Back in the hospital again!

Well, we are back in the hospital again. This time Tyler is the lucky one. On Sunday morning he woke up with a horrible head ache and by noon he was running a fever and screaming in agony so we decided we better get him checked out. After blood work, a CT scan and a spinal tap (luckily they put him asleep for that), they discovered that he had meningitis. We don't know if it is viral or bacterial yet, but they think that it is probably viral but they have to treat it as bacterial until they know better. He has been absolutely misserable the last couple of days and has only been somewhat comfortable in one position on his tummy with his head tilted back. They have been giving him morphine for the pain and his head is finally starting to feel a little better today. He also has a bad sinus infection and tested positive for strep so he has definintely been one sick boy. He hasn't even wanted to play video games or watch tv because the sound and the noise hurt his head too much. Poor kid. We will know this afternoon if it is viral or not. If it is viral then we should be able to take him home tomorrow, but if it is bacterial then he will have to stay here for at least a week to finish up the IV anti-biotics. We just can't seem to stay away from hospitals at our house! Life never seems to slow down much. I'll post again when we know more. Jeff is working from home and staying with the other kids while I camp out here with Ty. We just want to make sure that Jared doesn't get it!

What a Week!

Wow, what a week it has been! We spent a WONDERFUL weekend up at Aspen Grove at Kidney Kamp. We couldn't have asked for a more beautiful weekend. Aspen Grove is definitely a little bit of heaven on Earth. The views of Mt. Timpanogos are breathtaking and it was so peaceful and quiet. It was so nice to be away from the stresses of life and to be in a place where we could just enjoy family, friends and the miracles of life. Tyler and Alyssa had a great time enjoying all of the activities. Tyler loved the miniature golf and Alyssa loved exploring the pioneer village with her friend Lexi. Tyler said that his favorite part of the weekend was the food, which surprised me because he didn't like most of what was served, but I guess the endless supply of drinks and desserts made up for that! Jared just loved being wheeled around in his stroller and seeing all of the sights. I am so grateful for the people who make this event and other's like it, possible. They will never truly know how great a blessing it is to have time like this with our families, away from all of the stress that comes with having a chronically ill child. Thank you, Thank you, whoever you are!!!!!

We had such a nice time visiting with our friends that we have made through this journey with Jared. Brick and Kaden are two little boys who have had transplants and are just a little older than Jared. It was so funny to watch the three of them at meal times together. They could just really care less about the food and so they tend to get into mischief while the rest of us are trying to eat. It is nice to know that Jared isn't the only one who has NO interest in food! Krista, Tammy and I have decided that next summer we are all going to take our boys to Hershey, Pennsylvania, where there is a great feeding clinic. We might as well enjoy ourselves while the boys learn to eat!

One of the highlights of the weekend, was listening to a man speak who is one of the longest kidney transplant recipients in the country. He has had his kidney for over 40 years! He received his kidney when he was 14 years old and when transplants were all extremely experimental. It was amazing to hear about the experiences that he had during this experimental period. He came close to receiving a baboon kidney until the previous recipients came down with a strange virus that killed them. He ended up receiving a kidney from his mother's brother, because that had never been done before and they wanted to see how that worked. The surgeries themselves were horrible and then he was put in isolation in a hospital ward for 9 months! He rarely was able to see his family, and he watched over 90 people die around him, from complications of transplants! He and 5 other people were the only survivors of this early transplant period. It was an amazing story and it made me so grateful for these incredible people who went through so much so that Jared's experience has been such a positive one! His story is one that I will never forget and I am even more grateful for the miracle that Jared's transplant has been.

The true highlight of the weekend was Saturday night at the closing social. They had some music playing so that people could dance if they wanted to. Jared was tired and just kind of watching things from his stroller and then all of a sudden he wanted to dance! I got him out of his stroller and he took off. He was absolutely hilarious! He was spinning around on his bottom and flinging his arms all over the place. He looked like he was break dancing! He was definitely the star of the evening and people parted the dance floor to watch him. It was so wonderful to see him have so much energy and to enjoy moving his body so much. He was truly the miracle that night!!!

Monday was a big day at the hospital. Jared had his cast removed. Yeah!!! His leg has healed well and we were able to give him a good bath that night! We then headed down to the lab and then to transplant clinic. This clinic appt. was great! He gained weight (he is back on the chart again!), his white count was back up, and his labs all look great. Yippee!!!! Hopefully we are over that little hump that we have been on for the last few months and will have some smooth sailing for awhile. It was such a relief to have positive news. I have to admit that I was feeling rather discouraged for a while there and I came away from clinic feeling like I could do a little happy dance!

