The Knick Family

2014-07-20T16:17:00.000-05:00

Our New Van!!
To all who have blessed us these last few months and years, with not only CONSTANT prayers, but also gifts...we want to THANK YOU ALL so very much!!! The money raised from the Knick Benefit gave us the opportunity to purchase this beautiful van, that is PERFECT for our family! It will keep us traveling safe and sound, starting this week, with our first trip to Rochester, and many years to come! When we prayed and thought about what would be best to do with how generous you all were, we felt like this was our greatest need! We can't say THANK YOU enough...it is such an amazing gift for our family!!

2014-07-20T16:16:00.003-05:00

TUFF LUCK FUN RUN!!

We were honored to be apart of the Tuff Luck Fun Run on Saturday, June 7th. They chose Jaxon and Hayden along with another boy (Carter Fults) to be honored. A ton of bikers road from town to town around our area playing poker, and having fun to raise not only awareness, but $ for our families! You can't get better than that! It was a wonderful evening, and we felt so loved by a ton of people we don't even know! Thank you EVERYONE who was there, who rode, who helped plan, and worked this awesome event! We were SO honored to be apart of the day!

Check out the article written about our boys and Carter Fults, in the Morris Paper in June!
http://www.morrissuntribune.com/content/tuff-luck-fun-run-helps-families-community

2014-07-18T00:53:00.001-05:00

A few Pics from the Ashby/Bethel Benefit

Thank You ALL so YERY Much!

2014-06-05T14:39:00.001-05:00

Our family is SO incredibly blessed and thankful for the benefit that was created for us...No amount of words can express how grateful we are! There were SO many hands that went into planning, preparing, organizing, running here and there, creating, setting up, baking, cooking, serving, cleaning, donating, and giving. We talk about it often, it was such an wonderful evening! It meant so much to see our school, kids we coach, the whole Ashby community, our church and our family all come together and bring such support and encouragement. It will NEVER be forgotten! Love, Jeremy, Andrea, Jaxon, Jonah and Hayden

Late update on our trip to Rochester May 15th and 16th

2014-05-30T18:48:00.001-05:00

It has been awhile since we got back from our Mayo trip, but it has been kinda INSANE around here since, so I apologize for not getting this done sooner!
We had a good trip down, leaving Wednesday afternoon (May 14th). Hayden and Jonah came with us this time, because they both didn't want to stay home again (especially Jonah, he hates being left alone!).
We got to swim when we got to town, and watch a little of the NBA finals, which is fun for us since we don't have dish or cable. It was a relaxing evening, and we didn't have to be up early the next morning, so we all got good sleep!
We met with Jaxon's neurologist first, mid morning. She checked him out, and felt like all his neuro tests looked good that day. And we signed papers to go ahead with his scheduled spinal tap at 1 pm.
Jax handled the tap like a champ once again! He amazes me, and SO many people around him. The nurse that help him out can't believe how well he does!

Before and after the spinal tap!

That was it for the day for Jax, which was really good cause he was in quite a bit of pain the rest of the day. His back was super sore, and he had already been hurting in both his left knee and hip. His knee was huge, and was good for his neurologist to see. Like she said, she doesn't really see that kind of stuff often, so then our request to get him back on his Actemra (his arthritis meds), was proven!

Jax and I just relaxed at the hotel (Jaxon just needing to lay flat, and try not to do too much), while Jeremy took the other 2 boys to visit his Grandpa at the home. His Grandma met them there, and they all had a great time playing bingo. I guess Hayden did a really good job, winning quite a few quarters. Jonah and Grandpa had the same exact card, so he helped Grandpa make sure he got all the numbers :) After bingo they all came and picked us up and we headed on over the the Canadian Honker for supper!

The next morning we met with his neurologist right away after his blood work. She had looked at the spinal tap results and was pleased. His opening pressure was down to more of a normal pressure at 278 mm/H2O. They took enough off to get it down to 238, so he was doing pretty well there. We are hoping the reason for his high pressures is the mixtures or 'stew" as his rheumatologist says. We already had his Actemra (arthritis meds) the Monday we got back, and he is feeling pretty good after that, but it took awhile. We just need to stay as far away from steroids I think, going up and down, on and off that is the kicker! So for now we will do checks with his neurologist whenever we come down, and his ophthalmologist every 6 months to make sure his eyes are okay. That is where and when they get really concerned, is when it starts affecting his eyes...if that starts happening he will get a shunt to protect his eyes, and drain that fluid. But for now we just watch, cause it has come down to a normal pressure.

We also saw his favorite doc, Dr. Mason. He is just the best, and was happy that we were over the anti-Actemra 2 months, cause his knees and hips were pretty bad! Otherwise it was a pretty easy check with him too. And that was it....and because we got in early to see Dr. Mason, we got to go home early and beat all of the NASTY Friday evening traffic coming outta the cities! We even made it home and even had time to take a little nap (Jeremy and I, of course...the boys had slept almost the whole way home!). I will post about our AWESOME next day soon, so stay tuned!

A fun Baby Shower!!

2014-05-30T17:05:00.000-05:00

Judi opened up introducing everyone at the shower, then I had a little scripture and prayer. Then it was time to EAT...Yummy!

Britt looked BEAUTIFUL that day, as always :) She was glowing!

STACHE/ NO STACHE :)

Grandma Ruby, Britt and Grandma J!

Even little Arthur man had a stache nook!

Judi and Liz were twins :)

Present time...along with Arthur time!

Zach stayed so chill with the cute kiddos! He is SO good with them :)

Cousins playing together already!

Such a handsome little man...he even had a smile for his auntie!

Amber with her tired Micha

Guest Book finger prints!

Britt's baby stuff was a lot of the cute decorations! She fixed her book Sky High all by herself!

The fun diaper cake I made...it was fun to put together!

This week....

2014-05-07T20:09:00.002-05:00

We were SO happy to have Jaxon feeling good for about a week and a half, but that came to an end this weekend. His left knee started to hurt on Friday, and Saturday was his friend Bobby's birthday party. Because he was so excited for this, and knowing he was gonna hurt more in the days to come, we all decided to just have him "live a little", and play as much as he could. He played a little basketball, and ran around after supper with his friends having pine cone and dart war fights. It was good to see the smile on his face. But of course it didn't last long...he was basically not moving at all on Saturday night and Sunday. We were hoping to some school this week, maybe even a couple half days, but he has been getting worse as the week has gone on. He isn't sleeping too well cause it hurts to lay still for too long, it hurts to walk, and hurts to just sit still for too long. Any way you put it, he is in pain :( It has started traveling into his fingers, wrists, neck and back. So far this time, it is mostly the left side (which is weird, because it is usually the right side all of the time).
Anywho...we are gearing up for a big week coming up! We have Jonah and Hayden's Spring Concert at school on Tuesday night, we will be leaving right from there and get to the cities to sleep. Then wake up and head the rest of the way to Rochester, for his 2 appointments on Wednesday (including another spinal tap), and some more appointments on Thursday. Hopefully we can make it home at a decent time on Thursday night.
That's all for now, just wanted to give a little update! Thanks for all of you for your continued prayers and encouragement!

