Jaxon and Hayden's Medical Story

Monday, October 19, 2009



Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.


I really didn't let my children go outside (only from the house to the van, in the garage), in their shorts, crocks and winter coats. I would never allow them to go outside, in almost nothing, when it is 45 degrees outside. Nope not me.....but it really felt like a heat wave!!

I did have a coat and pants on today, when we went to drop Jaxon off at school, but it was the same thing I wore to bed. So, it wasn't me, who dropped off our heat payment in my pj's, having done nothing to my hair. I always go out looking perfect, yeah right!

And I most certainly did not let my 2 youngest have peanut butter cookies for breakfast. Nope that wasn't me, I always start the day off with a healthy breakfast, cause it is the most important meal of the day! (I just couldn't resist letting them this morning, because they made those cookies with Grandpa Kervers yesterday, and were so proud of them!)

Monday, October 5, 2009




Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.


Well, I certainly did not walk, with my children, up to school (which is right up the hill), in the pouring rain, to watch Monday Night Football. Nope not me, I wouldn't drag my boys up there in the cold and rain, just to watch a little bit of the Big Game. I would be responsible and stay home in our warm, dry home, and listen to the game!

I didn't laugh like crazy, the other day, when my youngest asked one of the funniest questions that I have heard, since becoming a mom. I will tell you the whole story.....first, Hayden has been hurting in the private area, for awhile now. Because of all he's been through, we have had keep and eye on things, and not let things go too long. Second, he also had a dentist appointment this last week too, so that is the set up for our conversation.....Hayden--"Mom, are we going to the dentist?" Me--"No, we are going to make sure your pee pee is okay." Hayden--" Oh, so we are going to a pee pee appointment?" Me--"Yes, I guess." Hayden--"So then Mom, are there going to be pictures of pee pee's at the pee pee appointment?" Me-- no comment, cause I was laughing too hard! NOPE, it was not I who continued to laugh, for way to long, instead of keeping quiet, so my son didn't think he was so funny!! It did make sense, cause in the dentist office, there are tons of pictures of teeth. So really why wouldn't he think he would see the other pictures??

Behind again.....

I am so late on this again, and I am sorry! I should have posted right after we got home, but life was just too crazy. So here we are, a week and a half after his appointments, but I guess it is better than nothing.
Jaxon's appointments were all pretty good, nothing really new or exciting, which is good. We left right after school on Thursday, and got to our hotel around 9pm. Jaxon really wanted to go into the hot tub, so he and I did that, while Jeremy worked out.
We had to be @ Mayo at 7:15am for his injections, which went well. He woke up really fast, and felt pretty good (he's getting use to this by now!!). Dr. Mason put cortisone in both wrists and both knees, he also took some fluid out of both knees, too. We saw Dr. Mason later in the day, he wasn't thrilled with the fact that Jaxon hasn't grown at all, for a while now. He has been on a really low dose of steroids for a while now, and we were hoping that he had stretched a little. He also is on the highest dose of almost all of his medications, and we aren't seeing much from any of them. They are all acting kinda like a band aid, keeps the real bad stuff away, but isn't doing a whole lot to put out the fire. We will just see how it goes these next few months, and take it from there. There is the (sort of) bad news, but there was some good news. Dr. Mason did tell us about a new drug, that hasn't even been released yet. He is going to a convention about it in the next few weeks, and we are hopeful it will be something to help Jax, even more. It is given through an IV, so that will be very different, and it is especially made for Jaxon's type of JRA (Systemic onset). The other good news, that we didn't know until this week, is that the cortisone shots in his knees worked really well. He has been feeling less pain, and they are starting to look like normal knees. Lately they have been so huge and swollen, they are bigger than his thighs, which looks so hurtful! So that is a big YAY for Jax right now!
When we go back this winter (probably in Jan.), we will be seeing an endocrinologist, to get them in the loop about his growth. They probably won't do anything until 4th or 5th grade, but we need to have them in on this, to make sure we are doing everything we can for him. We will also do any injections that he needs, these injections will be a regular thing for him now. By doing these, he won't have to go up on steroids, therefore he will have more chance to grow.
That's about all from his appointments, we didn't get home until 9pm or so, because of traffic....it was horrible! Thanks to all of you who prayed for Jaxon, we are so blessed to have you and God, on our side! My volleyball team prayed for him at their game on Thursday, and dedicated their game to him, he felt pretty special!!!

