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.

2 Weeks In...

Where to start... sometimes I am not sure. I suppose the easiest thing is to start where the last entry leaves off. That makes sense...right? But sometimes, one is too excited or their heart is too full to begin so far back. So... I am going to start with the exciting news first.

KYARA SMILED A REAL SMILE ON SATURDAY!!!! Thank you, God!! This smile filled my heart like I can't explain. It was a real smile, not one that I was questioning "was is or wasn't it." It was a true smile. If only I could have gotten a picture of it! Here is the cruel part of not capturing the smile with a picture... she has not smiled like that since. Although I felt like I would never be able to forget what it looked like, as if the smile was etched on the back of my eyeballs, it is slowly fading away. I know I saw teeth, but did I see dimples? I am not sure. I can't see it in my mind as clearly anymore. But, I know it was a beautiful smile and if she can do it once, she will be able to do it again. I will wait for that next smile and ALWAYS have my camera ready! It is amazing, just when I start to feel like things are not progressing, God provides something to say "Keep positive, keep faithful, and keep loving."

Since Kyara has started the suit therapy, she has begun to move her right arm more and tonight she moved her right leg to bend her knee while lying in Gunars' lap. She seems to have a bit more control in her trunk and is holding her head up more often. I see improvements everyday, so I am thankful that we decided to go forward with the suit therapy.

Gunars and I took a nice trip down to Gainesville, Florida for alumni weekend for Gator Soccer. We got to see the Gators play a couple of soccer games and see the Florida vs. Tennessee game. It is great to be a Gator! We stayed with Gunars' old roommates from college and had a great time talking about "the old days!" It was also great to catch up with my old teammates. They are so awesome... the alumni had a tailgate fundraiser to help Kyara's medical costs and we GREATLY appreciate the donations. I am hoping to get her a special tricycle with the money for Christmas. I am told that it takes about 3 months to have one built, so I need to get on that!!

Skylar has lost her first top front tooth. She yanked it out by herself yesterday, and the silly toothfairy got caught up in traffic last night and didn't make it here before she got up. Hopefully the toothfairy will get on the ball tonight!

Kassey is as crazy-fun and stubborn as they get. She looks up to Skylar and wants so much to be like her big sister. Lately I have been catching her in Skylar's bed. This wouldn't be such a big deal, except Skylar's bed is 6 feet off the ground (she has a loft bed)! She gives lots of kisses to Kyara and takes good care of her... rubbing her legs with lotion, showing her boo-boos, and letting me know when Kyara is crying. She loves both of her sisters very much.

We have many things to be thankful for. I am going to continue to pray for more success with the suit therapy and for help knowing what to do about schooling for Kyara. Thank you for your prayers, comments, and best wishes.

Suit Therapy Begins!!

Kyara started suit therapy yesterday. She is also doing some hippotherapy (riding on a horse) at the same time. Our computer is sick (crazy viruses... how is it possible for a nonliving thing to get a virus???) so I am working on Gunars' laptop. I hate writing on it, so I am going to keep this short. Thank you all for keeping up with Kyara. She means the world to us, and although I am not posting as much, we are still in need of God's grace to help Kyara recover. I pray this suit therapy is going to get us on a path towards recovering some of her strength and function.

The Stander is IN!!

Kyara got her stander today and even though it is not perfect, she was very content in it for about 30-45 minutes tonight! That is a LONG time for her to be content in any position! YEAH!!!

I also got her stroller today. I ordered it last week after lots of researching and calling size therapists to make sure it would be a good fit for her. Well, I was totally excited about getting it. I spent 45 minutes putting the thing together (with Kassey's "help") and Kyara is too big for it. I am crushed. I really liked the stroller, but I don't think its a good idea to keep it if she will only be able to fit in it for 6 months. What a waste. I guess I will be sending it back. Gotta find out shipping costs. Yuck!

Kyara is also borrowing a Pace Gait Trainer from her therapist. I will post a picture of it soon. WE are trying to encourage her to move her legs to walk, but it will take time.

Thank you for the suggestions on the dry skin. I am going to try them and see what will work. Our doctor also suggested anti-fungal soap. I don't know what that is, but I guess I will find out.

Have a wonderful Labor Day Weekend!

Ready, Set,...Wait

We were mentally all set to start suit therapy next week, but unfortunately, we are going to have to postpone one week. We will start on Sept. 14 instead of Sept. 7. Really, this is not that big of a deal. It gives insurance a little more time to get their act together and approve at least part of the therapy.

Kyara is still pushing along. Thank you, Mrs. Higley, for the advice about the Caldesenne (sp?) Medicated Powder. It has worked wonders for Kyara's nasty yeast rash in the folds of her neck. Although they are not gone yet, they look a hundred times better than they did! Now I have to figure out what to do with the dry, red, patchy, flakey scalp. Any ideas there are greatly apprecited. I have tried T-Gel Shampoo and baby oil then combing it out. So far, these have not worked. IF you have suggestions, I am open to them!

We went to Villa Rica this morning for a pt evaluation for Kyara. It went well. The therapist are very nice. I am really looking forward to getting started with this suit therapy and see what comes of it. I pray for good results!

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.

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!

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.

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.

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!

Fun in the Sun

We are having a great time at the beach. So far, it is going great. I am really sad that we will be leaving tomorrow. Kyara has been hanging out in a beach wheelchair that we rented and in a raft while in the ocean. She seems to be calmed by the "motion of the ocean." She also has enjoyed the pool. Skylar and Kassey have been great and love the pool, sand, and sun. Their cousins, aunts, uncles, and of course Bunny and Pop are with us and we are having a great time! I'll post more later...now we are off to the beach!

