6 months

It has been the longest 6 months of my life. There has been some good progress made, but Kyara is NOT at the level I wish she was at. Today was a good day at therapy. Skylar was with us and she used a Mr. Potato Head to play a game with Kyara. She put some of the body parts in the proper place and some of the body parts in crazy places. Then we used 2 switches (a "yes" switch and a "no" switch) for Kyara to tell us if each body part was in the right spot. For example, Skylar put a tongue where the eyes should be. So we asked Kyara, "Is the tongue in the right spot?" She would then have to press the "no" button to answer us. Kyara did great! She got ALL of the right! I guess that answers the question as to whether she can see or not! At least during this exercise, her vision was good enough to tell what that crazy Mr. Potato Head looked like. Kyara also nodded an appropriate yes to a teacher at the new school we are looking at sending her to next year. This is a new thing. I think she is getting stronger and better head control and maybe nodding will be easier as she can control her head better. I hope so. That would be great.

Kyara is still vocalizing ALOT. At first I was really happy to hear her make noise, and now... not so much. Sometimes I would love some peace and quiet. The vocalizing...communication...screaming...crying...whatever you want to call it, is a little frustrating to deal with day in and day out. I can't imagine what she must be going through inside her head. It must be terrifying and frustrating to have lost her independence. She was always a very independent child. But, being the mother that is trying her best, and unable to figure out how to help, is heartbreaking as well. I have been taught a lesson from Skylar, though. She takes all the screaming and crying in stride. I don't know how she handles it so well. So I asked her, "Does Kyara's crying bother you? It's ok if it does, because it bothers me alot, too." Skylar looked right at me and said "Yes, but that is the only way she knows to talk." Wow. At times I think I lose perspective. Kyara is not crying to get on my nerves. She is not trying to drive me crazy or to tears. She is just trying to communicate with me. I need to take a deep breath and not let it get under my skin.

It has been 6 months since Kyara's anoxic brain injury. 6 months since I heard my daughter's voice, 6 months since I have seen her smile. It has been 6 months since our world got rocked. I miss Kyara more than words can say.

This is a picture of Kyara in the pre-op room 5 minutes before I took her to the surgery room for her to have the dilatation done. This is the last picture of Kyara before the anoxic brain injury. The last picture I have of her smiling...I pray I will have more smiles in the future.

Therapy Pictures!

... Michelle stretching Kyara's fingers.

Kyara riding on a "Lazy Susan"!

I was excited to see Kyara hold herself up and not fall to either side!

Kassey and Skylar came to therapy today, too. They wanted to join the fun. Kassey didn't hold herself up as well!!

The Education Debate

We are getting closer to a new school year and I am trying to decide the best place for Kyara. There is a school close to us (the Joseph Sams School) for children with disabilities, and we are also looking at good old public school with our county school system. We have been thrilled with Skylar and Kyara's schooling at Willis Road Elementary, but after having an evaluation done for Kyara yesterday, it doesn't sound like Kyara will be able to attend that school anymore. The evaluator was suggesting a self-contained classroom at a different school across the county. I am not so sure I am happy with this idea. First off, I think Kyara is stuck in a body that is not working the way she wants it too. I think she needs to be in a regular classroom as much as possible. If she is not going to be in a regular classroom, then I want her in a school that will provide lots of therapy, cognitive development, and specialize in alternative communication. Am I asking for too much? I don't know... If I could have it my way, I would split time, part time in the school that specializes in children with disabilities, and part time in a regular classroom with her peers. She needs to have motivation. She needs to be with friends. She needs to learn. Kyara loved reading and doing math problems. She loved the computer. I want her to have access to these things again.

We are looking into a couple of different therapies for Kyara. One therapy is suit-therapy. Kyara would wear a suit that was designed in Poland and go through physical therapy for 4 hours a day/5 days a week/ for 3 consecutive weeks. The program is offered at a therapy center about an hour from our house. They claim that some kids get 6 months worth of improvement during those 3 weeks. We are also looking into Hyperbaric Chambers, which provide an increased amount of oxygen to the body to help the brain heal. We are also considering hippotherapy (horseback therapy - which is suppose to be great for trunk control) and aquatherapy (therapy in the pool). Unfortunately, none of these therapies are covered by insurance, and for some strange reason, money doesn't grow on trees. So, we are going to have to be selective in which therapies we pursue.

Kyara has been working on tasting foods. We are using a mesh bag to put food in and allow her to chew on it without getting large pieces that she would have a hard time swallowing. We are also spoon feeding her tiny amounts. The thing that is exciting about this is that she is moving her lips and tongue to move the food from her lips into her mouth. This is a great movement to see and shows that she has the capability to learn to eat again! Praise God!! We are also using small dum-dum suckers to encourage lip movements.

Skylar and Kassey have had busy summers. Kassey is learning all kinds of new stuff and loves going down the slide. She has learned to climb ladders, so I have to be on my toes...she like to climb up on Skylar's loft bed! Scary!! Skylar has been going to gymnastic camp, karate, and swimming lessons this past week. Exhausting!!

Gunars is busy with work. I am not sure where to time goes. It seems like there are not enough hours in the day to get everything done. My house is a disaster, my kids don't always get a bath, and I have forgotten how to cook. But, we find time each day to laugh, love, and hug. And, when the day is over, and I am climbing into bed (on sheets that haven't been changed in 3 weeks) I know that my girls and my husband know how much I love them. I can always plan to clean the house....tomorrow.

