A change of plans

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....

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

 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...

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

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!