Recovered Just In Time!

I am home from the hospital. I ended up staying until Thursday. WIsh I could say I got some good rest, but that is difficult when the nurses come in to take blood every 4 hours! And they couldn't even draw from my IV! I am sure Kyara would have had a good laugh at my expense. I remember how much she hated to have the tape pulled off to take the IVs out. Now I know what she would complain about! That tape HURTS!

So Thursday Kyara had a OT appointment. It went pretty well, she seems to be trying to communicate with the switch again and the OT, Michelle is really good at encouraging Kyara. I like the way she lets Kyara's body tell her what she wants. Friday was full of more appointments. We had orthodics (which are rubbing her arms raw, so he is going to make completely new ones on Tuesday) and speech therapy. I think the speech therapist talks too much. I think Kyara agrees. Michelle, the OT, did a cotreat with the speech therapist on Friday and at one point Kyara was very upset. Michelle asked her if the talking was annoying her, and Kyara hit her button to say "Yes!" Well, that would be a Kyara response, so I tried to hide my smile and giggle when she responded, but I don't know how successful I was.

Today Gunars and I took the girls on a walk. We found a nature trail close to our house and decided to try it out. It was quite a humerous sight... I had Kassey in the stroller and Gunars was pushing Kyara in the wheelchair. The trail started out so nice and wide, it was covered in bark and had logs on the side to edge the path. After awhile the logs on the side disappeared, but the path was still easy to navigate. Suddenly the nice path ended and it was like a "well-worn" path in the woods. There were huge tree roots and boulders in the middle of the narrow path. But we kept going. Poor Kyara's head was flopping around with the bumps, but she did not complain at all, in fact, she seemed to really enjoy the hike. It got so crazy at one point I had to help Gunars lift the wheelchair, with Kyara in it, a couple of boulders that made "steps" in the path. Then I went back for Kassey. What an adventure! We loved it and can't wait to go again. There was a creek that the path followed and an area that you can wade out in it. Skylar liked the hike and Kassey laughed most of the time, so I think it was a hit! We just need an off-road wheelchair, and there will be no stopping us!

So tomorrow we are beginning our next new adventure. THE BEACH. Each year my parents, my brothers and their families, and Gunars, the girls, and I rent a place at the beach for a week. It is something we look forward to all year. In fact, last year, when we were packing to leave the beach, we were already counting the days until we could come back. We are sending Skylar and Kassey on down with my parents and then Gunars and I will follow on Tuesday night with Kyara. She and I have doctor appointments on Monday and Tuesday, so we figure it is best to keep those and go down later. I am nervous as all get-out about the trip, I pray Kyara does ok in the car. I think once we get down there, it will be fine. For me, its the drive. Kyara is not exactly the best traveler right now. The crying can get a bit much, but I hope going later at night will help with this. There is a hospital close to us, so if anything should happen, we know where to go for help. I think this will be a good trip for us all. I pray for safe travels for everyone on the road this summer!

By the way, I wanted to mention....
There was a little girls whose family was at the RMH both times we were there. In fact, they have been there since September of 2008 waiting for a heart transplant. Anyway, Lindsay got her heart last week and although she has had some difficulties, she is on her way to healing. PRAISE GOD! He knows the plan He has for us!

First Week Back

When Kyara is being moved she is very calm. We go for walks every day in her wheel chair. We stretch her every day. These are things she seems to enjoy and doesn't fuss. We also put her in a swimming pool over the weekend and she was calm and relaxed as well. She has always liked being in the water. Otherwise Kyara is fussing. It's like a soft cry. Skylar and Kassey are taking all of this in stride.

In other news, I'm currently in the hospital with a kidney infection. I thought I had a pulled muscle from lifting Kyara up so much, but when the high fevers kicked in my mom made me go to the Urgent Care. Long story short, I'm in the hospital and will most likely be here until Wednesday.

To end in a positive note, Kyara is controlling her head up better. It doesn't flop all over the place. She still can't hold it up for long periods of time, but she is definitely controlling it better and getting stronger.

Kyara's Home

Kyara came home on Monday. We are all excited, exhausted, overwhelmed, and thankful to be together. On Monday, my brother, Allen, came up to help me get Kyara out of the room and home. She had a LOT of stuff! Well, I was told she would be discharged between 10-11 am. I told Allen to be there at 11:30, I know how hospitals work. I figured we would get out sometime after 12pm. (Allen guessed, 1:30...he wins! :( ) Well, at 5:30 pm, 2 xrays, and a NG Tube (which is 30 cm from the tip of her nose to the end of the NG tube in her stomach) placement later, we were finally on our way. Could have been worse...

Anyway, I am exhausted and still trying to cope with being home. This has been a very difficult transition for me. Kyara is "crying" "moaning" "fussing" whatever you want to call it, most of the time. I have found that walks in the neighborhood calm her, but what about the other 14 hours of the day that she is awake?? Kyara begins out patient therapy tomorrow, so I am praying that it will go well. I pray that the crying will lessen so that I can keep my sanity. I am so thankful for my mother-in-law and my mom, who have been helping at the house SO much.
My mom, Bunny, is splitting time here and in Columbus with my Nanny (Bunny's mom).

