It's a roller coaster ride!

When I look back to all that our family has been through in these last few years, the only word that comes to mind is roller coaster...and it still seems to be that we are are riding it. We all have had a rough last few months, Jax having to actually go through the issues that have been playing havoc on his body, but also the rest of us who have had to watch him!

 This last week has been a great week for him, considering where he was in the middle of January! He had been in a bad flare, hardly moving around because of pain (especially in his right hip). But this last week he has hardly had any pain in his joints...which is kinda crazy considering he is on NO medication right now, and the icky weather we have been having NON stop! His eyes are brighter, and has more energy than he usually does. He was up at school for his hour of tutoring all 4 days last week, and this morning he is trying the morning up at school!! Of course this doesn't come easily, he is very anxious about going, it takes long talks and lots of encouragement to get him up there, but he is DOING it, and we are all encouraged by this! It would be so great if he could at least get in a few hours a day just for his psyche. I can't imagine what starting 6th grade next year would be like for him, having missed 3-4 months of 5th grade. Talk about being anxious!! We are making sure we don't take this for granted, trying to just enjoy this up swing for him and helping each other not worry about the future. That is a hard thing to do sometimes, especially for me...I feel like I am always preparing myself for the next wave, when I need to relax in the good times and be thankful for them. God knows when we need the break, and He also wants us to trust in Him for the future! 

I want to thank each of you for the constant prayer, he is where he is today because of the wonderful people in his life praying for him. We have awesome support from our family, church, Ashby community, and friends! 

Jaxon and Hayden's Medical Story

Jaxon and Hayden were both diagnosed with 2 rare autoimmune disorders in the same month in August 2006. It was a whirlwind then, and seems to be one still. But no matter what comes our way, we try to remember what God promises us everyday..."We can do ALL things through Christ who strengthens us."~Philp. 4:13.

Jaxon started his disease at age 4 with high spiking fevers (105-107 degrees), that would spike usually 2 times a day, and a strange rash that would come and go on his entire body. We watched it for a couple of weeks, then were referred to Mayo Clinic for further testing. After going through every test possible, they diagnosed him with Still 's Disease, which is a rare form of Juvenile Rheumatoid Arthritis. It is systemic, meaning that it can affect all parts of his body including his inner organs. He has been a very hard case for his pediatric rheumatologist, Dr. Mason. We have been through a ton of medicines over the last 8 years with the last one working the best. He has been on many different doses of prednisone, and other meds that have had many side effects on his body. The most obvious has been what the prednisone has done to his growth rate. He hasn't grown much in the last 5 years, being in only the 3rd percentile in both height and weight. He has a monthly infusion at the Cancer Center in Fergus Falls, and it keeps his blood markers looking pretty good, but we know that it is just a bandaid to what is still going on inside. He has injections of steroids directly into his worst joints about every 3 months at Mayo. His worst joints are both of his hips (the right one is permanently damaged, and worse than the left), both of his knees and usually both of his ankles. He has had lots of problems with his stomach too, dating back to even infancy, so that is something else he takes daily medication for (Inflammatory Bowel Disease).
Even with all of this he has been in school most of the time, missing some days due to a bad flare, or a trip to Rochester. If he is in pain he uses his wheelchair or walker to make it through the day. His classmates and teachers are always so helpful and caring.
Since the beginning of January 2014 he has had some other issues that have really been concerning and hard to watch. We haven't yet completely figured out what is going on or why, but he has had increased inner cranial pressure, from his body producing either too much cerebral spinal fluid or not being able to filter it correctly. He has been very lethargic, dizzy, seeing double, confused, hardly talking (and when he does talk it is very quiet and slow), having bad headaches, and just all around feeling crummy. At the beginning we had him try school, then half days, or even a couple hours, but he would end up in the nurses office sleeping after a little over an hour, so he has been home now for over 2 months. He has tried to keep up with his school work, but it has been hard for him to even concentrate or have energy for a little bit of the day. He even has a hard time being around his brothers, or going anywhere. He mostly just sits around and either reads, plays video games, watches movies and sleeps. He usually is taking a nap almost everyday and then is ready by 7pm to go to bed. For awhile there he hardly had enough energy to hold his mouth shut during the day.
We have been to Mayo once or twice a month since the beginning of January, seeing not only his rheumatologist, but his endocrinologist (because of problems with his adrenals not giving his body what it needs), and a neurologist. He has had 3 MRI's, and 2 spinal taps (one sedated, one with out sedation), which have shown us an unusually high pressure in his brain. He has tried some medications to slow the production of the fluid in and around his brain, but they didn't seem to help at all. They are trying to figure out why this is going on in his system, but haven't figured it out yet, and are trying to do everything they can to get that pressure under control without having to do surgery. So for right now he is off almost all of his meds. even the monthly infusion for his Still's disease, to see if any of those have triggered this increased pressure. He is scheduled to have another spinal tap without sedation on May 15th, and appointments with each of the doctors then as well.

