We're almost there!!!

It’s week 3 for the CIT program and we arrived in Charlottesville early on Friday instead of Sunday. Mark and I wanted to see some of the beautiful landmarks we hadn’t seen before so we drove down there as a family for the weekend. We drove in separate cars since Mark had to drive back home on Sunday. This weekend, we decided to check out Luray Caverns, (which I thought was on the way to Charlottesville but I was wrong by…oh, 90 miles,) Carter Mountain for apple picking and a local winery.

Here are a few pictures of our fun filled weekend!  

The leaves are changing color early this year. It’s ok with us…Frankie is using her right hand more and more and we have every reason to celebrate! I captured a video clip of her picking up some leaves.Proud moment!

I have to start by saying what this week's "cast question" was that got my attention! We were in the elevator at the hotel and this man looks at Frankie and asks, "Oh, honey, did you get yourself into a tussle?" Without knowing for sure what context this man was using, I explained to him why she had the cast on. I thought to myself, surely he doesn't think my daughter got into a scuffle?!! I'm pretty sure he was kidding.  

Before we met with our OT team on Monday morning, we had our 6th month follow up appointment with Dr. Romness who is an orthopaedic surgeon at UVA. He happens to have an office in the same building that our therapy team is in. We have made the trip to see him a few times before so he’s been a dweller in our village for a couple of years. He’s a very well known Dr. that specializes in the musculoskeletal system in children, focusing on lower extremities.

What does an orthopaedic Dr. do for us? Dr. Romness studies Frankie’s gait, puts her in flexible positions to test her range of motion in her hips, legs and feet to decide what orthotics, if any are needed. He is trained to be an expert at looking at muscle and joints from the outside in. If needed, he gives us a script for custom braces which are usually a bit bulkier than over the counter ones. During this visit, he said the braces that we have now are perfect and Frankie's range of motion in her foot was great, at 15%. WHEW.

I took this appointment time to tell him that I was worried about Frankie having future hip issues so we agreed to have an x-ray done of her hips to see what, if anything is going on and to give us a baseline for future reference.  Within a few minutes, we walked to the x-ray room. I told Frankie we were going to take a picture of her body. We walked into the room and she was asked to lay down still. She did and said, “CHEESE!” The technicians took several pictures and it was over. Frankie didn’t want to get up off the table! She kept saying cheese! I have myself to blame for this. =) The ladies in the room giggled as I peeled her off  of the bed and reminded her she was going to get her well-deserved sticker.

After 10 minutes, Dr. Romness had the x-ray results on the screen. He said her hip sockets look perfectly normal. I noticed everything looked “clean” on the film except for a dark spot on Frankie’s right side. I asked Dr. Romness, “What’s that?” With a serious face he said, “Oh, that’s just gas.” I giggled out loud like a child!  Yup, sure did. Real mature.

After our appointment, it was time to head over to the OT department, take Frankie’s cast off, get her arm cleaned and let the skin breathe. Ms. Ruth took the cast off and had Frankie play with both hands for about 30 minutes or so. Then, the cast came back on. She fussed for about one minute and then was perfectly fine. She chose a very pretty blue color this time for the casting tape.

We continued to play with Ruth and worked on grabbing things with the right hand.  Frankie showed Ms. Ruth & I that she could pick up pieces of a puzzle and put them in their place…with her right hand. Huge accomplishment!

Speech therapy was interesting this week. We realized that Frankie has a hard time moving her tongue to the right. I always noticed she chews on one side, her stronger side, but didn’t realize how much her tongue was involved. This makes sense as to why it’s more difficult for her to form certain sounds. So now we must work to strengthen that side of the mouth.

Throughout the week, we played with Ms Sue a lot and used ESTIM. We started out our second session by changing the casting tape back to the leopard print! The blue one got filthy after only 24 hours. 

Frankie really enjoyed pushing and pulling the shopping cart. It was hard to get her to wrap all four fingers around the cart (thumb positioned under) but now she's a pro. She looked for hidden ducks and toys around the room, picked them up with her right hand and then placed them in the cart. She then painted these pretty pictures with her right hand and gave us beautiful artwork to take home.

During this week's Physical Therapy session, Miss Emily wanted to walk Frankie outside on different surfaces. It was a great way to break up the monotony of being in the hospital. It was a chilly day and I have to say I’m glad I over packed. I happened to pack a cape that I bought Frankie last year thinking that if it gets cold, she can’t get her huge cast in a regular coat sleeve! We walked on rocks with wires connected to Frankie’s glutes and inner thighs…good ol’ ESTIM! Toward the end of our walk, Frankie started to limp and we noticed she was getting blisters on her right foot. So, we took her braces off and put on another pair of shoes that she can wear without the braces. This means we have to go to our Orthotic place here in Fairfax to get her custom brace adjusted again.

All in all, I don’t expect Frankie to leave this CIT program being able to use her right hand as much as her left. My oldest sister Cici gave me some great advice a while back. “Don’t ever have high expectations of people or circumstances. You may end up disappointed.” I don't have high expectations for a miraculous outcome after this CIT program. I sure as heck have hope and faith though for a positive outcome and progress! I believe in our team of specialists at UVA and back home. Most importantly, I believe in our daughter and her strong will to work her tail off. She is extremely determined and when given praise, she will do just about anything and try her hardest at it. Jill & Katherine, our therapy angels in Sterling would agree and we are so thankful to have them waiting for us when this program is complete. =)  ONE MORE WEEK TO GO!!!!!!