It' been a week since we got back from Rochester, so this is a little late in coming! I have been just way too tired to do this at night, and I can't seem to find the time during the day to get it done. I know..... enough with the whining!! Anyways, we had a good, quick trip. We saw Dr. Mason on Friday afternoon then went home on Sat. morning. Jaxon was having a really hard day on Sat. and slept almost the whole way home. It was great to have the van, Jax had so much more room, plus we can have the wheelchair up and ready (we used it a ton that day!). Jonah and Hayden got to stay here and hang out with Grandma J. They had a blast going to the park, and picking us lots of dandelions!
When we got into town we found out that Grandma Knick was in the hospital, with a pretty big blood clot in her leg, so we spent some time with her in the hospital that evening. It was fun to see her even though it was no fun for her to be stuck in a hospital room! But at least the Twins were on, right Grandma?!
So, onto what we found out about Jax. His blood tests were not surprising to us at all, they were all elevated, which is why he has been in so much pain these last 2 months. But, the good news outweighed the bad, he had grown an inch since Dec.!! That was really fun to hear, he hasn't grown hardly at all, for more than 2 years. We have been pretty low on steroids for a couple of months, which has helped him do that. Dr. Mason wanted him to stay low on them, even though it is more painful for him, to let him grow more. Plus he is having hernia surgery on June 5th, and having big amounts of steroids in his system can mean more complications during surgery. We go back to Rochester on the 12th of June, to have cortisone injections done in his ankles, and both wrists (his wrists are a new place where he has been having a lot of pain, and it has been making it hard to write). That is the plan for the first part of the summer, and we might go up on the amount of his shot too after we see how the injections go. I guess his walker and wheelchair will come in handy now more than ever! But Jax really wants to grow, so he might have to cope with the pain in order to do that. It will help that he's almost done with school and wont have to get up early.
I have another post coming about his choir concert, he did a great job!
When we got into town we found out that Grandma Knick was in the hospital, with a pretty big blood clot in her leg, so we spent some time with her in the hospital that evening. It was fun to see her even though it was no fun for her to be stuck in a hospital room! But at least the Twins were on, right Grandma?!
So, onto what we found out about Jax. His blood tests were not surprising to us at all, they were all elevated, which is why he has been in so much pain these last 2 months. But, the good news outweighed the bad, he had grown an inch since Dec.!! That was really fun to hear, he hasn't grown hardly at all, for more than 2 years. We have been pretty low on steroids for a couple of months, which has helped him do that. Dr. Mason wanted him to stay low on them, even though it is more painful for him, to let him grow more. Plus he is having hernia surgery on June 5th, and having big amounts of steroids in his system can mean more complications during surgery. We go back to Rochester on the 12th of June, to have cortisone injections done in his ankles, and both wrists (his wrists are a new place where he has been having a lot of pain, and it has been making it hard to write). That is the plan for the first part of the summer, and we might go up on the amount of his shot too after we see how the injections go. I guess his walker and wheelchair will come in handy now more than ever! But Jax really wants to grow, so he might have to cope with the pain in order to do that. It will help that he's almost done with school and wont have to get up early.
I have another post coming about his choir concert, he did a great job!
2 comments :
Woo hoo for Jax growing an inch!! That's awesome news!! Keep on growing and I hope that you guys are able to keep the pain under control! We love you guys!!
Hi from Germany,
I found your blog by chance.
I have a special needs boy, too.
My son, Fabian, age 10, is wheelchair bound since he fell from a tree two years ago.
It was a very hard time for all of us after Fabians accident. The moment when the doctor told us, that Fabian is paralyzed and the moment when we must told him that he never walk again, was so terrible. Especially terrible was the day, when Fabian got his first wheelchair. I still cry when I saw him sitting in his wheelchair at the first time.
But Fabian is so brave! I am so proud of him.
Since his accident Fabian visits a school for special needs kids. All other kids in his class are disabled, too. The most kids must use a wheelchair, tree kids can walk with a walker / quad canes.
Every Saturday Fabian visits a sport group for children in wheelchairs. Two hours they play together in their wheelchairs. It is so funny for the kids.
Two month ago he got a new “Spidermann”-wheelchair.
If you are interest I will send you some photos of him before his accident and now in his wheelchair.
I will be glad about a short answer mail.
Best wishes Katja
(Katja.Kretzler@web.de)
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