Grad cont.........

We had a little party for Jonah, after we got home. He wanted chocolate cake, meat, cheese and crackers. He got some money from Grandpa Kever's & Grandma J. A couple books and snacks, from Grandpa & Grandma. And we got him a drawing book. We had lots of fun, and were excited to celebrate Jonah!

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Way to go Jonah!

 

Graduation Day

The last day of school for Jonah, was a pretty special one! He graduated from Kindergarten, and had a big program. They really do it big here in Ashby, it's pretty cute, and fun!

All of the kids walked in to "Summer of 69" , at first just walking, then they paused put their sunglasses on, and danced their way up to stage. It was pretty cute! 

 

Jonah and his teacher, Mrs. Welch

 

Mom, Jonah and Dad

 

Jonah and his friends. Above he is with Ethan, and below he's with Sam H.

 

 

 

Jonah, telling us his favorite memory of kindergarten

 

The kindergarten class sang some great songs!

 

Here is Jonah walking down, with his shades on! He was a little embarrassed, but he did a great job. He got all the way to his seat, on stage, when we heard his classmates remind him to do his dance.....he got to the middle and did some of his break dancing!! It was great, he did such a great job, and everyone clapped for him!

 

They all drew a picture of their favorite activity to do in the summer. Jonah's was fishing!

 

The stage was all decorated, with summer activities, and toys, it was so cute! Mrs. Welch did a great job, with it all! Afterward, they had a little reception upstairs too!

 

Hayden.......

In the middle of the summer catch up blogs, I thought I'd better get you caught up on the medical side of things, cause lots has been going on.
We will start with Hayden, we have been wondering for awhile, whether he has something wrong with his bladder. With him having had Transverse Myelitis, I have seen in all my research, that the bladder, and bowels, are the first things to be affected. He is always wet, and even when I try every half hour, to get him on the potty chair, he is still wet in between. Now that he is 4 1/2, his neurologist finally got what we were saying, and sent us to an urologist. We had that appointment last Tuesday, up in Fargo, and they had him try to pee in a cup, which he did a little, but not very much. Then they scanned his bladder, which was still pretty full. So, his Dr. decided he wanted to do some further testing, which we did on Monday. First, we did an ultrasound of his kidneys, to make sure there was no damage to them. What they were worried about, is because the bladder seems to be mostly full all of the time, it would be putting pressure on the kidney's, and in turn, damaging them. Next we went to have a cystourethrogram, which is a procedure to check and see how he releases his urine. He had to be catheterised, and his bladder filled with a dye, and then they took continuous x-rays of how it was flowing out. Jeremy was right there with him, and I got to watch it all behind the door, so I got to actually see it all too! He maybe released half of it, if that, which wasn't great. With his bladder being filled to the max, he should have voided almost all of it. This is what we hear most times though (when he is on the potty), is just little bits at a time, so it was consistent with what we have seen. 
With all of that, he did such a great job! Luckily, he was giving some nitrous, to clam him down a little, and make him loopy. He told dad, "we should do this all the time", when they were changing in the bathroom, so obviously he was loopy!
We got the results yesterday, and it was some good, and bad news. First, the kidneys are just fine, no damage to them. But they aren't quite sure yet what's going on with the bladder. There is defiantly something wrong, because he isn't voiding, which will eventually damage his kidneys. And there is a pocket, on his bladder, which doesn't need surgery yet, but could the future. This happened because of all of the added pressure of the urine, that isn't being released. There could be 2 things that it could be, one is permanent damage to the bladder, from his Transverse Myelitis, or, it could be dysfunctional voiding. Damage from the TM, would be something we couldn't do anything about, to make it better. And dysfunctional voiding, would still maybe mean cath-ing him 2x's a day, in order to help him learn how to push it all out. Plus, there could be a med, that could help relax his muscles, to allow him to pee. But that med can have some pretty nasty affects, and he would have to be monitored closely, to make sure he isn't retaining urine. 
So with all of that, they wanted to send us down to the U of M, to see a specialist there, and we asked if there is anyway, we could just go to Mayo, since we have so many that we trust there. They seemed fine with that, so we are just waiting on a recommendation from Jaxon's Dr. and then we will get that all rolling. 
I know that is a crazy amount of information for all of you, but this way, I maybe don't have to explain it so many times! I don't even know if it makes any sense, cause we are still trying to process it all out. It has been a little overwhelming, to say the least. Thinking about probably having to cath Hayden twice a day, seems impossible, on top of all we are dealing with already, with Jaxon. All we have been able to do, is give it all over to the One who knows, what we don't! He will give us the strength we need, and the ability to sort this all through, and deal with it! And this isn't surprising either, when you really think about what Hayden went through as a baby! 
Jaxon has been having a couple of good weeks, which we have been so thankful for! He has been playing ball, and loving it! We can tell he is coming into another flare, so the timing of this has been great, cause we are almost done for the summer. He will be having a ton of appointments, the end of July, and starting his new meds. so we are praying that this new stuff, kicks this all right out of him! He has to go off of kineret (his shots), a few weeks before that, so he won't be feeling good, but then his body is all set for the new. We have been really trying to get him as healthy as we can, before the new med. so we know we have done everything we can! We haven't had the energy, or the know how, to do the more natural stuff, but we know we can't be wondering later, if that would have helped, so we are on it now! He is taking lots of good vitamins, and protein, is dairy, sugar, and red meat free, and we are keeping up with his stretches and other things. It feels like a whirl wind, just going grocery shopping, but we know it will be worth it. He's going off of sugar, because it promotes inflammation, dairy because of his stomach (which has been so bad, for so long, and is preventing him from absorbing anything), and red meat because it is hard to digest, and also has promotes inflammation. We will see how it all goes, but he is doing GREAT with it right now! How he can deal with all we are throwing at him, is beyond me, and only from God! But it is a great time to do it now, when he isn't in school. 
So THERE you have IT! Lots of info, but that's what are lives look like, everyday. Thank you for all of the prayers and encouragement, we need it daily! Jeremy and I are really worn out, and feel like we can't breathe, but we will make it, and only with God! I have to keep reminding myself of that, because for the last few days, I am always on the verge of tears. But I know that God wants me, of course He doesn't want me hurting, or feeling overwhelmed, but to rely completely on Him. He never promised us that life would be easy, but He did promise to NEVER leave us, or give us more than we can handle!

