Homework and help

Okay, so on Wednesday, ITSJC stopped by to do a Speech evaluation to see what they think they can do to help Kylie. I was really nervous because our Speech Pathologist at CMH told us that ITSJC has restructured quite a bit and is more centered around giving family the info on what to do, and less outside help for therapy.



We are both good with doing whatever we can do to help Kylie, and are ready for all that needs done. It just helps when you know that someone who knows what they are doing is coming to help you and work with you and your child. I just feel like if it was all on me then I would have all this pressure weighing down on me to getting Kylie where she needs to be, and I'm not sure how I would do if Kylie weren't progressing well enough...I would feel like I let her down, and well that would be hard to handle.



Anyway, I don't have to worry about that because Kylie will be getting therapy from ITSJC! Kylie absolutely loves her speech therapist, Michelle. Kylie got so comfortable with her, that she was putting toys on her head, and touching her hair (she loves hair...I think she likes how it feels), and then she gently grabbed Michelle's head and pulled it close to her and hugged her head...how cute is that!



Kylie also got pretty close with our ITSJC coordinator, Susan. She was playing with her bracelet..meaning she had to touch her arm to get it off of her. That is really big for Kylie!



Let me deviate from the fun stuff to talk about the therapies. Yes, therapies! Kylie has qualified for 12 visits with Speech and OT, and then they review things again in 3 months to see how she is doing and then will see if she contd therapies are necessary (I'm guessing she will have to get re-qualified and approved for more visits if needed). That equates to therapy once a week for both Speech and OT. We may have some of the therapies doubled up, since some things overlap and that way the therapists can work together and figure out how they can best help Kylie.



I am working on getting the actual notes and scores on where Kylie ended up based on her visit with them from 2 wks ago. When meeting with the coordinator and speech therapist this week, Susan mentioned that she scored Kylie at 5-6 months on her language, so that puts her behind like 10 months (she will be 16 months next week). But the good side of it is that with her understanding so much of what we say and tell her to do, she scored at 21-24 months! What a smart cookie!!



They do believe that her being so smart is why she progressed so quickly from pointing and making sounds to pointing and screaming. She knows so much, much more than she should for her age that she has more than just single words to say...she is more or less yelling sentences and paragraphs that she can't yet speak. Wouldn't you scream too?



I never noticed this, but Michelle and Susan both noticed that Kylie doesn't really move her mouth much when she does make sounds. So that will be something to work on. They thought they may do something like putting chap stick on her lips or jelly on her top lip for her to move her mouth more as she tries to rub her lips together to get it off.



We still have to meet the OT, and that is mainly for the sensory issues that they believe Kylie has. I am anxious to see the activities and things they do to help her work through those and not be so finicky with different textures, and people getting closer to her.



Last thing is the IS study that Kylie is in. Well, part of the study is genetic testing, so that means a blood draw...not so fun, right? Right. It was quite the ordeal for the lab and registration to get everything figured out on what to do before they could do the lab draw. Once that got done (like an hour and a half later), it was off to the drawing room. I think Kylie knows what it means to walk into a room in a hospital, because she instantly started to scream. We knew it was going to be a challenge to get through it all. Matt held her down from her head, and I had her legs and her arm that was being poked. Kylie is a superstar! The phlebotomist was great, and Kylie's good veins helped too! Just one stick is all it took and we got what we needed for them to send off to the lab for testing. I guess genetic testing is quite the process, so it will take a few months before we find out anything. Who knows, we just may get some answers as to why things happened, and even a bit of closure.

Anyhow that is all. Sorry no pics, but we will try to take some before the next post. As always, thanks for checking in :)