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. :)

Bertrand qualified for extended school year services (summer school at home once a week) AND (drumroll please)...

He is already looking forward to September. :)

*Four days in the afternoon class (12:00-2:30PM) with the same wonderful teacher.