Just like everyone, CB has his on days and his off days. Well, lately his behaviors have been wavering quite a bit so it is more like he has his good moments and bad moments. Yesterday during his OT session, he was so positive and took everything head-on. He laughed while working with the OT on the spinning board. He actually was laughing. Just a few months ago, he was super scared and required the security of the OT riding with him just so he could tolerate it for a few spins. Whatever the OT suggested, he was on board and didn’t put up his usual walls. Most of the time for CB, his first reaction to any suggestion is no. He immediately jumps to the “I can’t do it” mentality and gets frustrated from the get go. We are currently working with him to try to shift his perspective, calm down, and try the task a few times before getting frustrated. So that was a very positive and “on” moment for CB. Today during swim class, he was totally off and sensory-seeking. He was moving the entire time and either splashing, putting water on a classmate, dumping over swim container baskets, or just not paying attention. He even was pretty off when he was in the water with his swim teacher. It is so hard to figure out what CB needs to feel focused and comfortable. Both his OT session and swim class immediately followed a nap so it isn’t like for one class he was really active beforehand and not for the other.
On another note, we got his nutrition report back and he is not vitamin-deficient anymore – yay! Now, he is still a little low on iron based off his ferritin and UBC levels, but the values continue to increase. His Immunoglobulin A levels have increased a bit. They are still low but he has moved out of the selective IGA deficiency range. We know he can produce some IGA, at least. He also had quite a low homocysteine level, slightly low WBC, slightly low carbon dioxide, slightly high vitamin e, and slightly high vitamin a levels. So most likely he still has some inflammation or bleeding. We still haven’t done the organics acid test b/c it requires the patient to not eat apples, pears, grapes, cranberries or their juices w/in 24 hours of providing the sample, and to pee in a cup first thing in the morning before eating or drinking. This is honestly too difficult right now to take on. We tried in early Jan and it was a disaster. Once CB gets in the habit of peeing in the morning before breakfast, then we will try it.
Tomorrow, if all goes well, CB will have his blood drawn for the food and seasonal allergy test. We know CB is allergic to processed soy and has seasonal allergies just based off observation. He is also battling a rash on his bottom, which appeared on and off for several months, and has shown symptoms like he may have some other food allergies. We will see if the test tells us much.
For a therapy update, CB’s ST has started incorporated straw therapy a week and a half ago. CB thrusts his tongue out when drinking from a straw. In regards to the PT developmental exercises I am performing at home with CB to work on integrating his retained primitive reflexes, this is a challenge. CB puts up a fight almost every time we perform the exercises. I need to work on a new strategy so it is not a battle. He typically doesn’t actually mind most of the exercises once we get started. It is the starting part that is so hard for him.
Glowing Glances: We visited a new park and a new children’s museum during a trip we took this past week and CB owned the playscapes. He climbed new play gyms that were not just like the ones he has seen at other parks. For CB, he has to perform tasks over and over and over before he can be successful at a task. Even then, he can forget how to do something depending on the day or environment. So it was so encouraging to see him be able to use his skills he has used in other contexts and apply them to new situations and environments. He also regularly says “of you or of ew” when prompted. Even though it is prompted, it still fills me with joy to hear him repeating the phrase “I love you”. Oh, and he regularly thanks me ” tank you or tank ew” for dinner and says “ih good”. 🙂