Jared Update

Because of this pesky white count of Jared's, the Drs. called Hematology to get some ideas. They changed the anti-biotic that he was taking to prevent urinary track/kidney infections to a different kind, because I guess that the one that he has been taking can sometimes affect white counts. Who knew? Anyway, we switched that med and rechecked on Monday and his ANC was up! It wasn't where they want it to be yet but it was at least heading in the right direction! This is great news! We will retest again on Monday and we also have an appt. with a hematologist that day so hopefully we will get to the bottom of this mystery! Besides that, Jared is doing great. He is busy, busy and enjoying his new room! (I'll post more on that later!) It has been a GOOD week!

Fireman Sam!

Jared LOVES the show Fireman Sam. The day of his birthday, we had run down to Costco to pick up a few things for his birthday party, and boy was Jared in for a treat. Costco was having their Heroes day, and there were firefighters and their trucks and helicopters their for the kids to see. Jared LOVES firetrucks and helicopters and he was so excited to see them live and in person! He even got to sit in a couple of them! One firefighter in particular was so sweet to him. When he found out that it was his birthday, and about his transplant he spent so much time visiting with him and showing him everything. Jared spent at least a half of an hour sitting in one particular HUMONGOUS firetruck. It was a firetruck that they use to go off road to fight forest fires and fires on the foot hills and it was HUGE. I kept asking Jared if he was ready to get down and just shook his head and said "NO". He was in heaven! He was enthralled by the whole experience and it was definitely a major highlight in his little life! The firefighter let him sit there for as long as he wanted to and let him push buttons and turn the steering wheel. Luckily the truck was big enough that many kids could get in and out and so I didn't feel so bad that Jared was monopolizing the truck. One of his favorite TV shows is Fireman Sam and so he calls every firetruck "Fireman Sam". "Fireman Sam" sure made his birthday extra special and I am so glad that I had my camera with me that day so that I could capture Jared's delight!

The Witch Hunt

This past Monday, the kids were out of school so my sister, Rachel, and I took the kids to Gardner Village to see the witches. Gardner Village goes all out for Halloween and the place is covered with all kinds of silly, funny witches. They had a "witch hunt" that you could print off on-line that listed different witches that the kids had to find. If they found them all then they got a cookie at the bakery. It was a BEAUTIFUL fall day and the kids had a wonderful time. Rachel took some great pictures and I thought that I would share them.


Hanging out with a witch!

We amazingly got them all to stay in one place for a picture. They are all even looking at the camera!

Benny took it upon himself to keep Jared from scooting where he wasn't supposed to scoot. He wasn't about to leave his post!

Jared loved exploring while the rest of us ate lunch. It was a beautiful afternoon!

Kiss the Cook (witch). Tyler wasn't so sure about it.

Alyssa planted one on that ugly, old witch!

Stubborn White Cells

We actually got to skip a week of labs last week. Wow was it a treat! Wow was it ever short lived! We did labs today and I got a call from Alexandra (the transplant coordinator), this afternoon. Jared's white count, particularly the ANC (absolute neutrophil count) dropped AGAIN! We gave him the GCSF shots just a month ago and it has already dropped again. The doctors aren't sure why this number keeps dropping so quickly so they want us to take him to see a hematologist, just to make sure that something else isn't going on. Crazy! I think this makes about eight or more, I've lost count, specialists that Jared has. Boy does he like to keep everyone hopping! Hopefully we'll get something figured out soon, but for now, Jared is under house arrest until we can get these numbers back up.

On the bright side, Jared is starting to really do well with his blood draws. It kind of seems strange to say that he is used to such an unpleasant thing, but with continual blood tests for the rest of his life, it is good that he is adjusting. Today, he cried a little bit when they put the elastic around his arm and right when they poked him, but then he looked down at the needle in his arm and calmly said "airplane!" He thought that the needle looked like an airplane! From that point on he was nice and calm and pointed out the tubes and the band aid and was perfectly at ease with the situation. I'm actually relieved that it is getting easier for him. It is always so hard to see him fighting it, and yet it is also hard to see him accepting it as well. What a crazy life and what an amazing kid. I found a vinyl saying that I had to buy to put in Jared's room. It just summed up his little life so well. It says "For one so small, you seem so strong." That is my Jared in a nutshell!!!

Catching Up

Wow, I kind of disappeared there for awhile. We are doing well and Tyler has completely recovered from his meningitis. I believe that we are even caught up with the school work that he had to make up! Before the crisis with Tyler we had actually had a wonderful week. It was a crazy, exhausting week, but it was a great week.

Our peach trees were loaded this year and so I spent most of the week frantically trying to do something with them all. My sister, Rachel, described a bite of a peach as the "essence of summer." Isn't that a great description? The only problem is that they don't last very long, so when they are ripe, there is no waiting for a convenient time, you have to act fast. I froze peaches, canned peaches, made peach butter and peach fruit leather. I think that we have enjoyed or preserved for later enjoyment every "essence of summer"! I have to admit that I was a little tired of them all by the time I was finished, but they sure taste good!