It's a roller coaster ride!

2014-04-28T08:54:00.001-05:00

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

2014-04-11T18:08:00.000-05:00

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

2014-04-04T23:38:00.002-05:00

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!

Another trip to Rochester

2014-03-30T16:56:00.001-05:00

We just got it all confirmed and ready to go on Thursday...We are headed down to Rochester for a round of neurology appointments, and procedures tomorrow afternoon. We are going to try and beat the BLIZZARD warnings and leave after school as of right now. We might have to leave a little earlier if the weather starts misbehaving and moving in earlier. We just seem to always attract the weather one way or the other, but at least this time Jeremy is going with and will be driving :)
Jaxon has an early start on Tuesday morning with an EEG @ 7:15am. He has to go to bed late and wake up early, so he is good and tired. Then at 10am we meet with his neurologist, lastly we have his spinal tap at 1pm. He will have to have this spinal tap without sedation, which won't be too fun but I know that he can do it! They want him to have the clearest reading and I guess that some of the sedation meds can interfere with the tap.
The next morning we meet with his neurologist again, to go over the test results and then we will be able to head home. So we are hoping to get home before the other 2 boys are done with school, but we will have to see how it goes.
This kinda came up out of the blue again, so I just haven't had time to get a post up. I took the day off of "Mom duty" yesterday and spent the day watching a HIT basketball game, hanging out with my mom, and having a wonderful cup of coffee,and long overdue chat with my cousin Ryan (next door to Mom and Dad's). It was good to just get away and not have to think about Rochester, or anything else for a few hours. Of course the boys face timed me a bunch of times, but that is always fun! They love to face time when I am gone, and I am SO thankful for that technology, especially when it comes to Jonah...he always gets left behind and will talk for hours on face time :)
My Mom and Dad are going to come here and stay with the boys so that they can be in school, which is awesome! Hopefully they will be able to get back and forth for work with this weather!
Again, THANKS to ALL of you who have been thinking and praying for us and Jaxon, it means the world to us! I will post when I can as the day goes on...

Another LATE update...

2014-03-20T15:20:00.000-05:00

I am really bad at getting these posts up in a timely fashion aren't I? The trip to Rochester takes a lot more outta me than I think while I'm there. I get back and just kinda shut down, but it was delayed a little this time because Jonah had his last basketball tourney in Elbow Lake the morning we after we got back. They won the Championship!! Ending their season with only 1 loss, they played good each weekend! It was fun to watch :)

We also went to Nathan and Amber's on Saturday evening for a couple of hours, then Sunday we went to Kevin and Judi's for a wonderful turkey (with all the trimmings) dinner to celebrate Jonah's birthday. It was an awesome meal!!
Monday and Tuesday both Jax and I really relaxed, and didn't do a whole lot, napped and just rested, which what we both needed!
On to our trip...
We had a great drive down with NO snow, rain, ice or tornado's which RARELY happens! We went to bed pretty early on Thursday night because we had to be up and out of the hotel by 7am. Jaxon's first appointment was called an Adrenal Stem test. They put an IV in and drew blood, then put something in which stresses his adrenals to see if they produce cortisol, which is something his body needs to be able to fight off infection. We got his results later when we met with his endocrinologist Dr. Lteif. She said he didn't pass the test, and his adrenals are indeed suppressed. Now that wasn't a surprise for either of us but it is helpful to know so that we can help them along, and make sure that he doesn't have an adrenal attack that could be fatal! So the plan of action on that front is to give him a daily dose of hydrocortisone, which will help his adrenals along without affecting his growth, or increasing his inter cranial pressure (which steroids can do).
The next thing he had after his adrenal stem test was his MRI-with MRV. He had to wait quite awhile to get into this one, but once it started he was done in no time. And once he got out we raced to Dr. Mason's appointment because we were late!
Dr. Mason's ( his rhuematologist) was the longest one of the day. He told us the results of the MRI...there is NO CLOTTING going on inside Jaxon's head! That was great to hear, but there is still evidence of increased pressure. Because his neurologist was gone that day we didn't figure anything else out on that front. But as far as his Still's disease we decided that we are going to make kinda a bold move here in the next 2 months that neither his doctor, Jer or I are very happy about. We are not going to give him his next 2 infusions (his March or April ones). Neurology and endocrinology are really pushing the idea that his Actemra (monthly infusions that he takes for his Still's) is the issue for his increased pressure. Dr. Mason, Jeremy and I really are almost 100% sure that this is not the case, but we need to make sure that it isn't, and his increased pressure is the most concerning issue at the moment.
I am afraid that he is going to be in a lot of pain, maybe not this week (since he is due today for his infusion), but probably this coming week, and continuing. I just don't want the fever and rash, along with the pain to come back. We know that even though his blood has been showing well, there is still smoke smoldering there (he still is in pain, especially in his hips, knees and ankles), he has had to get direct cortisone shots to his bad areas even with the infusion. There isn't going to be much we can do for his pain, other than ibuprofen, hot and cold packs, and rest. We will be going down for sure in early May to see what to do as far as his Still's disease goes. So that is it on his Still's (systemic JIA) front....
As far as his increased pressure goes we are waiting on neurology to see how they want to proceed. I am assuming that we would be going down to Rochester for a spinal tap and EEG soon, especially since we will be off the Actemra now. But it seems to take a very long time to get anywhere with them!
I will try to keep this up to date better as I know anything! But for now, no news means we are just sitting here waiting and watching, trying to find ways to live this new normal for Jax and all of us which is hard. We are so blessed to have lots of family and friends who are supporting us with prayers!!

Some fun to share in the middle of all the medical ick!