Speaking of which, Papa's funeral was beautiful. I really appreciated the kind words that were spoken about him. My brother, Matt, got up and spoke at the funeral and it was more touching than words can say. He was great...I was extremely proud of him. He touched on the special memories we have of Papa, I think he could have gone on for hours. Papa was an amazing man.

Good News and Bad News

Which way should I start... Well, I am going to give the bad news and end on a happy note.

My grandfather (Bunny's dad) passed away today. He was an amazing man. He will be greatly missed. I love you, Papa!

The good news... Kyara has had another salivagram and a swallow study in the past two days. She did good on both! Yea! Sitting up really helped! Today she was given a few bites of applesauce in the study. Although she aspirated a tiny amount, she did great with most of it. The speech therapist feels it is safe to begin giving her more tastes (applesauce, yogurt, pudding, etc) to help her relearn to eat!!! YEA!! The only question now is her stomach and how it empties. We will cross that bridge as we get to it, though.

I also met with the communications person today and she was very helpful. We are purchasing a few devices and books to have at home. The books explain ways to properly use the switches and devices to best help Kyara. This will help give Kyara a voice again. She has been doing better and better at hitting a big button to communicate her wants.

So, although I am very sad Papa's passing, I know he is looking down on us and smiling from heaven. He is at peace and that is very comforting to me. And today was a good day from Kyara's stand point.

Release Date Postponed

Kyara's new discharge date is for Monday, June 8th. She is working on pressing a switch to communicate, so we are meeting with a communication therapist before coming home.

My grandfather had a stroke this week, so we have been hectic trying to keep someone at both hospitals. This is a crazy time for all of us, I hope you are having a great summer so far. I enjoy having Skylar at home more. Now, if I can only get home with her more, that will be great!

Discharge Date Set...

June 5th. A week from today. Wow. How should I feel about this one? It has been so long! I feel prepared to take care of Kyara. I am ready for us all to be under one roof again. I am nervous about how each day is going to go. I am disappointed that she is leaving and not going to get the intense therapy each day. I am excited to be able to do my own thing with her. I am angry that she has not improved more during her time at the hospital, but I am hopeful that being at home will help stimulate her and help with her recovery. I am concerned that by sending her home, people are writing her off. I have so many different emotions going, I don't know how to descibe them all. I guess we will just wait and see. Hasn't that been the rule since January? It is only appropriate that we continue... waiting. See what God has in store for us next.

Good news... Kyara has pooped some on the potty!! 3 days in a row she has gone on the potty. I think we are catching her at the right time, she doesn't go everytime we put her on, but she has gone on the potty 3 times!! YEA!! It is a start! Today she pressed buttons on command to turn a light machine on and off.

She also got the loaner chair that we will take home until her wheelchair is ready (could be months!) The loaner chair is HUGE and doesn't fit her, so I hope her custom chair will be ready soon.

This week we will be crazy busy get ready for Kyara to come home. Home-health is bringing her supplies over, including a hospital bed, sometime this week. I am not sure how we are going to fit everything in her bedroom. She used to share with Skylar and I am trying to figure out how we are going to work all of this. The girls' bedrooms are small (10x10), I think I need to empty the room out until they get the hospital bed in it and then see how much room we have left for a dresser and stuff. I think Skylar and Kassey are going to be sharing a room now, it just makes more sense. I know it will be ok...

Happy Memorial Day!

I want to thank all of those who serve(d) for our country! Tomorrow is a great day to celebrate the sacrifice that has been made for our freedom. Thank you!

Kyara is doing well. She continues to become more aware of her environment and has moments that she appears to be answering questions with small head nods or shakes of her head. They seem to be appropriae to answers of "yes/no" questions, but we are not really sure. It is so hard to tell what you are seeing. I like to think that these "conincidences" are coming more frequently and consistently and that I will soon be able to say..."without a doubt, she is responding!" This week she has had serial casting done on her right arm. She was ok with the first cast which stopped at her wrist. The more recent cast comes down into her hand and she has not been so thrilled with this one. It will come off on Tuesday, and they will start casting the left arm. This is suppose to help with her range of motion in her elbows, wrists, and fingers. I hope it works. Right now she is still pulling her left arm up. She pulls her hand up to her chin at times. In fact the other day, I thought she was sucking on her fingers. Oh, that must be comforting to her... well, then she started to cry. Don't you know, she had clamped down on her pinky finger with her teeth! So much for comforting!

In speech, Kyara is working on cognitive skills and on moving her tongue. They are having her click her tongue and asking her to stick her tongue out. The speech therapist uses a sucker to entice Kyara and to give her some tastes. Speaking of taste, they wanted to start trying to feed Kyara by mouth a little, so the doctors ordered a saliva test to make sure she was swallowing her saliva and that it was not going into her lungs before allowing the therapist to give her any food. They did the test on Thursday. We got results on Friday. Well, Kyara did not pass the test. Her saliva ended up in her lungs. I feel it was an unfair test because she was flat on her back during and after the test. Well, in reality, she is almost NEVER flat on her back. Because of her gastric pullup, we always have her propped up to some degree. Also, she is not going to be fed lying down, so I think the test was unfair in her situation. Of course, I don't want them to do anything that would be dangerous for Kyara, but I would be interested to see if the results were different if she was sitting up instead of lying flat. My understanding is that we will do some more tests this week, so please pray for success.

