Jaxon and Hayden's Medical Story

Wednesday, January 20, 2010

Rochester update

Our trip to Rochester was a quick one, but jam packed. Jeremy had a basketball game on Friday, so Jonah just stayed back with him. My mom came with us to help, which was great for Hayden, especially! We left at 10am on Thursday, so we could just take our time on the way down there. The trip down went fast, we went straight to Grandma Knick's to say "hi", and see all her Christmas stuff. Then we spent the next hour with Grandpa Knick, eating cake and visiting, for his birthday. It was great to be able to spend some time with him.
We got to our hotel, and relaxed the rest of the evening, going to bed early. We had to be up, and at Mayo @ 7am
. Jaxon had injections first, in the morning. Dr. Mason decided to do it in both of hips, and his right ankle. We were happy that his hips got done, cause they have been really bad lately! He woke up great, and got a Vikings surgery cap this time, so he was thrilled! Next we saw Dr. Mason, and found out that he had grown an inch since we saw him last!! Yippee, a whole inch!! We were pretty excited, Dr. Mason included! We are going to just keep doing the same stuff right now, because we seem to be at a good enough place, right now. He has been as stable as Jaxon can get, which is a good thing! We might try a new medication in the next year or so, but that's still being tested, and he wants to do a little more research. He wants us to come back in 4 months, and do the same things, but an x-ray of his hips, and ultra sound of his hips, so they can do cortisone shots into the (for sure) right spot.
Next we had rehab, which was fine, but she didn't like his extension in his elbows, so she wanted us to see about splinting them at night. Which was our next appointment, the OT, who actually made the splints. One for each arm, that he wears at night, and so far hasn't minded them. She also gave us some other exercises, to help with that too, that we can do at home.
Our last one of the day was the endocrinologist. He was a really nice guy, and very interested in Jaxon's case. He was concerned with his growth obviously, not just because of his height, but his weight too. He is below the 3rd % on both weight and height. He thinks the weight is the issue, because them together being low, means that it might not just be about his disease, and meds., but maybe something else. They did a x-ray of his hand, to see how old his bones are, and we will be doing some more tests here, to see if there is anything else going on. He wonders if his body is getting the right nutrients, so we are probably going to see a dietitian. With all of Jaxon's problems with his stomach, he's wondering if he is absorbing things properly. He had a ton of info and was very helpful, but my brain was mush, after we were done. We will find out more on the testing, when we get them done next week.
We didn't get out of Mayo, and on our way until about 4:30pm, which put us into Ashby at 10pm. Needless to say, we were all really tired, but we made it!

Turning 4


Of course, I'm late again on pictures, but it's been a hectic couple of weeks!
Hayden turned 4 on the 10th, and had a great weekend! We decided to keep things low key, since we had all just been together for Christmas. He got to have 2 parties in one day, one with the Knick's in the afternoon, and then with G&G Rogness.
First, we had Grandma J, Grandpa Kever's, Nathan and Amber, to our house for taco's in a bag. We ate, opened presents, and had cupcakes. Then we went to Jeremy's basketball game, which was fun, because we hadn't been to one yet. The boys love seeing what dad does, and had a blast watching the guys play!
After the game, we packed up and went to Grandma and Grandpa's for the night. We had a great supper and birthday cake. Hayden got to open more presents, and we all watched football playoffs!
I just can't believe he is 4, my baby is all grown up, and it's makes me sad! But we are so proud of the little man he is growing up to be! Happy Birthday Hayden, we love you lots!

Opening presents!



Playing with his new toys!



Jonah had to get into the pictures too
Happy Birthday Hayden!




Jaxon and Jonah even got something special too!