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!!!!!!

Two weeks down, two to go with CIT!

Toward the end of last week, Frankie had a Physical Therapy session and it went great. She had another OT session to follow. We drove back home and I was certain she would conk out in the car. Nope…she stayed up because she was so excited to go home and see Daddy, Paco and all her toys.

I must tell this story before posting about our progress this week. Over this past weekend, Frankie and I went to Panera as usual. We were asked by a couple of people, “What happened to her arm?” We have been asked this countless times and I either give people the short version, or I give them the longer version. I actually like educating people about Frankie’s condition and this fabulous program that we are in. There was one lady that really got my attention. She looked at Frankie and said with her British accent (that I’m so envious of,) “Oh sweetie…what happened to your arm? Are you in PAIN?” I looked at her and smiled and said, “No, she’s not in pain. Her arm is just fine. We are trying to get her other arm stronger. Her right side is not as strong as her left.” She looked at Frankie’s eyes and said, “You are so beautiful, oh my goodness! Can I have your glasses? I love your outfit!” She just showered her with sweet compliments and held her face with her hand.

It was soon after I had an Aha moment. I know I may over analyze things at times, so I suddenly realized why this sweet lady was so concerned about Frankie’s arm.  I know most people may be curious to see a child in a cast and many are concerned, but if you could have heard this kind lady stress the word PAIN, it may have made you think a little deeper? So here I am, in deep thought looking back….Right before the lady approached us, there were so many people at Panera waiting for their food and Frankie and I were in the way when people were trying to pass by. I would grab her arms like I usually do to guide her away from the people traffic. I have no doubt that the lady saw me grabbing Frankie’s right arm with the cast and felt sorry for her thinking that I was hurting her arm even more! I guess I need to be careful doing this in public.

The weekend went by fast and as scheduled, Frankie and I arrived in Charlottesville on Sunday. There was a big football game here over the weekend so we had to wait for our room to be ready an extra two hours. Once we got unpacked, we headed out to our little Mexican restaurant and turned in early...after watching Frozen...for the 200th time.

On Monday, it was time to remove last week’s cast. The cast was to be removed, her arm cleaned, allowing it to breathe. So Mamarazzi was in the room, OF COURSE and I happened to snap a few pictures. The look on Frankie's face says it all.  

Prior to getting the cast off, I had already prepared her and told her that she would be re-casted soon after. Immediately after the removal, Frankie quickly opened her left hand and just stared at it for close to a minute. “Where have you been?” she asked. Well, not really. But she would have if she had gotten over the initial shock. After the arm was cleaned, we left the cast off for about 15 minutes and did some bimanual activities. Those fifteen minutes went by so fast!

It was time to put the cast back on after picking out our fun casting tape for the week. (Thank you, Danielle!) As we struggled to put the cast back on, Frankie was upset for about a minute but she quickly got over it. She amazes me! We then went back into the therapy gym and played with magnets and Playdo using her right hand, ESTIM and her snazzy leopard cast! After lunch, Frankie and I walked to the downtown mall. She walked, and walked. (Her favorite pastime.)  

Tuesday rolled around and we had Speech and OT. I’m so thankful to have this amazing Speech therapist join our village and help prompt Frankie to use more action words along with teaching her many other things! Frankie’s ST was amazed at her use of compound words & sentences this week. She tends to use one word demands a lot so we are trying to get her out of that.
Frankie was asked a question during our session and had a very sassy answer. Aside from that,I was so amazed to see her point with one finger on her right hand to answer the next question! My mama always taught me it's not polite to point at people! This was more than OK and is SO AMAZING!!!

After Speech, Ms Sue came to our hotel for another OT session with ESTIM. Our biggest goal this week has been to get some wrist extension with Frankie's right hand. Sue calls this “wrist wrinkling!” I love it. Before Frankie is able to isolate each individual finger, the wrist needs to be strengthened. Not surprisingly, Frankie's is very weak. Atrophy sets in when the muscles aren't used. Pushing and pulling things are great ways to get the wrist stronger.This is why Sue has Frankie push the little shopping cart a lot. On Tuesday, she hid plastic strawberries in drawers and asked Frankie to find them. The strawberries were hidden and Frankie picked them up with her right hand and put them in a basket. Proud moment for Mama! She has been using the right hand A LOT! She doesn’t have a choice now. She has to.

We ended our week with a nice session from our fabulous PT, "Ms. Emi." Frankie got ESTIM on her legs again and worked on climbing. It's even more difficult for her to climb since her dominant hand is in a cast but she was so determined and did very well.I have to say it's nice to be here during therapy sessions because I like to see what the therapists are doing so I can incorporate some of the activities at home. OT, PT and Speech are not just sessions with professionals. They have become our life now at home. Mom & Dad are now unlicensed therapists. =)

I keep being reminded what a very dear friend of mine, Rachelle once told me. “Don’t EVER feel sorry for Francesca. Let her do things on her own. Don’t ever pity her.” It has been so hard to sit back and watch Frankie struggle to do things other kids her age can do. These last 2 weeks have been even more difficult. In my heart and mind I know that this is the best therapy program for Frankie and that we are doing what we can to help her be the best person she can be in the long run.This is what keeps me going along with the fine people in our village. We’re so happy & blessed to be here at UVA. All we can do is try to give her the best tools and resources that are available and just continue to ride the wave! I must thank you, friends and family as well for all of your support! You don’t know how much it means to me to read “GO Frankie!” and other sweet words of encouragement. I’m feeling extremely blessed.

