Sometimes it seems silly to me that we are still going to OT and PT when Averi has so much going on right now. But the truth is that when she’s in the hospital for a month she will undoubtedly fall even more behind. This has put me into therapy overdrive and I am trying to get as much out of it as I can. Sometimes it feels like there’s not much working for her, so I am trying to help her make up the difference.
She is slowly doing better with the straw. This last week she did really well and will now take 4 oz in her allotted 15 minutes. While this is double what she was doing when we first started the new thickener, it’s just barely what she was doing several months ago before we had to take out cereals and stop using the bear for a while (see what I mean about how quickly she falls backwards when we aren’t constantly working on going forwards?).
I am very proud of her and all the work she is doing. Since talking to the ENT after he did her laryngoscopy, I have put my dreams of her eating like normal on hold and accepted the fact that this isn’t something that will go away anytime soon (or maybe ever). This definitely keeps me from getting as frustrated as I used to.
Today was a lot of fun.
tried to get Averi to drink from the honey bear when she was taking a break from the lollipop but she wanted nothing to do with it. She got very coordinated with getting it to her mouth…and on her arms and legs and clothes. I’m not gunna lie, this is going to be a great pick-me-up for her in the near future. Frances
Our homework for the week is to get Averi to start holding the bear while she is drinking. I think she is currently more interested in poking it in the eye than in holding it, but we will work on it. One day she will be able to feed herself, you just wait.