We had a great second session with Pam today. I feel so fortunate that she agreed to see Ainsley. One wonderful thing about Ainsley is that she learns quickly and remembers. It was clear right away that she remembered the games we played with Pam the week before.
Pam: "What does the cat say?" (pointing to the picture)
Ainsley: "Ahhhh"
Pam: "Yea!" (with clapping)
Pam: "What does the dog say?" (pointing to the picture)
Ainsley: "Ahhhh"
Pam: "Yea! (with clapping)
This repeats through the 10 or so pages and then she starts the book over again as many times as Ainsley maintains interest.
Pam had her listening to her own voice using a tube and stethoscope and suggested making a whisper phone using PVC pipe, which we did and Ainsley LOVES. The idea is that listening to the voice draws attention to what the child is saying. And it's fun and encourages a kid to use her voice. Great ideas, huh?!
It's amazing to watch Ainsley be so incredibly vocal during the hour that we are there. And it has carried over at home. In addition it seems like all the practice is paying off. She's starting to make some consonant sounds. She can't make them on demand, but it's great to see the beginning of her using her lips and tongue to change sound. Even though she uses her vocal cords to produce intonation, she's never used her lips and tongue. Pam observed her eating. She gave the suggetion of allowing her to dip a tube into her "tastes" of food in order to get her chewing because it's during chewing that kids make sound and figure out that moving the jaw changes sound. Ainsley isn't ready to chew real food, but she can chew on toys. So we're going to be pushing the chew toys. And we've actually seen Ainsley start to close her mouth rather well around a spoon over the last few weeks so we're going to try to push feeding a little harder again.
Of course the progress toward true speech will likely be slow. Ainsley does have a malformation of her cerebellum and a trach. I'm under no illusion that it will be easy. But I have more hope than I've had in a long time. We will still be working on sign language and using an AAC device. It may be years before she can be understood by the average person. But honestly I'd be happy if she could verbally answer yes and no questions and say a few words. At least for now.
Pam sounds like a neat lady who is really aware of her patients and their needs. Glad to hear Ainsley is making progress. She will be heard and understood, someday! : ) Take care.
ReplyDeleteCongratulations!
ReplyDeleteyou really are doing a great job.I'm a spanish pediatrician treating patients like your daughter.
I think that your blog could be also very helpful for spanish families with tracheostomised children.
Thank you very much for share with us your loved family and all the knowledge required to care these children (that is not available in medical books!!)