The Finale

What a day we had. We went in this morning to do the baby thinker test. Keelie's participation was not so good. She was distracted. Ryland on the other hand did great. He watched the pictures and did what they were expecting him to do. We were glad we could help them out. It took about an hour. We grabbed a bite to eat at the Hall of Fame Cafe of Louisville then went back to the hotel for a nap. We needed Keelie to be well rested.

We headed back to the university at 3:30. We had to wait just a little bit when we got there so the kids got just a little bit rowdy. Angela came to get Keelie and I and we went into a room to talk to her. The goal here was for Keelie to talk spontaneously and recognize objects without being asked to recognize it. It took her a while to warm up. She finally did some talking and the thing that got her were goldfish. She really perked up when she started eating the goldfish crackers. After this evaluation she went to the playroom with the speech therapist and another speech person. Josh and I were able to watch her play in an adjacent room because they always film these sessions. This one lasted about 40 minutes. Myra played with her and they listened to how she pronounced words and what she would call each item they played with.

The results are mostly good. We learned quite a bit about Keelie and her speech. Her speech is not a delay it is a disorder. She has a borderline diagnosis of childhood apraxia of speech but they won't determine that until she is 3. She does not have all the signs of it just some. Keelie will try to say something and it will come out totally wrong. She may not even know she is saying it wrong. Her brain is trying to say one thing and something else comes out of her mouth. they want us to work on simple sounds and try to get her to say baby instead of maymay. Sometimes she may say baybay and others maymay. This is called a reduplication. She needs to learn to distinguish between the sounds. We are going to have to try to get her say the specific word for that specific object. They do not want us teaching her new sounds. They say she has a good "s" but that could be bad. Since she has a good "s" the speech therapist sometimes think she may be advancing and not need therapy because it is a delay but that is not the case. Keelie has a speech disorder and she doesn't realize she's doing a good "s" sound. They said she has several syllables which is why she seems confused. She also needs speech therapy more than once a week. They also said that pressure situations aren't good for Keelie. People with this disorder don't speak well in public or in stressful situations. They dont want us to force her or bribe her or even punish her for not talking well. They fear she could get frustrated because she can't talk and they don't want that for Keelie. Right now she is socializing and trying to communicate so the goal is to try to keep her that way. Other kids with this disorder tend to shelter themselves due to the lack of communication.

I left her scores in the car so I will have to post them tomorrow. They scored her on a Mullen scale.

We also learned that Keelie does have some sensory problems. Sometimes Keelie doesn't feel pain. This is part of her disorder. And Keelie does have hypotonia, which we know. This is also part of the disorder. They suggest she be in physical and occupational therapy. They feel like the braces for her ankles are a great idea. Others kids with this disorder have braces.

Keelie will be in therapy for a while but her future looks really good. She could have a speech problem but she will be able to talk and people will be able to understand her. She will get stronger but may always be weak. She will have a 50 percent chance of passing it on to her children. Overall, though I kind of feel relieved that her future can be just like anybody else's.

We will return in August to see the geneticist and speech therapist again. This is all I can think of right now. We were there from 3:30-8:30. It's late and I'm tired. I will blog more tomorrow when I get my notes and when I get home. So it actually may be Saturday before I get to it. Long ride home. I will also post a few photos from our trip. Thanks again for being a part of our journey and for the prayers. Good night.