Jaxon and Hayden's Medical Story

Sunday, June 14, 2009

Backtrack to two concerts.....


These pictures are from Jaxon's Memorial Day concert. The 1st graders had a really big part in the celebration, and that was the biggest I have seen! Everyone was there, and the program was very nice. Jax0n and his class sang 3 songs, and each had a piece of a poem that they recited. I did try to download some of the video of Jaxon, but it didn't work. Jeremy will try to condense it so it isn't so long, maybe then it will download! Jaxon did a great job, and was very clear as he spoke.

The kids, band and the rest of us marched all the way to the memorial to finish the program there. It was a long walk, but Jaxon made it. Each of the 1st graders carried a cross and placed them by a grave of a passed soldier. It was a wonderful morning! We even had a fly by from two fighter jets, which was really cool!



Here is Jaxon by the grave he honored.


Spring Concert
I am really playing catch up now! Sorry this has all taken so long! These are pictures of Jaxon's spring concert before the end of school. He did a great job and took some awesome pics afterward! The first pic is of the 1st grade and kindergarten singing their songs. They were all pretty cute! Jaxon's favorite song they sang was "Doe a Deer", from the Sound of Music.

All my handsome boys!!
This family pic really turned out great!
Grandpa and Grandma came to watch too.

Park time!!

How cute are these guys???
Dad had to join in the fun too!

Aunt Brittney and Jax getting a little stuck.



Jonah has been on a mission to get across the monkey bars. He is really good at it, and has been able to make it now all by himself!

The beginning of summer.......

I can't believe that we are in the middle of June already! The summer has started off so fast, and now I am playing catch-up. I have been adjusting to working away from home these last 2 weeks and it's thrown me a little. I'm not use to getting ready and out of the house by 8 am. I am coaching gymnastics this summer and doing some wedding coordinating at Bethel (in Fergus), so it's been a little upside down at our house! Jeremy has been home with the boys, which they all love, and that has been a good break for him. He is playing some church softball and doing lots of projects around our house. He will have a lot of work to get to soon, with moving up to 1st grade, he has a lot of revamping to do to get ready for the next school year. He is also coaching basketball a couple of times, and I am helping out with volleyball league on Tuesday nights. So as you see, we are pretty busy! Jax has had a couple of big weeks too, which have added to the business. But we wanted to get a few of these things done for him early in the summer, so he could have the rest of the time to have fun and relax.

On to Jaxon's appts... he had hernia surgery last Friday morning (June 5th), which went really well. It was a bigger hernia than they thought, so we were happy that we got it done. He slept almost all of Friday away, but awoke to the smell of supper and gulped down two hotdogs and a ton of baked beans. He hasn't had very much pain, and he didn't bruise at all! He was doing really well on Tuesday and Wed. and had a ton of fun at T-Ball. The next day (Thurs.) we headed to Rochester for his appts. on Friday. We had a pretty emotional trip...especially for Jeremy. Three weeks ago Jeremy's Grandpa Knick, had a stroke, and has been in the hospital ever since. These are the grandparents we stay with for every trip to Rochester, so we have really bonded with them the last three years and they have been a blessing to Jaxon and us. It has been a roller coaster ride for the whole family. He will be unresponsive for days, with everyone thinking he is slipping away, then he will just wake up, talk and eat. So, on Thursday, we got to go visit him. He didn't stir while we were there at all, but the next day, he was having full conversations with people. It was good for all of us to be able to see him, in case he takes a turn for the worse again. Brittney came with us, so she could see grandpa too. But, it was great bonus for us to have her along for the help with the boys(we had to bring all 3 this time, cause we promised)! Friday morning, Jax had cortisone shots in his ankles and elbows, they also took some fluid out of his elbows. He was put under again for that, which went great, and he came out of it a whole lot easier than with his other surgery. Right after that, we had back to back appts. with Dr. Driscole, his rehab doctor and Dr. Mason. There wasn't much good news that came out of either of those appts. His rehab Dr. was concerned about his arms and hands(especially the extension). He has been swelling and hurting a ton in his wrists, elbows and fingers, which is all new in the last few months. If his extension in his elbows or wrists gets any worse, we will have to start splinting his arms at night. This would help keep those arms straight and stretched at night. We will also have to see a hand therapist to make sure we know and are doing everything to keep his hands from deformation. With Dr. Mason, there wasn't really anything new. We are going to keep working on getting down to 1 ml on his steroids, so that he can keep growing. Also we are going to maybe go up to a full dose of his Kineret shot, if he really starts to have a lot of pain. We will be going back at the beginning of Aug. to see where we are at, and also possibly get injections in his wrists before school.
That is the low down right now, and we will see where the rest of the summer will bring us. All we can do is lean on the only One who knows exactly what is going on and how we feel! No matter what goes on in our lives, He is always there to walk along with us.