Kyara Dzenis

Kyara Dzenis

Thursday, August 27, 2009

Life is hectic!

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.

Sunday, August 9, 2009

Kyara's Birthday Party

So, the actual birthday..day was a bust. It is both Kyara and my birthday, and it was difficult to want to celebrate anything. I cried alot that day. I didn't realize it was going to be so hard. I kept having memories of her last birthday flash through my head. It was hard to NOT go down memory lane. It was the first day of school, Kyara was in PRe-K. I brought icecream to her class since Kyara could not eat cake. I have a picture of her birthday dinner still up on the refrigerator in the kitchen. She is smiling wide. She was happy. She was 4 and did not have a care in the world... ok. Enough of that now...

Yesterday, Saturday, we had a birthday party at the house. We invited our family to join us for a talent show party and each guest was told to bring a talent for the party. This was Skylar's idea. Although we were more than a bit skeptical about how the party would go, I must say it was FUN! We had the kids play outside for a couple of hours, ate pizza and watermelon, and the adults played some game Matt (my little brother) brought. Once the kids were officially drenched in sweat and it seemed like it was getting a little late, we threw all the kiddos in the tub for a "hose down." We then gathered in the family room and drew names out of a hat to perform talents for the show. We had everything from golfing, dancing, and hula-hooping to belly whistling and ear squeaking. There are more talents than I dare list. It was great fun! I am so glad that we had so many participants. I videotaped it, so I can ensure everyone will be nice to me... or else!!! Hehe! Thank God for family. They stand by you when you are down, and back you up when you are ready to get up again.

Kyara is still plugging along. She has been holding her head up for longer periods of time (20-30 seconds, sometimes) and more often during the day. She is working on head control in therapy and I hope it continues to improve. I am not sure why, but she has stopped going on the potty like she was doing. I don't know what has changed, but she used to "go" everytime I put her on it. Now, she is not using it at all. This is frustrating, I hope we can get it going again.

I am still deciding about the school business. I am keeping my options open for now. We are written up as "homebound" until after she does the suit therapy. We have decided to go ahead with the suit therapy. I am working on getting all of the paperwork, xrays, etc. finalized and we hope to start a week from tomorrow (8/17). It will be a 3 week course in Villa Rica, Ga. The therapy place is a little over an hour from our house, so we will stay at home and travel there everyday.

I will post pictures as soon as I get some. I was too busy playing at the party to take pictures. Hopefully my dad (Pop) will have some good ones!

Thursday, August 6, 2009

Happy 5th Birthday, Kyara!

I wanted to write a great note about a wonderful birthday, but that is not how the day went. Skylar was great today, while I have been a basketcase. I didn't realize today would be so hard. We have had a hard day and I don't have the heart to write on here tonight. I miss Kyara.

Sunday, August 2, 2009

School Decisions Bite the Big One

I don't know what to do about Kyara's schooling. I thought I knew, but now I am completely confused. I had a meeting this past week with the Coweta County School people to discuss eligibility and placement. It was a bit of a reality check. I sat there for 2 hours while they listed all of Kyara's past and present medical problems. Her limitations and weakness were written in black and white right there in front of me. I don't know why this came as a shock to me. For the last 6 months, I have been with her, talking to doctors, discussing her situation with therapist, etc, but during this meeting, it all became real. I really have to choose where to place my child. The best place for Kyara may REALLY be in a profound classroom (a special education classroom for profoundly disabled children). This would mean Kyara would not be going back to her old school. Maybe I am selfish, but I WANT Kyara back at Willis Road, where I know people and where the teachers, staff, and students know her. But if that is not the right place for her, if she is not going to get the education she needs there, then I need to be open to the other school. As one of the Coweta County people said to me (which really hit me hard): This is not the same Kyara that they knew at Willis Road. Well, no, she is not the same. But she is still Kyara. And I don't know that she not the same on the inside. My fear is that she will be placed in this profound classroom and be pushed aside to stare out the window all day. I am told this will not happen, but it worries me. I also wonder... Are they afraid of Kyara? When she said, "This is not the same Kyara..." she said she was concerned about the other students reaction to Kyara. I have found that it is the ADULTS, not the kids (especially the younger kids) that have a hard time accepting Kyara. Kids want to ask questions, they want to know why Kyara is like this now. Many adults seem to stare or immediately shift their gaze away like they may catch whatever it is Kyara has. I, for one, am more appreciative when someone asks us what's wrong and they speak to Kyara, rather than run away like we have the plague.

Ok, so I am not sure what all that was about, but... moving on...

We are still looking into the suit therapy for Kyara. I think we are going to go for it. It is pricey, but NOW is the time to push all the therapy we can. Kyara will go for 3 weeks and it is 4 hours a day and 5 days a week. The place that does the therapy (Kidz in Motion) is in Villa Rica, so I will be travelling there and home everyday. We are going to delay her starting school until she has completed the therapy. In the mean time, I have agreed to do a homebound IEP (Individualized Education Plan) for Kyara so that she will not be considered absent while in therapy.

Kyara's birthday is just a couple of days away, and I pray that we will make it through the day with laughter and not a lot of tears. She will be 5, and I am amazed by how fast it has gone by. She has endured so much in her 5 years here on earth, it doesn't seem right. It is about time for something to go right for her. Maybe this suit therapy will help jump start her recovery. I am praying to know the right decision for Kyara.