Jaxon and Hayden's Medical Story

Thursday, April 23, 2009

The Driveway....

Before the house got a driveway....
before the driveway, @ the front door...

After we got our driveway on Tuesday....
It's bigger than we thought it would be!
They did a great job on the pour! We stayed in Fergus the night they poured, because we couldn't get in and out. So, it was a big change when we got home on Wednesday, the boys were pretty excited to be able to walk and run on it! They will be able ride bikes soon! We can't drive on it for awhile, or we would crack it, but is still an exciting thing!! They also worked on the yard too, they will be able to lay the sod soon, then our house will almost be complete!

The boys at play....



This post is a little late, as far as the dates these pics were taken, but I saw these when I was going through pictures for my other posts, and thought I would post them anyway!
Jaxon got his walker in the mail the other week and it came in a huge box. They had such a blast that day playing in the box! I don't think we should buy another toy, just get them a big box once and awhile!! There was also a ton of plastic poppers that the boys ran on, they ran on it and into the box where there was more. It was a loud afternoon, but a ton of fun for them!

Friday, April 17, 2009

The last few weeks....

Well, it has been awhile since I have posted anything, so I thought I'd better get you all up to date! Not that there has been a lot you have missed, but some of you would want to know how we have been doing! I will try to keep this up better so that you all know what is going on at least week be week!
The reason I haven't written this earlier is really because of Jaxon. He has had a tough couple of weeks, and I haven't had any energy to do anything. Easter week and weekend were the worst he has been in a long time! He stayed home from school on Thursday, and hardly moved a muscle all day! I had to help him change positions every few minutes cause he would get uncomfortable, but couldn't move himself. He was like that all night Wed./Thurs. morning, and it lasted until about 3pm Thrusday. He did want to go to church that night with his wheel chair, so that was good! We had a nice dinner at church, then our service, and dessert at the end. After the service he really started to get bad again, you could see it all over his face! We, meaning Jax and I, hardly slept that night either, he had a high fever(which is part of his JRA) and was really hurting and uncomfortable again. He has been having weekends like this now for over a month. It seems like he can try to make it through the school week, but then has no energy for the weekend!
He did have a better week this week, which was relieving! He was sore and stiff most mornings but wanted to go to school! He has been having Phys. Ed outside this week, playing baseball, so that was a good motivator. Sometimes he needs things like that to get him going, otherwise it is just too hard! He also had another change this week, we talked to his Dr. about the frequent pain that he has been having, and they decided to up his Kineret shot. He was only getting half of an adult dose, so we just added a little to that. He doesn't have to get two shots, we just don't have to waste so much of the shot! We usually squirt out half of the liquid to get him the right amount, now it's just a little! We are hoping that this will help his pain so that we can stay down where we are at on his steroids. He has been down pretty far on those now for about a month, so we are hoping that he can start growing!
He had a rough night last night again, he tossed and turned, needed help getting to the bathroom, and just moaned and groaned all night! He woke up needing dad to carry him out to the couch where he was until he could take a nap! He did come outside, in his wheelchair for little bit, while we cleaned and organized our garage! We will see how he is feeling after his snooze here, sometimes that helps!
Otherwise there isn't that much else going on around here. That is enough though, it seems, cause Jeremy and I seem to always be tired! It is hard to have the roller coaster feeling with Jaxon everyday, never knowing what the next day will bring! We have to remind each other, and Jaxon, that we can't handle it all by ourselves, but need to lean on Him. Otherwise we would never be able to make it through these kind of weeks! God is always there, even when it seems impossible! We can see it often in the way Jaxon reacts to these hard days, he really never complains and usually has a smile on his face, which can only be God! I know that if I was in the amount of pain Jaxon is in, it would be really hard for me to have a good attitude! I really believe that we see God giving Jaxon and us extra grace, and strength, even in these hard times!
One good piece of information for you though, is that we are getting our driveway poured this Tuesday!! I am so excited! It has been fine without it, but annoying at the same time! We can't get into our garage, with the cars, so if Jaxon has a hard day we have to carry him up our bridge (as the boys call it). It will be so nice when we can just drive in so he can get out and into the house without walking very far!
So that's the low down, and I will try to get better at posting more often so that you don't have to read a book all at once!

Tuesday, March 31, 2009

Just so you know.....

