Still Riding the Roller Coaster!

Wow - Well today was Olivia's big day. The day we'd been waiting for... for answers, for information, for a plan of action. Her appointment at Rheumatology was at 8:15. Steve was able to come with us and for that I am sooooo thankful. We had an enormous amount of information thrown at us and I am hoping between the two of us we gathered most of it.

I have to start by once again saying how thankful I am that we live close to Children's Hospital and not just any Children's Hospital but ours. It was ranked 3rd in the Nation last year and each time I walk inside it's clearly written on the walls why it is one of the best. Everyone from the information desk to the specialists are kind, warm hearted and child-centered. It's an amazing place and we are blessed to have it as a resource.

So here is where we are at... which is still on the roller coaster.

They DO NOT think Olivia has Lymes. This took me for a major loop and although that would delight me I was having a hard time grasping what they were saying as it was a polar opposite from what we were told last week. It's a long story as to why but it sounds like the tests are fairly complicated and not as clear as one would hope. They did another blood draw today to retest which will hopefully confirm that she doesn't have it but we'll see. Results should be back in a week to 10 days.

With that said, they did say she had Juvenile Rheumatoid Arthritis(JRA). This can be both a positive and a negative at this point. Worst case scenario ... it's manageable, best case scenario she grows out of it eventually which about 50% of children do.

In the mean time, and proceeding assuming that the Lymes is negative, we'll be visiting Children's quite a bit and monitoring quite a lot. This includes...

-Having an outpatient procedure to have a steroid shot into her knee to put the arthritis into remission. If that doesn't work she'll need physical therapy.

-Having her leg bones measured to be sure that a growth plate hasn't been stunted making her right leg slightly shorter than the left. If this is the case she'll need a lift in her shoe to help everything grow correctly but he said she'd grow out of it eventually.

-Monitoring her eyes on a pretty consistent basis because a side effect of JRA is a potential eye/vision problem called uveitis.

-Monitoring her kidneys and liver due to the Naproxen (which is basically Aleve) being a long term therapy/medicine.

SO... We left today feeling overwhelmed but hopeful. Our little Olivia has a few big months ahead of her. If I was understanding correctly the Lymes test results won't change the outcome (JRA) but will change how we treat it.

THANK YOU, THANK YOU, THANK YOU to everyone who has been sending emails and leaving voice messages letting us know you were thinking about us. It is greatly appreciated!!