2014-03-20T10:46:00.002-05:00

This is about 3 1/2 weeks late, but I wanted to post these pictures because it has been the highlight of the last month or so :)
Arthur Donald Holmburg was born on Feb. 25th at 3pm, and boy is he cute!! Jaxon, Judi and I went up the next day to meet him, then the next weekend the rest of our family got to meet him. It is fun to see Brittney as a mother, she is wonderful at it already (but I knew that already :)

A change of plans

2014-03-12T16:31:00.002-05:00

Well after being on the phone with Mayo clinic most of this morning and afternoon, we have a plan of action at least for this week!
Jaxon, my Mom, and I will be headed down to Rochester tomorrow sometime to be ready for appointments all day on Friday the 14th. His neurologist called this morning before her vacation, to see what has been happening, and had some ideas of what we are going to do next. She had the radiologist check Jax's MRI scans from January, and once again they were surprised that his inter-cranial pressure had been so high at the time of his spinal tap. She is concerned about a blood clot in one of the veins or vessels in his brain, and wants a different MRI done called and MRI with MV (not super sure what that means), from what I have read it shows more of the veins and the flow of blood (with a contrast) thru them. That way they can tell for sure if there is a clot anywhere. If there is a clot, I guess I am not certain of this, but would assume that he would be hospitalized, given medications, and monitored to see if this would help. If there isn't a clot (which would be the better case) we would still not have a reason for his high CSF pressure and need to come down and do some more searching and testing. I think we would be shooting for the last week in March, and that would include having him get his infusion (his monthly Actemera, for his Stills disease) down there, have a spinal tap after that, along with an EEG (to see how his brain is doing). Hopefully also get his neuro-psych test done as well! Then we will go from there...
But back to Friday, Jaxon will also have his adrenal testing done in the morning, then his MRI, then meet with his endocrinologist and rheumatologist. They will be able to look at his MRI scans and let us know how they turned out (since his neurologist won't be there), but if there is a clot I am sure there is another neurologist that will be able to help us out and know what to do next. At least we will be there, and getting one possibility answered!
We will be heading home after his last appointment because Jonah has his last 4th grade basketball tourney the next morning, and he DOES NOT want me to miss it! It is always really hard for Jonah when anybody leaves, he just doesn't like us going anywhere (which is understandable!), but hopefully this will be better because both Jeremy and Hayden will be here and we won't be gone but for a day (hopefully!!).
That is all for now, I will try and update as the day goes on Friday, but because it is so busy I might not get to it until Saturday :)
Thanks again for all the continued support, encouragement and prayers!!

Waiting, waiting and more WAITING....

2014-03-10T23:44:00.000-05:00

Sorry that I haven't been good at updating the blog! It has just been a waiting game at the Knick house, and we are all getting VERY physically, emotionally and mentally tired. Plus there really isn't a whole lot that has changed!
Jaxon has been the same since writing my last post, which as I look back was not since we were in Rochester a month ago now....WOW I have been really bad at posting!! Anyways, he has had the same symptoms now for a month which are: extremely low energy, droopy eyes (he just always looks tired), headaches, dizziness, his speech is slow and he has a hard time trying to think of what he wants to say, blurry vision or double vision, very emotional and insecure, he is sleeping a lot more than usual, and hasn't been able to go to school but for a couple of half days. His whole personality has changed! He just isn't the same boy he was even at Christmas time! When we see it everyday sometimes we wonder if he maybe isn't making some of it up, or making it worse than it is, but then you see him in pictures or my parents and other family sees him, and they notice it right away. It has been hard to sit here everyday and watch him just not get any better, and not be himself! It has been wearing on both Jeremy and I, but it is even getting to Jax now...he just wants to get better!
We have kind of plan of action right now, but it isn't anything final or anything that will get him better right away. He has been taking a new medication called Diamox, that is suppose to slow down the production of the spinal fluid in his system. He has been on it now for 2 weeks, and we haven't seen any real changes, although he hasn't had a really bad confused episode yet (so that is good!). I have been on the phone with his neurologist a few times, have emailed, and called a few times but haven't got very far. It has been frustrating, but then again I have to step back and remember that she has a ton of other patients that she deals with too! It is just hard to wait!!! But as I read last week in devotions....Wait patiently for the Lord.
Be brave and courageous. Yes, wait patiently for the Lord ~Psalms 27:14. That is just something that God is asking of us right now, and I am doing my best to trust Him and His time, not MINE! Believe me, this has to be almost an hourly prayer for me cause I am so quick to try to figure or fix it all on my own, and I instantly get overwhelmed and then give up. God wants us to lean on Him and wait for what He has for us!

So as of right now, we are tentatively going to go to Mayo on the 18th, 19th or 20th for another spinal tap and appointment with his neurologist, then hopefully be able to get in for an adrenal test that endocrinology wants to check out, and an appointment with them, and get into see Dr. Mason his rheumatologist. It will be another jam-packed short trip, but I think Jeremy is gonna be able to come with this time. I am SO excited about that :) He is all done with basketball, and isn't coaching baseball this year, so he is free(er) to come with. By free(er) I mean that he doesn't have any after school stuff he has to worry about, but just taking a day off for an elementary teacher is a HUGE deal! It means a ton of prep work to get ready for a sub and that in itself is stressful, not to mention why his is leaving...

So anywho, Jax will be having his spinal tap to see what his opening pressure is while he is on the Diamox, and he will be having the tap while he is awake like we were gonna try before. She just feels that they get a better reading that way, and there are no chances of medication interference. Jax of course is NOT too happy about his, but I know he can do it! We will be able to be right there with him, and hopefully they can get it done quickly! They are pros down there so I'm sure it will be alright :) From there we will see where she wants to go next. It seems like they are wanting to make sure there is no other issues or possibilities to look at before going the shunt route. She did say that she has rarely seen the shunt done in someone who has high pressure, but no vision struggles. His eyesight has always been great, which I guess would be something that would get affected right away. I also think that she is hoping it will all settle down on it's own after a couple of spinal taps. The spinal taps can re-set everything and help his spinal fluid to flow correctly, but so far it hasn't, and I am hoping that we don't have to wait so long in between next time! But we will figure it out soon...

You can pray for strength and energy for all of us, as these days are getting long and hard, especially on Jaxon. Another big prayer concern will be when he has his spinal tap, that he can stay calm, and still to be able to make it all the way thru. I know that there are SO many of you praying for us, and thinking of us, we are thankful for each one of you! There is no greater comfort than knowing that so many people are praying!

Jaxon has great friends around him too (who he misses!!). He has had care packages, cards, gifts, and even a whole booklet of jokes from his classmates! I know it means the world to him to see how people care about him :)

Jaxon Day #2

2014-02-17T16:09:00.000-06:00

Jaxon's morning of Day 2 started off pretty easy...he was suppose to have a test right away in the morning to stress his adrenal glands, to see if they would work at all. But because he had lots of cortisone injections the day before it would have led to a false positive, so his endocrinologist decided we'd better just wait until that was out of his system. He was happy of course cause that meant NO IV, and NO blood tests for the day :) For me it was great because we got more time to go back to the hotel and take time packing up, which is always better than doing it in a rush! After we checked out of the hotel we stopped to grab a quick snack, and headed to Jaxon's noon EEG.

