Great Eye Appointment

A couple weeks ago we had a eye appointment with Dr. Bothun and everything looked great!  He had one cell in each eye but Dr. Bothun was reassuring that this was nothing to be concerned about and is ok for someone with this eye disease.  The only thing that makes me wonder is when we saw Dr. Vehe last (Rheumatolgist) he didn't think this eye exam would mean too much because it was so close to be right after Jackson's last infusion.  He thought it would be much more telling if we schedule the next eye exam right towards when his next infusion is due to see if the 6 weeks is ok inbetween treatments or if we should go back to every 4 weeks.  Every 4 weeks makes me cringe so I hope the next eye exam is good but Jackson's eye disease was our biggest battle so far.  After his eye appointment we went to the Minnesota Children's Musuem.  He had a great time there.  Thats something I have wanted to do but never was brave enough to try and find my way to it until now 3 years later.  Afterwards we stopped in Woodbury to eat.  It was nice to spend time just the two of us.  Other than that he has been doing so much better than my last post.  He has been fairly healthy (knock on wood) lately and has not had any complaints of his shoulder or wrist hurting again!  Big relief!  So overall the last month has been great for him it almost makes me forget he even has this god awful disease!  His next IV infusion is this coming Wednesday which he is already begging me not to have to go which of course breaks my heart but it is what is best for him.  It is what makes him seem normal even though its no doubt he will be sick shortly after the treatment as always.  I have a lot people who tell me how strong I am for having to do this all the time but I am not strong.  I do what I have to do for my child.  Inside this hurts me but I have to be strong on the outside for Jackson's sake.  I have many times were I break down when I am alone, this never gets easier it just becomes a way of life.  I worry most of his future.  I have no idea what his future holds with this disease and I pray for the best.  I just want him to live a normal life!  It has been almost 3 years since Jackson was diagnosed.  It feels like longer.  I am so proud of how brave he is and everything he has overcome.  Life can be so hard sometimes and I always try to remind myself that there are much worse things and to be thankful for everything I have!

Possible flare

Its been awhile since I have updated this site.  Jackson has had a rough last few months.  He has been quite sick a few times.  I think this year has been worse because he is in school now and exposed to so many germs that his body can't fight.  In the begining of December Jackson went 7 days without eating.  He did vomit twice during the 7 days but it didn't really fit the symptoms of a stomach bug.  But thats what the ped said it was.  Thank goodness he finally started to eat again as I was getting worried.  He went from 40lbs to 36lbs during this time and still hasn't put the weight back on.  He stayed healthy for a few weeks and then got really sick a couple weeks ago.  He had high fevers and was very lethargic for 4 days.  We were extremely worried about him.  I was so worried he slept with me the whole time so I could keep checking on him.  At one point his fever got as high as 104.9 and his o2 stats were 93 percent.  He took 5 days of tamiflu and a antibiotic and finally back to feeling good again the following week.  Because of all this he was 2 weeks late getting his infusion so I am a little worried on how that will affect his arthritis!
A couple weeks ago Jackson started complaining one of his shoulders hurt.  I brought it up to the rhemotolgist last Thursday while we there and he felt and noticed when he asked Jackson to run down the hallway he held that shoulder funny.  He said that joimt is hard to feel and harder to pin point if its the arthritis causing the pain.  He told me to watch it and if it gets better after the infusion but then hurts again closer to when the next infusion is due we can pin point it better to being the arthritis.  Last night he started complaining of his left wrist hurting so I am wondering if he is flaring.  I wonder if because he was so late with his infusion it is causing all this pain all of sudden.  I am sad about all of this and would like it all to go away!  It gets very hard to constantly deal with a sick child.  To date he has missed almost 20 days of school due to appointments and illnesses.  Its just not fair!  He does not take a daily NSAID anymore because it was causing a lot of stomach problems so we stopped it but I am going to ask if maybe we could try a different one for now until we get the pain under control. 
Last eye appointment was the end of December.  Overall good appointment.  Left eye had trace to 1+ cell and right eye no cells with scaring.  So not perfect but I will take it.  His vision has greatly improved since having glasses.  When he first got the glasses we were told it would only be temporary but now the doctor said to wear them at least 2 more years and then maybe we can talk about not having to wear them.  So that was a little disapointing. 
As Jackson has gotten older I have tried several times to explain his disease to him and what it all entails.  Until recently he assumed this was normal for all kids, so sad.  I bought a couple of kids books off amazon that take about JIA.  We have read them a couple times.  He seems to understand very little which makes it hard but he is young yet.
March marks 3 years since we first noticed something was wrong with Jackson but it took them until the end of May to get a official diagnois.  I can't believe its only been 3 years, it feels like it has been years.
Well thats it for now.  Thank you  all who send thoughts and pray for Jackson.  People often don't think to ask how Jackson is doing with his disease and for those that do it means so much to me that you care enough to think of him!