Summer Time

We had a great time at the Fireworks on the 4th. That morning, I took Skylar and Kassey to the Peachtree City Parade while Gunars stayed at home with Kyara. Then we spent the day together doing...stuff. That night, we met my brother, Allen and sister-in-law, Missy and their crew at Partner's Pizza for dinner, then out to the fireworks. It was a great night. I think the fireworks got Kyara's attention, at least for a while.

Sunday was my mother in-law's birthday. Happy Birthday, Luz Estela! So we went over to her house for lunch. They have an awesome hammock on their back porch and we put Kyara in it when we first got there. She used to LOVE being in the hammock. Once again, the hammock seemed to be a great fit. She was so quiet and content while she was in it. It was nice to have her peaceful for a long period of time. I think the swining, the breeze and the cocoon-like nature of the hammock made her feel very comfortable. Now we have to figure out where to hang ours! I wish I could figure a way to hang on IN the house. I will have to process on that one for a while.

Life here is getting into a bit of a routine. I don't feel as overwhelmed as I used to. One thing I am not getting over is the emptiness in my heart that Kyara used to fill with her laughter, talking, playing, and goofyness. I see pictures of her that are around our house and it tears me up everytime. I am looking for the good side of this, but it is just so darn hard! I pray that God will heal her. We can only work within His will, though, and I know He is using Kyara to bring a difference to so many people's lives. Maybe I am greedy and selfish, but I don't always appreciate the road God has chosen for us to go down. I would prefer the road that we were heading on 6 months ago. I say that now...but is that really true? I am not sure about that either. Having this happen to Kyara has brought me closer to my faith in God, so maybe the road I was on before was not so great. What I do know for sure is that I miss Kyara terribly and I worry about how this will impact Kassey and Skylar. Gunars and I are doing our best to sort through our own emotions, and I hope I am providing the support the girls need, too. I pray God gives us the strength to see each other through.

Happy 4th of July!

I may be a little premature, but I don't know if I will have a chance to get to the computer tomorrow or not, so... Happy 4th!

This week has been busy! There have been ups and downs. I guess that is typical of any family life, though.

Monday, the girls and I headed to Columbus, Ga to see my grandmother and to return her van. We used the BIG conversion van to go to the beach, and I don't know what we would have done wtithout it! By the time we got Kyara's wheelchair and all of her other supplies in the van, we were lucky to be able to squeeze everyone in. There is no way we could have done it in my minivan. So, the conversion van was perfect! I was trying to get to Columbus early so that I could spend the day with the girls and Nannie (Bunny was there visiting, too), but I wasn't able to get out of the house until 11:30. Potty, changing diapers, getting medications together, changing clothes 2-3 times over, etc. really slowed us down. I also wanted to get the van cleaned before we took it back. Did you know conversion vans do NOT fit in car washes. After the third place, I finally said "Forget it!" I vacuumed out all of the sand and dirt, wiped down the inside and decided the tan van was in good shape. I enjoyed the 2 hours we finally got to spend with Nannie, just wish it had been longer.

Tuesday Kyara had therapy. Allen and Missy were sweet enough to watch Skylar and Kassey while Kyara and I went to therapy. We then all went to the pool for a while. The girls had a great time. I think Kyara may have drunk have the pool, I seemed to have a hard time keeping her face out of the water. No harm, no foul, right? I also had a negative experience at Wal-Mart. I was there with Skylar, Kyara, and Kassey. Skylar pushed Kyara in the wheelchair and I had the buggie. I was surprised at the mouth open, eyes bulging, stares we got as we did our shopping. Not just from kids, but from adults, too. After a while, it really started to get on my nerves. Mind you, Kyara was fussing some, but still. And that wasn't even the bad part. While I was leaving I met a lady who also has a child in a wheelchair. We talked as we were heading out to our cars and stopped outside the front entrance (out of the way of the doors) to finish our conversation. While we were there (only about 5 mins) the Wal-Mart "greeter" sent 2 customers out to tell us to move because my child (Kyara) is crying. Then she came out and told me I needed to move because she (Kyara) was crying and not comfortable. WHAT?! I told her that I was Kyara's mother and that I know how to take care of her. But thank you very much for your concern. - Kyara cries. She vocalizes ALOT. It can, to an outsider, seem like she is in pain. I understand that, but I think the "greeter" overstep her position. And to be honest, it ticked me off.

Wednesday, Skylar and I went to Six Flags with Uncle Allen and Curtis (my nephew). We had fun. I am pretty sure we went on every ride that Skylar and Curtis were tall enough for except the train that ran around the park. By the end of the night, I was exhausted. I really enjoy spending that extra time with Skylar, though. I think that she gets lost in the shuffle sometimes. She has been so good about helping me at home...When I am elbow deep in poop, she comes running with the garbage bag to put it all in. My mom (Bunny) stayed with Kyara and Kassey and had a few of her friends come over to the house to help with the girls. Thank you so much, Ms. Martin and Ms. Grove!

Thursday was errand day. No fun there! Just running from place to place.

Today (Friday) Gunars had the day off. We went to Kyara's therapy together and Kyara is doing some tasting. We got the go ahead to try some tasting at home, too, to encourage her to chew and begin trying to eat. That is exciting. Otherwise, we cleaned house and enjoyed being with the girls.

Tomorrow is parade, pizza, and fireworks! I am looking forward to a fun day! Have a safe and happy 4th!