Balancing Act

We spent the morning at Primaries today. Jared had his labs done and now his white count is too high! He can't seem to make up his mind. We'll be going back up on Friday to recheck but they can't be too high or the chance of rejection goes up. Luckily, he doesn't seem to be affected by his crazy white counts. He is as busy and as feisty as ever! We also saw his orthopedic surgeon today for a check up. His feet are still doing well but we'll really see how well after he starts walking on them more. Hopefully that will happen soon. He would be so much happier if he could get around better. Tomorrow we are heading back up for his check-up with the opthamologist. He has check-up every 6 months because he has Ptosis, which is drooping eyelids so we have to monitor that to make sure that they aren't affecting his vision. So we have a 3 day trip to Primaries this week. We are sure keeping that road hot! I'm just grateful that we are as close as we are to such a wonderful hospital. There are so many people that have to drive to much farther. 45 mins. isn't that bad!

The kids all had dentist appts. today. Amazingly none of them have any cavities. It is a small miracle because I haven't been monitoring their teeth brushing very well the last 6 months. Life has just been a little too crazy. The dentist also cleaned off the calcium deposits off of Jared's front teeth and they look soooo much better. Because he doesn't eat, there is no food and tongue action to keep deposits off of the teeth. We don't worry about cavities, but his teeth get pretty yucky. It's amazing how if one thing is not quite normal, how there are so many things that can be affected.

Tyler had a REALLY rough weekend. Sunday was especially bad and I am really hoping that he can settle down soon. It's so hard to know if the meds. are making things worse or if we just need to be more patient and give them more time. He is just so off. I don't know how to even explain it, but every little thing turns into a huge disaster for him. Grandpa Shawcroft came out last night and helped Jeff give him a blessing. It was a beautiful blessing and Tyler did seem to relax a little bit. The last 7 years have been an amazing lesson on patience for us. We just want answers and solutions now, but I know that if we continue to have faith and trust in the Lord's timing, that all will be well.

More shots!

Well, Jared's white blood count is going down again, specifically the neutrophils, which are the white blood cells that fight against bacteria and fungus infections. So we are repeating the series of neupogen shots. This whole transplant thing is quite the balancing act. They have to keep the immune system compromised to keep the body from rejecting the kidney, but if it is too low then viruses like the BK Virus can come alive and take over. It is truly amazing what the medical profession knows and can do. There is a lot that they don't know but they can sure do so many amazing things! The human body is so complex and works together in so many different ways that there can truly be no doubt that our bodies were created by God. The more you learn about it all the more you realize that this can not just be some random natural occurrence.

Besides constantly monitoring his labs, Jared is doing very well. He is acting more and more like his age these days and is getting very good at throwing tantrums. Of course they are frustrating but at the same time it is so good to see him acting age appropriate. There are so many things that I appreciate so much more as we have gone through these experiences.

We recently purchased Enchanted this week and Alyssa absolutely LOVES it! Yesterday morning she was as happy as can be and was dancing around singing the song that Giselle sings to call the animals and birds to help her. Tyler, Jared and Jeff were having a rough morning but Alyssa was absolutely oblivious to that fact and was prancing and singing all the way to school. She is such a breath of fresh air sometimes and I wouldn't be surprised to see her playing the part of Giselle on Broadway some day!

Crazy Days

It has been a while since I have written. The past week has been busy. Jared is still drinking his formula from a bottle. He is actually drinking enough during the day that I don't have to hook him to his pump during daylight hours. What he doesn't get during the day I give through the pump at night. Is is truly amazing. He and I both love not being attached to the pump 24 hours a day. I kept feeling like I was missing something whenever I picked him up the first couple of days. After carrying that around for 2 years, the freedom is wonderful! Jared is loving his freedom. We went to the park the other day and he scooted all over the place. He was so happy. If anyone sees pants or shorts for a dollar a pair, please let me know because he is wearing out the seat of his pants on a regular basis now! :)

We have a few new worries this week though. There is a virus called the BK virus that we all have which lies dormant in our urinary system. When someone is immunocompromised like Jared is, this can wake up and it loves to eat up kidneys. Jared has BK replication going on, so we have to get it under control before it hurts his new kidney. They have lowered his meds., hoping that this will let the body fight it. We will retest in a couple of weeks to see if this has helped. If it hasn't then they will try a new kind of immunosuppresion and they might need to do a kidney biopsy to see what is going on. His kidney function hasn't changed at all yet so that is good. Hopefully we'll start seeing the levels drop soon. They say that it is relatively common and that they almost always get it under control, but it is still a little worrisome. His white count is also starting to go down again so we are doing another CBC tomorrow to check that. If it is still getting lower than we might need to do the neupogen shots again. This transplant stuff is pretty crazy. They told us that we would be trading the bucket of worms that belong to Chronic Kidney Disease, with a bucket of worms that comes with transplant. Boy were they right. It is a lot to keep up with, but when I see how much better Jared is doing, it is definitely worth it.

We went to the Kidney Foundation Easter Egg Hunt on Saturday. It was great and the kids love the amount of treats that they get. It feels good to support the kidney foundation, and seems a little strange that we belong there now. I recently got some organ donation car magnets to put on our cars and I hope that I can do more for this important cause.

Tyler is still plugging along. We took him to a new psychiatrist last week and he stopped the anti-depressants and put him on a mood stabilizer. It takes a few weeks to see if it is helping so we are keeping our fingers crossed. We are so ready to have our Tyler back, and he is so ready to feel like himself again. I just keep praying for peace and guidance with all of this, and know that we just need to be patient and have faith that all will be well. He is such a good, sweet, bright boy and I pray that we can find the answers so that he can reach the amazing potential that he has.