Thursday, September 24, 2009

No Pic Post

I should probably write a quick up-date on our lives, while I am at home alone, and have the time. It has been a crazy start to the school year, we have been running like crazy, just like everyone else, I'm sure!!
Volleyball has kept me busy, it's been a ton of fun, and the season is already half over, it goes so fast! We have a great bunch a girls this year, they are a lot of fun.
Jeremy has been pretty tired each evening, after a day of 25 first graders! They are a lively bunch of kids, but I'm sure they will all get the hang of things soon, and start settling down. He also turned 30 on the 18th!! A big birthday, for him. I was going to try to blog about it and add pics, but it has just been way to crazy. So, HAPPY Belated 30th Birthday to my hubby!
Jax has had a hard start to his school year. He has been in his wheelchair most days, at least to start the day. He usually starts to feel better around lunch time and can move around a little better. I guess it caught Jeremy and I off guard a little bit. We know he hurts during the summer, but we don't have to push him in the morning, and he gets plenty of rest. So when school started, we really noticed how much pain he actually is in, especially in the morning. His teacher is so understanding and helpful, which has been a huge blessing! He loves school, and does really well, but it's hard for him to want to go in the mornings, when he's in so much pain! Today we leave for Rochester, after school. He has 3 appointments tomorrow starting @ 7am. First, he has his cortisone injections right away @ 7am. Then, he has an appointment with a hand therapist, to make sure we are doing all we can for his hands. This is a new part of his body that has been affected, recently. His wrists and fingers are really hurting, and that is affecting school, with all the writing he does now. So, this will be good help for him! Our last appointment is with Dr. Mason, his rheumatologist. It will be a really quick, but packed trip. I am so glad that Jeremy is able to go with us, it would be so hard to do these trip without him!
On to Jonah and Hayden, they have been doing great in school these last few weeks. Jonah loves kindergarten, and is so excited to learn to read! That is something he has been looking forward to all summer.
Hayden has had a little bit of a hard time with school, but is coming around. He has been crying when I leave, which is so hard for me! He is really the only one out of the three, who has been this way. Jaxon and Jonah really didn't care that I left them, but Hayden is just a little different. Maybe it's because he's the baby, or because he has been through a lot as a little one, I don't know, but it is just as hard on me, as it is on him!! The last few days has been lots better.
Now you are updated, and I will have more info for you, after all Jaxon's appointments.

Tuesday, September 8, 2009

First Day of School......2009-2010

Here are my 3 handsome boys, all set for their first day of school! I can't believe that they all are going on the same day! It's a hard day for mom, but I can't help be happy for them, when they are so excited!
Jaxon is starting 2nd grade

Jonah is staring Kindergarten. He will be going Tues./Thurs. and every other Friday, until November. After Nov. 1st, he will be going all day, everyday.

My little baby is a big boy today.....He started preschool, and will be going Tues./ Thurs. from 8:30am to 12pm. He was really excited, and ready to go this morning, which was great, because he was saying he wasn't going to go these last few days. He also fell and hit his eye last night before bed, and unfortunately woke up with a swollen/black eye. Although, in these pics you can't really tell! But that is apart of being a boy, I guess!

They are ready to go...I'm sure they're going to have a great year!

Monday, September 7, 2009

FYI......

I'm sure you are all amazed that I finally got our Florida pics posted! It took way longer than I thought it would. With volleyball practice, games, and getting ready for school, it has been a crazy couple of weeks.
I just wanted to say, that for some reason, my posts went up wrong. I have Day 1, followed by Day 5, I don't know what happened??? So, you will get all our pics, but they are just a little out of order, sorry! Hope you enjoy the pics though!

Day # 1 ~ Flying to Florida

Our big trip is here!! Can you believe it? We woke up really early to drive from our house to the Minneapolis airport, for our 10 am flight. My aunt and uncle met us there to take our van to there house for the weekend! It worked out perfectly, thanks Joel and Charlene!
Here's our gate...The boys were so excited to get on the plane!

Dad and Hayden, waiting to board.
Jaxon relaxing
Grandpa and Jonah being silly
Grandma and Jax

The boys had to sit in their own row, on our way there. I was sitting across the aisle and Jeremy was a couple rows back.
This is when we were landing, Jonah's ears were really hurting, as you can tell by his face!
We arrived and got to ride a train, to get our luggage.



Our Dream Village Cottage....The Enchanted Forest

Our living room. All of the cool pictures you see, are hand painted by volunteers of the Sunshine foundation! They did such a great job, pretty cool huh??





Each of the cottages had a different theme, ours was snow white and the 7 dwarves. So there was a little door to get into the boys room. They liked using that door!


Jer's and my room

The boy's room. These two beds had beds underneath too, so Hayden had his own bed.

Our little kitchen, which was great, cause we bought cereal and bread, for breakfast in the mornings, plus we had room to have cold waters for the day too!

Our bathroom