These 2 pictures are taken after about 45 minutes sitting in a chair gluing all of these things to Jaxon's head. Jaxon looked like he was getting a bunch of extensions in at the hair salon ;) They have to measure different points on his head and connect the right colors to the right places. It was a very precise thing and was interesting to watch! They glued the little wires to his head and dried them with an air machine. Then it was time to get into the EEG room...

First they had him sit in the chair with his eyes closed and answer some questions...math and others.

Then they had him read and look at some patterns.

Next he had to keep his eyes open while they flashed bright lights in his eyes, first they were slow then it got really fast. Then he had to do the same thing, but with his eyes closed.

Me waiting :)

Next up was nap time...we had to stay awake 2 hours later than his usual bed time (so we were up till around 11pm) and then we had to get up 2 hours earlier than his regular wake up time. So we were up at 5am. He was nice and let me sleep till 6am, and he just played on his iPad...what would we do without technology!?!

He was pretty tired, so he went to sleep very quickly! They let him sleep for about a half an hour, and I had to stay in the room this time, cause he was a little insecure, which was just fine. I didn't fall asleep, but just rested my eyes and relaxed. After he woke up, they got the wires off of his head and we were able to go. It went really well, and they said that he was the perfect patient and they got good readings on him.

Hayden and Jill just hung out in the waiting room which got a little long (about 2 hours), but Jill said that Hayden did really well and just looked at his cards almost the whole time.
Next were the appointments with Dr. Lietif (his endocrinologist) and Dr. Keating (his neurologist) after that.
Dr. Lietif was a pretty easy appointment, there wasn't anything new to discuss because we were unable to do the adrenal stress test. We set up a time to get that done the next time we are in town (March 14th), that was about it.
Our last appointment was the BIG ONE (hopefully answers!!)...we even got in a tiny bit early! So hear is all the info that I can spill out of my mind, which is A LOT.....
First off, Jaxon's spinal fluid was CLEAR!! It looked great, and had no indicators of infection, cancer, red blood cells, too many white cells, or any inflammation from a possible other auto immune disease. That is the biggest news, and best news to tell :) We can put all of those worries to rest now, and not have those questions in the back of our minds all of the time. Also the other positive was the results of his EEG, Dr. K said that for his age his markers should be in the 8-10 range (again I have no real idea what that means), and he was at a 10. She said that just means that his brain at that moment was functioning how it should for his age, especially in the background (??) She said that our brains had a beat like a heart, and that beat in the background of all else is what is important. She did say that she wished we would have seen what his brain looked like the day before, before they took off all of that spinal fluid. She knows it would have been different! She said with all of the pressure on his brain, with fluid so high, his brain is working at a dial-up internet speed. Our brains work at the high-speed rate... both are getting the same information, just at different speeds. I thought that was a good analogy! Jaxon's brain just takes longer to get the information (when his fluid is high). The last 6 months I know that this is what has been happening to him, and that is why school has been a struggle! She said that one of her biggest red flags is the fact that we held him back this year in the fifth grade. That told her that we need to figure this out so he doesn't have to take 5th grade over a bunch of times. She thought we did the right thing, and now we know why it has been hard these last few years!
So with all of that information, there is great news, but there is still the questions as to why he is having increased spinal fluid?? And that is a big question...one that we might have to wait for and see when and if it returns now in the next few weeks. They are going on the idea that it could be the prolonged steroids in his body. Now I guess I am just not thinking it is that, but that is just me, and I am not the doctors. I have this feeling that for some reason he developed this Normal Hydrocephalus....what I explained in a previous blog post, and I think it could just be something that he developed over time from his Still's disease, or even from the long term steroid use. I also don't feel like cutting down on steroids will help this get regulated, but again that is ME talking not the doctors. No matter what he has to be on some form of steroids when he is sick because of his adrenal suppression, so no matter what he will probably be producing more CSF (spinal fluid) as life goes on. I will be doing lots of research, and asking lots of questions these coming months. I am thinking I would like to look at the possibility of placing the shunt sooner than later so that he can get back to maintaining normal pressures even with a little steroids on board now and again. I want his brain to be allowed to catch up to where it needs to be without medications that would slow it down anyways (even if it is helping the pressure stay normal). ME, ME, ME....mine, mine, mine is how this is sounding, and how I am feeling ;) But they do say I know Jaxon best so hopefully they will hear me out, and look at the bigger picture! There are just SO many factors to deal with, it is hard for all of them to keep it all straight, let alone me! I guess when it comes down to it, I am SUPER happy with some of the answers we got this week, but am also antsy to be able to answer the long term questions, and where we go from here. I don't want to wait anymore for his sake, and for his brains sake!
Also the neuro-psych. testing will help in seeing where he is at right now and can maybe help with some of my questions. We just need to get that approved with our health insurance...which I think will be happening this week.
After all that went into my brain, and his, and Jill's (about an hour long appointment), we were all pretty fried, but wanted to get back home! So Jill was just AWESOME and drove all the way home for us!! She did a great job, and got us home around 10:30pm with a stop for food, which was much needed too! That food helped us both have the energy to get home.
Jill was such a HUGE help this last week, I can't thank her enough!!! She kept me laughing, calm, and even distracted,which was great :) She was awesome with the boys too, they loved having her along! She was just chill, and was never a bother to me, just helpful and there (which is the most important)!! She is amazing, and such a great friend! She even had a big trip the day after we got home...she left at 4am on Saturday to catch a flight to Guatemala with a mission team she went with. They are there to help at an orphanage for a week. It will be great to hear how it went, and I am sure she is not only having a blast, but is a blessing to many! She gets to see Anna Hansen, who has been working there for over a year, I am sure Anna is so excited to have her there! THANK YOU, thank you Jill for everything! Jaxon, Hayden, Jonah, Jeremy, my parents, and I are so grateful for your time and energy! You're the BEST :)
That is all I have....WOW a lot again! Hopefully this will be it for a little while at least. Thank you for praying us thru that trip, and beyond...we appreciate it a ton! It means so much to know we have so many of you behind us in love and prayers!

Jaxon Day #1...

