I reread what I wrote last night and realized that I got tired and stopped short of finishing telling you about our day. I didn’t tell you anything about speech therapy.
After being away for 9 months, we finally decided it was time to go back to speech therapy. We only just barely arrived on time, because we were coming from the meeting with the school. Thank goodness my sister had tagged along to help with Patrick or he would never have done so well.
But he DID do well. His therapist hasn’t seen him in a really long time and it was fun to see her reaction to his progress. Because speech is one place where Patrick’s progress is simply amazing. Being able to find car keys like a french pig finds truffles, Patrick found his therapist’s key on his therapist’s desk, brought it to her and asked “Do you drive a Volvo?” She laughed and said that he’d graduated speech therapy.
No, seriously though. He’s come a long way but is still struggling with things like pronunciation and verb tenses and sentence and word structure. She started doing some testing yesterday. It was amazing to see how far his receptive (listening) language has come. He flew through that test with all kinds of new words. Amazing how 9 months of netflix can expand your vocabulary.
The expressive language, though.. the one where he had to say what he saw in pictures. That wasn’t flying colors. And it kind of demonstrated what I have been seeing. Patrick knows words. But recalling them to say that, that is hard. It’s part of why he is always asking everyone their name.
We had a good talk about attention and ADHD and attention and steroids. His therapist said she has seen steroids really affect attention before. And that lack of attention causes trouble with memory. It all kind of fit. Not that I know what to do about it. But it fit.
So that was that. Now we just have to get insurance to agree to pay for speech therapy again.
In other big news, I got a call from Patrick’s allergist this morning. (After missing the appointment, they had him call me.) He went through the blood test and scratch test results pretty thoroughly.. figuring out what is safe to try and what wasn’t. He told me to be very careful with some newly diagnosed allergies: soy and tomato especially. And he also gave permission to try some cow’s milk with Patrick because all the tests indicate Patrick may have outgrown that allergy.
When I offered Patrick a piece of cow’s milk cheese, he was quite fearful. It took half an hour to convince him it was ok to take a small bite. He nibbled a couple more and then, after a few minutes when he saw he was still safe, he grabbed that piece of cheese and gobbled it down. No reaction. So, later in the day, I gave Patrick a piece of string cheese. He really loved that. He asked for another later on. And then he tried to get to eat only string cheese for dinner.
I nixed that plan but did try some pasta with cream of chicken soup in the recipe. Fail. He got spots on his face. No worse reaction. But too many ingredients. I can’t tell you if it was the dairy or the soy or something else. But we’ll need to be more careful before we try that again.
What a tricky balance. Introducing Patrick cautiously to foods to find out how he’ll react. And then, on the other hand, trying to make sure that he’s eating as many calories as possible.
We cut Patrick’s tube feeds in half last night. Now, he’s only getting about 200 calories over 4 hours. I think it will work. I think he can eat the target 1800-2000 calories easily. But not if I cook him dinner and discover I made him something unsafe. Tonight I ended up making a whole extra dinner for him. And yet, I still don’t think he ate his full calories.
if Patrick can maintain or gain weight, the goal is to switch to all oral food next month. Knock on wood. This wasn’t the greatest way to start today.
Today was kind of hard all around, though. And not just because my hot pad slipped and I burned my thumb cooking fish sticks. That just set me back.
But knowing that school had started. Seeing the school next door bustling with life. And everyone’s first day of school pictures on Facebook, and Patrick asking to play with friends who are no longer home. And then us.. just trying to find the right balance of work and entertainment to get us through yet another day at home. I’ve been doing this for almost 9 months now. I am exhausted. And it’s driving through the middle of nowhere and finally spotting a town and needing the restroom and then discovering that the restroom where you are is out of order and you’ll have to go across the street. Holding on those last moments when you thought you’d made it to the finish line, but the finish line moved. It’s hard.
I look around me and I see so many things that have been just waiting. Waiting for me to have time and free hands. But that’s not the time right now for me. And with needing to be a part of training, it might not even really happen for a while.
At least the day ended well. Patrick raised his start to the ceiling of the Make-a-Wish building tonight. Family and friends came. We took a tour and we ate some cake and we visited. Patrick was exhausted and crazed.
But it was a moving moment to see his star go up with the others after all. Even if he did do the fastest ever.
I’d add pictures but they are on Brian’s phone and my battery is dying so I’m going to post now.
Patrick Hoopes 