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