Surgery in 3 weeks

So last Wednesday we saw Dr. Vehe (ped rheumatolgist). We talked about Jackson's hernia and the need for surgery. Dr. Vehe wanted the surgery done in between infusions because he doesn't delay or post pone any infusions. However when we had the surgical consultation the next day with the surgeon he seemed to disagree and wanted to wait longer than 2 weeks and said he takes priority over the rheumatolgist. So surgery is set for January 17th! He said that because of Jackson's disease and the meds he takes he is high risk for infection! So I am sooo nervous. The week before surgery we will skip the methotrexate injection to help cut the risk down a little and the remicade infusion will be post poned until 2 weeks after surgery.
We also had a infusion on the 22nd that didn't go so well. I have never been so upset as I was that day! To sum it up without going into detail, Jackson was admitted to the hospital at 1pm and they didn't start the iv until 5pm!!! All I got was lame excuses and I can't wait to tell Dr. Vehe's nurse about the crappy care we got that day!
Jackson has been doing ok except he has had a cold for over 4 weeks now! I am going to take him tomorrow because that just seems too long! I know for a immune suppressed kid it probably isn't but we need him to get well so we don't have to post pone the surgery. Since we are already postponing the infusion by 2 weeks, postponing the surgery would just post pone that too and we just need everything to work out! Easier said then done, lol! He has been rubbing his eyes and knees a lot lately. His knees were red today but not too badly swollen. Mike and I also think that Jackson has gone deaf in his left ear. He had a ear infection in that ear 2 months ago and the infection got better but the fluid hasn't drained. Everytime they check it they say oh its just fluid but we have been down this road before! In 2008 Jackson had quite a few ear infections and fluid that would never go away but the doctors would say it was fine. Then one night his ear drum burst but they still didn't think he needed to be refered to a ENT. Finally I decided to refer him myself and the ENT doctor did a hearing test and he was sooo hard of hearing that his ear drums didn't have any vibrations from sounds at all! When they did surgery to put tubes in he said there was sooo much old fluid in there that he could tell was really old and yucky! They also found his adneoids were very large so they took those out too. After his surgery he didn't have any ear infections until 2 months ago and on Christimas day Mike and I noticed something coming out of Jackson's ear and it was his tube. So after tomorrow if the fluid isn't gone I will be asking for a referal to the ENT again!
Were suppose to see the eye doctor in 2 weeks but since I haven't made the appt yet and they book up pretty fast it might be 3-4 weeks. Next appt with rheumatolgist and infusion will be at end of January because of surgery.

Update

Oh what a terrible couple of days it has been for Jackson. Yesterday he had a eye appointment at The Childrens Hospital and that came with some bad news. The pressure was coming down but the cells were back in the left eye! So I guess coming off the pred forte and going onto FMX was not a good choice. However Dr. Bothun did not want to go back on pred forte because he thinks that is what was making the pressure go up in his eyes. He really believes Lotamax is the med he needs but our insurance will not pay for it. The pharmacy had previously called and they weren't willing to budge so now Dr. Bothun is writing them a letter. We are scheduled for a iv infusion next Wednesday, however Jackson has had a cough and runny nose for 3 weeks now so I don't know if he will be able to get the iv infusion next week or not.

To make my day worse yesterday when we got home my Grandma and I found a hernia in Jackson's groin area. He has been quite uncomfortable the last few days. Not sure if its due to cold, JRA, or the hernia I don't know. He also hadn't pooped in 2 days which is not normal for him. So I got him into a ped right away this morning. And to confirm my fear they said he is going to need surgery! I am so upset, how much can one little boy have to endure! It just doesn't seem fair especially at 3 years old! It just breaks my heart. So we meet with the surgeon next Thursday and will schedule the surgery shortly after that.

Thanks for checking in!

Sara

Happy Thanksgiving!

Hope everyone had a great Thanksgiving! We did! We went to Mike's family dinner first in the afternoon and then went to my familys at 4. Jackson had a great time playing with his cousins. on my side of the family Jackson is one of three boys that are within 1 year of eachother and they have the best time together! So this Thanksgiving I am soooo thankful that although my child is sick with this awful painful disease I am thankful that it isn't cancer or anything that he could die from! While he was in the hospital yesterday I saw a lot of sick kids and kids with cancer. In the room next to us was a baby that was probably about 3 months old and it was crying so hard for a good hour. So although I am mad that Jackson is sick and has to suffer with JRA and Uveitis I am extremely grateful that it isn't worse. I have so much to be thankful for this year! We have only been dealing with this disease for 9 months but it feels like it has been forever. Jackson is such a trooper, he runs and plays and you would never be able to tell by looking at him that he is sick. He continues to amaze me everyday :).