Hayden was almost 9 months old when he was diagnosed with Transverse Myelitis, which is a VERY rare auto immune disease that comes from a virus (like a cold, or the flu) turning into an antibody that attacked his spine. It almost looked like his spine was in a bad accident or something on the MRI with the amount of his spine that was affected. He was paralyzed from the chest down, and was given a high dose of steroids almost right away. We stayed in the hospital for 12 days, with multiple visits to the neurologist, MRI's and physical therapy afterwards. He made a wonderful recovery from what we saw at first, growing and walking at a normal age. He had some residual effects at first in his legs, especially his ankles, and used braces to help him walk. But eventually he has grown out of those, and has done SO well in the walking, running, jumping area it's really a miracle!
A couple of years ago when we started trying to train him, it just wasn't working and we were referred to a urologist in the Cities. They diagnosed him with neurogenic bladder, and we started catheterizing him 4 times a day, and he was also put on some meds. He did just fine with this, but was still wet all of the time, so we did some more testing as he got older and found out that his bladder really hadn't grown at all since the Transverse Myelitis attack at 8 months. His bladder was super little for his size, and that was why he was leaking all of the time. So in August of 2012 he went thru a bladder augmentation surgery at Children's hospital, in Minneapolis. They used 14 inches of his small bowel to make his bladder bigger. They also used his appendix to make a tube from his belly button to his bladder for an easier access for cath-ing. He was in the hospital for 10 days, and a couple weeks of recovery at home. After that surgery he seemed to have more bladder infections than ever before (about 20 in that first year), and was still having problems staying dry, so we decided to get a second opinion at Mayo clinic. He was seen and put on 2 medications that we hadn't even heard of. One is something that helps break up the mucus in his bladder that is produced by the small intestine, and one is just an antibiotic that hangs out in his bladder overnight and keeps infection away. He has done SO much better as far as the infections go, but the leaking is still a problem. We had a bunch of other tests done at the end of January, and he still has some issues with the lower part of his bladder, and maybe the augmentation itself. So at the end of July he will be having another surgery to repair that and his appendix site (because of lots of bleeding from that area). He will likely be in the hospital for at least a week, maybe more depending on how much work they need to do in his bladder. He will also have a couple weeks of recovery at home, with catheters staying in until things heal. Hopefully this will lve the leaking problem, and he will be able to be a pretty normal kid from there on out.

