Charlie’s appointment with the developmental pediatrics clinic yesterday was so-so. It could have gone better. On the other hand, it could have been worse. I have been given a new word to learn and digest: Apraxia.
The day started when Charlie met with the speech pathologist for her evaluation.
The speech pathologist was thrilled with Charlie’s feeding progress. When she was evaluated last April, she would not allow a spoon to pass her lips. Yesterday, Charlie happily munched on crackers and sipped juice through a straw. I proudly rattled off the list of foods Charlie will eat. We discussed my concerns that she often chokes and does not eat enough solid food to meet her nutritional requirements.
During the second half of the evaluation, the speech pathologist assessed Charlie’s speech delay. From what I understand, Charlie should have more words and the few words she has should be clearer. However, her receptive language (her understanding) is great. The speech pathologist mentioned the word apraxia.
The occupational therapist was the next to assess Charlie. During the evaluation, she placed a peg board with pegs in front of Charlie. I had not tried anything similar with Charlie and I wasn’t sure she would be able to do it. Much to my surprise, she followed the OT’s cues and placed the pegs in their holes. I was ecstatic.
Charlie tested slightly below her adjusted age which is a huge improvement over her past OT evaluations. I am proud of Charlie’s progress. A year ago, I was elated her hands had finally opened and she was strong enough to hold a light toy. I did not dare to hope that Charlie would be where she is today. There was too much heartbreak at stake.
Next, Charlie saw the developmental pediatrician. He further discussed apraxia with me and suggested, if at all possible, Charlie receive speech therapy twice a week. He mapped out the obstacles I face such as insurance coverage and finding an appropriate therapy program to provide services.
Also, we discussed whether or not Charlie needed another set of AFOs. He didn’t think it was necessary but wanted to see what the physical therapist suggested. Charlie has hypertonia in her ankles and hypotonia in her knees and hips. We finished our meeting with a discussion about changing from Early Intervention services to private center based services.
Finally, Charlie was assessed by the physical therapist. Overall, Charlie did really well (for Charlie). The physical therapist recommended that Charlie have shoe inserts rather than AFOs.
We finished the long day by fitting Charlie with her new inserts.
Overall, I’m delighted with Charlie’s progress in the PT, OT, and feeding part of the speech evaluation. Although, I’m a little crestfallen that her speech delay is more complicated and of greater concern than I had expected.
Now, I have the task of implementing the clinic’s recommendations while navigating the obstacles of insurance and available services. It feels a little overwhelming. However, I am chipping away at things a little bit at a time. Hopefully, things will be in place before I know it. Day by day is all I can handle right now.