Waiting was the subject in church this morning. Seems appropriate. I think I have heard enough about waiting in the past 5 months to drive me crazy. My job and my goal is to wait patiently for God to decided the perfect time to allow Kyara to come out. It says in the bible that Jesus tells his disciples something along the lines of.... it is not for you to know when, only that it will happen.~ I am working on releasing my frustrations, anger, and concern, and putting my trust in God and His promise.

Busy Weekend

I know, I have been falling down on the job of the blog writer. To be honest, I haven't had the interest in writing lately, but I am going to get back into it. I think it is a good release for me as well as helps to keep everyone informed of Kyara's progress. I have also had times where I have looked back at it to let doctors know when she had a procedure done. So it is useful in many ways.



Friday Kyara had botox done in her elbows and forearm to help with her fingers. Since getting the baclofen pump her legs have been much looser, but her arms are tighter, so I hope the botox helps. They are goingt to start serial casting her elbows this week, too. This will give a constant stretch to her arms and hopefully help straighten them back out.

Kyara seems to be becoming more and more aware of her environment and she is getting stronger. After a week in the bed not allowed to be moved, she was VERY weak. We are seeing improvements in her strength each day, though. She still is not as strong as she appeared before the pump, but we are told that she was using alot of tone to move then, and she can't do that now. So, it is now up to her and her muscles to do purposefull movements.

Yesterday she was kicking her leg up to press a button that had Skylar's voice on it. Saturday, Kassey, Skylar, and I went to the hospital to eat dinner with Gunars and Kyara. She seemed to really respond to her sisters and lifted her head up a couple of times to look at them and look around. We are praying these things build on each other and Kyara continues to get stronger and stronger.

One last note: HAPPY 7TH BIRTHDAY, SKYLAR!!!!! I can't believe she is already 7! Where did the time go? We are so very proud of her. She is a fantastic daughter and biggest sister!

Back in the Gym Again

It is Thursday and we are finally back in the gym again. This is good for all of us. I like seeing Kyara working in the gym and getting out of the room. I think the walls start to close down on us when we stay in the room for too long. With that being said, I am working on getting myself better, so I have been letting my parents and Luz Estela stay with Kyara more. I am trying to get more rest, and revive my engine for the next haul before we get to take Kyara home.

The rehab doctors have decided to botox Kyara's forearms, elbows, and flexors of her fingers tomorrow. She is still very tight, and the baclofen pump is not having the effect we had hoped for in the arm area. Her legs are looking pretty good. I noticed more stiffness in her left leg today when I tried to bend her knees, but they are still adjusting the rate of the pump.

Today Kyara had a good day in therapy. She was "kicking" a ball on command. She would kick her leg out 2-3 inches. She did better with her left leg than her right, but it was still good. She worked on head control and rolling over. Both of these things are more difficult now for a number of reasons (I am guessing, but they make sense to me!) First off, she has been in bed, unable to be moved for a week. Also, the baclofen pump takes away alot of her tone. She had been using the tone to assist her movements, so with the tone gone, it just shows how weak her muscles really are. Time for bodybuilding! In speech today she used to the switch button to let the therapist know she had a dirty diaper. Lindsay had a big button that would say "yes" when you push it. She asked Kyara a number of questions because Kyara was fussy and she was trying to figure out what was wrong. After a few questions with no response, Bunny said "Ask about her diaper." So Lindsay asked, and Kyara pressed the button. Sure enough, she had pooped and peed. So yea! She was letting them know what was wrong.

Overall, I am glad to get back into rehab. I appreciate everyone's concern for Kyara and for the rest of our family. We are very fortunate to have the love and support of so many. It has really meant alot, especially for the last week. I praise God for the progress Kyara has made and look forward to seeing more steps in the positive direction.

Monday, and Still No Therapy

It is Monday, and they had said that she could resume therapy today, but as my title suggest, it did not happen. The neurosurgeon came in this morning and was surprised that she did not have bedside therapy this weekend. He said to get bedside therapy today and tomorrow and then she could go back to the gym on Wednesday. Of course, by the time orders got in, she didn't get any therapy today because she was not scheduled. Now I am told they will not get her back in the gym until Thursday. I am VERY frustrated with this.

She had the dressing on her incisions removed today. Praise God they look good. She has 14 staples in her abdomen and 5 in her back. The incision sights are clean and look great, though. I don't knwo when they are going to remove the staples, but I guess they will let me know when its time.

Kyara has been up and down lately. The doctors are still adjusting the baclofen amounts while they decreased most of her other medications. She is off the methadone and valium, the clonodine patch is off, and there is one or two other meds that she is off, too. Klonopin is the next drug to go off, although, the rehab doc on service now is talking about increasing it because it is suppose to help with agitation. And talk about agitation, when Kyara is upset, she has some lungs on her!

I am not fairing as well lately. I am not sure why, but I am feeling much more heartbroken and depressed lately than I have in a while. This weekend has been tough with it being Mother's Day and seeing my family and everything. I am trying my best to play with Skylar and Kassey and stay positive in all respects, but I am having a hard time with it. In fact, I had to call my parents last night to relieve me at the hospital because I could not get myself together. I don't want to have negative vibes around Kyara, so my dad came up and stayed and I went home and had Gunars just hold me. I think having Kyara just lying in the bed again has really had an effect on me. I am tired, and I am trying to take care of myself. I am praying that God will comfort us and heal Kyara. I am trying to let go and let God take over, but I am having a VERY hard time with that. How do you just hand it over and not worry? I know that is what I should be doing, but I don't know how.

