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!