Jax, Jonah and Jeremy's last day of school!

Jaxon and Jonah were pretty excited for the last day of school, and looking forward to the summer! Now we have a 3rd & 1st Grader!

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 It was Dad's last day too, of course, and these three guys take such nice pictures together! Don't I have handsome guys in my life?

Hayden had to get in on some pics too, he was kinda feeling left out.

 

Track and Field Day!

Jaxon and Jonah had track and field day, the day before school was out. They had a blast, and each did 4 different events. I can't remember all of them, but Jax did jump rope race, and the 400 m relay, and Jonah did the jump rope race too, and the 100 m dash. They each placed in a few races, and got ribbons. Above is Jaxon, with most of the boys in his class, they are a great bunch! And below, is Jonah with Matson, a buddy in his class.

 

Jonah jump roping, and Jaxon and Trent, 3 legged racing!

 

Shoe throw

 

Jonah with his buddies

Hayden's last day of school!

I had such a great time going to Hayden's class, for his last day! I came just in time to watch him run around in the gym, which is his favorite time of the day. He loves just running around and playing with his pal Richy!

Here are his teachers: Taana (top),  Ethel and Edith (down). They are great with each of the kids, and Hayden loved having them as teachers. He will have one more year with them next year, which he is so excited for!

  

Hayden and Richy

Update on Jax

Jaxon has had a rough couple of weeks! He was scheduled for his hip injections, and other appointments, on May 28th, but we couldn't wait any longer. He has been in so much pain, not sleeping, and we knew that he needed some relief to be able to make it through the last part of school. Plus, summer baseball ( his favorite!) is starting the beginning of June! He has been more honest about how he has been feeling lately too, not just saying he's fine, which he does often, but saying " I really hurt, Mom"!
So, we left on Tuesday morning for an early set of appointments. Dr. Mason's nurse, Fran, worked lots for us to be able to get in early. I really didn't think it would work, cause just setting up the cortisone shots, with the anesthesia is a big deal, but God helped make it happen! We had a x-ray appointment at 4pm, and that didn't take very long at all, so we headed over to Grandma Knick's to pick her up, and go to visit Grandpa. They were doing good, and we had some good laughs together.
The next morning, it was an early start with his cortisone shots in both hips, and right ankle. They all love him around there, and the nurse said that everyone was talking about him, and the fact that he's the best kid around! He does so well with that kinda stuff, he woke up great and we were off to his next appointments. We saw physical and occupational therapy, which was great help. We got new good tips, on how to help him sleep better, things to do to preserve his joints, and new exercises to strengthen his muscles and joints. The last appointment was with Dr. Mason, and it was the hardest! He showed us the x-ray picture first, and even before he started talking, Jeremy and I could see that it was bad! He explained that the hip ball joint, and bone, should look like a smooth, ivory mushroom. Jaxon's right hip didn't look right at all, it is basically bone on bone. There should be spaces between his bones above the hip, and the leg, and there was none. It also should be smooth and white, where Jax's looked bumpy (kinda like coral), and lots of dark spots. Dr. Mason was pretty concerned about it, there is a lot of damage to his hip, because of his disease. So much damage, that he will most likely have to have a hip replacement in high school. We have to wait until then, because they just don't do that surgery that young, and he has to be done growing. Wow, that was hard to hear! We have to start another plan of action asap, because we are getting no where fast! There is a new medication that has just been approved by the FDA, it was made especially for Still's disease, which is Jaxon's type of JRA (you can read more about Jaxon's type of JRA, in an article, on the right hand side, of our blog). It would be a once a month IV infusion, that would have to be done at Mayo. Dr. Mason seems really ready to trying it, we have been talking, and praying about it for awhile, and feel it is the right move. The cortisone shots he just had, should give is a little time, so he can finish school. We will be starting that in July, and seeing how it goes for 3 months, then reevaluating it from there. Meanwhile, we are going to bump up his other meds, just to see if we can get anywhere. We are changing his motrin to naproxen, to see if it helps with his pain. No matter what we do, his hip is going to be giving him pain, because of the damage, so that is where the naproxen comes in.
So that is the low down, I know it is long, but it's so hard to explain, that it just needs to come out, how it is in my mind. Sorry, and thanks for listening to me! We will just take one day at time, and rely on God! We have really nothing else to go on right now, and we do serve a big God, that has everything in His hands! We have to leave it there, everyday.
I want to say "Thank you", to you all, who have been praying for us! We can feel it everyday, and when we feel overwhelmed, we remember that!