This week is always really busy. Between therapy, everyone also works on making sure things are lined up in the community/home setting for the child’s return home to make sure the transition is as smooth and safe as possible.
For me it consists of asking tons of questions to the team before I lose that easy access, connecting with local nursing and therapists, making sure we have the supplies we need and making sure he gets as much out of his last week as possible, therapy and playroom wise.
We started a new medication last Friday that can target several different issues, and overall we feel it may actually be helping him with his sleep. I’m cautiously optimistic, also knowing that things can work for a while and then his brain and body changes and we are back to the drawing board.
Our therapy focus while being here has been teaching him to calm down his movements. When he is calm he can focus better and moves with more intention. The moment he gets excited he gets spastic and his movements get really uncoordinated. I really think he’s learned to slow down more, sometimes, which is great to see. It needs lots of reminders and support but it’s a huge step.
We also worked on overall strength. We brought the Firefly Scooot for him to practice on and he knows where his hands need to go. He just needs the coordination and strength to propel himself forward.
Feeding wise we didn’t make much progress. We did several taste stimulations and assessments and he’s clinically showing many signs of not being ready to feed orally. There are so many steps that go into safely eating and swallowing, and he just needs more time. Which is “okay”. I so badly want him to eat, but his safety comes first and he’s getting everything he needs, especially now with the blended diet of real food.
On Friday, after a bit of a last minute hiccup, we made the 3 hour drive home.
Let the next chapter begin.