Yesterday was infusion day so we spent the entire day at The Children's Hospital in Minneapolis. My Grandma came with us, thank god because the weather was not in our favor when we left. The roads weren't terrible coming home til we got into Eau Claire. In Minneapolis we only had snow but in Eau Claire they had freezing rain and snow! We saw Dr. Vehe (Rheumatolgist) before the infusion and he checked out good. Dr. Vehe was a little stressed, he had another JRA paitent across the hall that was having heart issues and he was trying to decide if he should admit him to the hospital. Ahhh, these poor kids that deal with this disease. I love Dr. Vehe, he is so great and you can tell he truly cares about his patients! The infusion went good except for it taking forever to get everything going. But that won't change because he has to be admitted to the hospital so its a process. When they went to put the iv in the child life specialist tried holding the book in front of Jackson's face so he couldn't see what they were doing. Well Jackson kept trying to look and they kept being pushy for him not too. But I told her that he likes to watch and that he doesn't cry or get upset so they put the book down. And they were all impressed that he just sits there so calm and quiet while they insert the needle. He is such a good boy! He had lunch after the iv started and pretty much passed out sitting up while he was eating! So he slept almost the whole time. We had a shared room this time, last time we had our own. And the kid in the bed next us had 4 adults and 4 children crammed in our little room and they were being sooo loud. But what do you do! All in all the day went well!

Next appointments are in 3 and 4 weeks.

Sara

Good news and bad news

Jackson had a appointment with the opthlamologist at the Childrens hospital today. We got some good news and bad news. Good news is his eyes are CLEAR, no cells!!!! Yay I was so happy and relieved I could have cried! Bad news is the pressure is high in his eyes which puts him at higher risk for glaucoma. We were told that glaucoma and cataracts were a risk the longer your on the steriod eye drops. I am not pleased with this but sooo happy about the cells being gone! So as of now we are decreasing the steriod eye drops and hopefully getting off them completely soon. We will be re-checking the eyes again in 4 weeks and I am already nervous! I am a little nervous about being so happy because we have tried weaning off the eye drops before and they flared. But last time he wasn't on remicade or methotrexate so hopefully this time will be different.

I drove 3 hours round trip today for a 30 minute appt. We were in there for such a short time that the vallet hadn't even parked my car yet. So you would think since they didn't touch my car I wouldn't have had to pay but of course I did! Rip off that they don't have any free parking! Seemed like such a waste of afternoon but with the good news it was well worth it! Traffic seemed to more crazy today then others and we didn't even hit rush hour either way!

Next Wednesday is Jackson's remicade infusion which will be a 7 hour day since he has to be admitted to the hospital. But my Grandma is going with us so that will help keep me company since last time was pretty boring by myself with Jackson sleeping most of the time.

We are headed out to eat to celebrate the good news!

Thanks for checking in!

Sara

Next iv infusion postponed at least a week

Jackson has come down with a cold and ear infection. The way his cough is getting worse I am afraid he may have pneumonia. But he just started a antibiotic last night for ear infection so if he does have pneumonia the antibiotic should take care of it. The poor kid just had the stomach flu a couple of weeks ago. Since its only Nov. I am afraid this is a bad sign of whats to come this winter thanks to drugs that supress the immune system! I talked to his rheumatolgist last night and we won't be doing his remicade infusion on Wednesday because of being sick. Because remicade is a immunosuprisive drug he can't get it while sick. We will reschedule for the following Wednesday the 24th. We are also suppose to see the opthamolgist on the 17th so not sure if we will just postpone that appt to 24th too so we don't have to make 2 trips. A few days ago Jackson's left eye was looking pretty droppy, the worst since he was diagnosed so i hope he isn't having a bad flare up! Well see. I have recently been added to a group on facebook of other people and mothers of kids with JRA and I am so excited to have become a memeber. I don't know anyone else with a child with the same disease and sometimes wish I had a support group and other people who know what I am going thru or have already been there and can offer advice and I have finally got that! Thanks to Amy for adding me to the group!
We got snow for the first time last night. When I got up for work at 5 this morning, Jackson got up with me and saw the snow. He was sooo excited he tore off his pjs and put his snow pants on and ran around screaming snow fall out of the sky! It was cute. In Minneapolis, where his doctors are, they got a lot more snow than we did and it makes me nervous about all the appts and driving in the winter. Its a hour and half drive each way and I am extremely nervous about it snowing on days we have appointments! I hate driving in the snow, it gives me extreme anxiety!

First IV infusion

So today was Jackson's first iv infusion of the remicade. The drug that scares the crap out of me because of the risks involved! So we got the the Children's Hospital at 11 this morning and were instructed to register at the hospital then walk over to Dr. Vehe's office to have a appt. with him and then go and get admitted to the hospital for the infusion. When we got to Dr. Vehe's office a little after 11 the receptionist says '' Did you know the appt was at 10:40?'' I was told 11:20 she didn't believe me but Betty the nurse cordinator came out and said it was fine. Later I listened to my voicemail that I had saved and it did say 11:20. Really no big deal but the receptionist was rude about it so I was a little angry. I think my anxiety about what was going to happen today maybe got the best of me! So after we met with Dr. Vehe we went and got settled into our room. Talk about depressing, almost every room on the floor was full and it is just sooo sad to see all of those sick kids and a couple of little babies:(. Jackson's iv was started at 2pm finally. They gave him some benedryl and tylneol before hand. Since we had left Eau Claire at 9:30 this morning we hadn't had lunch yet so I called down to the cafeteria to order some food. Well they claimed they didn't have his name in the system and I was starting to get mad since it was past lunch time by this time. I said well I just want some food brought up here and they said they would call the nurses station to see! Well they never did and after asking 2 different people about it the nurse finally called down there. And then it took another 30 minutes for them to bring it up! So annoying! After he ate he was pretty tired so he slept the rest of the time. Pretty boring day, I watched t.v., paced the room a few times, stared out the window, and probably checked facebook every 10 minutes! next time I will bring something to read or something. They took blood while we were there to, to see how his kidneys and liver are doing. We were discharged at 6pm. We missed the worst of rush hour, thank god! There was still a lot of traffic but it was moving smoothly. The day went well and quiet. 2 weeks from today he schduled to see Dr. Bothun to check the eyes and be admitted for the 2nd infusion. They doubled booked us so one of the two will have to change days since today was a total of 7 hours we were there.