It takes a village...

Oh, that feeling you get when you write out a blog post before saving it and it goes poof! Ouch. Here I go again. I will be updating this blog weekly after today. I just wanted to squeeze one more post in before we leave for the weekend.

Today, we started our morning with Speech Therapy. Frankie was evaluated and surprisingly scored higher than I thought she would. Her Speech Therapist told me not to be surprised if her language skills take off this month.The reason is because physically, her right side is going to be on overdrive and the part of the brain where Speech is affected is on the left side. This is the same side we hope to have those sweet little neurons firing up a storm.

After Speech,our Occupational Therapist came to our hotel suite for our session. CIT is 24/7 now, but we focused on electric stimulation while prompting Frankie's non dominant hand to reach, open and release. What is ESTIM? It's a little machine that uses an electric current to cause a single muscle or a group of muscles to contract. Electrodes are placed on the skin and in our case,they were placed on Frankie's legs, glutes, arms and hands today. The muscles are forced to contract thus helping to strengthen them. ESTIM also promotes blood supply to the area that the electrodes are placed on. This procedure coupled with CIT is so awesome because the muscles are getting help, for lack of a better word, to work! I actually tried putting the electrodes on myself a while back and it feels kinda' tingly. When using the machine, we have to be real careful not to place the setting on too high because you can actually cause injury to a muscle. We will be using this technique quite a bit throughout the month. I'm SO thankful that these therapists are pros at utilizing these machines!  

Not only is Frankie sporting 2 braces, she has a cast on her arm and more wires than she had in the NICU! She has been such a trouper...a lot more tolerant than I would be. She is, of course, very exhausted and gets frustrated easily since she has to be even more dependent on me. She wants to do everything herself!

Overall, It's hard to believe this is only day 2. I think we can, I think we can. Frankie is realizing now that the cast is staying on for a while. If she complains of a skin issue I can always cut the cast off myself. WOW! It truly takes a village to raise a child. There is NO way I could do this alone. How do you guys do it with two, three, four kids? Ya'll have superpowers! In my case, thank God I have a supportive husband and a fantastic team to get us through these hurdles in this beautiful life we have. 

WAIT! I had to throw this last picture in. Today, I've realized with Frankie that where there's a will or chip, there's a way! NO problems getting a chip in her right hand at lunch. =) 

CIT-It's casting day!

Today marks day one of the Constraint Induced Therapy program here at UVA and we survived! We arrived yesterday to get a feel for the area and to get comfortable at our hotel.The hospital is located very close to the UVA campus so walking around outside made me feel young again...like a student....with a child!

Quick background on CIT! It is a well known Occupational therapy that is known to be an accelerated recovery for people that have suffered a nervous system or brain injury that impairs movement in the arm. We knew it was time for us to try this approach after Frankie starting opening her right hand when prompted and after a very dear friend of mine, Danielle told us of this awesome program.

Today was casting day, except not for a movie. It was the day we casted Frankie's stronger/dominant arm. I thought this cast was removable but I learned that it's permanent and to last one week at a time, totaling 4 weeks.GULP! By casting the stronger arm, we hope to get Frankie to use her less-strong arm more. (HATE the word weaker.) Since she rarely uses her right arm & hand, this is going to be very daunting and frustrating, no doubt.She will have to eat, drink, and learn how to do everyday tasks with her right hand. The whole idea here is to retrain her brain into KNOWING that she CAN use her right arm & hand.It's neuroplasticity at it's finest. The brain can actually rewire itself.

Here we are molding the cast with two amazing Occupational Therapists.Frankie was so tolerant of the process. Five minutes after it was completed,she screamed "take it OFF!" She proceeded to become more upset when I told her it stays on. I thought to myself, "Self, how in the world is this supposed to stay on more than an hour?" We quickly headed toward the kitchen to see if a snack would cheer her up.I also told her that we would put a cast on "Twobaby," which is her favorite doll. Her mouth opened in excitement.

In the kitchen, I watched as Frankie was struggling to grab a cracker with her right hand.One of the therapists gave me some really good advice when I expressed to her how difficult this would be for ME! (yes, pretty selfish.) She said, "Take 3 minutes at a time." Then I pause and think...here I am worrying about a month of this restraint when there are others that can't even move their affected side. This makes me put everything in perspective and feeling pretty blessed.

As we left the hospital, it was time to walk back to the hotel and push those awesome elevator buttons. Frankie tried so hard to push it with righty! Once she did (with her knuckle,)I was reminded once again what a long ride this is going to be.The sky is the limit and very few things will stop us from reaching our goal. We just need to push forward and stop looking back!