The rest of the week was spent buying a new dryer (our old one died last weekend), trying to get the laundry caught up, driving kids around, playing with Jared, and getting ready for Tyler's birthday. Yes, Tyler is now 10 years old!!!! I can't believe he is that old all ready!!!!! We had a cooking party yesterday with 5 of his friends. They made pizzas, smoothies, and decorated their own cakes. It was really fun and Tyler had a GREAT day. Now, I am officially exhausted!

My Little Ballerina

Alyssa started her first ballet class today. She is taking classes at the same studio that I danced with for so many years and so it brought back many, many memories. She loved it and has already been practicing her ballet walk. It is always so fun to see these little girls learning how to plies and curtsy. It will be fun watching her dancing skills develop.

Jared's white count hasn't changed and so we are doing another batch of Neupogen shots. Hopefully this round will do the trick! We are headed up as a family to Aspen Grove tomorrow for Kidney Kamp! It is a short weekend stay for transplant and dialysis patients and their families put on by the Utah Kidney association. Several of the families that we know quite well will be there and hopefully we can keep Jared away from too many crowds. Tyler and Alyssa are really excited and it will be nice to spend a few days with Jeff away from work!

All Girl!

Alyssa was so funny today. When I picked the kids up from school she was sobbing. I asked what was wrong and she said, "Miss Lichford is getting married and moving to Colorado and today was her last day!" Miss Lichford was her teachers aide in kindergarten, her reading teacher last year and she is her math teacher this year, and Alyssa has always really liked her. She cried for 30 mins. when we got home and she told me that when she found out that it was Miss Lichford's last day she said that she couldn't stop crying at school. She also told me that there were other girls that were crying as much as she was. Is she emotional or what? What is she going to be like when puberty hits? Her best comment was that she was mad at one of the boys because they said that they were going to miss Miss Lichford's tarantula and Alyssa could not believe that the spider was all that he could think of at such a time! Change is always hard and Alyssa gets VERY attached to her teachers, but I couldn't help but laugh inside at the intensity of her emotions. Oh, how I LOVE having a daughter!!!!!!!

So Tired!

The weeks are going by so quickly and I have been so tired that I just haven't gotten to my blog lately. Jared is still not sleeping very well and he likes to begin his day between 5:30 and 6:00 am which is much to early for me. I'm wondering why sleep deprivation has to be a part of motherhood. It is hard enough when you are fresh and well rested, let alone when you are exhausted. Oh well, we keep taking each day at a time.

Jared is doing well. His ANC (a part of his white blood count) was still low last week even after the shots so we had more labs done today in hopes that they will be back up. If not, then it will be more shots for Jared. He really is an amazing little trooper though and despite his broken leg, he has decided that it might be time to learn how to crawl! He is slow and can't do it for very long but he is actually facing the ground! He is keeping busy and has quite the mind of his own these days.

Alyssa absolutely LOVES school. She is such a social little thing and has more friends than she can count. She loves learning and told me today that the best part of her day was going to school and the worst part of her day was having to leave school. I only hope that this enthusiasm lasts through college!!!

Tyler is doing sooooo much better than I thought that he would be doing. I look back on last year and sometimes wonder how we all got through it. Tyler was so sad and angry and just not himself. Before school started I was worried that he would be the same but I kept telling him that he is doing so much better now with the new meds. that he is on, that it would be a completely different year. He was pretty nervous but is doing great. He still doesn't have a lot of friends but he is at least going and not calling me to come and pick him up every hour of the day. Boy has he come a long way. I LOVE having my Tyler back! It scared me so much not knowing if we would ever find him again.

Jeff is as busy as always. I don't know how he can work so many long, long, long hours day after day after day. He is great and I love him so much.

I have several projects that I want to get working on. I was in a restless mood last week and ended up painting my laundry room in brightly colored polka dots! I'm not sure where that inspiration came from but it looks cute. I'm know that Jeff wishes that I would work on other unfinished projects but I guess that I needed a little outlet last week. I'm am now going to redecorate Jared's room for his birthday. Now that he is almost three I guess he has outgrown the baby theme. We'll see how it all turns out!