Happy Mother's Day!!!

To all the mothers out there, Happy Mother's Day!!! It is a day for rejoicing in the beauty of being a mother! Have a wonderful day!

Kyara is doing better with the baclofen. Still not perfect in terms of tone, but better. Legs are a ton better and arms are getting there. She was moving and opening and closing her fingers tonight, so that is good signs. Since she has been bed ridden since Wednesday, Kyara is starting to swell some. Her face is definetely swollen and her feet are tight, like they have a lot of fluid pooling in them. The doctors assure me that when she gets up on Monday and starts moving again, this issue will start to resolve. She is also still crying and fussing a good bit during the day. This can be seen in two ways. Either this is just the way it is, or she is waking up and trying to communicate with us. I pray that it is that she is trying to communicate and this is a phase she is still going through. The doctor said this is his "hope." His hope? What is that suppose to mean? How do I take that? I hope to win the lottery. That doesn't mean my chances are very good. I am going to pray that Kyara is trying to communicate and that this is a step towards her waking up more. I think praying is better than hoping.

I had a nice dinner at my parents' house tonight with my brothers and their families, my parents, and my Nannie and Papa (Bunny's mom and dad). It was once again a very bittersweet time for me. I loved seeing all the cousins out playing together, then would cry realizing that one cousin was missing. Gunars was not eating with us, Kyara was not there, and so the night felt wrong to me. I know that Skylar had a good time, though. She told me last night that she is sometimes very lonely. Can I blame her? She said she can't wait for Kyara to come home so she will have someone to play with. Oh, my heart sank. I tried to explain that Kyara is still recovering and that when she comes home, she is not going to be like she used to be. How do you explain to a 6 year old? I don't know. I have had a tough weekend at home. Gunars has been spending the nights at the hospital and I just miss him so much. Although we see each other a little here, a little there, it is not enough.

Ok, enough complaining. Get it together, girl! There is much to be thankful for. I have a wonderful husband, 2 healthy, happy girls, Kyara is responding to the baclofen better each day, I have the love and support of my family and friends. God is watching over us, and leading us towards brighter days.

Day After Surgery

I wrote a long post about 2 hours ago and for some reason, I was not able to post it. Since it didn't save it, I will try to summarize. Of course the other one was brilliant (haha), so this one will be a sorry replacement. :)

Last night my mom stayed with Kyara so I could get home to a doctor's appointment. Everything is fine, just need some of my own medication. Dealing with everything that has gone on here has really worn on my nerves and I am finding I have a hard time controlling my moods. When we are in therapy and Kyara does something new or follows commands, then I am on cloud nine, when we are back in the room alone, at night when she is crying and I can't calm her, or even on the drive home when my mind wanders I can get into a very low sad state. I am working on staying positive and trying to block the negative thoughts that butt their way in.

Kyara slept most of the night last night and half the day today. She is still recovering from the baclofen pump surgery and she will be on bed rest until Monday. No therapies. I don't understand why she can't have at least speech come in. She doesn't have to move for speech. Well, I am going to ask about that in the morning. So far, she seems to be recovering well. We are still on the watch for infection, and please pray that she doesn't get one. That would mean surgery to remove the pump and then not being able to replace it for MONTHS! I can already tell a difference in her legs when I changed her pants. Much easier. Her arms and hands are still very tight, though, so the doctors still have work to do with the meds. As the doctors go up on the baclofen, we are coming down on some of the other meds: valium and dantrium. She also had her last dose of methadone tonight! YEA! I am glad we are able to start taking some of these drugs off! I am praying that Kyara has a peaceful night tonight and a good day tomorrow.

I was home most of the day today. Since Kyara was sleeping soundly, and my mom was with her, I took the opprotunity to stay with Kassey and Skylar. Kassey was actually sick this morning, so I ended up taking her to the doctors. She liked it much better today than last week: no shots! After three visits to the pharmacy, they finally had her presciption at 5:00 this afternoon. I was also able to get Skylar off the bus today. God, I have missed doing that! Thank you for the chance today. I think Skylar was pleasantly surprised, too. She asked if I would be there tomorrow when she got off the bus. "Sorry, Sweetie, but no." :( I took Skylar to karate and ate dinner with the girls, Gunars and Luz Estela before heading back to the hospital tonight. My mom was a trooper staying all day for me. I think she enjoyed the quiet time to read while Kyara was sleeping.

So, tonight I am thanking God for the blessings He gave me today. I was able to spend most of the day with Kassey and Skylar. I was able to step back into the real world, for a day and do the things I would have normally done. It is amazing how much I have missed these little things. Getting Skylar off the bus, taking Kassey to the doctor, doing the "Mom" things. I am praising God for the change in Kyara's legs and I am asking Him to lay His hands on Kyara. To allow her brain to make the connections that will bring her back to us. I pray He comforts us as we push forward each day, that we can see His miracles and take the time to notice the blessings He gives us each day.

Surgery is Over

Kyara's baclofen pump surgery is done. She is back in the room with me and snoozing. This is good, because she did not sleep last night. I guess she was as nervous as I was! We were up together from 2:45 am on. Everything went well with the surgery, so now we have to wait for the recovery to take place and for the doctors to find the right dose of medication. Pray it will go smoothly and quickly!