The peaches would have been fine except that we were throwing a BIG Birthday Bash for Jared that Friday! I had peaches EVERYWHERE, and I was hosting around 4o people for Jared's big celebration. Things were a bit crazy! We have not done very much on Jared's previous birthdays because things have been so crazy for him, so he deserved a BIG party to celebrate his 3rd birthday. He has gone through more in his 3 years of life than a child his age should, and it was a way for us to thank everyone who have been instrumental in helping him come this far. We invited all of his therapists, doctors, lab techs. (the two who always draw his blood), everyone from the transplant/kidney clinic, friends and family. It was a wonderful celebration, and Jared was so cute and happy and LOVED opening up his presents. I was hoping that the weather would be nice enough for us to be outside and it was absolutely BEAUTIFUL! It was a wonderful, perfect, evening and we were so grateful for the many people that came to celebrate our wonderful, amazing, miraculous Jer Bear!!!

The morning following Jared's birthday was the 1st HopeKids event in Salt Lake. HopeKids is an organization for children with life threatening illnesses and their families. They believe that by providing many fun activities that sick kids can constantly be looking forward to, that this HOPE, can help give them the strength to continue on. They also include the family, because the illness affects them all. It is a wonderful program and we are so excited for it coming to Salt Lake! The first event was held at Classic Fun Center in Sandy. It started bright and early at 8 am. (it was a little early following Jared's party the night before) and we were able to spend the first two hours in the area with the giant inflatables and the fun play area. The kids had a blast and Jared was even able to crawl through the play area and had the best time. HopeKids had the place to themselves so it was great. The second two hours were spent on the roller skating side of the place. We could skate and they also had face painting, craft activities and unlimited soda pop to drink. They then fed us pizza. It was so much fun and so great to be able to meet so many incredible families who are facing similar challenges as we are. Thank You HopeKids!!! By the time we made it home we were all exhausted. We were really hoping for a nice, quiet day on Sunday to recuperate, but then the adventure with Tyler began. No wonder why I was so extremely exhausted!

Numb

This is the word that best describes me right now. I am so tired, emotionally and physically, that I am now numb. I am always amazed at how calm I can be during a crisis. I take scary or hard news with barely a thought and continue on as if everything is fine. I believe that most of the time Heavenly Father is blessing me with peace beyond anything that I am capable of, but sometimes I think that I am getting too good at blocking the emotion from reaching me. Whenever a current crisis has come and gone, I crash. I guess that once the moment has past my body just finally shuts down. But still, I am numb. There is no emotion, just exhaustion. I sometimes wish that I could just sob and sob, but the tears never come. How do I protect myself without shutting all emotion out? I know that I have to be strong. Jeff panics if I cry and the kids would panic if they saw me panicking. Instead of screaming out, "NO! Spinal taps are scary!, They hurt. They are serious". I calmly look at Tyler and tell him that everything is ok, it is just a little poke in the back. When they take my two year old into the OR for an organ transplant after informing me that this is about as major a surgery as you can get for a child this age, I calmly hold Jeff's hand and head off to wait in the waiting room. But inside, somewhere, I know that there is a part of me that is sobbing, screaming, "NO! this doesn't happen to me, to my little son, this is not my life! Bring him back to me!" I know that I can't be crying all of the time, but sometimes I am afraid that I don't feel anything anymore. I hear a sad story and it touches me and I feel sad, but I push the emotions back and continue on, protecting myself from feeling the pain and sorrow. Am I beyond feeling?

Home Again, Home Again, Jiggedy Jig.

We are home! The tests did show that it was viral meningitis which was good because the bacterial meningitis is the kind that sometimes has lasting complications. Tyler is improving a little bit day by day and hopefully will be back to normal by next week. He is still very weak and tired and is still fighting off a head ache all of the time, but he is soooo much better.

Jeff and I are exhausted. Jared has a cold, so he hasn't slept well for Jeff, and between Tyler, nurses and monitors beeping, not much sleep has been had for me. We need a sleep vacation! I think that I could sleep for a week if I had the chance! We had such a busy week last week and I was so tired and looking forward to a nice, calm week. I didn't even have to take Jared up to the hospital for labs and clinic on Monday (the first time since his transplant that we were going to be able to skip a week) and I was so excited to finally have a week where we didn't have to go to the hospital. Well, needless to say, we were back at the hospital. On the bright side, at least I didn't have to figure out how to get Jared to his appointments! I'm sure that next week will be that quiet week that I know is out there somewhere! We are just really grateful that Tyler is ok. My brother, Ben, had meningitis when he was two. It was bacterial and he was sooo sick and it is a miracle that he didn't have any lasting damage. So, when they were saying meningitis I was getting a little scared. I am so grateful for all of our family, friends and ward members who immediately began praying for Tyler. Our prayers have definitely been answered! It still amazes me how good, and generous so many people are. I sometimes feel like our family has been the neighborhood service project the last few years because we have needed so much help, but everyone is so kind. Someday, I will be able to pass it forward and I am looking forward to that time!