Uevitis is creeping back

So back in May both Jackson's doctors aggreed that his eyes and joints have been quiet for awhile that maybe it was time to start stretching the remicade infusions out to every 6 weeks instead of every 4.  Well a few months after doing that his eyes have now started to flare.  So disapointing.  I was not expecting this news at all.  Everything had been so good I just thought this appointment would be the same.  He also said one of his eyes was weaker than the other eye.  As far as that goes we will see how it is tomorrow at our appointment and if there is no improvement were going to try patch therapy before going to glasses.  Patch therapy is were Jackson would wear a eye patch over the strong eye for a certain amount of time to see if it will make the weak eye stronger.  If that doesn't work than we will probably be looking into glasses.  If there is still cells in his eyes tomorrow we will move the the infusions back to every 4 weeks.  His last rhematology appointment and infusion was 3 weeks ago and it went well.  No sign of flaring in the joints just some hypermobility and boney overgrowth.  He was suppose to get labs at the last infusion but the nurses didn't get the order so he will get them in 2 weeks at his infusion.  He also suppose to get a antibody for double strand DNA which I am not quiet sure what that test is all about.  I tried googling it but didn't get much.  I plan to ask Dr. Bothun in the morning. 
Jackson started kindergarten this year.  He loves school for the most part but he is very wore out from it.  Its been nice for me to get the one on one time with just Brynley while he is in school.  I am a little nervous as we go into flu and cold season but hoping it won't affect him to bad.  Hoping I will have time to update after the appointment tomorrow.

Big decision to make

Its been a long time since I have updated this blog. Life with 2 kids keeps me very busy! Things have been going very well. Jackson has been doing so well. He has complained of knee pain here and there and some pain in his fingers. But nothing that has lasted more than a day or two. His one toe continues to be swollen and has some boney overgrowth. He is currently sick at the moment and has been for about 10 days now so I am hoping he gets better and not worse. This time a year ago he ended up very sick with pnemonia, so I am praying not to have a repeat. We just had a eye appt last week and his eyes are still clear!!! So awesome. Since we spend so much time in the cities at appointments and Jackson is always getting poked and prodded we thought it might be fun for Mike to take the day off of work and come with to the eye appointment and go to the Mall of America afterwards. It was a lot of fun. Jackson was so brave and went on a lot of the big rides and even the rollar coaster. The rhematology nurse called me yesterday to let me know that Dr. Vehe and Dr. Bothun talked yesterday and decieded that we could either push the infusions out to every 6 weeks instead of every 4 or be done with infusions and do a humira injection at home. This is a very difficult decision for us because there are pros and cons to both. I hesitate to switch drugs when this one is working so well. It would be so much more convient to not have to travel so much but yet I want to do whats best for Jackson not what is convient for me! It also worries me that humira can be a very painful injection and we are really having a hard time giving him his methotrexate injection that I feel humira would be worse and make even his methotrexate worse. So I guess I am leaning more towards staying with the remicade infusions and just trying to stretch them out to 6 weeks. If it works and he keeps doing good then maybe we could consider humira. I just dont know, I hate making these kind of decisions!
Jackson is doing very well in 4K, he loves school. I just can't believe how big he is getting! Next month marks the 2 year anniversary that he was diagnosed with JIA. It feels that we have been on this journey for more than 2 years! Jackson's little sister is almost 9 months old. Brynley has 2 teeth and just started crawling! Life is crazy and stressful at times but I love it!

