First Days of School

Kassey loves to put on Skylar's shoes. This morning she found Skylar's soccer bag and decided to give it a go! I promise, I had nothing to do with it. She put the shinguards and cleats on by herself. She reminds me so much of Skylar and Kyara at this same age! I think Kassey looks alot like Skylar but has Kyara's personality!

Kyara getting a lift onto the school bus.

We were waiting for the bus in the pitch dark. That yellow rectangle close to the back of the mailbox is the school bus top coming toward us. By the way...Check out Kyara's new chair!! Hers is finally in. She is styling in the hot pink!!

Skylar and Kyara before Kyara's first day of school. I had to put Kyara's sweater on backwards because I forgot to put it on her before buckling her in the chair. It is way too much work to get the buckles all undone when we were running short on time. I know... Slacker Mom!

Kyara has finally begun school. She went on Monday morning. Rode the bus and everything! I can't believe the bus comes so early. It was a mad rush to get her awake, dressed, medicines in, buckled in the chair and out the door by 7:10. I admit had a couple of tears when they pulled her up on the bus and said "Ok, Mom, we will see you later." Wait a minute! It was relief and anguish at the same time.

Her first day went well. I went in at 11:30 to get her for therapy and Ms. Malcolm and Ms. Kim, Kyara's teachers, said she did great! Yeah! So we headed off to therapy feeling good about school. On Tuesday, Kyara had therapy first, then Kassey and I took her to school. We were suppose to be there by 11:30, but we were late. GREAT :( Our second day at school and we are already late. Not a good way to start. Oh well. What can you do? So we dropped Kyara off and headed to the mechanic. (Oh, did I fail to mention that my steering wheel was not working right when we left therapy? Right, right, right. It only took 3 tries to get out of the parking space and 2-3 tries to get out of the parking lot. Then suddenly, the steering wheel worked again. I was having to put all of my strength and body weight into trying to turn the steering wheel. Scary!)

My mom was nice enough to come rescue us from the mechanic and take us home. Back to Kyara... She finally got home and I got a note from her teacher out of her bookbag. It read..."The honeymoon is over." OH NO! Hahaha! Kyara didn't have such a good day. I couldn't help but laugh a little. I wish it had been a better day, but I know she needs time to adjust. She cried some last year, before her accident, too. I think Kyara has some separation anxiety and this is not new. We will see how she does in the coming weeks.

Today Kyara didn't go to school. Yes, she is scheduled to go, but we had doctor appointments at Scottish Rite (the Atlanta hospital that she was in from April to June) and couldn't reschedule them for a close date. The doctor appointments went well. Just check ups. One thing we discussed was doing more botox on her arms. The rehab doctors agreed and November 18th we will go back and have botox on her finger flexors, her left bicep and her pecs (chest muscles, they are pulling her shoulders forward). I hope this will give her some relief and better range of motion.

So to recap, Kyara has been enrolled in school since last Monday. In those 8 days, she has only gone 2, and we were tardy one of those. I don't think I am winning any Mommy of the Year awards!! :) After the pneumonia wiped out last week, we are still trying to get on track. We will get it sorted out, and Kyara will be the model of good attendance!

School Delay

So the IEP is done. I think it went pretty well. Kyara is scheduled to go to school Monday and Friday mornings, Tuesday and Thursday afternoons, and all day Wednesday. Wednesday is therapy day at school, so I am glad she will be there all day. On the other days, she will receive private therapy during the times she is not in school. We will still be busy running from place to place, but whatever is best for her, I am all for. I would drive to the moon everyday if that would help her improve. One thing that I am not as pleased about with the IEP is that Kyara is not scheduled to go into a regular education kindergarten classroom. I feel this is very important for Kyara. I am still running on the belief that Kyara is in there and not able to let us know that she understands everything happening around her. Believing this means that she SHOULD be around her regular peers to get that interaction. I also believe Kyara will improve. I don't want her to be an "outsider" when she is able to enter a regular classroom down the road. I believe that if she is a part of the classroom now, while the kids are still in kindergarten, then it will be more likely for her to be accepted as a regular student in the future. I understand the school's argument of "give her time to adjust to going to school again," and "we want her to be an active participant, not just a passive observer." But, I disagree. I can only think of what is best for Kyara, and I think that by first being a "passive observer" she is more likely to become an "active participant." I know Kyara and I know she needs a challenge, she needs pushing, and she NEEDS to be with her "normal" peers as much as possible. I want her to see that there is more than just the profound class at Poplar Road. We are not giving up on her and Kyara needs to see that. Whew, I'll get off my soapbox now.

Kyara was scheduled to start school tomorrow, Tuesday, but that is going to be delayed. The problems started last Thursday. Kyara started coughing some and spitting up little chunks of thick white/yellow/greenish mucus. No fever, no other symptoms. So, I took her to the doctor on Friday just to make sure nothing was going on. Turns out she has an ear infection. We left with a prescription for Amoxicillin and the thought that it would be getting better. Unfortunately, over the weekend, Kyara got worse and worse. Yesterday, Sunday, Gunars had to wake her up at 11:00 and she was very lethargic the rest of the day. Last night she started running a fever. This morning it was up to 103.5. Ok, doctors, here we come. Today they got chest x-rays and found pneumonia. So, long story not so short, Kyara will not be going to school tomorrow. We have a new antibiotic and I hope it will help her feel better soon. On the upside, Kyara has not cried much at all the last two days. On the downside, Kyara has been too sick to cry the past two days.

We have also found a new speech therapist in Peachtree City and so far, so good. I like what she is doing with Kyara. She seems to really care about her and working on her communication skills.

Suit Therapy is Over...Now for School

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.