Another specialist that comes to the house is a woman from the Infant-Parent Program. She is responsible for tracking Ryder's development. We had a fantastic visit in mid-September. She was so pleased with Ryder's development that she even offered to discharge him from the program. I politely declined, and asked her to continue monitoring Ryder as children with CblC (and other forms of MMA) can develop typically until the age of 2-3 years, and then their development starts to slow down and not keep up with other children of the same age. I was concerned because he was not yet sitting up on his own, but she told me it was fine and that he wasn't expected to do that until he was 9 months old (he was 5 months at the time). However, I was ecstatic that she was so impressed with Ryder, and I let myself believe he was going to be just fine.
The following week I took Ryder to the paediatrician. She was pleased with his vision (tracking objects), but was concerned because he was not sitting up and because the back of his head is pretty flat (he sleeps….a lot!). She referred him to an occupational therapist to deal with both the sitting and the flat head. This appointment brought my level of excitement down a few notches, but I was still hanging on to the fact that things just might turn out ok.
We saw the metabolic doctor and dietician at the beginning of October when Ryder was 5 1/2 months old. We talked about development and starting solids. While the doctors were out of the room Ben and I had a brief conversation about any other concerns we might have. I mentioned some weird movements Ryder had been doing where his head flopped down and his arms went up. We decided it wasn't a big deal and didn't mention it when the doctors came back. Ryder needs to eat a certain brand of baby cereal that has a low amount of protein. If he has more than 1 serving per day, then anything beyond the first serving has to be a special medical baby cereal so that he doesn't get too much protein in one day. We started the baby cereal when he was just over 6 months old and he LOVED it! He was just like Ethan was when he started eating cereal…grunting for more and diving towards the spoon.
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| First time eating cereal! |
About two weeks later on Halloween day, Wendy (the vision specialist) was at the house. She noticed Ryder do a weird movement while he was lying on his back in his "special room." (It is a box that he lays inside with toys hanging from above and mirrors on the side. He can "talk" in there and the sound is contained so it is stimulating for his brain. The toys are all over the place so he can practice looking from one toy to the next.)
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| Ryder's Special Room |
Later that same day, I went for lunch with my mom and I mentioned the weird movements with the head dropping and arms going up. She suggested looking in to possible seizures. Obviously I googled it the second I got home. It looked as though Ryder was having a type of seizure called "head drop seizures". I called the paediatrician immediately and she told me to take him to emerg. The doctors came in to evaluate him. I wasn't aware but the paediatrician called the ER doctor and told them to keep Ryder over night and do an EEG immediately. Obviously the message didn't get passed along to the doctor that actually saw him. The ER doctor that saw him said that since he didn't have a fever and his development was on-track, he was being discharged. They referred him to a neurologist for the following week and sent him home.
We went home and enjoyed the boys' first Halloween with (very rainy) trick-or-treating, which I'm really glad I didn't miss out on.
Cutest little Lion and Dino I've even seen!
I love him eating!
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