Great news at eye appointment

Today we had a eye appointment up in Minneapolis. The morning started off really bad. Brynley decided she didn't want to go to bed last night until after midnight. My alarm went off at 4 and I slept thru it for quite awhile which I never do. We got Brynley dropped off at Great-Grandma's house and headed to Minnesota. I always leave about 15 minutes early because of the morning rush hour up there is horrible. Well today it was the worst it ever has been! There was a stalled car, a car accident and then the normal heavy big city traffic to make things difficult. We were in stop and go traffic on the freeway for 35 minutes. Then when we made I got lost at the clinic (new building and only the 2nd time I have been to this one). So we were 25 minutes late to Jackson's appointment, luckily they were understanding and didn't make us re-schedule. This was a great appointment, both eyes were clear of cells! Dr. Bothun gave us the go ahead to stop the steriods in the eyes finally. He has been on them 16 months and prolonged use can cause glaucoma and catarats. we have to go back in 2 months to see if the eyes are still good. If they are then in 6 months from then we can maybe talk about stretching the iv infusions of Remicade out to every 6 weeks instead of 4. Then if everything is still good after that we can start decreasing the methotrexate injection dose. These are all maybes if his disease does not flare up. So I am hopeful but yet nervous. This disease can be so quiet and then flare up with a big boom! Jackson started school recently, 4k and he is still in group speech therapy this year. He loves it and is doing so well. I am just hoping he can stay somewhat healthy this year. Wishful thinking I am sure with having a comprmised immune system. We go to see Dr. Vehe (rheumotologist) on the 10th and have a infusion that day also. I am going to talk to his doctor about some stomach pain Jackson keeps complaining about almost daily. He is also having at least3-4 bowel movements everyday that are not normal so something is going on. Just not sure if its related to the JRA or side effect of the meds or something completely different. I don't think its the meds since he has been on them over a year now. Jackson continues to be a great big brother and loves his sister a lot. Tomorrow is my first day back to work. I have been very emtional about it all day. I am so not ready, I would love to just stay home with my babies. It has been great being home with them and getting Jackson to and from school. Thankfully I only work 3 days during the week and the kids go to great-grandmas so there not at daycare. It would be nice if Brynley would go to bed before 11pm at night so I could since I have to be up at 4am when I work. She sleeps great at night 5-7 hours straight once she finally falls asleep!

Thanks for reading and please continue to pray for Jackson to make it to medical remission sometime in the near future so we can get him off these nasty drugs at least for a little while!

Its been a long time!

Wow it has been so long since I have updated this site!

Jackson is doing very well! His joints have stayed good for the most part. Occasionally he gets some fluid and swelling in his knee but it goes away as soon as we do the next infusion. We see Dr. Bothun on the 28th to check the eyes. Its been awhile since we have seen him so I keeping my fingers crossed that they are clear! He only takes 1 eye drop a day now. The infusions have been going so good since we got the insurance to approve it as a outpaitent treatment. Before Jackson would have to be admitted to the Children's Hospital and get his treatment. Now we go to the Children's Hospital but we go to the infusion center which is outpaitent and it cuts the time in half! When he was admitted we would be there from 8am til 8pm, now were there 7:30am til 12:30pm! Makes life a whole lot easier. If his eyes are good on the 28th we may even decide to push the infusions out to every 6 weeks which would be nice. The summer gave us a nice break from all the sickness. Becuase of the meds Jackson takes his immune system is commpromised so he was always sick. So I am bracing that with fall here and winter coming that this winter will be no different:(.

We had a baby girl on July 28th. Her name is Brynley Elizabeth, weighed 6lb 5oz and 19in long. We are so blessed! Jackson loves her a lot and is very helpful. He is a little jealous of our attention though and has been acting out a lot but were working on it.

Well thats it for now. I will try and update after the appt on the 28th!

