Finally, some answers...

     Well, I finally got the call from Elliana's doctor that I have been waiting for.  About ten days ago, Elliana had a second bone biopsy.  This one was done by an orthopedic surgeon and they took two or three tiny pieces of bone from her ankle.  Elli's pain has subsided a lot since then because she has been using crutches and a wheelchair.  The fact that she has not been putting much weight on her legs has helped her to have a lot less pain.  The doctor finally called with the results on Friday night.  He said that the biopsy came back with results that support the idea of CRMO (chronic recurrent multi-focal osteomylitis).  We have been waiting for this diagnosis because now that we have it they can start steroids or other treatments to help with pain and control the inflammation that is in her bones.  The condition mainly occurs in children and some teenagers.  Often people outgrow it!  It is an inflammatory condition that will get worse at times and then subside.  It can be very painful and Elli has had a few possible sights, namely her pelvis, a knee, and an ankle.  We have realized that some of the pain and difficulties Elliana has had when walking the last couple of years may actually have been caused by this condition.  It is a difficult condition to diagnose and occurs more often in girls, but with a 1 in a million rate.  We are waiting on results for genetic testing for dystonia.  There is a chance that she might not have dystonia after all.  Many of the symptoms that we have credited to dystonia might actually be caused by this inflammatory condition instead.  Honestly, I think she might have both, but even if she does, I think that her dystonia is not nearly as severe as I had thought before.  I think that the CRMO made everything much worse.  Hopefully we will get the results of the genetic testing within the next few weeks.  Thank goodness for modern medicine and wonderful doctors!
     Onto other events, I took a well-deserved night off while my in-laws watched the kids.  Caring for Elli lately has been pretty intense and it is hard having David gone still.  My in-laws help quite a bit, but I really needed some "me time".  I grabbed dinner at Texas Roadhouse, went shopping at the mall, and watched a movie at the theater.  I saw "Big Miracle" and it was quite good.  I would recommend it for older kids and adults, but not younger kids because it deals with Inuit hunting and more mature topics like that.  It tells the story of a whale family that was trapped by ice near Alaska during the 1980's.  I actually remember this happening and enjoyed learning more about the circumstances surrounding the rescue efforts.  It was so nice to have a break from parenting and just enjoy myself.  I am glad that my in-laws helped with the kids and let them have a fun pizza and movie night!

Crazy Hair Day at School

Rebecca got to do her own "wild" hair do for crazy hair day at school.  I think that this is her dream come true!

We Love Primary Children's Hospital

Well, we do love Primary Children's Hospital.  We have had lots of opportunities to see doctors there and we are so grateful to live so close to a wonderful hospital.  The doctors that we have seen have been very experienced.  The Child Life workers have been so helpful and the volunteers are great.  I also love how they decorate everything and make it so appealing.  While Elli was in the hospital they sometimes had live music, including a harpist, Disney songs with a plastic drum, and people playing a baby grand piano!

Today we went to visit Elli's rheumatologist.  Elliana is a little scared of this doctor for some reason.  I think all of the procedures in the hospital have made some medical experiences fairly scary.  Elliana started seeing this doctor in the hospital and has seen him once since.  The last time she saw him, she curled up in a ball on the exam table and hid.  This time, she started to hide a little, so the doctor called the Child Life specialist.  When the specialist came, Elli started to warm up.  Then, she provided Elli with a container of bubbles and Elli really started to feel better.  Soon, she was blowing bubbles all over the exam room.  Then, I suggested that she blow bubbles at the doctor!  Elliana started grinning and thought that was a great idea.  Apparently doctors aren't quite as scary if you can blow bubbles at them!!!!

Rebecca is doing well.  She and her friend Julia are working on a project about the solar system for fun!  They want to present it to their class in a week or two.  I am glad that she can appreciate science as much as she does.  She is also really improving on her violin.  It is fun to watch her starting to develop a talent and learning about how to read music.  She is always eager to play for an audience.

Julia gets to spend a bit of time with her great-grandparents.  They are nice enough to watch her and they love being entertained by her.  She always manages to find some kind of candy, nuts, or cookies to munch on while she is there!  She also likes preschool.  Several weeks ago they learned about penguins.  She said that her teacher said that Macaroni penguin eat macaroni!  She also said that her penguin was kissing Timmy's penguin "like they are married."  Oh boy, here we go again with little crushes!