2014-02-16T19:40:00.000-06:00

Jaxon's week started out big with a morning in the out-patient surgery wing. He is well known on that floor and has Dr. Mackenzie (an anesthesiologist) wrapped around his finger, even though he wasn't Jaxon's doctor this time :) He always brings me extra cookies too while I wait, which is awesome!
Jaxon was scheduled for a spinal tap, 2 hip injections and one knee injection. It always takes longer to get into the procedures than it does to do them. He is seen by the anesthesiologist, the nurses that are in the room, the nurses in the procedure with him, Dr. Mason (who came with an assistant this time) who marks him up, rubs his head, and the team from St. Mary's who did the spinal tap. I have to answer a lot of questions, and make sure all of his information is correct.
He gets to pick out a surgical hat, and this time got to wear cool socks and these awesome shorts...he wasn't too impressed to have to change because usually he doesn't have to. He told me that he looks like a hippy in this outfit, and thought it was pretty funny! He was in a pretty good mood and usually is, he knows what is going to go on and has a list of what he wants. As long as it is kept routine, it is fine...he makes sure that they will remove his back patch (the thing that monitors his heart and other vitals) when he is still sleeping, and he wants NO smelly stuff in his mask that puts him to sleep. He was a little nervous about the spinal tap, but they made sure that he would be just fine after, and would be completely asleep when they did it. The team always asks if I want to come along until he falls asleep, but he never needs me...he just rolls away. I am pretty proud of him, he is such a BRAVE one!
He was in for about 30 minutes, it took a little longer because of the spinal tap. When he came back to the little room he was pretty out of it...which is normal, but it didn't take him too long to wake up. He is trying to wake up here, poor guy :(

Dr. Mason was the one who came and talked to me after everything was done. Of course there were no test results on the spinal fluid yet, but he did say that his pressure was very high. He was actually surprised at how high it was. His normal pressure for his age should be around 200mm/water (which I have no idea what that really means), but he had a reading of 424mm/water. They called his neurologist, Dr. Keating right away and she said to take enough to get him down to a normal level. They took enough off to get him down to 246, which would help a lot. When Dr. Mason told me how high the pressure was, I guess I wasn't surprised...this confirmed how I have been feeling for the past 6 months or so. He said "Well Andrea, you were right about Jax", and that felt good :) But then Dr. Mason seems to always know the right thing to say!
As far as his injections went, Dr. Mason said things went fine. He didn't put as much into the knee as he was going to, to save it for the hips. He said that he knew that his right hip would need quite a bit, just based on how he was able to move it around before the procedure. But he was surprised to see that the left hip actually looked worse. These last 2 times while doing the hip injections, he has had to use an ultrasound to see where he is going in the hip. That usually happens when kids get older, they get a little more meat on their bones. When he looked at his right hip he said it was pretty much bone on bone with a little fluid in between (which is kinda how it should look, maybe with a little more cushion), but his left hip looked like bone, then what he said looked like "crab meat", then bone. There was quite a bit of inflammation in there, so he put a little more meds into his left hip. It is weird cause his left hip hasn't been the sore one, but maybe his right one hurts because he has been compensating for his left.
We got back to the hotel around noon, after Jaxon woke up and ate something, which wasn't too bad. But according to Hayden we were gone FOREVER!!! He and Jill decided to hang in the hotel, have breakfast and relax, but it got pretty long for Hayden. He was bored, but that never takes very long to happen for him, so I am sure it was in the 1st 20 minutes of having breakfast that he was complaining about it. Poor Jill, she had to deal with him....but she made it. I took Hayden swimming for a little when we got back, then we decided to go shopping. The boys had got some money from Grandma and Grandpa, and Great Grandma Knick, that they wanted to spend. We got Jaxon in his wheelchair and walked around the mall for awhile, just to kill some time. Jill and I got some good coffee, and Jax and Hayden got a smoothie. Next we decided we all deserved a good early supper, since non of us had eaten much that day. We went to Olive Garden and took our time with a wonderful meal. We made a quick trip to Target where Jaxon bought some Legos and Hayden got a big pack of football cards that he sorted a million different ways that night. The rest of the evening was spent relaxing and watching the Olympics, which have been so much fun to watch, and a great distraction for our evenings on this trip! For Jaxon's tests the next morning, he had to go to bed around 11pm, so we all stayed up and just watch the Olympics together. It was a fun end to our day!

Hayden's Day 2/11/14

2014-02-16T19:39:00.001-06:00

Hayden was up first on our long trip to Rochester. We had come down the night before just so we would be ready to go in the morning, it was a pretty easy trip down. Jill and Jaxon stayed at the hotel during Hayden's test and just relaxed, which of course Jaxon loved! Hayden was just happy that I was coming with him this time, since at the last set of tests I was with Jaxon, and couldn't get out of that appointment to be with him.
Hayden did an awesome job of staying still and doing what needed to be done for his VCUG. This test is lots of x-rays while his bladder is being filled and emptied with a contrast liquid so you can see what it looks like on the film. He did a great job of letting them fill it, and then going to the bathroom when they needed him too, it is kinda weird but I was really proud of him, and they got lots of good pictures :) He was rewarded by some fun prizes.
That was all for the morning...we went back to the hotel and just hung out a little till we were ready to go over to Great Grandma Knick's. We had tried to see her last time we were down to Rochester, but between all of the appointments, added appointments, and me getting sick, we ended up not being able too. So I was glad that we were able to see her this time. We also saw Jeremy's uncle Steve, who was in town visiting Grandma. We went to Canadian Honker for lunch and just chatted a little there. It was a nice time!
Next up was to see Hayden's Urologist, Dr. Grandburg. She is SO nice, and had said that his test from the morning confirmed what she thought was wrong. The neck of his bladder is not working properly, and hasn't since the surgery over a year ago. She did bring in another option for something to try with him. She said that she could do an out-patient procedure that would involve going thru a catheter (not in his belly), with a camera, and just checking things out all around, then leave a sugar-like glue in the open sphincter that would block any urine from passing thru. This is a pretty easy procedure, and would just be like Jaxon getting cortisone injections. He would be able to go home that day, and he would have the catheter in for 2 full days, then I could just pull it out at home. The only draw back to the procedure is that there is only a 25% chance that it would work. We would probably know if it was gonna take or not by the time we were into the summer a little, and still be able to have the surgery when we were planning if it failed.
So with all of that info, Jer and I have to decide if it is worth a try, or just get the surgery done in July. Hayden has NO desire to do the procedure at all. He is pretty adamant about it, but I think it is just because it is something else that is unknown and that is scary! He said the same thing about the surgery in general the last time we were there, and now is all ready for it, so I am sure with a little talking thru he will be fine, if we decide to do it.
That is where we stand with Hayden, and if we decide to go ahead with that procedure, we will be doing it on March 14th, in the morning. I scheduled it just in case, and we can always cancel if we decide against it. Hayden is just a waiting game right now, along with trying to get him regular as far as his BM's go too, that has been giving him lots of problems lately.
Doesn't he look cute in his blues? He thought his hair looks too messy here though...he is so funny about his hair. He also LOVED the socks that he got to keep, and wears them all the time :) Who knew hospital socks were a cool thing?
The end of DAY #1....

