Finally......

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!

A good day!!!

Jaxon me up this morning already showered....it's good day!
Since Thursday, he has been waking up on and off, during the night and early morning, unable to move and pretty miserable. But you could tell in his face this morning, he was feeling better. His cheeks weren't red, he was smiling, and he didn't have a fever! It's a great day!
Yesterday, when we were trying to get him to try school, I said that if he felt icky today, but still wanted to go on the field trip, he wouldn't be able to. He actually said that he couldn't go, because he would hurt too much! You know he doesn't feel good then, he has been so excited for this trip.
That's what's so crazy about this disease, one day(or days) you could be unable to walk, then the next you are almost a normal little boy. It's got to be a little confusing for him, I know it is for Jeremy and I. We wake up every morning wondering what Jaxon will be feeling like today? I need to get better at waking up and thanking God for whatever the day brings, instead of being anxious. God has given us so much, and most of the time I try to go through the day on my own strength. Why??? It takes a bit, to just give it to Him....that makes it harder, I shouldn't hesitate! It amazes me how He is always there, even when you try to do it on your own, and don't rely on Him! Thank you all for the prayers and encouragement! I was pretty nervous these last few days and feeling low, I know Jaxon was feeling the same. But those prayers always lift us, I feel it often!

We did go to the Dr. about his hernia, yesterday. He does have one and will have to have surgery soon. She thought we could wait until summer though. She didn't seem too worried about all the meds he is on either, which was a relief! He will just have to be monitored a little bit more. So that was all good news, but we still don't know why it is hurting to go to the bathroom. We can get that figured out on Friday with Dr. Mason.

Thanks again for praying!

Will you pray?

I am trying to be better at updating this, but it's hard on a week like this!
Jaxon has had a rough couple of days, and it takes a ton of energy out of him, as well as the rest of us. We've got him down to 2 ml's of steroids, we also went up on his Kineret shot. That way, we were hoping to stay lower on the steroids, so he could grow some. But it doesn't seem to be helping. It always starts off looking like it is working great, but then he'll have a big flare, like the one he's been having since Thursday night. He is running a 103.5 deg. temp today, which zaps him of everything! This flare is a really long one, usually he has it for a couple of days, then breaks out, but not this time. He has missed school Friday, Monday and today. He is pretty sad about it too, especially today, because he has his big field trip tomorrow. He knows that if he feels like this, he wont be able to go! He has been looking forward to going for a long time, plus his dad is going too! Would you pray that he would feel good enough to go tomorrow?
We are also going to the Dr. today for a pre-surgery check. Jaxon has a hernia that we need to deal with. We are hoping that we can wait until school is out, but it's making it hurt to go to the bathroom, so I'm not sure we will be able to wait. We are a little nervous about surgery, because of all the meds. he is on, and how he will recover, even though it is a pretty common surgery. Will you pray that the Dr.'s make the right decisions for Jax?
We go to see Dr. Mason on Friday, which will be good. We will be able to see what else we can do for Jaxon and see what he says about his hernia. We just have that one appointment, which is awesome! I makes for a quick trip.
What's crazy is that we come back to the last full week of school! Their last week is short because of Memorial Day, then they get out @ 1pm on Friday the 29th. I can't believe that they are almost done, we are all looking forward to summer!
I will update again after our appointments this week. Thanks for all of your prayers, I know that's why Jaxon has made it through what he has already! God is always there, even when things seem impossible.