, today was Bertrand's 6 month follow-up, and my actions were justified in a big way! His subluxation has stayed the same and, very significantly, his adductors are not tight AT ALL.

So, muscle tightness isn't to blame for the subluxation! Phenol injections would've been ALL pain for NO gain. Going forward, all we can do is keep him standing as much as possible & keep an eye on his hips. Surgery may still be in his future (but I doubt it).

To my great relief, Bertrand is being fitted for a soft back brace tomorrow to help with his spinal curve. Currently, it's a functional, as opposed to structural, curve. In 6 months, he is seeing a spine specialist & may move to either a corrective brace (worn at night) or a form of serial casting therapy.

My mommy spidey sense tingles with the belief that this posture correction may help Bertrand's hip more than just about anything. Let's see if I can go 2 for 2 on orthopaedics. :)

July 2, 2011

Visiting Great-Grandma

Bertrand and Victoria went to visit their great-grandma today. She has not been feeling well, but seeing her favorite great-grandkids cheered her up! She enjoyed seeing the changes in Victoria, and there was no stopping her from feeding, playing with and reading to Bertrand! She is an amazing great-grandma. :)

July 1, 2011

A (tiny) happy dance.

Bertrand working out with his "personal trainer".

Bertrand's gastroenterology appointment this morning was just the good news I've been needing to hear. Starting with Bertrand's stats, he measured:
  • 39.5 inches (just above the 50th percentile for height)
  • 36 pounds (just below the 75th percentile for weight)
I could've happy danced for these numbers alone! All of our hard work with his diet and exercise (standing, gait trainer, horseback riding, etc.) have paid off. We have only a few more inches taller (or pounds smaller) to go to reach normal weight-for-height!

Then, his Doctor came in and said that, looking at Bertrand's most recent liver enzyme levels drawn in May, if Bertrand had been a new patient he would've wondered why B would need to see a GI doc! His liver appears almost entirely normal!

We shared a laugh that Bertrand is probably the first person in history to have their liver enzymes DECREASE while on depakote. But, due to the depakote, the GI Doctor would like to continue vitamin D and carnitine supplementation to protect the liver.

However, he now feels that we can wean Bertrand's prevacid! (While watching for signs of reflux.) And, in 6 months, we can begin a cautious actigall wean as well! (While monitoring his liver enzymes.)

That may not seem like a lot, but 2 fewer medications (administered a total of 4 times daily) is 1 step closer to a more enjoyable childhood for my precious boy. And that's worth celebrating!