She's waking up...not a happy camper! :(

Baclofen Pump Surgery

Well, I have been waiting and talking, talking and waiting for this day to arrive. Tomorrow Kyara goes in at 9am for her baclofen pump surgery. After all of the wanting and waiting, I am now TERRIFIED of another surgery. I am praying that the surgery AND the RECOVERY will go smoothly. Kyara has not been known in the past to recovery quickly from surgeries and I pray that this time she will beat those odds! At this point, I am nervous about our decision to put her through this surgery. I saw the trial and how much more relaxed she was, but this is an elective procedure. If things don't go well, will I be able to live with myself? I do know that she is uncomfortable alot of the time, and that the best thing for her is to get the pump. So - I will be praying hard tonight and in the morning that God will watch over my little one and hold her tight tomorrow. He knows what is in her best interest and I thank Him each and every day.

I am rambling again. I hate feeling like I am fighting with myself over Kyara's care, but who wouldn't. You have to weigh the pros and the cons. The risks and the benefits. I pray that this time the benefits will win out. That is what is suppose to happen, after all.

Today Kyara had a decent day in therapy. She worked some more on rolling and holding her head up. She also had some testing done. The Coma Recovery Scale is done each Tuesday to see if she is improving each week. She has certain tasks that they need for her to do to get points on the test. She improved this week by 3 points! Yea! Sadly, she is still considered by the test to be in a vegetative state. I don't know if I agree with that. I don't think she is wide awake and alert to her environment all of the time, but I don't think she is vegetative either. She is beginning to respond to commands better (not great all the time, but better), she is localizing touch, she is fixating on objects, and she is beginning to have more puposeful movements. What I have to remember is that the test is like a snapshot picture taken once a week. She has done things in therapy sessions that she did not do during "test time", and these things cannot be counted (even though the therapist doing the test are the same ones that have seen her do tasks during therapy session). This is VERY frustrating to me. I wonder how Kyara will do next week and the week after, after the baclofen pump is in and they have a chance to get the medications right. I hope she will have better motor responses. Either way, in the long run, I know she is improving each week and the score is still showing that. So, what more can you say? Keep working hard, Kyara.

I met a couple of other families who have children here in the rehab unit. The families are all very nice and the kids here are amazing. The kids range from burn victims, car accident survivors, a car surfing survivor, ATV accident, and anoxic brain injuries. The improvements that the kids make is astounding. I can't believe my eyes. God works miracles here everyday!

Found It!!!

The camera has been found! Yea! That is a load off! I knew I put it someplace "safe." And it was certainly safe, I couldn't even find it anymore! It was actually at the hospital in a drawer. Lately, things are out of sight, out of mind for me. But now it is found and I can exhale a deep sigh of relief.

Kyara had a good weekend with Gunars. The girls and I went up and visited some on Saturday, and then I went back up after Skylar's soccer game on Sunday and spent the night and most of the day today with her. She is still working on rolling, pressing switches to play music, and the "yes"/"no" cards. Today she appeared to "smile" on command. The speech therapist asked her to smile at me, and she kinda got one side up a little. Not enough to show her sweet dimples, but enough to brighten her face. Lindsay, the speech therapist, has told me that smiling on command is a difficult feat for kids. They usually will smile because of happiness first. Well, I haven't seen much of that. I pray it will change after she gets the Baclofen pump and is more comfortable. I also have a fear that I am putting too much stock in the Baclofen pump. Am I building it up to be the miracle drug? And how will I handle it if it doesn't solve Kyara's muscle tone and crying issues? I guess being aware of these issues is the best course of action. I just remember how excited I was to finally be going home, and the let down I had when Kyara had a difficult time with the transition.

Kyara has been wowing some of the Physical Therapists by bending at the hip and knee and shifting her weight to help with rolling. Of course, she still needs quite a bit of help, but we are getting somewhere! Oh, and Lindsay also told me today that she is hearing Kyara make different sounds when she is crying. This is a move towards talking again. YEA! We thank God for each step she takes!

Still Can't Find My Camera!

Oh, NO! I don't know where my camera is!! I have looked all over my house, my car, and the hospital room and I can't find it anywhere. Last time I remember having it was at the house, I downloaded pictures onto the computer, so where is it now... I hate not having it.



On to Kyara...



Kyara is finally at goal feeds! YEA! This means the IV nutrition (TPN) is officially off! She is just getting feeds through her J-tube now. This is a big steps and we are praying that her colon doesn't start acting funny again. One thing I have noticed is that she has had a couple of times where she threw up a little bile. This is not terrible, but I wish it wasn't happening. With her stomach so far up in her chest, it is not surprising that she has so reflux. If we don't have her propped up high enough, or if she coughs, sometimes she has some bile come up. Again, not a huge deal, but something that I wish didn't happen.



My poor dad had a rough night and day today with her. Last night she woke up around midnight and didn't go back to sleep all night! Then today, both her NG-Tube and her J-Tube were pulled out!! My goodness! What a day! She was pretty upset most of the day, but Gunars is with her now and said she has calmed back down.



We are still waiting to hear when the baclofen pump surgery will be. I am anxious. I hope it is soon rather than later. The earliest will be Tuesday, but I have not been told an exact date yet. This leaves me in an ackward position. I am trying to arrange help for the nights (between my mom and Gunars' mom) but I want to make sure I am there before the surgery. But, since we are inpatient and this is an "elective procedure" we don't have a scheduled time. I guess they figure they have us there for whenever they decide they can do the surgery.