This past week

2014-02-08T15:07:00.002-06:00

***Weird but this just converted to a draft, and looks like I never posted it?? So I will put this up again...I wrote it Feb. 2nd, so who knows??***

This past week has been a hard one on Jax. He has been in another one of his weird episodes since Wednesday morning. This is his 3rd one since Jan. 1st, and this one has defiantly held on the longest. He has really bizarre symptoms, that we are still trying to figure out. He is VERY weak, hardly able to even move around. Has a bad headache that won't go away. Doesn't talk or smile, his eyes are droopy, his lips are swollen, he is dizzy, confused (except this time wasn't as bad as the last time) like not knowing where he is, slow when he talks and hardly can hear him, very pale, and sleeps all the time! It is very hard to know what to do to help him, and it is hard to watch day in and day out. He is even having a hard time keeping his mouth shut, and his nose isn't stuffy or anything. It has been hard on all of us, even his brothers...they just want the old Jaxon back. Jax has been going to be by 7pm, and they just want him to stay up and watch a movie with them, but even that is too hard for him.

I talked to his Neurologist on Friday and we just wanted to check in with each other to make sure that we shouldn't make a trip down to Rochester. She felt that he would be okay to wait until he is scheduled, only because when we were there and saw the ophthalmologist, he felt like his optic nerve in both eyes werent swollen at the time, therefore there wasn't super scary swelling on the brain. If Jaxon doesn't come out of this by Monday, we will probably change that, and head down. I SO hope he comes out of it, just for his sake, he isn't himself in the least!

We also changed our plans on when we are gonna head down for the next round of appointments....they were scheduled to be on Feb.5th, 6th and 7th, but Dr. Mason is going to be gone on a mission trip, so we moved everything back a week. If Jax starts to come out of this, and we can hang on, we will be heading down the 10th, maybe after school, so we are there and ready for Hayden's last tests, and appointments on the 11th, Jaxon's spinal tap, cortisone shots, and appointments on the 12th, and his EEG, adrenal tests, and appointments on the 13th, and then head home. It will be another packed few days, but hopefully ones packed with answers, and plans for both of them.
My Mom and Dad are going to be gone that week on vacation, so my friend Jill Winkles is going to come with us. I am excited to have her along, she will be a GREAT help! I am also happy that my Mom gets to have a little break from this one. It is a lot for her dealing with my kids, and this time me too, with being sick and all. I know she wants to do it, but it has got to be hard on her too, watching not only your grandchildren going thru this but also your daughter! She is amazing and I am SO thankful that she and Dad are always there when I need them!

A little good news means the world :)

2014-02-05T17:52:00.001-06:00

Jaxon has had a pretty good 2 days! He is still tired, weak and dizzy, but you can see the spark back in his eyes :) He started turning around yesterday afternoon, after his nap. He was talking to his brothers lots after school, and even smiling some! Jeremy noticed right away when he got home last night, that he was feeling better....it is just exciting to see, and even hear him talking a little more normal. Last night was such a great night for our family. The boys played some together before supper, and it was fun to hear them talking to each other, and laughing. Then when Jeremy came home (earlier than most nights), we had supper together as a family, which hasn't happened in a long time. Then the boys went down to watch a cartoon before bed. Jeremy had a nice night together watching a movie. It was just a laid back, enjoyable night together, which again hasn't happened in SO long! Weird that a normal night can be so exciting and different for us, but we didn't take it for granted :)
On Monday we did have Jaxon try to go to school, he thought he could try, and we had him use his wheelchair just for saving energy. He made it to about 10:30am, and that was it. He just couldn't do it...said it was especially hard to concentrate on any one thing for too long. Was getting very dizzy and weak, then the headache really started again. He was pretty bummed cause it is no fun to have to miss this much school. He misses his friends!! We decided, that we are not going to push him right now, until we know exactly what is going on with him. We are keeping him home, and have been working on things here in little bits, and he is getting done what he needs to keep up. It is so much easier for him, he works a little, takes a break, naps and works some more. He still is going to bed early, and sleeping lots, but maybe not as much.
Today he had a special treat...his fried Bobby came for a half hour to visit him. They played video games, and just chilled, while his mom and I had coffee. It was a treat for me too, cause his mom Leslie is a good friend of mine :) Bobby had told him mom that he felt bad for Jax, and was sad that he was sick, so she decided to call. That was SO nice of him, Jax has a good friend :)
A better couple of days for the Knick's...Thanks for all the continued prayers and love!

Starting the blog thing again

2014-01-27T01:55:00.002-06:00

I have not been good at updating this site at all, but I am gonna have to start now I think. In the past I put lots of stuff on here about our day to day life, but I really don't have the time right now (obviously since it has been over a year since I posted anything!). Now I am going to use it as a kind of Caringbridge site. This way I can keep Jaxon and Hayden's medical information current, and have one place where family and friends can check up on how things are going. After this last week at Mayo it will be too hard to go around telling everyone what has been going on, and I know that you all want to know! And it is important that you know how they are doing, because you all are praying and thinking of us....which is AMAZING by the way! Thank you all for thinking and praying for us, it helps more than you know!

Jaxon and Hayden Update

2014-01-27T01:54:00.001-06:00

So here is a little bit of what has been going on these last 2 days....and we even have tomorrow left!!

Yesterday: After we got here safely (the roads were pretty icky), Jaxon had an MRI, that took about an hour (and waiting at least that to get into the test), he did AWESOME in the tube! He also had some blood tests. Hayden had been feeling really icky and had had no sleep from the night before (we think bad gas pains). so we went to the hotel and kept extra warm...it was FREEZING outside! We went to bed early and got a good night sleep, cause we knew we needed to be up early the next day :)

Today: We had to be up at the peds clinic at 7am for blood tests for Hayden. Then we picked up Jaxon and Mom for our next appointments. Hayden had urinary x-ray, then an abdominal ultrasound. Grandma went with him, cause it was really close to Jaxon's neurology appointment. When we were in that one, he also had to go to his Urodynamics test, that fills his bladder up to see when he starts having pressure to pee, and starts leaking.