May marks the one year anniversary of Jackson's diagnois

I have gotten so bad at keeping up with blogging! April was a very rough month for Jackson. He was pretty much sick with a could the entire month. Then a few weeks ago he came down with a high fever while I was at work on a Sunday. He had also threw up that morning. I came home from work and he just laid around all evening. I had to work Monday and so did Mike but my Mom was babysitting so I felt ok going to work knowing he was with my Mom. His fever seemed to go away that day and he was doing ok. I still took him to the doctor after work to have him checked out. We couldn't get in to see his normal ped so we saw someone else. I hate seeing someone else who doesn't know him as well or his history or disease. So of course I got the he is fine, its just a virus. When we got home he seemed to be feeling better and it was beautiful out so we played outside for awhile. Then later that night of course he spiked a fever again. The next day the fever went away but Jackson was sleeping a lot and miserable. He kept spiking high fevers at night and everyday seemed to be getting sicker. I was off work Tuesday and Wednesday but went back Thursday. There was extra staff so I left right away and came back home. It was still early so we waited for urgent care to open and I took him in. He had a ear infection and pneumonia. The doctor hesitated at calling the rhemotolgist about admitting him to hospital but decided not to you, thank goddness we were more comfortable at home. He started antiboitics right away. After a few days he started feeling better but he was only better for about a week and he ended up with another cold!!! I am so sick of Jackson being sick. That night Jackson slept in my bed and kept me up all night. I had to get up at 4am for work the next morning. I got up that morning and told Mike this was it, I was taking Jackson off his meds because I couldn't deal with it anymore. Of course I am not and I was just frustrated and very sleep deprieved. Mike reminded me of how much his joints would suffer and the pain he would have if we did that. I am feeling very overwhelmed, sad, and stressed.
May is arthritis awareness month and also May marks the 1 year anniversary since Jackson was diagnosed with JRA. Jackson has gone thru so much that it feels like he has been sick for years but its only been 1 year. I can remember like it was yesterday how awful this month was a year ago. We made countless trips to Minneapolis to the children's hospital being sedated and going thru test after test. We were told he may have horners syndrome, tumors, neuroblastoma, etc. The scariest time of my life ever!
Jackson had a eye appointment last week and his eyes are clear and looking great!!! I just pray it stays that way. We are decreasing the steriod eye drops to 3x a day for 6 weeks and then down to 2x a day and then 2 weeks at 1x a day. Dr. Bothun (eye doc) does not think we should we push the remicade infusions out to every 6 weeks. He thinks we would be pushing too much at one time and we should see how he decrease in steriods go first and if all goes well then stretching out remicade might be a option. I love the thought of going every 6 weeks instead of every 4 weeks but I have to agree I am a little scared to do too much at once especially since Jackson is still complaining of knee pain often. I just wonder if my little boy will ever get to a point were pain is few and far. It gets hard for me when we go places and he wants to be carried because he gets sore and being 6 months pregnant it is getting hard for me to carry him. I sometimes wonder if with all we go thru with Jackson and adding a newborn into if we aren't getting ourselves into more than we can handle. But I think it will be ok and we will adjust and it gives us something good in life to look forward too! I should also mention that Mike is going back to school in the fall so life is going to get really rough. Mike has a associates degree and is going to get his bachelors degree. I am preparing to pretty much be a single mom which is going to be hard but I know it will be worth it and make for a better life for us in the future.
I am now 27 weeks pregnant, 1 more week until 3rd trimester starts! I am feeling ok, a little tired and wore out. I wasn't working at the nursing home at this point in my pregnancy with Jackson so it was easier. This time I will work until the end and with my job being so physical and on my feet 8 hours I am wore out. But I keep telling myself only 13 more weeks. I have been trying to enjoy this time as I know the sleepless nights and craziness thats to come. But as I have been going thru all the baby girl clothes and putting them in her closet and I just ordered her crib I have been getting more anxious for her to be here. I feel a little overwhelmed with what needs to be done before she gets here. One of my major projects is the nursery. It is currently Jackon's playroom and I have no idea what I am going to do with all the toys in that room!