Halloween was fun, Jackson loved it! We went trick or treating with my cousin, her husband and her daughter. Afterwards we went to my aunt and uncles house and had chili with my whole family.

The week before halloween Jackson and I both got sick with different things. Jackson had the flu and I had a cold that turned into bronchitis. Being sick and taking care of a sick kid is the worst, not fun! Jackson was all better by the friday before halloween, I on the other hand have been battling to feel better. As soon as we got back into Eau Claire tonight at 7:30 I went back in to see a doctor and they finally gave me some meds to feel better. I got antibiotics and a inhaler, so hopefully I will start to feel better within a couple days!

Thanks for checking in and hopefully we will start to see improvement soon with the infusions!

Sara

Fridays Appointment with the Rhuematologist

So today we saw Dr. Vehe. We talked a lot about 2 different meds, Remicade infusions and Humira injections. I think at this point we are leaning towards the Remicade vs the Humira because of the fact Dr. Vehe thinks the Remicade is more effective for the Uveitis. They are IV infusions that would have to be done every 4 weeks at the Childrens Hospital in Minneapolis so that means more trips for us. We have a week to check with our insurance to make sure they will cover the infusions and then make a final decision. He also made a point to tell me a side effect of both drugs that was quite scary to me! Both these meds can cause Leukemia and Lymphoma!!!! Yeah so I am really not liking this:(. With the Humira its a 3% chance and with Remicade its a 8% chance. Which Dr. Vehe reassured me that even 8% is very small and very rare. I am still very un easy about it. So I think I will be up late tonight doing some research!
The knees seem to be doing ok but the joint in one of his toes was very swollen today he said. So he thinks the new drug will help that. We didn't get rid of the Naproxen as I had hoped.
Jackson will have blood work within the next couple of weeks. He will see Dr. Bothun (for the eyes) Nov. 17th. And be starting the infusions within a couple weeks.
Thanks again for checking in!
Sara

quick update

Just a quick update on yesterdays appointment. I was expecting the bad news of the eye has not improved but I was completely unprepared for the news that that it had spread to the other eye! Wow what a blow it was to hear that! So at this point the current meds aren't doing the complete job so we will be discussing adding a new med at tomorrows appointment with Dr. Vehe. I did ask Dr. Bothun if we could possibly get rid of the naproxen if we add another med. He thought it was highly possible but I have a feeling Dr. Vehe will feel differently. They don't always agree on the meds. But one of my concerns is all the meds that go into Jackson on a daily/weekly basis. So well see! Currently Jackson is on Naproxen 2x daily, Methotreaxte injections 1x a week, Pred Forte eye drops 5x a day and now adding another med tomorrow along the lines of enbrel or Humura. Too much if you ask me! This is so discouraging I thought we should have made more progress towards remission within 5 months. I have done my best to be so strong and act strong when people ask about Jackson but I am not and I may just loose it now! I have been sooo blessed with some great friends thru all of this. Some of who amaze me that deal with there own children with serious heath problems but yet have the time to call/text to check on my child! I hope you know who you are and you have been sooo great to me! But I don't want to forget all my other friends who have been there for support and thank you to those who have taken time away to ride to the appointments in Minneapolis with me. As little as it seems it is huge to me and soo apprciated!
Thanks for checking in and those who are a constant support to me! I will update after tomorrows appt!
Sara

Disapointing appointment today

Well we headed to the U of M Childrens Hospital today for a appt. with Dr. Bothun (Ped Opthlamologist) to re check the eyes to see if the increase in meds 4 weeks ago had gotten rid of the cells in the eye. Unfortnately there was no improvement. I was very let down. Dr. Bothun had said the last time if there was no improvement by today that he wanted to add another med. Today he was going to but called Jackson's Ped Rheumatolgist Dr. Vehe to discuss it with him and he didn't agree with adding another med at this point. He wants to give it another 4 weeks first. As much as I was completely against adding another med I feel that at this point we have waited a long time and there has not been any improvement. The only thing that has really helped at this point was the joint injection. So at this point in time I am with Dr. Bothun and would like to add the other med if its going to help. The longer the cells stay in the eye the more damage it does! For the meantime we did increase the Pred Forte eye drops and he is already on the max dose for the Methotrexate and Naproxen so those will stay the same. What a disapointing day, the whole ride home and tonight I couldn't help but feel so depressed.

As far as the episodes he had a couple of weeks ago, I am waiting for his Ped to get back from vacation to talk to her and see what she wants to do. I choose to wait because I have become very particular with who Jackson sees just because of the history with other doctors not listenig me. I love the 3 doctors he has now and don't care to see anyone else.

I had a old high school friend, Keely, in town this week from Oregon. Keely and her little boy and another friend Liz and her 3 kids came over last night for supper and to play. Jackson loved it and had soo much fun! The picture above is all the kids.

