Friday, August 20, 2010

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!

Thursday, August 12, 2010

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!

Tuesday, August 3, 2010

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