Christmas Fun

We will start off the Christmas season pictures with my Viking boys, being silly! They love the Vikings, and they also love to be silly!

 

Brotherly love

Spiderman Vikings? 

Okay.....see what I mean, silly? 

Christmas Program

Jaxon, Jonah and Hayden had their Christmas Concert at church, early in December. They were apart of the whole Sunday morning service, and they all did SO good! They looked pretty handsome too, if you ask me!

 

Home Depot boys

Silly faces

Such cute boys

Grandpa and Grandma take them to Home Depot once a month do a wood working craft. They love it, and make great things! 

Christmas with the Knick's

 

Uncle Nathan handmade these Star Wars Lego characters! They each had a different colored light saber, and color of guy. He also made these able to take apart,which is really cool too! You couldn't ask for a cooler gift, Thanks Uncle Nathan, and Aunt Amber!

We celebrated Christmas on Sunday with the Knick's! 

We came in the morning, and opened up presents right away, of course!

We had a great lunch, and just hung out all day, it was pretty relaxing. We played some games together in the evening, which the boys loved too! It was a great day!

Family Photos

We took some family pictures on the Sunday of the boy's Christmas concert. They turned out pretty good, which sometimes doesn't happen! 

Before the big snowstorm that hit during Christmas break, we got outside to have some fun....it was 35 degrees out, and the snow was perfect for snowmen and forts! The boys had a blast! They even helped shovel!

We celebrated Christmas with Grandma and Grandpa, Jon and Angi, and the kids on Christmas Eve. It was a great day, first the kids opened their stockings, which of course was a big hit! Then we ate brunch, and hung around, till it was time to go to church. The Christmas Eve service was wonderful, and the boys were so excited to sing all of the Christmas carols (Jonah says it's his favorite part of Christmas!). When we got home, we ate a huge meal, which was so good of course, because Mom NEVER makes anything that isn't good! Then it was present time.....the waiting was finally over!

The stockings all ready....

 

Jon, holding Morghan(2), Angi holding Matthew(4), and Joanna(13, and way taller than me!)

Morghan all handsome for Church. Isn't he just the cutest? I sure think so :)

Matti's getting so big!

Hayden got something that he has wanted forEVER! As you can see by his face, he is pretty happy! 

Jaxon's medical update

It has been a long time since we've updated anything, and there seems to always be something to tell, so we are pretty behind. Last time I posted anything, it was basically the beginning of school, and Jaxon had started his new medication. He switched from 2 of his shots a day, to an infusion once a month. It is a new medication, that hasn't been tested in the States (on kids). He had 3 infusions in Rochester, and they went really well. His blood work was amazing, it changed very quickly, and was as normal as it has been in over 4 years. He was still on steroids, but his Dr. felt like we could go down pretty quickly on those. After those 1st few ones we started having the infusions in Fergus, at the Cancer Center, which was so nice! Jaxon had a great start to the school year, then fast forward a couple months.........
We are pretty much back to where we were before, the roller coaster, but his blood work has still been holding pretty well. He has been in his wheelchair at school most days, and has been in quite a bit of pain. He has had a couple big deals also, that have set him back. Before our last trip to Rochester (right before Christmas) had an eye appointment, and they saw some Optic Nerve swelling. I wrote a little thing for facebook, so here is that post...We went to Fergus for Jaxon's yearly eye Dr. appointment, yesterday. He had great vision, but the doc saw swelling of his optic nerve, called pailledema. I really had no clue what he was talking about, but he was concerned and called a few people, and Jax's doctor in Rochester. We had an MRI right away, and did some blood work. When I got home I started to do some research, and I am just so glad that I didn't know what it "might" be while I was driving home, in the storm! We did hear last night that the optic nerve on both of his eyes were swollen, and that usually means brain tumor, or some other serious infection, but both of those were ruled out! THANK GOD!! I still didn't really have answers as to what that means, so I called to talk to his Dr. in Rochester. He personally called me back this evening, (which NEVER happens, and made me feel SO much better!) and said that he felt it was rare, but the roller coaster of steroid use is what is probably causing this, and going up again will help bring the swelling down. He didn't think it was the JRA inflaming his eyes, which I was concerned about! We will have to go to the eye doc again, now every few weeks for awhile to see if the pressure and swelling go down. We will also just have to add this to another thing we need to keep on top of! He isn't in any pain, right now at all. He was having headaches, but those have been less these last few days. But he does get blurry, or black out vision, that just lasts for a couple of seconds, especially when he is just getting up from sitting or standing. I feel a big relief now that I talked to Dr. Mason, and if we keep it under close control, it shouldn't affect his vision, right now! Thank you all, for all of your prayers, and encouraging comments! I don't really like to complain on here, because it just isn't necessary, but it so helped just to have your words, when I was obsessing, and worrying about it all day today, I went to those and really was blessed! He has been in his wheelchair, and in quite a bit of pain these last 2 weeks, that is disheartening for him most of all, but us as parents too. Watching him go from feeling really good, and pretty much a normal boy, to being in lots of pain is just plain hard, so prayer is wonderful!

