Little superhero 💪🏻
We’re continuing to see some progress with him. He’s figured out rolling, which is super exciting. We need to constantly have eyes on him as he tends to get his arms in a position where he could get hurt, and because of his decreased/lack of pain since he wouldn’t let us know if he’s hurting and he doesn’t have the control to get himself out of it either all the time, but the rolling is incredible!
His tone has been causing more issues. He’s moving, constantly. Which is great in a sense except it’s uncontrolled and a LOT which gets in the way of him falling asleep, therapy, being held etc. He’s like a fish out of water and it’s actually rather heartbreaking.
This whole journey is. A milestone celebration quickly gets clouded over by the harsh reality as to why that is such a big deal again. We won’t be taking the same little boy home we had in December, skill-wise. He’s smiling, happy and loving life but the reality still is that he suffered a major setback, and we don’t know what his overall recovery process will look like, but as always, we will take things one day at a time.
We went home for the weekend.
We had his seating appointment on Friday to take measurements and fill out paperwork for his specialized stroller, which was great, as the process for approval takes several months so the sooner those papers are submitted the better. We’ll go back in a month to meet with the Vendor as well and check out some Demos, making a decision on which stroller we’ll end up ordering (something MUCH nicer than the machine he’s got right now, that we know for sure)
Unfortunately, our weekend plans were crushed when his feeding tube came out on Saturday evening. The balloon in his button broke. We left early Sunday morning to make it to SickKids and ended up spending all day at the ER – we had to go through emerge to get up to IGT for the new button placement. He was a total champ and we finally made it back to Rehab shortly after 8.