Kyara continues to show signs of improvement. Yesterday, before I left, Kyara had speech. The speech therapist, Lindsay, used two cards. One had a smiley sun and the word "yes" on it, the other had a large red X and the word "no" on it. She showed Kyara each card and explained to her what they meant. She then asked her to look at the "Yes". Kyara did. She asked her to look at the "No" (which was to Kyara right, this is the direction Kyara has a harder time looking towards) and after a second or two, she looked at the "no"! Then Lindsay, asked Kyara a question, she reminded Kyara what the cards meant and told her to look at the answer. Kyara answered 3 or 4 questions properly using the cards!! YEA!! We are suppose to work on this a couple of times a day for 10-15 minutes. Lindsay said that this is like exercise for the brain and that it can be very exhausting! I am thrilled that we are working on a way for her to communicate with us! I know she is in there and each time she does something like this, I am thanking and praising God! He is continuing to hold Kyara up and help her heal. His time! Slowly, it is coming!!!

Where Is My Camera??

I have it when I don't need it, and when I need it, I don't have it. So what is it? MY CAMERA! We are not allowed to take pictures or video during therapy sessions, so I have not been good about bringing my camera to the hospital. I need to get some pictures of Kyara up, though, so this weekend, I will be sure to bring it and use it!
I know it has been a few days since I last post, but that is because we have been busy. Busy is good. When we would just sit around, I had more time to post, but now, Kyara is in therapy or we are going for walks (well, she rides) outside. I also do stretching exercises with her in the bed in the morning and at night. She is one BUSY girl! Lately she has been holding her head up better and better. She is also focusing on objects and sounds better. Yesterday I took her outside for a walk and she held her head up in the wheelchair for almost 45 minutes. Her wheelchair has a tilt feature so I can lean her back so her head will rest on the headrest. Yesterday I had it sitting straight up! That was the first time I have been able to do that without her head resting on her chest! Yea for progress!
Last night we were sitting in her bed and she was calm. I was holding her in a cradle hold (like a baby) and I THINK she said "Mom". She was not making any noises and this just came out of nowhere. Of course I tried to get her to say it again, but to no avail. I pray I really heard what I think I heard. I know that I can get desperate for a sign of progress and that I may have heard a moan and thought it was "Mom." I am very aware of this possibility, but I still think I heard it. I pray God was giving me a new sign of progress.
Kyara is still working on rolling and using switches to turn music on and off on the computer. She has gotten a reputation of playing possom at times in therapy,too. Isn't that like Kyara? It is amazing how much more awake she is after 5:00pm when therapy is over. Or even when I put her back in her chair and we leave a therapy room. Suddenly eyes are open and she is looking around. Silly girl! Now is NOT the time for that Kyara!!
Thank you all for your continued prayers. I also want to say thank you for donating to Kyara's fund. I don't know how to send personal thank you notes to everyone, so please know that your kindness and generosity has been greatly appreciated

Bring Back the Baclofen!!!

Yesterday was such a great day. I loved seeing Kyara so comfortable and NOT upset. Unfortunately, the baclofen wore off. It is very frustrating to see something work so well, then not be able to give her the same relief the next day. Since yesterday was a trial, we now have to wait for the neurosurgeons t schedule her for the surgery to put in the pump. It is looking like it won't be until NEXT WEEK! Oh, come on! She NEEDS the pump and the medication... NOW!!!

Today was a very difficult day, especially after comparing it to yesterday. Kyara has cried and moaned all day. She is not arching off the bed, but she is not comfortable either. I took her outside for a while after therapy, and she was not happy there, either. BOO :( I am hoping she is going to rest tonight, though. She needs it.

So now for the good: She is working hard in therapy. She is still not holding her head up much (I have seen her do it better in the past), but she IS helping more with rolling over. This is exciting news, I pray she gets it down. She has difficulty moving her whole body over because she is still very weak. But, Monica, the PT, is really encouraging. She said Kyara is doing all the right movements to roll over. She is only helping with shift the weight. She only helps when she feels Kyara trying. I worked with her a little this afternoon in her bed, and I was shocked by how much of the rolling she really did. Especially once she got started. She bends her knees, hips, and torso to roll. She also turns her head and shifts her shoulders to roll. This is all GREAT stuff! Kyara also focused on some pictures I brought in today. I held a picture of her and Skylar up, and she shifted her gaze as I moved it from one side to the other. She is still a little delayed on shifting her gaze, but she is finding the picture after about 3 seconds. That is something she wasn't doing consistently a week before. She did it 4/4 tries with me today! I also held up a picture of Kassey in my left hand and the picture of Skylar and Kyara in my right hand. I told her to look at the picture of Kassey. I purposely put this picture to Kyara's right side because she tends to be left dominate. She looked at both pictures, then settled her eyes on KASSEY! YES!!

In other news, Kassey has a nasty runny nose, with green slime pouring out of it. Poor baby is having a hard time sleeping - can't suck on her paci and breathe at the same time! I took her to the doctor today and they said it was just a cold. While we were there, we did her 12 month checkup (we were only 3 months late!) Kassey ended up with a cold and 3 shots. That was not her idea of a good time. I think she would prefer to leave the doctors' visits to Kyara!

Skylar is doing well. She is growing like a weed. School, karate, and soccer are keeping her busy.

I am suppose to talk with the neurosurgeon tomorrow, so I am anxious to hear when we will do this Baclofen pump. God has control of it. It will happen at the perfect time. I hope it is soon, I would like Kyara to have relief. After the pump is in, I am told it can take up to 2 weeks for them to get the dosing right, so it is not immediate relief for her. Again, I pray the surgery is soon.