We had appointments in Rochester last Tuesday and Wednesday, for Jaxon. It's amazing that we got down there, but we did, even though it took forever! After seeing the scans and pictures of Jaxon's eyes, his Dr. wants us to investigate further, next time we come to Rochester, which is pushed up to 6 weeks now. We will be seeing a neurologist, and probably having a spinal tap done. He said that he has never seen the eyes become affected like this and needs to be sure that there isn't some underlying issue going on. The great part about that, is that we know it's not a tumor, but it hasn't resolved as quickly as they would have liked! He has been having lots of headaches over Christmas, at least once a day, since Christmas Eve, and that wasn't sitting well with me, so I called his Eye doc in Fergus, just to make sure that was normal (wanted to make sure before our blizzard hit!!). They wanted him to come in and check his vision, and see if the swelling had got any worse. His vision is fine, and his nerve looked swollen, but maybe a little better, which is good. But his doc said that he really felt he had an underlying issue (something that's not related to steroid use). So he too recommended having a spinal tap done, which will show the pressure of the cervical spinal fluid, in his brain. If that is high, we know what is going on, and it could be a chronic thing, but in doing that, it will also relieve some of the pressure. Anyways, it's something that will be ongoing, and need to be closely checked on, if that's indeed what is going on! I know that again, this is a lot of information, but sometimes it's just easier to get it down so friends and family can read what's going on! I found a web page that explains it really easily, so you can read it if you want.

http://www.drugs.com/health-guide/optic-nerve-swelling-papilledema.html

So that's the whole scoop of his eye situation, these last few weeks. We went to see the opthamologist last week because he was getting nauseous while he was reading. But his optic nerves looked pretty good! It could come back, but for now, that area is back to pretty much normal!
Then last week he was having a great start to the week, but he fell at recess, and landed on his hip really hard. He didn't do a whole lot after that, and we had do have an x-ray just to make sure he didn't break anything (which he didn't)!
It has kinda been one thing or another, but he always has such a great attitude, and is ALWAYS smiling! 
Well there you have it, it's long but it is pretty involved!

After WAY too much time.....

Sorry, everyone!!! I have been SO bad at keeping this updated lately! I am going to get back on track, wont be able to cover everything in the months that have passed, but I will be doing a little recap! There has been lots going on, and we have been WAY too busy (as usual)! So I will try to do a little better, now that I have actually written on here! I know some of you are still praying for us, even though I haven't kept you up to date....and for that we are so grateful! So stay tuned, there will be more coming......

Catch up time again....4th of July!

Well, here I am again.....really behind on posts! I basically missed the entire month of August, but it was really too busy to even remember, let alone take any pictures. I wanted to post these, because we had such a fun 4th of July, and I never got them up! 

Thanks to our wonderful hosts, we ate really well, and had lots of laughs together! 

First, we celebrated Judi's birthday, with her gifts, and watched a slide show of Nathan and Amber's vacation. They got some beautiful shots!

 

 

Amber just graduated from massage therapy school, and was working on some of us, so Jonah thought he needed a massage too (and of course, Amber was a great aunt, and gave him one!).

 

 Next we ate, then played a lot of games outside!

N

 

Grandpa brought lots of fun fireworks to try out, and the guys had a blast with those, for about an hour! The older guys, I should say....because the younger ones were a little scared, except maybe for Hayden. Jeremy, Nathan and Kevin were in their glory!

 

A dad and son, bonding moment.....awww isn't it cute?

 

Of course, we had to have smores!!

 

And have fun with sparklers!

 

When it got dark outside, we headed over to the lake to watch fireworks! They do a great job in Alex, and we had a great view. Thanks Nathan and Amber, for a great day!

Not the news we wanted........

 U of M, the site of Hayden's appointments. The 1st one was in the Mayo Building, kinda weird, since that is where Jaxon goes for his Dr.'s in Rochester!

These were taken during Hayden's urodynamics test. He did such a great job, and hardly moved a muscle! The urodynamics test was pretty intense, he had to be catheterized in the bladder and bowls, then they filled him with fluids, and watched how his bladder reacted to it, and how he voided. Not very fun, but he was amazing!

 

We stayed in Mpls. that night, because we had appointments in the morning. We went out to eat, walked around the mall for a little bit. And of course, Hayden wanted to go swimming, so we did that too! When we were getting ready for bed, Hayden found "The Book of Mormon", and was intent on reading it. He held onto it all night, it was pretty funny! Here he had on Grandma's glasses too!

 

Here are pics of us at Hayden's appointments on Tuesday. Hayden was being silly!

 f

So here is the scoop on what we found out these last few days.....

The urodynamics test showed not such great news, his bladder isn't able to hold as much as it should, and when it is full, the pressure in his bladder, is really high. For his age, the pressure should be 10 or lower, and he was consistently at 40, with it sometimes going as high as 60. Having pressure like that, will cause kidney damage, and diverticulums (which are little pockets on the bladder, from excess pressure). He also has really poor flow, and voiding issues. This is all a result of damage from his Transverse Myelitis, and we were told to be prepared that this would affect the rest of his life. 

The next day, we met with the same Dr. who did the testing, and a pediatric urologist. They told us that they wanted Hayden to start some medication, that will help his bladder relax and empty. It is a timed released pill, that should really help him be able to void. We also will have to catheterise him at least 2 x's a day, maybe more. So we were asked to stay, so I could learn how to do this for him. I was so nervous, and he was pretty freaked out too! But really it went so well, he did great, and it wasn't as bad as I thought it would be! I also did it last night, and this morning, so I am becoming a natural! We think that he doesn't have total sensation down there, so that makes it a little easier, as well :) She said that it will barely faze him, in a week or so. 

Thank you all for your prayers, they mean so much! Please keep us in your prayers these next few weeks, as we work on this, and try to get him to swallow a big pill! It sounds like we won't have to go back for another 6 months, so that's great!