Jackson rode the bus to speech today. He was so excited before the bus came but when he got on and I went to leave he looked terrified. But when he got home all he talked about was getting to ride on the ''big bus.'' It was cute!

He has another cold, he just had one last month too. But we can thank the wonderful Methotreaxte for that. He seems to be doing just fine with it but given his worthless immune system I will watch him closely and I am sure it will take a good 2 weeks to fight it off! I am bracing for a long winter of illnesses with him being on methotreaxte which is a immunosuppressant drug. And now that he is in school 4x a week there will be no avoiding all the germs!

Well thats it for now, next appt. is Oct. 13 with Dr. Bothun and Oct. 15 with Dr. Vehe. Thanks for all the thoughts and prayers!

Sara

Never A Dull Moment!

It feels like its been forever since I updated this site but I think its only been about 3 weeks!

Mike and I just got back from Pittsburgh. It was nice to get away, it was our first vacation without Jackson! I missed him a lot but he had a great time with my Grandma!

Jackson has been doing well. He just started Preschool and a speech group (which he refers to as school). He is goes 4x a week and loves it. Wednesday he will start riding the bus to speech, which he is sooo excited for! On memorial day weekend Jackson had a couple of ''episodes'' that freaked me out. He would just all of sudden zone out with this blank stare,possibly a seizure. It would last for a minute or less. It happened about 4 times in 2 days. I called urgent care and talked to a nurse she didn't not think they could see him, she didn't think they were equiped given his disease. I then called the on call ped and he said to give him tyneol. Not sure why because he didn't have a fever and he wasn't sick. But this was the same Ped who said there was nothing wrong with him before he was diagnosed with the JRA. So given his past with Jackson I decided to call the on call Rheumatolgist at The Childrens Hospital. She said he needed to be evaulated and that he could be seen by someone here so we wouldn't have to drive to Minneapolis. The next day was Memorial day and then we left for Pittsburgh so he hasn't been seen yet. And his ped is out all week. So I called and left a message with Dr. Vehe's nurse to ask him what we should do so just waiting to hear back from her. We have a appt. in Minneapolis with Dr. Bothun to look at the eyes on Wednesday. So its been 4 weeks since we increased the methotreaxte to see if the eye would get better. I am soooo anxious because if there are still cells we will be adding another med. So please pray and cross your fingers we get good news Wednesday!! As far as the other knee it is still the same, no improvement but it hasn't gotten worse either.

Thank you for checking in and I will update after Wednesdays appt.

Sara

Appt. with Dr. Bothun

Jackson had a appointment with Dr. Bothun on Wednesday. It didn't go well at all, there is no change in the cells in his eye. Its been 6 weeks since we increased the pred forte eye drops and there is still the same amount of cells. I was very discouraged but Dr. Bothun told me not be so let down that we will keep fighting and we will get the cells out. He did increase the amount of methotreaxte injection and said if there are still cells in 4 weeks we will be adding another med. I hope we can avoid that since Jackson is currently on pred forte 4x a day, naproxen 2x a day, folic acid 1x day, and methotreaxte (chemotherapy) injections 1x a week!
His other knee (the newest infected joint) seems to be getting a little bigger! I am holding off on calling Dr Vehe because we did just increase the methotreaxte so I want to see what that does first. Jackson took a digger yesterday and scraped both knees, no big deal except he was very whiney about it and not wanting to walk. I thought he might be being over dramatic but then today they bruised up really bad. The knees seem to bruise really easily now.
The next few weeks are going to be very busy, we have a appt. coming up with Jackson's Ped here in Eau Claire and then orientation for preschool and speech. I am excited for Jackson to start these things since he has never been in daycare so it will be great socialzation for him and he loves to be with other kids! He will have group speech at the monestery charter school on Mondays and Wednesdays and Preschool at our church on Tuesdays and Thursdays. In two and half weeks Mike and I leave for Pittsburgh for 4 days. We are going because Mike is in a wedding. I am excited but nervous at the same time. We have never left Jackson for more than 1 night and with his disease being so aggressive right now I am a little worried. However he will be in good hands, my Grandma is coming from Chetek to stay at our house. And I took 12 days off total from work so when we get back I will still have 8 days left of my vacation to make up time with Jackson!
Thanks for checking in!
Sara

Appointment with Dr. Vehe today

We had a appointment with Dr. Vehe (ped Rheumatolgist) today at the Childrens Hospital in Minneapolis. It went really well for now know medication changes and the right knee has improved so well from the joint injection and new meds. He did look at the left knee and confirmed what I had thought that it looks like the arthritis has gone into the left knee. At this point it is very minimal swelling that we aren't going to do anything about unless it gets bigger or starts to cause a lot pain or discomfort. If it does we can up the dose of methotreaxte injection and possibly do a joint injection of steriods. Other than that Jackson is doing well. So we will just pray that the left knee doesn't get any worse. We don't have to see Dr. Vehe for another 8 weeks!!! Thats the longest we have gone before having a appt. With the exception of that left knee not getting worse otherwise we will have to back sooner. After the appt. Jackson had to get labs to monitor the affects of the meds on his liver, kidneys etc. He is such a big boy with this kind of stuff. They always send a child life specialist with to help because a lot of kids hate getting poked with a needle. However our child life specialst was quite impressed that she really wasn't needed with Jackson. He wined a little but otherwise he just sat there and watched. Hopefully we get those results soon, I worry about all the meds he takes and the affects on his body. We did not see Dr. Bothun (Ped Opthamolgist) today, we couldn't seem to cordinate it on the same day with Dr. Vehe so we will be going back up again next week on Wednesday for the appt. with Dr. Bothun. I am also very anxious for this appt. because at the last one the eye had not made any improvment and we had to up the steriod eye drops back up 4x a day.