I am not changing my blog background a ton, just because.......
I wanted to find something a little more on the boy side, and went with the frogs one day a couple of weeks ago. Well, since then Jeremy has been asking me constantly, if I would give up the frogs!! I don't know why he didn't like it at all, but that's what brings us to the sports theme, which I guess, is more like my family anyways! Someday, I might just have to put some girly stuff on here just to see if I get a reaction too!
Anyways... since I don't want to do a whole other post, here are some pics of Amber's (soon to be my sis-in-law) birthday. We had the Knick's, Nathan, Amber and her mom Barb over for supper and dessert, on Saturday. We had a blast,
and it was a great way to get to know Amber and her mom a little more!



Jaxon and Jonah being as silly as always!!

Monday, March 30, 2009

Grandma's 80th Birthday

Here we all are....this picture turned out so good! We all are looking at the camera and have our eyes open. That is pretty good when you have 6 younger kids around!! We had a Big Birthday Bash for my Grandma Rogness last weekend. She had such a fun time and I'm sure loved having all her kids and their families there! We started off at the Light and Life Auditorium, where there was an open house. Then the "adults" took Grandma to out for dinner, while the rest of us hung out at my mom and dad's and had pizza! When they got back we had desserts (my mom's, which were a hit!!) and opened gifts! It was a great day with Grandma and the rest of the family!!
I love you Grandma!!
Great Grandma!
I cropped the big picture of us because it was such a great one of our family!!
Opening gifts at Mom and Dad's
Jonah loves to play with his Grandpa!!
My handsome nephew, Matthew!
She got lots of really nice gifts and cards, but the best gift was a book of pictures! It had old pics of the kids growing up, pictures of Grandma and Grandpa 's wedding, and pictures of each of her children and their families! Plus many more! It turned out great thanks to Caristy, Marcheta, and Jewel! You did a great job guys!!

The party at Light and Life....
her cake and flowers
Grandma and her kids.
Dad and Mom with Grandma.

The cousins! They are all so cute!!



Jonah, Hayden and Matti walked around almost all afternoon like this, holding hands, with Jaxon wheeling along too!

Wednesday, March 25, 2009

Jaxon update, and more.....

We got Jaxon's wheelchair on Friday(3/21). We went up to Fargo and had a fitting appointment for him, and had a couple of appointments for Hayden too. He got to pick out the orange color, which he loves! His doctors have wanted him to get this for quite awhile now, and it has been a long process. They think this will help him be able to get around on his own more. When he is having a flare, and not walking at all, this will be really helpful for him. He will be able to go to school on the days when we would keep him home. Church will be a lot easier too! We had my grandma's 80th birthday on Saturday and he was hurting a ton. He had a really tough weekend, but he was able to get around and hang out with his brothers and cousin. It was good practice too! He is so good at getting around, he is really cautious. The only hard thing is that the other 2 boys have wanted to be on there constantly! We also just found out today that he was approved for his walker too. He should get that next week, which will be great to have. He will use the walker at home mostly and the wheelchair will be more for school, church and other things.
We also had an appointment for Hayden and Jonah in these last few days too. I know, I know...... they just don't end. Hayden had his braces checked in Fargo on Friday, and they looked good. He will be able to be in them until the summer at least. Then he might be able to go down to something a little smaller. We will see what his strength is then. He also had his neurology check-up and he really is doing great! He is on a pain med. that helps his sleep. (we have had a ton of problems with that, and that is one of the residual affects from the Transverse Myelitis) We are also going to get a physical and occupational therapy evaluations to make sure he is on track. He has been sick this week with a cold and a really bad ear infection. We haven't had much sleep at all this week, so that is why this is getting out a little late!
On to Jonah... he has had a lot of pain in his feet lately, which for a long time we just thought was growing. But it wakes him up at night and he has been complaining about it often, so a couple of months ago, I brought him in. They looked at his heels and they are both turned in. That is the cause of the pain, so today he was casted for orthotics that will just slip into his shoe. It will just even out his feet and help him feel much better. I guess he just didn't want to be left out!!
Well that is the scoop right now! This blog is a great way to be able to share with all of you what is happening in our lives! Thanks to all who think and pray for us!! I will post more pics of Grandma's b-day later!


Saturday, March 14, 2009

Once again....Hair----No hair!!

The before pic!!
Jonah has been begging me for a few days now to shave his hair like daddy! He just wouldn't give it up, so daddy gave in! He has been particularly sensitive to what Jesse is going through. He is always wanting to pray for Jesse and wanted to be like dad and support Jesse by shaving his head! It was pretty cute!! Hayden wanted to join in the fun too, but Jax decided to keep his hair!
Here we go, with Jonah!

This is a good look! We can use this later in life!

All done!

Here goes Hayden
!
Again, a good look!

All done with #2


Aren't they cute together???


The finished product!