Head up!
Head up in the Gait Trainer!
Sitting by herself!!
First Day of therapy. Kyara is riding Snowflake. She seemed very happy when riding the pony!
First Day, Sharon is supporting Kyara in the cage. The last week, Kyara was able to stand here by herself!We ended the suit therapy last Monday. I think it was well worth our time. Since we have been seeing Kyara's regular therapist this week, I have had them all mention how "different" she feels. Her arms are looser, she is holding her trunk better, she holds her head up more often and for longer periods of time. She is smiling, at least a little smile, each day. Kyara is able to do partial weight bearing with her left leg (she has lots of support, hints the word partial, but she is able to do it!). I am very pleased with the results. Of course, I wish she had jumped up and ran out of there, but I tried to go into the process with realistic expectations. Sharon, the therapist at Kids In Motion, was awesome. She and April, her rehab aid, worked hard with Kyara for the three weeks. I am ready to get Kyara back in the therapy for another session. Hopefully we can get get insurance to approve another round since she had good progress with the first round of suit therapy.
So now that suit therapy is over, I am back to procrastinating about school. What is best? How can I get ALL of the therapies in, schooling in, and be there for Skylar and Kassey? Sometimes I think there are not enough hours in the day, then other days I wish the day was over so I can go to bed! Well, tomorrow is Kyara's IEP so I guess it is time to make decisions. This is what I am thinking... I want Kyara to go to school 1/2 days. I want her to go mornings on Monday, Wednesday, and Friday. And I want her to go afternoons on Tuesday and Thursday. This will give her the chance to do physical and occupational therapies on M, W, and F, and speech on Tues and Thursday. . I want Kyara to have an one-on-one aid while she is at school and I want her going to regular kindergarten classrooms for calendar and circle time. I don't think I am asking for too much, only what is best for my child.
Speaking about speech, I think we may have found a new speech therapist who specializes in communication. Kyara and I are meeting her on Tuesday morning, so we will see what she has to offer and see how Kyara responds to her. I have high hopes. Of course, I always have high hopes!! I was given her name by a company that specializes on augmentative communication, Dynamics. Unfortunately, the company is in North Atlanta and we live in South Atlanta. It is a GOOD hour drive to get to Dynamics. They suggested I get in touch with the speech therapist in Peachtree City. That is a more reasonable 15 minute drive from my house and Kyara's school. The thing about Dynamics is that they evaluate special needs kids for communication devices. One in particular is very interesting to us. It is called a dynavox. I am not sure whether Kyara's is ready for it, but it sounds really neat. It is a computer that would give her the ability to communicate with us. The people at Dynamics will do an evaluation (the evaluation process could take up to 5 weeks to finish, they are very thorough!) to see if Kyara is ready for one. Since insurance only pays for this once, we have to make sure timing is right! The Dynavox is close to $16,000!! If Kyara is ready for one, then the speech therapist in Peachtree City will teach her and us how to use the device. I still want to push Kyara toward speaking again. That is our ultimate goal, but she needs to be able to communicate her needs and wants to us now!
So, in a nutshell, that is what has been happening around here lately. I pray this week goes well. I am nervous about the IEP tomorrow. I have heard horror stories about them! I wrote out my desires for Kyara on this entry so that I can see how I come out tomorrow. For some reason I feel very defensive/aggressive, as if I am going to have to fight for what I feel is in Kyara's best interest. God, please allow the right path to be figured out tomorrow.
So now that suit therapy is over, I am back to procrastinating about school. What is best? How can I get ALL of the therapies in, schooling in, and be there for Skylar and Kassey? Sometimes I think there are not enough hours in the day, then other days I wish the day was over so I can go to bed! Well, tomorrow is Kyara's IEP so I guess it is time to make decisions. This is what I am thinking... I want Kyara to go to school 1/2 days. I want her to go mornings on Monday, Wednesday, and Friday. And I want her to go afternoons on Tuesday and Thursday. This will give her the chance to do physical and occupational therapies on M, W, and F, and speech on Tues and Thursday. . I want Kyara to have an one-on-one aid while she is at school and I want her going to regular kindergarten classrooms for calendar and circle time. I don't think I am asking for too much, only what is best for my child.
