Wednesday, January 25, 2012


The Last Two Weeks

I am so glad to hear from so many friends.  It is wonderful to feel connected again.  I really miss our wonderful friends in Maryland and Washington and our family everywhere.

The last two weeks have really been interesting.  Elliana pulled a hamstring muscle at the beginning of December.  She kept getting worse and her dystonia started acting up.  We went to the pediatrician and called the neurologist about the symptoms she was having a couple of times.  Finally, we had a mini miracle.  I had been trying to get Elliana in to see the neurologist, but they book up way in advance.  Then, after already trying to get an appointment earlier in the week, I called the clinic and they amazingly had had a cancellation and had a spot open for Elliana with the doctor that we had seen before.  The doctor saw her and thought about putting her in-patient, but decided to try a new medicine and see how she was after the holiday weekend.  Elliana only improved a little and was having leg pain and not walking right again.  So, on Tuesday the 17th, I drove her back to Primary Children's.  The neurologist did not have an appointment open, so we just showed up and asked to see the nurse.  The doctor was able to squeeze us in.  She was going to send us home again, when Elli insisted that she stay as a patient because she had been in a fair amount of pain.  The doctor decided to admit her.

Elliana and I stayed from Tuesday evening until Saturday afternoon!  Elliana had an MRI, x-rays, a bone biopsy, a spinal tap, a bone scan, and plenty of blood work.  She was a trooper!!!  She was sedated twice so that they could perform some of those procedures.  After all of the tests, it appears that Elliana has inflammation in her leg bone.  While we were in the hospital, there was some debate about whether the inflammation was from an infection or from an inflammatory condition.  She started antibiotics to be on the safe side, but now that more test results have come in, it looks like this is probably not due to infection.

We will follow-up with doctors on Tuesday, but it looks like she may have an inflammatory condition. This condition might actually explain a lot of the leg pain that Elliana has had even while she was being treated for her dystonia.  We may have blamed a lot of her leg pain on her dystonia, when she actually also had a bone condition!  Wow!  This child has had to deal with a lot for her age.

There were two good things that have come out of this hospital stay.  The first is that we may actually have a better idea of how to help Elliana feel better and walk better.  The second thing is that Primary Children's is a great hospital and they treated Elli very well.  She loved the play room that they have.  The volunteers in the playroom let her do crafts to her hearts content.  She got to paint and cover things with loads of glitter (especially pink and red).  She also got to order some of her favorite foods, like bacon, sodas, and Oreos!  The nurses were very nice and it is great to have so many medical minds working together to help Elli.

It was a great blessing to have my in-laws be able to take care of Becca and Julia while I was away.  It was wonderful not having to worry about how they were doing while Elli needed my full attention.

Hopefully, this week will be a little calmer!

Wednesday, January 4, 2012

It's About Time

Well, it is about time.  I have finally set up a blog.  It is one of those things that I have had on my mind for a long time but have never just jumped in and done it.  We have friends and family in so many places that it is way past time for us to stay connected, not to mention, I feel a little guilty that I get to keep up on what my friends are doing by viewing their blogs, but I haven't returned the favor.