Wednesday, September 28, 2011

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!

Thursday, September 15, 2011

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!

Sunday, May 8, 2011

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!

Thursday, April 7, 2011

Frustrated with Rheumatolgist

Up until this point I have been so happy with Jackson's Ped Rheumatologist. A few months back Dr. Vehe had said that Jackson's albumin levels in his blood have been slowly dropping at each blood draw and were now below normal and he was going to monitor this very closely. I was told it could signal a GI system problem. We are suppose to have labs drawn every 8 weeks but its been 3 months. I have asked Dr. Vehe at the infusion in March if he was going to get labs to re-check the albumin and he said no well do it next time, ok fine. So we go for next infusion which was yesterday and I have the doctor on the floor call Dr. Vehe and ask if we are going to get labs today because its way past the 8 weeks and he told her no!!!! I am beyond frustrated. First off he is suppose to get them no matter what to make sure the nasty meds he is on aren't harming his organs and second I thought we were monitoring the albumin levels. So I think I am going to just call Jackson's Ped here and ask her to do it, she is awesome. For quite a few months we have noticed Jackson's left knee to have a little bit of fluid and swelling. He has also been complaining about it a lot in the last few months. At our appt in March Dr. Vehe confirmed the presence of fluid and said if the swelling didn't go down we would maybe up the remicade dose. Well the swelling hasn't gone down and it causes pain for Jackson. So yesterday after telling Dr. Vehe this and telling him about the night it hurt so bad Jackson couldn't walk he says that Jackson is hyper-mobile and he probably just gets sore from being so flexible! Seriously!!! Then he says depending on Jackson's eyes on the 20th (which had cells in them in Feb.) we should maybe switch his infusions from 4 weeks out to 6 weeks. Yeah great I hate the infusions but this is completely opposite of what he said the month before and his disease has not improved. I wonder if he just has to many kids he sees and forgets what he says and then has a different opinion?! I feel that if he keeps up changing his mind about treatment I may have to find a different Ped Rheumy. We see Dr. Bothun (eye doc) on the 20th and I will probably voice my concerns with him about Dr. Vehe and see what he thinks. Dr. Bothun has been awesome and was the one who actually finally got a diagnois for Jackson. So April marks the 1 year anniversary of when we started being sent from specialist to specialist having test after test done to find out what was wrong with our baby boy. We were told everything tumors in the lungs, neuroblastoma, horners syndrome. 1 year ago this was the worst month of our lives, I was so scared. It would take until the middle of May and our first visit with Dr. Bothun before we got a actual diagnois. Still scary and sad but it sure beats the tumors and neuroblastoma that they had thought and tested for at one point! What a year it has been and everything my little boy has gone thru! He is such a trooper though and just full of life! It broke my heart yesterday when they put his iv in and I had to hold him down as he is screaming "please don't." Then when he saw his blood on his hand he got scared and started crying so hard. On a positive note a week and half ago we got our dog back!!! She had been missing for 20 days. I am so happy to have her home and so is Jackson. He keeps saying he missed her so much! Thanks for checking in! Sara

Friday, March 18, 2011

Mourning the loss of our Marley!

It has been way too long since I have updated this website! So there is lots to talk about.
Last blog post was right after Jackson's surgery which he recovered from 100 percent! Since then we have had 2 iv infusion treatments. I started scheduling them early in the morning in hopes that we would get home sooner but for some reason we are still getting home at 9pm! They say its because of pharmacy and mixing the remicade but it gets longer everytime, I just don't understand! Our last iv treatment was awful, we had the roommates from HELL!!! We will have 1 more treatment in this hospital on April 6th and then its off to the new hospital. I am sooo excited! All the rooms are private and everything will be brand new.
Jackson's last eye appointement was the very end of Febuary. There were no cells in the left eye, which was usually the one with the most. However there were a few cells in the right eye. I assumed there would still be cells, his eyes have been such a battle!
We saw the rheumatolgist a week and half ago and there is still fluid in left knee which has slowly started to bother Jackson more and more. This is discouraging as I had this hope that we could be in remission by now but it looks like its going to be awhile if ever. We will continue to monitor this. Dr. Vehe said there is room to move up the dosage in the remicade treatments if the knee or eye don't improve soon. They are also monitoring the albumin levels in his blood since they are continuing to go down every blood draw. They are currently below normal level right now. That can sometimes signal a GI system problem so we are hoping for a good outcome.
We also found out a couple weeks ago that we are having a baby girl!!! So happy and now we are done having kids. I feel like we will have our perfect family now. I have talked to my OB doctor about the possibility that Jackson's disease is genetic and she thinks its a very slim chance that we would have another baby with JRA. I am still a little worried about it but the fact that Mike and I don't have any family history of JRA, RA, or any autoimmune disease makes me think this baby will be perfectly healthy!
On a sad note, our black lab Marley ran away 10 days ago. We still haven't found her and I am so sad! She was my first baby (before Jackson) and we have had her 5 years. I am not giving up hope for her yet! Jackson and Marley were buddies too so he is missing her also. He opens the back door and calls her name. Everytime we come home he asks if Marley is home yet. Today it was warm enough to be outside for a little bit and Jackson wanted to ride his bike so we went a block down the road. Jackson said I am going to look for Marley and called her name the whole way. It breaks my heart to think we may never see her again. I am praying and hoping she is still out there!
We finally went on our trip to Wisconsin Dells for a few days this week. It was a lot of fun and Jackson loved it! He played so hard that by the day before we left he couldn't even walk his knees were sooo sore. I felt bad but he deserved some fun for once. Just another constant reminder that my child is not a normal child and it's just not fair. Its not fair that in order for him to enjoy something really fun he had to suffer for it in the end!
One good thing is Jackson had managed to stay cold free for about 2 weeks now, which seems to be the longest all winter! Hope it stays this way!
Thank you for all the thoughts and prayers for Jackson and his battle with this awful disease! Please also pray for 2 friends of mine who have children dealing with awful diseases and medical problems. Jackie, her sweet little Nash who is a only a month older than Jackson had brain surgery on Wednesday. Reene, sweet little Neveya who will be in the hospital for awhile for iv nutrition. And of course prayers and thoughts to all who suffer with JRA!

Saturday, January 29, 2011

Jackson's Surgery

I feel like it has taken me forever to post a update! Jackson has been doing very well! His last eye appointment in Dec. the eyes were clear and we have another eye appointment in the next couple of weeks so I will be anxious to see if the eyes stayed clear. I am however not counting on it since we postponed the remicade infusions for 3 weeks and methotrexate injections for 2 weeks because of his surgery. Jackson had hernia repair surgery almost 2 weeks ago. I was very nervous because he is high risk of infection because of all his meds supressing his immune system. But he is great and so far no infection! Coming out of anesthesia was rough, Jackson was not happy and cried a lot. I finally convinced the nurse that he would be much more comfortable at home so they let us go. After we got home things went well. He walked hunched over and holding his stomach for only 2 days. I kept him home for the entire week and had him watch movies to make sure he would rest. I still have yet to see the incision because its covered with a clear dressing and there is blood under it that I am not suppose to touch! We go back to the surgeon on Monday morning to see how he healed. Then Wednesday we go to Childrens Hospital in Minneapolis for his infusion. I also have my own doctor appts next week too, so it will be a busy week for me.
I am also happy to announce to those of you aren't friends with me on facebook that we are expecting baby #2 in the begining of August! We are very excited and Jackson is excited to be a big brother. He thinks he also has a baby in his belly too, lol! I am a little nervous about having a new baby and dealing with all of Jackson's medical issues but it will all work out. And it gives us something exciting and positive to look forward to!