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.

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.

If you noticed....

If you noticed, I posted a vacation ticker yesterday, saying there were so many days until our trip to Disney World. Well, this is why I put that on.... almost 2 years ago, I got a random phone call, asking if I knew anyone who would benefit from a "Make a Wish". Of course, at that time it was right around when both boys were just diagnosed, and so, I said I have 2 who would love something like that! We got referred to the Sunshine Foundation, and Jaxon was approved for his wish in Feb. of 08'. We were told that there would be a 1 to 2 year wait, and the letter came yesterday in the mail, saying it was time! We are so excited, but it doesn't seem real yet! We spent a lot of time yesterday evening, looking online at all of the parks and attractions, the boys couldn't even sit still! Hayden already has been saying which toys he is going to bring on the trip! Jaxon has been carrying the letter around everywhere, and had to call all his grandparents last night to let them know! With all of the hard days he has been having these last couple of months, this is something wonderful for him to look forward to! He deserves this, with all he has to deal with everyday!

The trip includes everything! Round trip tickets for all 5 of us, lodging, a rental vehicle, three one day passes to the parks, money for food, luggage fees and gas $! The Sunshine foundation owns an area close to Disney World called the "Dream Village". It is a bunch of cottages, swimming pool and even a mini golf course, all handicap accessible and ready for our family! Plus it's just 10 min. from the parks, so it's perfect! You can see what it looks like @ www.sunshinefoundation.com. It is such a cool program, and we are so blessed to be apart of it! It is different than "Make a Wish", because it gives kids wishes who don't necessarily have a life threatening illness. I just can't believe that we get to go! God is so good, He has really been giving us a ton of positives lately! Even though the everyday ups and downs get overwhelming sometimes, God doesn't forget and He wants to bless. Jaxon is always such a light for us, hardly ever complaining and always smiling, this is really exciting for us to watch him receive (it's pretty cool that the rest of us get in on it)! His brother's are going to have such a blast, they have been through a ton too, in their own way!
We are going to be going sometime in August, so we don't have to plan something fun to do this summer, which is a bonus! As you can see by our ticker at the top, we have a little over 3 months to go, but it will fly by I'm sure!

Wheaton friends!

I had a great group of Bible study friends, from Wheaton, that decided to come and visit us in Fergus the other day! They were going to come and see our new house, but I forgot we were getting the pour for the driveway that day and couldn't get into our house, so we met in Fergus, at Applebee's instead. It was so nice of them to take the time to visit, and was so much fun to catch up! We got a couple of hours together, which was really good, considering there were 4 little kids there! The kids did wonderful, and we had a great time! Thanks ladies for coming to see us!

The whole crew!

Just the kids!

Our new purchase!

We purchased a van today!! We have been looking for a little while, found this great deal, and decided to go for it! It is a 2006 Kia Sedona, and we love it! We have been wanting to do this for awhile, because of Jaxon. He has had a really rough couple of months, and it has been really hard to be in the cramped car, right next to his brothers!! He has no room to move around and stretch when he needs to. It is hard to get in and out of the car, and really hard to buckle them up too! Now they each have their own spot, which will be nice for all of them, plus they can actually see out! Jaxon was really excited when we told him we were thinking of doing this! And they were so excited to get it today, it came to us actually! Hayden was not feeling good at all today, he was throwing up and couldn't drive to Perham, where we purchased it. So they were really nice and delivered it to our house! They had our old car to drive back in, because we traded that in for the van.