Baclofen Trial

So today Kyara had the baclofen trial. She was scheduled to go down to interventional radiology at 9:00am. Well, at 9:20 we were still in the room waiting for her turn. Welcome to hospital timing. I understand, though, it is more important to take care of kids who are not stable than to do a baclofen trial. So, we waited. No big deal. Once we were finally down, they informed me that I could wait back in her room. I was not allowed to stay with her. A little nerve racking, but ok.

I went back upstairs and I was met by my cousin, his wife and daughter, and my aunt. What a nice surprise, except they were there because Maggie needed testing on her hearing. Turns out she needs hearing aids. That stinks. We had a nice visit and Kyara returned before they left.

The therapist, Priscilla, who was helping with the trial had come in before Kyara's procedure to get a baseline on her stiffness. She could not even bend Kyara's knees. She came back once Kyara was back and said she would be testing Kyara at 1 hour, 2 hours, and 4 hours after the procedure. She said not to expect much at the 1 and 2 hour mark, but we should see results by the 4th hour.

At the 1 hour mark, Priscilla came back and started moving Kyara's legs and ankles around some. She said there was already some improvement. By the 2 hour mark, Kyara was obviously better. And by the 4 hour mark she was great. She was able to sit in her wheelchair with out "bucking"out of it. She did not moan, groan, arch, or cry all morning and most of the afternoon. She was obviously more comfortable. YEAH!!

THE BACLOFEN TRIAL WAS A SUCCESS!!

Now the question is...what next. The trial dose wears off after about 8 hours, so Kyara will be back to how she was yesterday. The rehab doctor is consulting with neurosurgery to have Kyara scheduled to have the baclofen pump placed. This will be a surgery, but a good one. It will give Kyara so much relief. I want them to do it YESTERDAY!!!

During PT today, Kyara gave me a small grin. She smiled! Oh, be still my heart! I was totally thrilled. I was talking to her about how she had a picnic in Skylar's bed before we went to Michigan. She had been eating shredded cheese and she was on the top bunk. there were so many stuffed animals, I didn't even see Kyara at first. While I was telling her about this, she smiled at me. It wasn't a huge Kyara smile that shows her dimples, but it was definitely a grin.

Thank you God for the wonderful steps today. There is so much for us to be thankful for. Kyara is also working on operating push switches to turn a computer on and off. She worked hard on this on Sunday. She used her foot to step on the switch to play music.

I am thrilled with the progress Kyara has made in the one week we have been on the rehab floor at Scottish Rite. Her belly is doing great, she is getting closer to full feeds and off the IV nutrition. She needs her feeds to be at 70ml/hr and she is at 50 ml/hr. She is going up by 5 ml/day, so we are getting there. She should be at full feeds in about 4 days.

I know I am rambling tonight, but I feel like a I have hope again. Just when things feel like they are at their toughest, God smiles on us and shows us new ways that Kyara is improving. She still has a LONG way to go, but as long as we continue to move forward, what more can we ask for?

Are You Looking At ME???

I uploaded some pictures. Some are from the transfer to Atlanta on April 13th (sorry, they are a little late) and there is one of Skylar and Kyara outside this afternoon.

I really think that Kyara is starting to see us better. This afternoon, we were outside by a koi pond. I bent down to Kyara's right side (which she has a preference to her left and alot of times her eyes will roll up) and said, "Kyara, look at Mommy." She looked directly AT me!!! Down and to the right. She looked directly at my face and held it there for a number of seconds. Last night she also gave the respiratory therapist a hard time when he was trying to give her the flovent inhaler medication. They have the inhaler attached to a tube and mask that fits over her mouth and nose. When he put the mask on her face she started to shake her head side to side like she was saying "NO."

For those of you that know Kyara, you know that she had a mind of her own. She was known to play "possom" with doctors and therapists. Lately, it seems that she is doing that again. She will "sleep" sometimes in therapy and amazing enough, as soon as I put her back in her wheelchair to leave, her eyes pop open and she is awake. Kyara...you silly girl, the therapist are there to help you! Please don't play games now! Another thing she did this afternoon in therapy - When the therapist asked her to squeeze her finger, Kyara OPENED her hand. Now that could be interpreted in several different ways. 1- It was a coincidence that her hand moved at all. 2- She was trying to squeeze, but hasn't figured out how to make her hand do what she wants. 3- She didn't WANT to squeeze the therapists finger and so she opened her hand instead. Had this happened 3 months ago, I would say without a doubt that it was option number 3. Especially since the therapist on the weekend is not the same therapist she has been working with all week. Also, last night, Gunars said Kyara made a face that was "SO KYARA." He was explaining to my dad about the arm splint and when to put it on, and Kyara made a face that showed that she was not happy with the arm splint. From what Gunars told me, it was a face that Kyara has made many times before her injury. To us, this would mean that she heard Gunars talking to my dad, she understood what he was talking about, and she did not like it. I like to believe that she has the cognitive ability to have understood everything. I pray this is the case.

I am still having a hard time coping with Kyara's injury. I am learning each day to be thankful and celebrate the little things she does. When I think about how she was before the arrest, my heart breaks. That Kyara is not my reality anymore. I don't know what the future holds, but I do know that God is taking each step with us. I believe He is showing Himself each day in Kyara's recovery. Somedays we just have to look extra close. Please continue to pray for Kyara's recovery. I know He is listening.