Mike was unable to come with today and he won't be able to make it next week also so it was just Jackson and I today. For those that know me really well know that I HATE driving in the cities, I get terrible anxiety! I freak out even in the passenger seat and 10x worse when I am doing the driving. However today I did very well with maybe 1 or 2 episodes where my heart was racing. I am worried it won't be the same next week as we have a late appt. which dooms us for rush hour :P Since it was just Jackson and I today and we got done at a resonable time we stopped in Woodbury and went shopping. Got quite a few clothes for Jackson for fall/winter and then we lunch and headed home.

Thanks for checking in and I will update next week after the appt. with Dr. Bothun!

Sara

The other knee

Just a quick little update that I wasn't planning on doing but unfortunately we have a new joint affected. Jackson's right knee was the bad knee that he had the joint injection in 3 1/2 weeks ago. Up until now the left knee was not affected but I am disapointed to say now it looks as though this awful disease has spread to the left knee now too! I have been noticing that he has been limping slightly and walking a little funny lately. I just assumed it was the right knee that was bothering him, it is only a very slight limp that probably only I noticed because I watch him very closely now. Tonight I made him lie down and let me look at his knees and sure enough it looks swollen and when I feel it, it feels squishy and full of fluid. My heart sank, we are now up to 4 joints total with some tendons affected. So we are moving further away from Pauciarticular JRA and closer to being classified as extended JRA and possibly Polyarticular JRA. I am just so disapointed, after the joint injection and the start of Methotrexate (chemotherapy) he seemed to improve really well and I maybe got my hopes up to high that we were on our way to remission of this terrible disease. We already have a appt. with Dr. Vehe (Peds Rheumatolgist) schduled for next Thursday in Minneapolis so I can't wait to see him!

We also got the results last week of his last chest xray and the left upper lobe alectasis (partial collopsed lung) is gone! Yay, I was soooo relieved, they think it must have just been from being sedated that day.

Other than taking 2 weeks to get over a cold Jackson has been doing great! This week he is in bible school and loves it! He is so proud and tells everyone he is going to school! It is so cute, but he is going to be disapointed when its over at the end of the week. But in the fall he will be a busy boy with preschool 2 days a week for 2 hours and group speech therapy 2 days a week for 2 hours. For a little boy who has never been to daycare this will be new and exciting for him and me too! I can't wait for him to have the socialzation with other kids!

Well hopefully I won't have to update again til after the next appt!

Please send extra prayers and thoughts for Jackson this week!

Thank you! Sara

Update

Just a little update. Jackson has made quite a improvement in the right knee since the joint injection! The swelling has gone way down and it only takes about 10 minutes in the morning for him to walk on it! Compared to 2 hours before he could walk, which is a huge improvement. We have done 2 weeks of the methotreaxte injections at home, that has been going well. He lays down on the couch really good for me and doesn't even cry! He is such a trooper with all the poking and prodding. We are still weaning off the steriod eye drops so I will be curious on what the opthamologist has to say on the next appt. He still takes the Naproxen 2x a day also, which the plan is he will be on that long term or til he goes into remission. The one toe has gone down slightly in size but is still swollen. All in all he seems to be finally improving. It feels like we have been battling this for months but it has only been about 3 months. I just wonder how long Jackson has had this disease and we didn't even know it!
Jackson has been really sick with a cold the last week and can't seem to kick it so we might be making a visit to the Ped here within the next week if he doesn't get better. I kinda figured with having a immune system proplem plus being on a immunosupprsant drug would make for him catching every single bug but I guess the payoff to get in remission will be worth it!
August will be a busy month with 3 appts schuduled already. Unfortuntaly we couldn't get both the doctors at the childrens hospital schduled in the same day so I have to make the drive twice in two weeks. And Mike is out of PTO time so I will be doing it all alone! Jackson sees the Peds Rheumatolgist on August 12th and the Peds Opthlamolgist on the 18th and his Ped here on the 25th! Busy month!
Thanks for checking in I will update again in a couple of weeks after the next appt.
SARA