Jaxon Update

We got back from Rochester at a great time on Wednesday, after having just one appointment at 7:45am, and were able to surprise the boys by being home when they got done with school, they were pretty happy that we made it like they were hoping we would :)
These posts are getting a little hard to write, because there isn't a ton to tell, and yet there is all at the same time. I have no problem writing them once I get started, but it seems like every time I get back from one of these trips, I just am more exhausted than the last time. I was SO happy to have Jeremy there with us this time though, it makes such a HUGE difference to be able to just come home with him knowing all that is going on instead of having to explain it all. I really feel like he took some of the burden that was weighing on my shoulders, just by being there and knowing exactly what went on. I know he is glad to have heard everything first hand, and not from an over intense mother/wife :) Because of basketball season I have gone down to Rochester with out him a lot these last few months, and I think not having him along has caught up with me (physically, mentally and emotionally). Not that having my mom or Jill along hasn't been amazing help, but I guess I have just realized that we are a pretty great team as husband and wife, and as parents! I am thankful for him as a husband and a father, he brings so many good qualities to my life (and our boy's lives) that I don't have. God gave me a pretty awesome guy, if I do say so myself!
Okay...enough mushy stuff, right??
On to Jaxon! As always, we started off our trip trying to beat a blizzard, which we actually did. We hit some heavy rain a couple of times, but that is it! Ashby got quite a bit of snow, after a thunderstorm that even scared Hayden enough to have to call me.
We had to stay up late that night and get up early so Jaxon was ready for a nap at his EEG in the morning. He was nice enough to just play on his iPad and let Jer and I sleep a little longer :) We were up at the clinic by 7am, and all the prep for his EEG actually went pretty quickly this time. He was okay doing the testing by himself, so Jer and I were able to get some much needed coffee and a little breakfast.
Next up was meeting the neurologist...she did her usual neuro checks with him and thought he looked pretty good, she also said that his EEG looked great! Now from what I can tell, having a good EEG (good background rhythms in your brain, not too slow), means that his brain is not being affected cognitively, from the increased pressure as of right now. That is me saying this not her, so don't quote me on that, but I think it is pretty close. We didn't get into too much with her since what we were really looking for was what the spinal tap would say. And that was next on the list after some lunch :)
Jaxon had to have the spinal tap done with out sedation, which even worried the nurse who did the spinal tap. She felt so bad for him, but I knew he would be okay even though he was SO nervous! Again, from what I gather, having him sedated can actually increase the pressure in his brain, because of how oxygen flows during deep sleep. Any who, because she felt bad, she bent the rules a little and let me have a little stool behind the curtain to hold his hand and talk to him while she did it. He was a ROCK STAR!!!

This is his "I did it!!" thumbs up!! He had to lay still for about a half hour after the tap to make sure he didn't get a spinal headache, and then we were outta there. We took him back to the hotel where he and I napped while Jeremy went to visit his Grandpa and play bingo with him. When we got up, Jax was ready to go out to eat. It had already been decided that his reward for doing an awesome job was Olive Garden, so we went and picked up Jeremy's Grandma Knick, and had a delicious, and much deserved supper! When we got back he was in a lot of pain in his back and very tired. We just chilled the rest of the night, he slept a lot, even thru Jeremy and I being loud about the Gopher's barely squeaking out a win in the NIT semi finals.
We had to get up pretty early the next morning too, which was hard on Jax because he was just spent and in a lot of pain. But it was just 1 appointment and he was a trooper as always!
After me getting a little uptight at the neurologist (because she was saying everything was hunky dory), Jeremy got her to really explain what she was thinking, and how we were going to proceed. It really isn't any different than what I have been saying before, but that is the safest route to go for right now. Jaxon's pressure was high at 324 mm/water, but it had come down 100 mm/water, and that is a good sign. They also took off enough fluid to get his pressure down to 220 mm/water, but that doesn't mean it will stay that low. He is off ALL of his meds right now except his hydorcortisone (which is only the amount that his body should be making, and isn't), and she is thinking and hoping that is the reason for it lowering. She feels like right now it isn't harming him (at least his brain) to have that pressure, but of course he still feels icky. She is hoping that he will start to perk up now that he has been off the drug Diamox (that was suppose to help decrease the amount of fluid produced in his body, but didn't help), which can make you very groggy and sleepy. She is also hoping that having his adrenals being helped out will also give him a little more energy. Now all we get to do is wait and see. That is kinda where we were, and still are with a little bit more understanding and a little bit of improvement. We are all scheduled to go down again on May 15th and 16th for appointments with Dr. Mason (his rhuematologist), his endocrinologist, and his neurologist. We will be evaluating how he has been doing, and are scheduled for another spinal tap if he is still the same, and go from there. If he starts to perk up, then we will be looking at what we can introduce back as far as meds go, and canceling the spinal tap.
So again a TON of information, but not a lot of answers...and because we want to make sure we do all we can before going a very drastic route (shunt), we need to be okay with no answers, and being patient. It is really hard for me not knowing what is coming, how it is going to work out, what we will have to deal with, or anything. I am the type of person that even if it is bad news I WANT TO KNOW NOW, and learn how to deal with it, and live. God has other plans, and of course they are better plans, so I will trust in Him for my boy. Jaxon also is getting frustrated at the unknown, and feeling icky all the time, but I want him to not be like me and take forever to lay it down at Jesus' feet, but do it right away whenever he thinks of it, so God is in control not him. Life is so much better that way anyway :)
Thank you for all of the prayers and wonderful messages! They mean so much, and Jaxon loves to read what you have said, and I can tell it means a ton to him to know that there are so many of you praying for him!