So Jaxon and I were in Neurology....and were there for a long time!! They did a whole neurological work up on him. He did a great job today in that area, but his MRI scans sort of told us why he has been having these issues as of late. Dr. Keating (his neurologist and the neurological radiologist) feel that he had spinal fluid around his optical nerve (eyes) and his pituitary glands. He has had this, that we found by chance in 2011, with a routine eye exam, and thought it was due to going off of steroids too fast. All we had to do then is go back up on steroids and taper off slowly. But now we are seeing it again, and know that it isn't the meds, since he wasn't on steroids at this time, because of his infusion he gets every month (that has been helping a ton, and that he hadn't started yet as of 2011). Here is a little copy of what it is, better than I can explain it...

What is hydrocephalus?

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The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF)--a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

Here is also more information about it in a couple of paragraphs that show how it is diagnosed and treated....

What is the current treatment for hydrocephalus?

Hydrocephalus is most often treated by surgically inserting a shunt system. This system diverts the flow of CSF from the CNS to another area of the body where it can be absorbed as part of the normal circulatory process.

A shunt is a flexible but sturdy plastic tube. A shunt system consists of the shunt, a catheter, and a valve. One end of the catheter is placed within a ventricle inside the brain or in the CSF outside the spinal cord. The other end of the catheter is commonly placed within the abdominal cavity, but may also be placed at other sites in the body such as a chamber of the heart or areas around the lung where the CSF can drain and be absorbed. A valve located along the catheter maintains one-way flow and regulates the rate of CSF flow.

What is the prognosis for hydrocephalus?

The prognosis for individuals diagnosed with hydrocephalus is difficult to predict, although there is some correlation between the specific cause of the hydrocephalus and the outcome. Prognosis is further complicated by the presence of associated disorders, the timeliness of diagnosis, and the success of treatment. The degree to which relief of CSF pressure following shunt surgery can minimize or reverse damage to the brain is not well understood.

Affected individuals and their families should be aware that hydrocephalus poses risks to both cognitive and physical development. However, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations. Treatment by an interdisciplinary team of medical professionals, rehabilitation specialists, and educational experts is critical to a positive outcome. Left untreated, progressive hydrocephalus may be fatal.

The symptoms of normal pressure hydrocephalus usually get worse over time if the condition is not treated, although some people may experience temporary improvements. While the success of treatment with shunts varies from person to person, some people recover almost completely after treatment and have a good quality of life. Early diagnosis and treatment improves the chance of a good recovery.

So on the 6th and 7th of Feb. we will be down here again for 2 more big tests (for Jaxon). An EEG which will be a long, but easy test measuring his brain's electrical activity. And a spinal tap, which will take a first look at the pressure there (and if it is high they will take some spinal fluid off until it is at the right level, which will help right away to make him feel better!) Then with that fluid they will run a lot of tests on it to make sure that everything looks right. Then we will go from there and see where it leads us, but it is it all for Jaxon in a nutshell...Oh WAIT...after that he had an appointment ophthalmologist and had tons of different pictures of his eyes, which took us into Hayden's Urology appointment.

We also learned more than we thought we would in Hayden's appointment. I really liked his Dr. she knew what she was talking about :) First off, his bladder is not holding the amount of urine that it should. It should be able to hold as much as an adult bladder and isn't even holding a small cup of water (only 60 cc's). There is something not right...not only that but he is leaking often and shouldn't be. He is also constipated often and need to be addressed. That is the easy part though, we will just be using Miralax (sp?) daily. That will help him be more regular, and is healthy for him. And if that is working like it should, it will keep his bladder happier too because his bladder is right in front of his bowels, and if they are full it is always pressing on his bladder and making it spasm. His sphincters are not working right, and his bladder augmentation may not have been done properly. So in order to see what is going on, they will be doing another test, to see where the problem is (or at least part of it). It is an easy test...fill up the bladder and x-ray it as it fills and gets full, then empties. But no matter what that says it looks like we will be doing another surgery to fix the neck of his bladder, put in a shunt in there, and a sling to keep the sphincters tight. Then they will check out everything else out, and fix everything that was done wrong. He will be in the hospital for at least 2 nights for recovery (if there is nothing but the neck to fix, if there is more he will be in for a week or so), then he will have a cath in his belly and "the other" cath in for 3 weeks, to heal. Then he will be all set, and ready for the rest of his life with a good augmented bladder. He won't be able to pee on his own (only able to cath thru his belly, which is what it is actually meant to do), but he won't leak ever, he won't be as sensitive inside his bladder. Where he actually puts the cath into his bladder, they used his appendix to create a tube from his belly button to his bladder. Right now it is sticking out (prolapsed), which bleeds A LOT all over his shirts, this is irritating, sore and embarrassing. They will also trim that down, so it hardly shows, and therefore won't bleed :)

Okay that is it for today...

Tomorrow we have important things going on too! Hayden has the day off (except to wait around for Jax). Jax has blood tests right away at 7am, then at 8:15 he has a hand x-ray with appointments later with his Endocrinologist and Rheumatologist. Then we will be heading home...and it probably won't be till like 5pm. So you can pray for a little added strength driving home!

That is all I have for now...not much info at all right?? Yeah right...but at least you know all that I know now. Thanks for praying for us, it always helps! ~Andrea, Judy and the oldest, and youngest Knick boys :)

Oh what a fun Friday...NOT!!!