Speaking about speech, I think we may have found a new speech therapist who specializes in communication. Kyara and I are meeting her on Tuesday morning, so we will see what she has to offer and see how Kyara responds to her. I have high hopes. Of course, I always have high hopes!! I was given her name by a company that specializes on augmentative communication, Dynamics. Unfortunately, the company is in North Atlanta and we live in South Atlanta. It is a GOOD hour drive to get to Dynamics. They suggested I get in touch with the speech therapist in Peachtree City. That is a more reasonable 15 minute drive from my house and Kyara's school. The thing about Dynamics is that they evaluate special needs kids for communication devices. One in particular is very interesting to us. It is called a dynavox. I am not sure whether Kyara's is ready for it, but it sounds really neat. It is a computer that would give her the ability to communicate with us. The people at Dynamics will do an evaluation (the evaluation process could take up to 5 weeks to finish, they are very thorough!) to see if Kyara is ready for one. Since insurance only pays for this once, we have to make sure timing is right! The Dynavox is close to $16,000!! If Kyara is ready for one, then the speech therapist in Peachtree City will teach her and us how to use the device. I still want to push Kyara toward speaking again. That is our ultimate goal, but she needs to be able to communicate her needs and wants to us now!
So, in a nutshell, that is what has been happening around here lately. I pray this week goes well. I am nervous about the IEP tomorrow. I have heard horror stories about them! I wrote out my desires for Kyara on this entry so that I can see how I come out tomorrow. For some reason I feel very defensive/aggressive, as if I am going to have to fight for what I feel is in Kyara's best interest. God, please allow the right path to be figured out tomorrow.
8 comments:
Thanks for the photos. How they touch the heart! Graham
Genie,
You are right on track with your desires for Kyara. Keep fighting for her - your persistance will pay off. And as I have learned over and over with my children, a mom's intuition is worth far more than anyone else's opinion!!
We are thrilled to hear of the progress she is making. We pray for you guys daily.
Good luck with the IEP meeting!!
The Brandons
Genie,
You are doing an awesome job. Just hearing your schedule makes me tired! I am glad you are fighting for Kyara to get the help she needs. We will pray God will place His favor over you and Gunars to bring everything together for the best. Stay close to God and know that His ways are the best. We love you all, give Skylar, Kyara and Kassey love and kisses from us! Love, Spokane
So great to see an update from you! Love the pictures! Thinking of you guys and praying for Kyara, for the IEP, and for God's provisions for her. He will open doors for you. Praying,
Adrienne Maples, WRES
I got word today that Kyara will be at Poplar road and was so excited! It sounds like you did well standing your ground at the IEP meeting as your schedule sounds like what you wanted. I guess I'm a little selfish, but I am happy that I will get to see her every day now! God has big things planned for her and her ministry has already begun even before she dawns the doors at PRES. There are so many of us that have been following her story and have been praying for her and so many that can't wait to meet her for themselves in person. It is so great to see the pictures from her therapy and to see how much she has improved in the last month. It's just a little glimpse of what is to come. We will continue to pray for her communication and her mobility and that she adjusts well to school.
Love to all,
The Loper's
Genie,
This is Laura, I went to high school with Gunars in Caracas. How did the IEP meeting go? Don't let them scare you. They are truly meant to help the children and ensure that all is being done that needs to be done for the child to have a year full os success and happiness. If you need any help I am a first grade teacher and have been to hundreds of IEP meetings for children with a variety of needs. From cerebral palsy, shaken baby syndrome, autism, learning disabilities, etc. etc. I am quite familiar with speech therapies, augmentative education, OT, PT, etc. I would be more than happy to give you some advice, suggestions, what ever you need. Send me an email at lrey@cacegypt.org should you want to.
All the best,
Laura
I am glad to get an update. Please know that I am continuing to pray for all of your family. Lots of love
Lana
Genie, So glad to see the photos from suit therapy. Looks like it was well worth it. How great to see her sitting up by herself! Glad you are getting smiles each day. Know you continue to be in our thoughts.
Clara
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