Little Mermaid was awesome. Way better than Snow Queen. Nora’s favorite part was the eels’ glowing tails.
Had dinner at Sprout in Mt. Adams - I couldn’t even remember the last time I’d been in that neighborhood! At 11:30 party buses were dropping off hoards of drunk youths in costumes. It was nuts.
I took Monday/Tuesday off to not only take Hannah to an appointment, but to organize my basement. The girls would still go to the sitter. Oh yes.
It was great - I was giddy getting those plastic bins at Target! Mainly I wanted to shift the girls closets; seasons + sizes. Just BIN everything up! I also piled up all the baby gear - goodbye! Hello space! Very satisfying.
Monday AM was Hannah’s annual evaluation for Help Me Grow. A full house of therapists to ask questions and work with Hannah. She’s behind motor skills even for kids with Ds, but they and we know it’s due to the heart surgery setback. We just continue to work on strengthening those arms.
We need to work on communication; learning basic signs and commands such as “Give it to me, Hannah.”
Her eating and straw drinking improves. Hannah actually lifted a “loaded” spoon and ate it on her own! Everyone was very excited! We will continue to get her to eat on her own and try all foods with her.
On Tuesday, we had a 10am evaluation at the Thomas Center [for Down syndrome]. 10am is a really awkward time; it’s Hannah’s second feeding then nap time. Ugh. Of course she fell asleep 10 minutes before we arrived and I sat in the back of the car in the garage to give her half a feeding before going in.
We didn’t see anyone until about 10:20am. The physician was very nice and didn’t have much to say since we’ve been on top of everything. I did bring up Hannah’s new fluttering tongue; I thought it was involuntary. It’s sporadic. The physician was concerned, but felt we should check in with a Neurologist. Great.
During this consult, Hannah was tired and cranky with a cold - I knew she needed a nap. For the first time ever, she constantly reached for me and wanted to be held. Poor baby.
Closer to 11am, we moved to the large play room where I was asked questions by ST [speech therapy], PT [physical], OT [occupational], and a nutritionalist. I answered all their questions. They wanted to know if Hannah was always cranky with PT and thankfully the ST knows Hannah and could verify she was NOT herself; cried on her belly, cried on her knees, wouldn’t drink from her cup... it was frustrating and I just wanted to be done for Hannah’s sake.
The team felt we may need a swallow study to see if Hannah has anything preventing her from eating. She can sound phlegmy even when she doesn’t have a cold because it’s just sitting in her throat.
“So who are you seeing with ENT?” Sigh. “No one. We haven’t had a reason.” What’s another appointment with a specialist, right??
We finally left and I felt deflated. I felt like we had been in a good groove... I dropped off Hannah by 1pm to finish my house work. I spent a good 45 minutes making more appointments [as well as for Ailo’s dental cleaning] and re-arranging double-booked therapies.
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| A typical month of therapies/appointments. |
I know it’s all for good and it won’t always be this way... it doesn’t help that she’s on her 3rd cold in about a month.
We’ll manage!
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