2014-01-27T01:54:00.000-06:00

We had to get up early for a 7 am blood draw for Jaxon, which of course was hard on all of us. But Jax and I just went, and Grandma and Hayden had some free time at the hotel. Jax did awesome as usual, giving them his blood, then we just waited there for a little bit for his hand x-ray. That took no time at all, and soon Jax was having breakfast, and getting ready to go swimming again. I was super tired, even though I had had a good nights sleep, so Grandma took the boys down and let them swim while I had a nap, which was awesome. When they got back I really started feeling icky...so we just took our time in getting out of the room. We had Jaxon;s next appointment at 1:15pm, and we stayed there till the very last minute. I was in the bathroom most of the time, and was just hoping to get thru the day and get home. I felt okay when we first got there, and even into the Endocrinology appointment. Dr. Lietiff is such a nice lady, and took her time with Jaxon, asking a lot of questions, and bringing up some for me to talk with Dr. Mason about. She feels like Jaxon is growing, slowly but surely. He has grown 3 cm in the last 6 months, but hasn't gained any weight. He is almost at the 3rd percentile mark on the growth chart, which he was SO far away from a couple of years ago, so that was fun to see. She also said that his growth hormone was still at the right level and his bone age (measured by the hand x-ray) was 11. Which all means that he still has time to grow, and we don't have to put his body thru growth stimulant yet, which is a good thing. She did say that his cortisol levels were low (which means that his adrenal glands are suppressed , even now), and that any sign of him not feeling well, we have to stress dose him with prednisone. That will keep him away from anything icky happening, and hopefully help him start feeling better sooner. So it is just another thing to watch right now with him.
By the time she was done, I was feeling horrible, and could hardly stand and wait for the sheets that were being printed out for me. They all told me to go lay down on the couches, and made sure I was okay. They also thought I should not go to Dr. Mason's appointment cause I looked pretty bad! I had Mom take Jaxon and Hayden to get some lunch (cause we had stayed in the hotel too long to even get anything for them, poor kids), and I just laid there. After a few minutes though, I was running to the bathroom to throw up. I never thought I would EVER puke in a public bathroom, but I didn't have a choice. My Mom said I was super pale...but I really wanted to stay for the next appointment, cause I knew how important it was! They got us in a little bit early, and in between the fellow and Dr. Mason coming in I had to go puke again. It was actually good timing though because I was pretty with it when Dr. Mason came in. He checked Jax out of course, and was pretty concerned about his knee and both of his hips. We talked ALL of his information thru and both feel that the spinal tap is the best way to figure out what is going on. Why is he producing too much spinal fluid, and what is the cause. He said that it was very rare, but possible that it could be his disease. It has been seen before, but only in 12 people (recorded). He also said it could be an infection, or another autoimmune disease, creeping in. It also could be his medication, but because he has been on it for so long, and we haven't changed it in over a year, he really doesn't feel like it is that, and neither do I. The spinal tap will tell us all of that, and can even bring his pressures down to a normal level, so that he can start feeling better sooner. Dr. Mason is going to be gone on a mission trip the 1st part of Feb. when we were planning to come for all those other tests and follow ups, so we are going to push them back a week. So when we come we will be having all the other tests I was talking about, and cortisone shots in his knee, both hips and wrist. He is always sedated for this, so Dr. Mason said Jaxon should just be sedated for his spinal tap too, and do them both at the same time. Which is awesome, and of course made Jaxon's day! It will be so much easier to be sleeping when they do the spinal tap, and Dr. Mason felt like Jax is going thru enough, he need that extra stress of that awake! So we have a plan ready to go, and will see what all the tests say then go from there.
When we were done with Dr. Mason we still had to get the boys their flu shots (which they were both NOT HAPPY about, but it was easy and fast, and now we are done), and Jax had to give a urine sample. It was 5:30pm when we walked outta there, and had really started to snow. I had talked to my dad earlier and he said that the roads were bad to the cities, and the traffic was bad because of the weather. Hearing that along with how I was feeling, we decided that there was NO way that we were going home that night. Jeremy got us a hotel (actually right next door to the one we were staying at) , and by the time we drove in, I was ready for the bathroom again. Mom and the boys unloaded the whole car by themselves, and took such good care of me. We had a great room, there were kinda 2 rooms, the main room with a pull out couch, and the other one with the bedroom. There was even a door, and each room had a TV, so when Mom and the boys were there, they just hung out in the bedroom with the door closed, so I could just rest. I didn't throw up the rest of the night, but was running a fever and SO achy and cold. The hotel had a great pool, so Mom took the boys swimming for a long time. I hardly moved...there would have been NO WAY that I could have driven home, not to mention, that none of us needed that extra stress!
So there you have it...the NOT so fun Friday!!! Again, I know this is a lot of information, but it also helps me to get this off. of my mind and out in writing! Thank you all for being patient with me, and for praying, and caring, and even reading all this stuff. It is a lot to take in for all of us, but we keep trying to put it all into perspective. I know the prayers and thoughts have helped us and will continue to help us!

Oh SOOO good to be home!!

2014-01-27T01:53:00.001-06:00

Home has never felt SO good before! I was too tired and still feeling pretty crummy to write anything when we got home, but we made it. We had to take our time getting home, and it took me a little while in the morning to get going. Our Friday night was interesting again...Hayden woke up almost screaming in pain, at midnight and ran to the toilet and threw up while sitting on the can. He puked SO much, it was crazy. I don't know if he had the flu or had just been swimming too much, but wow! I felt so bad because of course Mom cleaned it all up, and dealt with him. Thankfully that was only a one time thing for the night, so we all got a pretty good nights sleep.
The roads were not good at all from Rochester to the cities, with at least 10 cars in the ditch, and many tracks from the night before. I just made sure to not go too fast or make any sudden movements. Once we got to the cities, the roads cleared up and were GREAT! We had to make a couple stops, but really the trip went well. I felt fine almost the whole way thru, Jaxon slept almost the whole way, and even Hayden had a couple naps (which is rare for him). It was good that Jax could sleep though because he was in a lot of pain in his hips and knee. We had him set up where he could almost be stretched out and his legs up.
It was great to see the Ashby exit, and even greater to see Jeremy, Jonah and Stella!!
Today was for sure a day of rest in this house! We had a crazy blizzard yet again, which meant that we had to stay home from church, and take it easy. That was of course a blessing in disguise, because we all needed some serious rest. We woke up, ate breakfast and then a little while later all had a nice long nap. Jeremy and Jonah needed it as much as us who were in Rochester...Jeremy has been feeling horrible since Friday, and we are thinking that he has a bad sinus infection. And Jonah played hard yesterday in the first 4th grade tourney of the season. They won each of the 3 games they played, and Jeremy said they all played well. Jonah was a little sad that he didn't score any points, but Jeremy said that he played great defense and did a lot of other things well!
Jax has been feeling pretty good today, and even wanted to go up to school and shoot some hoops. He is moving SO much better than he did yesterday. I am also feeling much better than I did on Friday and yesterday! Wow did that hit fast and hard, but it didn't last all that long. Hayden has been acting fine all day today too, not eating very well, but he hasn't thrown up any more. It was great to make it thru the day without anybody doing that ;)
Here are the 4th Graders, thanks Missy Cook for taking a picture!!

It's just too hard for me to keep up sometimes!!

2012-07-23T21:46:00.001-05:00

So I have been gone for WAY too long, and am going to attempt to get some pictures of the last 6 months going here so beware, there may be lots to look thru :) Life always moves too fast, but there are times when I let it get the best of me, and so things get put on the back burner, which is silly! I just want family to be able to get a little look into our lives, especially those who don't use facebook. So I will be better at keeping this current, even if it's just the pics that get on! Thanks for putting up with me :)