Wednesday, October 22, 2008

An update and some thoughts

I know I haven't posted too much lately. I guess that is because there isn't as much to say, which is a good thing! Fall has come here along with some very cold weather! The heat has been turned on. I am dreading thinking about paying those heating bills.

Jacob has been relatively stable. Next Monday we have to go into Boston to see the orthopedic surgeon. He is going to do xrays to check the growth of Jacob's leg bones. I am very curious to see what the result is. I still think the leg lengths are off. I can see it in the way his shoulders are when he is standing. I am going to have the doctor look at the scoliosis also. I am also wondering if we should do another MRI of his knee. Jacob is still have pain with it. After soccer last weekend he was limping like crazy. He also has complained that if he sits to long on the floor he is getting stiff and sore.

Next week is also the rheumatologist appointment. It is on Thursday. This will be good timing to review what the orthopedic says. I am also going to have the Rheumatologist see what's up with his fingers. Jacob has been using a pencil with a thick grip on it and he says he is doing much better in school with it. His writing is awful though. He used to write so much neater. I don't know if it is because of the stiff/sore fingers or just laziness.

I just wanted to comment on the map I have on the side of my blog. I think it is so cool that people from all of the world have been following my son's journey. The rarity of the disease makes us all look for any info we can get our hands on. I started this blog because of finding "Anna's journey"when I was desperate to read anything I could to see what we were in for in regards to uveitis.
You can read anything you want in a book but I think reading other people's stories on the real life of fighting these diseases is so much more accurate!

Not only do the blogs help me to understand how our children and their families cope with chronic illness, the support group that I frequent ( have amazing moms who can answer any question imaginable. Out of the group of us we have all had experience in every aspect of Juvenile arthritis. So any question we have there is always an answer. Check out the site if you would like!

P.S. Shot day today! Jacob didn't remember this morning. Whew. He has asked the last few mornings if it was the day. So I will spring it on him when he gets home from school. The quicker it is done when he gets home the happier he will be for the rest of the night!


Shannon said...

Wow. I'm in Australia and my 6 year old son also has Juvenile Arthritis & Uveitis. How very bittersweet to find someone else battling such a horrid disease.

Now that I've found your blog I'll be reading with interest to see how your little man is getting along. Best wishes to you all... :)