Life is definitely crazy but we are happy and we have the best family in the world. I am so grateful for the Savior and I know that he is aware of our struggles and will help us if we show faith. What a blessing it is to know that he will help us and that he knows us personally.

It's a Miracle!

Jared actually drank some of his pediasure from his bottle today! He has only drunk just a little bit of water his entire life from a bottle and today I thought that I would just see what he would do. We normally put all of his food, which is a type of pediasure, through his g-tube, but he actually drank some of it and then wanted more! I was so delighted that I had to call his dietitian and she was as happy as I was. I'm hoping that he continues drinking some of it by mouth so that he doesn't have to be hooked to his feeding pump so much during the day. It seems funny to be so excited about such a seemingly small thing, but for Jared, it is huge! It is truly amazing to watch as he is growing and developing now that he is feeling better. He is hilarious.

I was looking on the UNOS (united network for organ sharing) website today and was looking up data on how many transplants took place last year. Jared was in the 1-5 year age group and there were 162 kidney transplants in this age bracket last year in the U.S. That is not that many when you consider how many children there are in the country. It seems so crazy that Jared is part of this small, small number. Life is sure full of surprises. I never dreamt that our little family would be experiencing something like this. It has truly been an amazing journey and even though it has been very difficult, I am so grateful for all of the experiences and blessings that we have received.

Busy week

It has been a few days since I have written. Life is busy and the days fly by so quickly. Jared is doing very well. He is absolutely obsessed with bubbles. He talks about bubbles, he sees bubbles everywhere, he pretends to blow bubbles, and he throws massive tantrums when we are done playing with bubbles! We've decided that we are going to take a little break from bubbles for a while. :)

Alyssa is as sweet and creative as usual. I have decided that she was born with the perfect personality to be smack dab between these two boys that require so much time, energy, and attention. She seems to handle things pretty well most of the time and she never runs out of things to say. She can literally talk all day if you let her! She is a joy to have around and she definitely brings energy and life to us all.

Tyler is our worry right now. He is still really struggling with his panic attacks and had a doozy of an episode on Friday. I was actually on my way to the emergency room with him because he just couldn't seem to get calmed down. Luckily he was finally able to get under control before we got there, but it was scary. We took him to a new psychologist on Friday that both of us really liked. I am cautiously optimistic that he will be able to help. I feel so helpless when Tyler is having a bad episode. I just really hope that we can get our Tyler back again soon. We are all walking on egg shells around him these days.

I made the cutest little dress for Alyssa yesterday. It is a pillowcase dress. She didn't have anything clean to wear and I saw these on line and decided to give it a try. It turned out so cute and it was so easy to make that I am now ready to make more. I'll have to post a picture of it. I am so glad that I have a little girl to dress up. I need to take advantage of it now though, because she is growing up way to quickly!

Sunny Monday

It was a beautiful, mild day today. It is giving me hope that spring really is coming! The kids played outside this afternoon and the house was so peaceful as a result. What a nice treat.

Jared had blood tests and transplant clinic this morning. His white count is still looking great and he is doing very well. In two weeks we go down to blood tests just every other week. That will be unbelievable as we have been going at least once a week, and usually more than that since his transplant. It is amazing that it has been three months allready. I gave the social worker a packet with a letter and some pictures to give to his donor family. That was the hardest letter that I have ever written. How do you thank someone for saving your sons life as they have lost their loved one? Hopefully it will be ok and they will feel our love and gratitude. I hope that they respond back. It would be nice to know more about his donor's life.

Happy Birthday to Me!

Yes, today is my birthday. It seems like it was just yesterday that I had my last birthday. Time seems to fly by more quickly the older that I get. It was a nice day. Jeff got up with Jared so that I could sleep in a little bit, Papa called (what a wonderful way to start my day), and the kids brought me breakfast in bed. My mom and I hosted a bridal shower for Craig's (my cousin) fiance, Briana, and then I spent the evening with Jeff and the kids watching Sky High and eating a giant birthday cake from Costco. It was a pleasant day. Tyler even amazingly did his chores without complaining this morning! I told him that I didn't need any other birthday presents after that! Thank you all for the love and support that you show me. You are the best! I love you all!!!!

White Count

Today has been a pretty good day. The kids were happy and Jared actually slept well last night. Jared's white blood count has been low, so last week we started him on a series of 5 shots of a colony stimulating factor called Nuepogen. It helps the bone marrow produce white blood cells. I (as his home nurse):) was the lucky one to give them to him. We finished the last one today and they have worked! His white count was back to normal again! It is truly amazing what is possible with modern medicine. I am in complete awe of all that can be done. I am grateful to live in a time where my son has a chance to live.

My First Blog!!!

I have been inspired to start a blog. There are so many people who have prayed and supported us lately that I decided it was high time to let them know how we are all doing. I'm also hoping that this can be my journal keeping (I'm not so good at that and so I hope that this will help)! Please be patient with me as I figure this all out. I'm sure that it will take me a little while to get it all right.

Our biggest news of the year is that Jared had his kidney transplant! We received the call on the morning of December 3, 2007 and by 11:00 that night, Jared was the owner of a new kidney! He was on the donor list for only 2 1/2 months and we are so grateful for his donor and his family for their generous gift of life. We will never forget them and pray that they are receiving comfort after their loss. I stayed at the hospital with Jared for the 11 days that he was there and Jeff handled things at home. Jared and I were both exhausted but happy to get home in time for Christmas. He is doing well and it is amazing to me that it has allready been 3 months today! We have been so blessed through all of this and we are grateful for everyones love and support.