Day at Dupont

Today Skye and I spent the day at Dupont Children's Hospital in Delaware. Skye has not been feeling well. She has a rare childhood auto immune disease that wants to come out and play. If all goes well she will grow out of it by the time she is 18. Long wait... hahaha! We spent the day waiting , blood work, waiting, x-rays, and waiting.. then cafeteria lunch. (yummy)

We will get the results tomorrow. She is also scheduled for a bone scan at the end of the month. Back to her CRMO.(chronic recurring multifocal ostiomylytis) It basically causes lesions to develop on the growth plate, and can be trouble if it is injured. She has been taking an anti inflammatory med since her 1st big flare last winter. It is ok but I guess not strong enough. The next step is steroids, and methotrexate(yes a chemo). This will have its own side affects. I am encouraged by the doctor. I know Skye is in the best hands of all.....our GOD!!! She will be taking a rest from school but swimming as much as she can handle. This is so atrophy does not set in. 

   (back track) Skye has had joint issues for several years but I was told it was growing pains. I guess I just know my kids, and kept pushing till I found a doctor that was wiling to take labs on her. It is a hard disease to diagnose and also rare, so you do the math.  I always believe that a mom needs to trust her instincts, they are usually right. Sometimes a mom has to be the forceful, pushy lady in order to get what is best for her young...Like the animals...hahaha!!!!!

      I think the talk of the new meds make her a little scared but she is a brave girl. I have to say my kids day in and day out are my heros in many ways. They have the child like faith the bible talks about, and it reminds me of the wonderful gift they are to me!!!

I guess in my house the bumps in the road are more frequent, but our cries for help are always heard.

I will update the test results when we get them.

I will also be scheduling my back surgery this week. My goal now is to just get everyone healthy and ready for mommy to be out of commission for a while. I will be checking my facebook, and my blog.

Have a happy and healthy new year!!!!