Flaring in eyes

I haven't updated in a while.  Everything was going fairly well except for a few complaints of pain here and there.  Jackson had a eye appointment the last week in June and his eyes are flaring up.  Not the news wanted to hear, so disappointing!  We had just pushed his infusions out from every 4 weeks to every 6 weeks 5 months ago and apparently it wasn't a good idea.  We were given the choice to either start coming every 4 weeks for a infusion again or stick with our 6 weeks and take steroid eye drops 3xs a day.  Very hard choice as they both have disadvantages and side effects.  For now Jackson choose the eye drops.  The following week Jackson had a infusion and appointment with Rhematolgy.  Dr. Vehe had said if there are still cells in his eyes in beginning of August he is going to up his dose of remicade.  I hate that idea but the steroids can only be short term use due the damage they can do in the eyes!  Upping the methotrexate just wasn't a good idea right now as Jackson has hard time with the methotrexate (chemo) making him sick.  So I am praying his eyes will clear up soon!

Brynley has also had her own set of problems since June.  In beginning of June she got extremely ill with high fevers going all way up  se was very lethargic.  I brought her into clinic one day, urgent care another day and er on a sunday night each time being told she just had a virus.  I had even mentioned her breath smelled really funny like she had a infection or something in there.  Still told she was fine just a virus.  Well as a mother something kept telling me something was just not right.  So for a 4th time I brought her back in.  When we left the house her temp was 101.5 by the time the nurse checked us in it was 104.9!  Very scary.  They were all running around and going to give her a tylneol supposortory.  This time the doctor was very thorogh and after some tests we found out she had strep throat.  She had been suffering through it for at least a week if not longer.  After being on antibiotics she didn't really seem to get better.  She was still whiney and her knee started swelling.  So back to the doctor we went for a 5th time.  They were very concerned and did a lot of blood work, exam and ekg.  She was diagnosed with streptococcal reactive arthritis and put on prophlax antibiotics for 2 months.  She started to get better but then on a Saturday spiked another high fever.  So again back to the doctor for 6 time.  This time the doctor did more blood work and she had some blood work that was not normal.  Some proteins and white blood cell count were high.  Brynley was diagnosed with a heart murmur when she was a baby and they did a ekg and diagnosed it as a innocent heart murmur.  Well due to the rececnt infection that went on for awhile before being caught and a change in the sound of her heart murmur they thought she should have a echocardiogram and see a pediactric cardiologist to make sure her heart is ok.  We are hoping it is nothing and that the strep didn't spread to heart and that the heart murmur is still innocent but need to know for sure.  I don't know that I could handle another child with her health problems!  I will update after echo is done and results are in!  Please keep our family and especially my children in your thoughts and prayers!

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!