It has been a while since I have had the chance to sit down and write. I don't really have the time now, either, but I figure a short update would be good.
We are scheduled to do suit therapy with Kyara starting Sept. 7. Yes, that is Labor Day and I think this therapy will be labor intensive for her! I hope she gets alot out of the therapy.
Kyara has a yeast infection in her neck folds that we have been battling for the last 3 weeks. Because she keeps her head down and to the left alot, the stupid infection won't dry up! We have had her on a couple of different creams, but so far, it is still there.
She is working on rolling and got in a gait trainer yesterday at therapy. That was exciting! I loved seeing her upright with feet on the floor.
The school system is sending a PT and an OT to the house to see Kyara once a week. She is still seeing her private therapists 2-3 times a week. So when it is all said and done, she is getting therapy everyday of the week. One thing I am not happy with is her speech. Her speech therapist is a feeding specialist, but that is not what I feel is most important for Kyara. I am looking for someone who is an alternative communication specialist. Someone who can assist Kyara with "voicing" her needs and wants, likes and dislikes.
Skylar has started school and is LOVING it! She starts soccer next week and guess who is coaching? This will be my first coaching experience, so it should be interesting. Skylar is still doing Karate, so our weeks will be busy.
Kassey is a busy bumblebee. She likes books and her vocabulary is getting bigger and bigger each day.
We are a very blessed family. I miss Kyara so much, but we are looking for the positives in every situation.
6 comments:
Dear Genie,
Thanks so much for making the time to keep everyone posted. We remain hopeful and continue to keep everyone in our prayers. No matter what comes in the path for each person, God can and will walk us through it in His strength. That's the only way we can make it and keep our sanity and attitude where it should be. Nothing can steal the joy we have in Christ, He holds us up and carries us too.
We love you guys, Spokane.
Can the school system send out a Speech therapist as well? Some of the best speech therapists I have met have been associated with school systems....
I am a special educator who often works with students who use assistive communication devices. They have been instrumental in helping many students (not all) find their voice. There are voice output devices that have 6-8 buttons/pictures that you can program. They are simple to use (kind of like the Big Mac switches Kyara has used). More sophisticated devices, such as a Dynavox (you can check it out on the web if interested) have also been used quite a bit. I have one student with extremely limited mobility who is able to manipulate the pages on the Dynavox by using the side of her fist. I want to validate your concerns regarding Kyara's speech therapist. I'm not sure about the law in GA, but in WI (where I am from), parents have the right to call a meeting of their child's IEP team at anytime. I know it is difficult because you are so new to everything, but don't be afraid to stand up for what you believe is best for Kyara. Some of the families I've learned the most from and respected the most are the ones who were not afraid to voice concerns. Please feel free to contact me with any questions. My e-mail is: baxter040506@gmail.com
Genie,
Thanks for posting an update. I check in every few days to see how you all are. Glad Skylar likes school and Kassey continues to blossom. I look forward to reading about the suit therapy. Glad Kyara is getting the other therapies, as well. I imagine coaching soccer will be therapy for you! You're in my thoughts.
Clara
Hi Genie, here are the web pages I was telling you about. You are all in our prayers every day and we will especially pray that Kyara responds to the suit therapy. We enjoy seeing you all at karate each week!
http://www.rehabtool.com/forum/discussions/194.html
http://home.techsoup.org/pages/default.aspx
Susan Loper
We're relieved to know that things are moving along... had not seen any updates for a while. We're happy to hear that Kyara is going through therapy every day and that Skylar is enjoying school and that you, Genie, will be making your coaching debut! Awesome news!
Sending you all our love and prayers.
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