Friday, September 27, 2013

Time for School

 We're back in school and back into the swing of things. Adjusting to new schedules, new teachers, new classrooms, new cub scout troop, etc. Mimi was not too happy the day Max went back to school. But she sure was proud when it was her turn the next day. With her backpack tipping her backwards a little bit, and her lunch box suddenly seeming much larger than the day we bought it...we headed to school happily.
 Mimi is attending Schreiber Pediatric STARS preschool. There were several trips with her PT  to the playground there this summer, to get acclimated. We also visited her teacher Mr. Jay a couple times. We learned that she didn't have to wait til she was three to start, because the school is associated with IU13, and she was able to start in late August. Mr. Jay and Ms. Carla help her get a mid morning meal, out of the Barbie lunchbox (LOL, not just for show). Inside is cereal with milk and a bowl and spoon. A cherry Lara bar. and two or three warm sausages in a Campbells thermos with a plate and fork. And maybe some fruit.
 Hershey gave us the option of scheduling her pituitary stimulation test on the first day of school (no way), or mid November. We picked November so she could have this moment like all the other kids.
BELOW: First day finger painting.
 It feels like it's been a very long month. I am enjoying and adjusting to the new schedules and "almost" having a diagnosis. Dr. Harbison at the MAGIC Convention announced that Mimi is Growth Hormone Deficient, and looks like a Laron Dwarf (Resistant to Growth Hormone), so we're nearly there, and hopefully the November stim test will go more easily than I'm imagining and give us a confirmed diagnosis. What is a STIM test? We received a brochure from Hershey created by Novo Nordisk (who we also met at the convention). You can read about the test here:

I am still getting asked if she eats from adults with accusing faces. But that is offset by mothers at preschool telling me about what their kids said at home about Mimi eating. "Mimi eats frosted mini wheats. but she doesn't share them." or "No, I don't eat Mimi's sausages." LOL

Adjusting to a new schedule has been both exciting and tiring for her. There are more naps than before. She's sleeping better and going to sleep earlier at night.

Mimi rides in a stroller sometimes so that she can preserve her calories. It feels strange for me, like she really should walk everywhere at almost three years old. but she's already using 1600 calories a day with little weight gain, so I feel it's necessary as to avoid total hunger exhaustion melt down, and to just use the stroller. I also fear weight loss as it takes her a very long time for her to gain a pound. As we learned, sometimes kids with growth impairment need a huge amount of food to grow at all. There is a delicate dance we go through, as to be careful not to burn up all we ate that day, but still be active, use our muscles, climb, run and have fun. (so for example, we might stroll her to the park and back, but let her play for quite a while there until she's "done.") and needs to eat again and head home.

We got out the winter clothes, boots, and flannel pajamas for Mimi as some days here in Pennsylvania, it's gotten quite chilly. We found that yes, they do still fit, and some are still too big. That is very much a strange thing, as with Max I knew nothing would fit him a year later. It's quite strange this saving of young childs clothes from one year to the next. I'm convinced it's a natural primal reaction to feel that this isn't natural... and so knowing what we know, I piled up the summer clothes and with a little sigh, put them away for next spring, in case they still fit- but hoping they won't. but also saying to myself too, "it's ok if they still's ok. get used to it." but not liking it. (primal reaction).

Max on the other hand, could be growing up to be an NFL football player (like his Great Grandfather who played for the original Buffalo Bills), and we discovered after school had started that he needed all new pants! So I also envision ten years from now. My tall son, and my little Mimi bossing him every evening and weekend. It makes me laugh.

I enjoy their sibling interactions and their size differences and personal differences. It's quite entertaining sometimes after a day of managing food, and pick ups and drop offs and playtime. Just to enjoy them in the here and now, knowing the future will also be entertaining- no matter what.