New Meds again:(

Yesterday was a long busy day at the childrens hospital. We had 3 appts, one with the Ped Rheumatologist, one with the Ped Opthalmogist, and one in the Peds sedation unit for a injection in the knee. Jackson did very well:) The injection was steriods because the knee was so big and caused a lot of pain and the meds were not doing anything for it. He was sedated when they did because of his age and because the have to the big needle all the way under the knee cap and into the joint. They allowed Mike and I to stay in the room and watch, it looked very painful! He did get some Fentyl for pain which seemed to help quite a bit, he was back up walking within a couple a hours. Dr. Vehe (rheumatolgist) thought they would probably inject his one toe that is really big but decided that it wouldn't help because that one isn't just full of fluid in the joint its in the tendon too, the same with the left ankle. Jackson did seem to be very restless last night and had me up at 1am so I am very tired today. Not sure if he was hurting or what. As of tonight though I have seen a big difference in the size of his knee already which is great!
There were still cells in his left eye which was very disapointing since we have been on the steriod eye drops for over 2 months and initially they made a huge difference. So given that his joints and eye have made no progress since the last appt. they decided it was time to go right to the big drug, methotreaxte. Huge bummer for me this is a pretty strong chemotherapy drug and I was hoping to avoid this option all together. However the risks of not taking the drug are worse than taking it at this point. The benefit of methotraxte is it will help both the eye and the joints and tendons and we can start weaning off the steriod eye drops since takin to long it cause glacoma and catarats. He will still stay on the naproxen though, again I am very worried about all this meds he takes daily being hard on his body! The methotreaxte is a injection that is given every week and I get to do it at home. The nurse went thru it with me step by step and even had me give her a practice shot. I was really nervous but she claimed I did really good and she couldn't feel it. I am also worried about the methotreaxte being a immunosupprasant drug and his immune system is already compromised. I have a bad feeling he will be sick a awful lot this fall and winter. But without controlling the swelling the fluid will eat away at his bones so I guess this is the best for now. Our next appt with Dr. Bothun(Ped Opthamolgist) is Aug 18th and I have to make one for Dr. Vehe (Ped Rheumatolgist) in 4 weeks.
On good note Jackson turned 3 on the 11th! We had a big party at our house with family and friends. Mike even suprised Jackson with getting a bounce ride for all the kids! It was a gorgeous day and the little ones played all day on the bounce ride, pool, slip n slide and the swing set. He is one spoiled little boy with all the presents he got. He had a thomas the train cake. I will post pictures at a later time as my lap top crapped on me and I have to use the desk top in the mean time.
Thanks for checking in!
Sara

Update

We have seen no change in Jackson since he started the ibprofen 5 weeks ago. The last couple of weeks seem to be worse. He is having a lot more pain at night that keeps him up crying and a lot of pain in the morning that he won't walk. The other morning he pulled himself around the house with his arms dragging his legs! By late morning he is usually up walking but if you watch him walk closely his walking is getting worse and you can see he favors the left knee a lot. But he is a trooper always trying to run around and be active. I sometimes wonder if he over does it but I want him to live and play a ''normal life!'' I called the pediactric rheumatolgist last Thursday morning after some pretty rough nights and he switched Jackson's meds to Naproxen which is stronger. He was also thinking he would end up adding another pain med with it to help. I am very disappointed the ibprofen wasn't working because if we keep going stronger on the meds the harder it is on his body when taking it regularly. But the outcome will be worth it. The doctor also wants Jackson to have a injection in that knee sometime soon and possibly the one toe because the swelling has not gotten any better but worse! The injection should have a significant impact on pain and swelling however it doesnt last forever. You can keep getting more if needed however Mike and I are only doing it this once to get the treatment going. Due to the fact Jackson is so little he has to be sedated to get the injection and we don't want to sedate him often for this! So hopefully we can find the right meds and Jackson will go into remission!

We have been feeling bad for Jackson lately so thought it would be nice to make a fun trip to the cities and go to Como Zoo! He had a lot of fun and keeps asking when are going back! He loved all the animals and we even rode a few rides at the Como Park. This coming weekend we are going to try going on Jackson's first camping trip to Holcombe. I have family that has trailers up there and all Jackson's little cousins will be there to play so were hoping it goes well.

Jackson's 3rd Birthday is coming up on July 11th! He is getting so big too fast!

Thank you again for checking on Jackson and all your thoughts and prayers.

May god bless you all!

Sara

Jackson had x rays and blood work done on Monday. The x rays showed no damage to the bones yet which is good. It did show inflammation in the joints affected. In the x rays they saw it in both knees, we have only been aware of one knee. They may cause them to change his diagnois from pauciarticular to polyarticular. His platelet count is back down to normal. He does have a high sed rate in his blood which is normal in kids with JRA. His hematocrit is low, they didn't eloborate on this yet though. But his labs for his kidneys are good, this will be checked on a regular basis to make sure the high doses of meds aren't affecting his kidneys. We still haven't heard back from the Ped regaurding his partial collapsed lung so I called again today and she just left vacation so I guess I will have to keep worrying about that for another 10 days!

Jackson is still having a lot of pain and a lot of episodes where he wants to be carried everywhere. I have been tempted to call the Doctor several times but I am trying to hold out the full 6 weeks. But it is hard to watch him suffer everyday!

We are now having issues with the getting charged double the co pay for each doctor appt. due to the fact the U of M Hospital sends 2 bills. This has been a nightmare for me that I may be forced to switch doctors and Hospitals. I don't want too but with all the co pays racking up I can't afford to be paying double just because they can't put the bill on one bill to satsify the insurance company! So well see what happens Monday.

On a good note Jackson has been enjoying the summer. Playing outside and we went to the circus last Wedneday. He loved it, he even rode on the elephant.

Thats it for now. Thank you again for checking on Jackson!

Sara

The things Doctors don't tell you!

