Hayden's Day 2/11/14

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

***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 :)

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

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

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!!!

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!!

   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!!