Yay! A real grass stain

Bridger has always enjoyed his little cars and air planes more than sports. Today was a turning point. It was beautiful outside so we were blowing bubbles. After an hour of that we started to play some badminton. For the first time Bridger actually dove for the ball (birdie) and he hit it! He also got a real grass stain. We were so excited over both him hitting it and the grass stain we cheered for both. Bridger joined in and said “hurray I got a grass stain” It may seam an odd thing to be celebrating about. But the fact that he is out side wanting to run and dive for a ball is such a big step for him. He was having so much fun he kept diving for it over and over again. As I look at the stain on his jeans I am not sure how to get it out because I have never had to worry about it before. But like the wood sing on my laundry room wall says “There is always something to be thankful for."

Day 138

We made another quick trip to Houston last Thursday. We made great time and had a fairly short appointment. We left the house by 6 am and where back home by 7pm. The appointment went great. Bridger continues to gain weight and grow. We got great news that we don’t have to go back for THREE weeks! Watch out everyone we just took our first big sigh of relief. When we got home that night Bridger said “I am so happy we don’t have to go back for three weeks”, I agreed. Then first thing in the morning he woke up out of bed and walking down the hallway he said “Mom it was so nice of the Dr to let us come home for three weeks”. It is definitely on his mind. They made it sound like they will take out his central line when we go back or shortly after. Things are moving in such a positive direction we feel very blessed.

The other day we ran out of bread. I only had hamburger buns to make Bridger his signature “triangle” sandwich which is made of peanut butter and honey with the bread cut in to four small triangles. He was in dyer need of a triangle sandwich and relented to use the buns with a strong suggestion of slicing the top half of the bun in half the long way “to make the bread last longer”. He went in to the other room and thirty seconds later I heard “how’s my sandwich coming in their?” Later he was trying to convince me that it was time for me to let him play video games and said “mom I really insist”. What a funny boy.

Day ? I lost count :)

We drove down to Houston Thursday afternoon we had to be there by 5:30 to pick up some supplies form the home health company. We made it by 6:00 luckily our friends at the office picked up the package for us. We stayed the night in the trailer and my worst fear happened. We ran out of propane again in the middle of the night. It was freezing with all the crazy weather and all. The wind was blowing pretty hard which caused the trailer to rock and the trees to hit against it all night long. Needless to say I saw every hour on the clock and probably would have gotten more sleep had I stayed home. On Friday Bridger was seen by the ophthalmologist and his regular Dr. Everything is still about the same. I was glad the swelling of his optic nerve hadn’t gotten worse the Dr. wan not happy that it was still their. Because he is not having any symptoms they will just watch him. He also had slightly elevated liver enzymes. This could be from a virus or a med. So we have to go back next Thursday to make sure they are back to normal again. He also went down again on donor cell % he now has 3% male cells. I pray this number doesn’t increase. They are also performing a test that will cheek to see how his white blood cells are working, if they are doing their job and how well. Other than that he is doing great. He was very said to have to go back. I think I forgot to prep him that being home didn’t mean we wouldn’t ever go back. We are just so glad to be home that I forgot to stress the need for frequent visits. I don’t know maybe it will always be tough for him. It’s not like we are taking a vacation once a week. Anyone have suggestions on some good books on CD that we could enjoy on our long drives?

Happy New Year 2010

Happy New Year! We have a new year, a new schedule, and new goals. We have been very busy getting into our new routine. The good new is that this routine includes being HOME. We will be driving once a week to Houston for visits. Even better news is that this may change fairly soon, and then we will only be going down every two weeks. Bridger is doing great and continues to get stronger every day. He only takes three different medications now. At his last visit we found he had gained weight and grew taller. He still deals with dry itchy eyes and having the central line in place. He is not sure he wants them to take out the line because he doesn’t want to get pokes. We will have to way in on the risks of infection to help decide when to take it out. We are all so happy to be home and together. We enjoy every minute. I have started Bridger on a home school schedule which keeps me busier than him with all the prep time and what not. Anyone who has any great ideas, I am open to them. We have started out with two hours a day of school work, activities and so forth and hope he gets used to being on a set schedule that does NOT include video games or TV. We have many goals for this year, some big and some small. Here is a few;

Bridger - Learn sign language. We suggested riding his bike without training wheels.

JanaLee - Become a runner instead of a jogger. Start and finish a sprint triathlon. Build our nonprofit organization that will help other children and their families here in Dallas at the Children’s Medical Center as they seek medical treatment and receive bone marrow transplants.

Blake - To be home from work by 5:00 every night ...ok ...ok that was my wishful thinking. Blake isn’t here right now but I know one of his goals among many is to start riding his bike more frequently (it helps with his disease).

