If I’m being honest, the last couple weeks have been hard.
Reese has been fighting taking her medicines so every morning and every night have been a struggle. It’s draining. I can’t say that I blame her – they have a strong, awful taste that I wouldn’t want to have to take. We do the best we can, but between the medicines and the supplements, there are just a lot.
Also, since weaning from the ACTH, her appetite has become nearly non-existent. At this point, I’d be really happy (and surprised) if she ate 2 meals a day. She didn’t have much of an appetite before the ACTH, but I was hoping that being so hungry while on the steroid would have some lasting effects.
Reese did some neurological testing a few weeks ago. We knew she has at least a moderate speech and language delay, but we wanted to see where she was in other areas. In the questionnaire beforehand, it asked Reese’s strengths and one that I wrote was problem solving. She tucks things under her chin if she wants to carry more when her hands are full and once at a play kitchen, she couldn’t reach the microwave so she popped the sink out, flipped it over on the floor, and used it as a step stool. Family and friends seemed pretty impressed with her problem solving abilities, so I don’t think I’m the only one who felt it was a strength.
We got the results and Reese has a global developmental delay – she’s around the 10th percentile in every area (including problem solving) except for gross motor. For gross motor, she’s age appropriate.
It was a punch to the gut. Something I thought was a strength of hers was actually not a strength at all.
While the seizures were uncontrolled, we would read stories about other children and how it was like someone hit a pause button on development. Reese was improving (albeit slowly) so we thought this didn’t apply to us. We realize now that it’s exactly what happened.
Reese had another EEG on Monday and then saw our neurologist on Tuesday. Thankfully, the EEG was (again!) considered normal. So now we are going to wean off the Vigabatrin (which was already a low dose) over the next couple weeks and then possibly start weaning off the Onfi. Lately Reese’s coordination seems a little “drunken sailor” and we suspect it’s the Onfi, but don’t want to wean 2 medicines at once, so we decided to just tolerate her clumsiness for a few more weeks.
I mentioned to our neurologist the results of Reese’s developmental testing. He was very positive about how far we’ve come and felt that she has time to catch up. I made some throw away comment like “maybe considering the Lennox Gastaut and where we were in December, we should consider ourselves lucky that we’re even on the curve.” He quickly agreed, which helped to put things in perspective.
Since getting the results of the testing, I’ve enlisted my sister (who is a Montessori teacher) to help me find new ways to help Reese continue to improve. What a wonderful resource to have in our family! I’ve already noticed that Reese’s attention span has improved, so I suppose the positive part of the testing is that it served as a good wakeup call.
I do believe that Reese will catch up a bit (exactly how much, I don’t know). It just bums me out that she’s having to work twice as hard just to be where all the other kids are. It feels like we’re farther away from normal than I thought we were. But that’s okay. Maybe I should have written that Reese’s strength is her persistence, and that is really an excellent trait to have.