After every appointment Jackson has I get a letter in the mail. Its a copy of the letter he sends to Jackson's Ped here in Eau Claire updating her on Jackson's condition. So last week I recieved the one from Jackson's Rheumatologist appt. on May 26th. Some of the stuff has me very concerned and I don't remember him going over it in the appt. I plan to call Jackson's Ped this week and go over it with her and see what she thinks. One thing is from his MRI that was over a month ago shows Atelctasis of the left upper lobe in his lung, which basically means collopsed lung!!! This concerns me a lot, it does say in the letter that this is somewhat concerning to the doctor and maybe he should have a chest xray. So I will be insisting on a chest xray to be done in the near future. It also says that there is a disease called Common Variable Immune Deficiency that present identically to JRA and is a consideration given his recurrent respiratory illnesses. Jackson has had pneumonia 3 times one of which landed him in the hospital in 2008. He also has adenopathy (enlarged lymphnodes), this is usually seen in systemic JRA which is not the one Jackson has so I don't know if this is something totally different or if its related. Jackson has been diagnosed with Pauciarticular onset juvenile rheumatoid arthritis with chronic uveitis with synechia of left eye. It is possible over the next 6 months he will progress to be classsified as extended pauciarticular or even polyarticular. They will also be testing him for some other diseases as well. His last set of labs show a elevated platelet count, not sure what that would mean but he will get more labs within the next couple of week so well see if its still elevated.

Jackson still has a lot of swelling, although the meds have helped Jackson sleep better it has done nothing for the swelling. I question how well its controling the pain because we still have episodes of Jackson not wanting to walk. We can't not start any kind of therapy until the pain and swelling go down. As of right now he has a swollen knee, ankle with tibal tendon involvement, and 2 toes. The knee is the worst of all of them.

All in all I am feeling a little worse after reading this letter and wonder why all of this was not brought ot our attention at the appointment. His next appt. is July 12th, the day after Jackson's 3rd birthday, we will be seeing both the rheumatolgist and opthmalogist that day. After a lot of talking I got them both schduled in the same day! Which saves us gas and from making 2 trips to Minneapolis.

I also got a letter from the opthamologist who said his eye has markedly improved since the last exam! Which is awesome. Lets hope by July all the cells are gone!

Thank you to all of you who check this site and think and pray for Jackson!

Update on the last 2 appointments

So I dont even know where to begin, there is so much to say! We had quite the week last week. There were a couple of days where Jackson would not even walk because his knee hurt so bad, he would just yell for me when he wanted to be carried to a different room. He is now taking a high dose of ibprofen 3x a day if it doesn't seem to work for the pain and swelling we will have to try a stronger med which is something we would like to stay away from because the prescriptions meds are harder on the body and one of them includes injections that we would do at home. But so far the ibprofen has been good for pain control but not the swelling. As of right now his right knee, left ankle and one of his left toes are swollen. All last week Jackson would wake up frequently thru out the night crying in pain, it was hard to see him like that and the lack of sleep was not fun! Since the increase in ibprofen he has slept all night in his own bed except 1 which has been a treat for us!

We had 2 doctor appts in Minneapolis last Wednesday, one with the pediatric Opthalmolgist and one with the pediatric rheumatolgist. We saw the rheumatolgist first, he did a whole history on Jackson and our families and then did a exam. He did confirm the diagnois they had already thought, Pauciarticular JRA. JRA is nothing like the adult form of arthritis, it is completely different. It is a autoimmune disease and there is no cure for it. The cause of JRA is unknown but some research indicates that it may be in the genes. His knee is the worst joint right now, it is very swollen and squishy when you touch it. It is filled with fluid, feels kinda gross. This fluid will eat away at cartilage and bone and disturb normal growth of the bones. So I am kind of not like the idea that we don't see the rheumatolgist for 6 weeks, if the ibprofen doesn't bring the swelling down I don't like the idea of letting it go that long before seeing the doctor to try a different med. He did give me a great book that he edited called ''Raising a Child with Arthritis.'' Its been a great book for me to learn more about the disease. The rheumatolgist also wants Jackson to have xrays and more blood work done in 2 weeks. He did have some blood work done last Monday and his white blood cell count was lower than normal.

We saw the opthamalogist next for his uveitis and that appointment went well they only saw 2 cells in his left eye which is less than it was 3 weeks ago. But because the cells aren't completely gone we have to continue with the steriod drops. We can hopefully be done with this drop after our next appointment in 6 weeks because prolonged use can actually cause cataract. But not treating uveitis can cause him to go blind so if his eyes are clear of cells in 6 weeks we can go down to see the opthmalogist every 12 weeks.

This has been very emtionally hard for me and I try to tell myself everday that thank god he doesn't have a tumor or some terminal disease but I still wish he didn't have to go thru all of this! It breaks my heart, every parent just wants there child to be healthy and normal and to know your child will have to live with a disease the rest of his life his hard. There is a quote in my book from another mother of a child with JRA that really sums up some of the feelings you have as a parent. ''Sometimes when I am alone, I cannot help but think about what it must be like to start a life with arthritis. And to never know a life, thus far, without pain.''

Yesterday was Jackson's ''Papa'' funeral, which was very hard. He will be missed so much but we are thankful for the bond that him and Jackson had. And we know now he will be always watching over Jackson!