Chester (our dog) - Not to bark so much. We hope he is an over achiever.

This past year, as many of you know, has been one of great trial for our family. But with the trials has come a greater understanding and an appreciation of God’s love. We have received more blessing this past year than ever before. We have been enriched by those near and far who have shared their love, support and care for us. Thanks to you all. May you have a wonderful new year.

Christmas 2009

Bridger’s dancing in the video above shows his excitement to be home for Christmas. We had a wonderful day. While opening his presents he kept saying in a voice of excitement and a little wonder “Thank you Santa”. He kept repeating it over and over. He was very happy to get a street sweeper, walkie talkies and a toy airplane. He got most excited over getting the movie G Force. I guess we have been watching too many movies in Houston. Blake got a tool set and I got a camera which we exchanged the next day because it didn’t focus. When we went to pick a new one out I said “Maybe we shouldn’t get one are old one still works even though you have to turn it off and on in between every shot it still “works”. We ended up getting and I am glad we did. When we got home Bridger made a sculpture out of his dad’s new tool set and needed me to take a picture. I had to charge the new camera and when I went to use the old one it had completely died. Blake couldn’t have had better timing. Plus now I don’t fell guilty for getting a camera. The sculpture pic was taken it just had to wait for the new camera. Blake’s parents were able to stay for Christmas. It was so nice to have their help and company we already miss them. We have had a wonderful time at home and count it as one of our many blessing this year.

Day 110, A Glorious Day

It has been truly a glorious day! The excitement started to build last Friday when we got to come HOME! Last Friday we drove to Bridger’s Dr appointment with the car packed full to the brim in hopes they would tell us we could go home. Our positive thinking pulled through because after our 2 hour appointment they deemed him healthy enough to go home for Christmas. We have to go back on the 30th to draw more labs and make sure nothing has changed. But hope to get to come right back home. On the drive home Bridger was excited extremely wound up. His mind was going in one direction or another the entire way home. It is always nice to be home for the holidays. We spent all day Saturday unpacking cleaning and running some errands. I loved every second of it. Right now I am completely content and my heart is filled with joy. I am sitting by my Christmas tree listening to the forgotten carols by Michael McLane. The stockings are hanging above the fireplace and it is quiet and calm. Blake, Doyleen and I went to church this morning while Grandpa stayed home with Bridger. We want to give him a couple more weeks before we take him to church, plus they haven’t taken him off of isolation restrictions. Church was excellent. They had a very nice program with several Christmas songs and musical numbers. It was so nice to go to church. I have missed the spirit and strength that comes from attending church. A group of young men in our ward gave Bridger gifts for the 12 days of Christmas. He was so excited and kept saying “this was so nice of them”. Some of the presents had letters to him and they were very touching. I am keeping all of the notes that everyone has sent and plan to build a massive scrap book for him. It is great to be home!

Day 106, A short stay

Bridger continued to have back and leg pain so we ended up back in the hospital on Monday for two nights. Monday morning before being admitted he was talking to his dad on the phone. In a grown up voice and trying not to cry he said, “Dad, I am in terrible pain! I hope this pain never happens to you. I take my medicine and it still hurts. I am in terrible pain”. Needles to say it was very sad. They did another MRI and found some spinal fluid had leaked out. Bridger also saw the opthomologist again. The swelling is still about the same they toyed around with the idea of putting him on an new med but didn’t. Tuesday Bridger’s pain was much less and today it is even that much better. He still gets pain if he turns a certain way to quick. He is supposed to take it easy for the next week. (No wrestling) We go for another visit on Friday and hope to drive home afterwards. For right now it sounds like they want us to come back after Christmas.

The good news is that Bridger is feeling much better he even made a song up about his back not hurting. He really hated being back in the hospital but had a good surprise visit from none other than SANTA himself! Bridger saw him out in the hall way and when Grandma went out to tell them they could come into our room Bridger got a little nervous and said “I don’t want to talk to him I just want to look at him” an look he did. I think the only thing he said was cheese for the camera. It was not my camera. I had ran home earlier and that little voice said to take the camera but I thought “I don’t want any more pic’s of the hospital, I don’t need it”. And so I left it at the trailer. It never pays ignore a prompting not even the little ones. But they took a pic and printed it out right away for us. After seeing Santa Bridger was finally inclined to write him a note asking him to “come down our chimney and bring me set of walkie-talkies and a street sweeper that picks up little discs”. I wrote the letter he drew a very nice picture at the bottom and signed his name. He did a great job.




We also found a Santa joke in the hospital. Here it is, Why dose Santa have a garden? Because he likes to HO,HO,HO. It was the best one in the book.