July 23, 2011
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!
June 16, 2011
We're alive.
We just got back from Bertrand's Aunt Sabrina and Uncle Steve's lovely wedding in Kentucky. We will post pictures and stories from the trip soon. In the meantime, this post is to say we're alive and back on the horse--figuratively and literally. Bertrand recommenced hippotherapy at the National Ability Center in Park City this afternoon. He had a great time with his new therapist, Jane. She'll be focusing on his tactile defensiveness.
Victoria also had her 2 month well baby check-up and shots today. (She's a cranky mess.) At the appointment, her pediatrician mentioned that Bertrand needed another shot since vaccination guidelines had changed (more strains added) since he was a baby. His compromised immune system makes any additional protection, while not required, a very good idea.
His pediatrician also mentioned wanting to re-check several of Bertrand's labs: Triglycerides, ACTH, and ALP. I'll explain more in a later post, but in the interim she will be speaking with a pediatric endocrinologist on Bertrand's behalf and sending lab orders afterward. This blood should be drawn in the next few weeks.
Lastly, Bertrand will begin his keppra wean tonight. He is moving down to 400mg in the morning and 300mg in the evening. We hope to see no increase in his seizure activity. An increase in alertness would be a plus. He should be finished with the wean by his neurology follow-up in September when we will look at adding topamax. Bertrand also has a confirmed 10/12/2011 follow-up at Cleveland Clinic's Epilepsy Center.
June 6, 2011
9 Month Post-Infusion Report
Dear Dr. Kurtzberg,
It's been about 9 months since Bertrand's stem cell infusion. He is the happiest and most interactive he has ever been in his life! We don't know whether it's new medication (depakote), the stem cells or what, but, whatever the cause, we are extremely grateful.
Bertrand's most recent CMP on 5/27/11 had his ALT at 26 (normal range: 5-45) and AST at 63 (normal range: 20-60). This normalizing trend has continued in spite of increases in depakote. (His AFP is normal but his GGT is still elevated at 86, with a normal range of 4-15.)
In addition to his continued liver improvement, his smiles and his laughter, Bertrand has been re-learning skills and picking up new ones. He is learning to us eye gaze, as well as switches, to communicate his desires. He is vocalizing (I believe he has a word for Mama). He can raise his arms above his head for the first time, and he is again taking steps when supported or in a gait trainer.
He recently completed his first year of preschool and all of his teachers have remarked on the pronounced, positive changes they've seen in Bertrand since he started. We are very proud of him. :)
Warm regards,
Cristina Might
June 1, 2011
Last Day of the 2010-2011 School Year
Today was Bertrand's last day of preschool for the school year. It was great! His teachers & therapists all commented on how happy and alert he'd become since he started school. :)
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