I guess thats it for now. Thank you to those of you who check this site and for your thoughts and prayers. Hopefully we can find the right medication soon and Jackson can be pain free!

Sara

The last couple of weeks have been hard with Jackson. He seems to be more uncomfortable and in pain. We had almost a week straight of him waking up in the middle of the night in pain and crying. He has been complaining his knee hurts and the last couple of mornings he has been limping and not wanting to walk. It is very swollen. I had been debating on if I should bring him because his appointment with the rheumatolgist is tomorrow. But finally yesterday I brought him in. They did a xray and some blood work. The xray didn't show anything so that means the knee is related to his JRA so I am anxious for tomorrow I can't stand to see him in pain anymore. For now we are giving him ibprofen 3x a day to make him comfortable.

On a sad note Mike's Grandpa, Jackson's Great- Grandpa, had a massive stroke on Friday and passed away last night. Jackson called him ''Papa'' and spent about 3 days a week with him while Mike and I worked. So they were very close and best buds. Jackson is named after him, his name is Jack. He was a great man and will be greatly missed. Unfortunately Jackson does not understand where ''Papa'' is and still asks for him and when he sees a van that looks like Papas he thinks its him. Above are Pictures of Jackson and Jack. Thats it for now please keep thinking and praying for Jackson and for our loss.

Update

So today I recieved a copy of the referal letter the Opthalmologist sent to the rheumatologist that Jackson will be seeing in Minneapolis. After reading the referal it sounds like they are pretty sure Jackson has Juvenile Rheumatiod Arthritis (JRA). After trying to define all the medical words and doing my own research I am convinced he more than likely had JRA. He has a lot of the symptoms. JRA is a auto immune disease that is chronic that damages and destroys the joints. A autoimmune disease means the bodys immune system mistakenly attacks the tissues its suppose to protect. So I guess we will see and deal with it as best as we can. Thank you to those that pray and send thoughts to Jackson it is so appreciated!

I have decided to create a blog to keep everybody update on Jackson's recent medical issues. It wasn't working very well on Facebook and I have spent too much time on the phone and not enough time with my little boy!
Jackson's problems started out with a droppy left eyelid (medically called ptosis of the eye). Something we assumed would be minor and has been nothing but. I took him his ped when I first noticed it in March he blew it off as nothing to be concerned about. However it didn't go away and bothered me so we saw a different ped who refered us to a Optimalogist. We saw her the first week in April she first tried allergie eye drops which didn't work. So she wanted to do a exam with his eyes dialated. They gave me drops to dialate them myself before the appointment, when I did that the right pupil got very big but the left did not. It freaked me out so I know there was something a little more complicated than allergies going on. While doing the exam she noticed a nerve in the back of the eye was inflammed. Her first thought was Juvinelle Rhematoid Arthritis, that scared me! She refered us to a specialty clinic in Burnsville, MN. Its part of University Of Minnesota Childrens Hospital. We went there Monday April 26th. Wow what a long day, that place was so busy and they are very slow. We were there almost 3 hours with one crabby toddler! They dialated his eyes and did another exam but before dialating his eyes the doctor noticed his left pupil was always smaller than the right. She also saw the inflammed nerve, however her opinion was Horners Syndrome and possibly a tumor. We then schduled a MRI to be done 3 days later at the U of M Childrens Hospital in Minneapolis. He was sedated and had a breathing tube for the procedure which was very hard for me. He woke up pretty well but threw up all over in my car on the way home! Thank goddness we were only about 15 minutes away from where Mike's brother lives in Hudson so we had somewhere to stop to clean up. The Doctor called that night and said they didn't see anything to worrie about and didn't see any tumors, thank god! But that they needed to find out what was going on with his eyes and nerves so we then made another appt. for detailed imaging and lumbar puncture (spinal tap) which he would have to be sedated again for. We had that appt. today and by this point Jackson had had enough of all of this. The minute they brought us back to the room and started hooking him up to everything he got scared and started crying. He cried a lot until they gave him some med to calm him down and I rocked him to sleep. There was a optalmolgist, a fellow, and resident all looking in his eye. Guess thats what happens a university hospital. They all agreed that his nerve was inflammed but the problem was actually coming from his pupil and iris. They said his iris is stuck to his lens and his pupil is stuck to his iris, weird! They had put quite a few eye drops in throughout the morning to dialate his pupils and the left pupil was not circular, it was jagged. They saw a bunch of white blood cells pooled in his eyes which led them to the diagnois of Iritis, which is inflammation of the iris. Which is caused by a autoimmune disease, which one they aren't quite sure yet possibly going back to the Juvinelle Rhematoid Arthritis again. So we go back to Minneapolis on the 26th to see a Rhematologist to hopefully give us the last piece to the puzzle of what is wrong with Jackson! One strange thing that we really didn't think was related is one of his toes is really swollen which the doctor today said because its a joint and joints have to do with autoimmune diseases that he thinks it is related to his eye. A autoimmune disease is when the body actually attacks it own cells, sounds scary. The doctor said with treatment most kids still lead a fairly active and healthy life. It does compromise the immune system so he could get sick more often and worse than a healthy child. For now we are treating the left eye with steriod drops 4x a day and dialating the eye with drops to relieve pressure and help with pain.
So hopefully this site will help keep everyone in the loop and more time for me with Jackson!