The week started a little rough on Sunday morning when Reagan tripped on a toy fire truck and ripped the skin off the bottom of her fourth and fifth toes. Then Monday night she caught Cole's cold with the raspy cough and runny nose. All week I've been trying to stop her from wiping it with her cast. Then Tuesday morning her toes started to bleed again. In the afternoon she was bit by mosquitos three times on her leg, once on her cheek and twice on her shoulder. They started to itch right away but got worse and very inflamed by Wednesday. Not pretty when you have no good way to scratch them since your dominant hand is in a cast and your left hand isn't strong enough to scratch. Then Wednesday she fell off the moon bounce slide and grew a hematoma on her head. But through it all, she was a trooper and we're so glad we took on this journey once again.
Tuesday started with a consult with Dr. Romnes, Orthopedic Surgeon. As you may remember, Dr. Evans, Phsyiatrist at CNMC was concerned that Reagan may have a leg length discrepancy that is causing her to trip (as opposed to having a toe drop from a tight gastrocnemious which was previously diagnosed). The good news is that Dr. Romnes did not see any leg length discrepancy. He did, however, say that it is not uncommon for kids with CP to eventually have one and there is nothing we can do to prevent it. I really liked his approach and bedside manor with Reagan, but he provided a lot of conflicting information that will cause us to rethink several decisions. First, he pointed out the difference in muscle development between her left and right side. I guess I hadn't noticed it before. It's subtle, but noticeable once pointed out. Second, he disagreed with the type of brace Dr. Evans recommended and the one she has currently. The challenge with her current brace is that it holds her at 90 degrees so her toe can't drop but that means she can't jump. This exacerbates the issue of her underdeveloped calf muscle. Third, he said serial casting on Reagan's leg probably won't help because she already has range of motion in her ankle (which is what serial casting tries to achieve). He said we should continue Botox if we felt like it helped, but recommended we wait to try the Bioness/Walk-Aid electrical stimulation until Reagan is a little older (she has to know how/when to turn it off if she sits down at school). He did say that it would be good to continue the stationary e-stim that we are doing.
We also met with Ms. Ruth for therapy on Tuesday. We had a great session and were able to play outside for quite a bit of our session. Reagan spent time pouring sand over her foot (the other one was too bloody to go in the sand) and picking out the pretty rocks with her left hand. This was a great workout for her hand since the sand was heavy and the rocks were very small. She also spent time watering plants, also a great activity to carry, hold and pour the water can. We also reviewed her goals for the month and started to see how she was doing in achieving those goals.
Reagan's goals for this month included:
- Stacking 3-4 blocks with her left hand
- Holding a fork and cutting play doh with a knife (bilateral activity)
- Making a play doh ball (bilateral activity)
- Throwing a ball at least 3 feet with her left hand
- Scooping food onto a spoon with her left hand
- Pointing to objects or pages in a book with her left hand
Check out this picture and count the blocks. Yes, there are NINE! Yes, I couldn't be more proud of her and clearly Ruth is too! This skill is very difficult because she has to 1) pinch the object 2) lift it supporting its weight 3) stabilize it on top of another without tipping it over or stacking it crooked 4) release the object - probably the most difficult part of the task for Reagan.
We took it easy after therapy Tuesday and walked around the mall for a while. I let her play in the mall playground so she could have some down-time and then had dinner at her favorite restaurant, Red Robin. We then headed back to the hotel. Getting out of the car Reagan got a huge smile on her face and said, "hey mom, do you think Daddy is going to surprise us again?" So cute to know how much that meant to Reagan last week and how much she loves her Daddy. I explained that Daddy had to work and she was ok with that, but was very happy when he called to say good-night.
Wednesday we also spent time practicing her goals to see how well she had progressed. One challenge for Reagan has always been reaching above her head with her left hand. Historically she has not been able to reach with a straight arm. Generally the elbow remains bent due to the spasticity of her muscles. Check out that reach! She was also able to take her cast off to practice cutting with a knife and fork and using a rolling pin to roll out the play doh after forming it in a ball. She excelled at both tasks much better than expected.
I also mentioned last week that Reagan has declared green as her new favorite color. That continued this week with choosing a new green dress at the mall Tuesday, choosing a green cast on Wednesday, and picking green construction paper over pink for her cutting activity on Thursday. Perhaps she is actually going to stick with this declaration!
Wednesday after therapy we quickly met with a physical therapist, Patty, to get her perspective on the situation with Reagan's brace. She reviewed the recommendation from Dr. Romnes and said the brace he is recommending would be a good choice, but will be very difficult to get to fit in any shoes. Her current brace is a Jumpstart Kangaroo AFO and he is recommending a DAFO, which simply means it is dynamic and therefore has a joint to allow flexion. Currently she can't point her toe at all when she's wearing the brace. After a long conversation, we decided to have Reagan's PT measure her current range of motion, try not wearing the brace for two months and then re-measure to see if we see increased tightening of her calf. She was the FIRST person to explain why kids with CP often get tighter during growth spurts (also something we will need to monitor throughout Reagan's growth). She said for kids with CP the bones grow at a normal rate, but the muscles grow much slower. So they are tight until they catch up to the length of the bone.
We had a quick lunch and went to the hotel to take a nap. We then met a little girl and her mom at Bounce and Play that we met the first week at UVA at the museum. The girls had a great time playing until Reagan got her leg caught on the slide/moon bounce and landed head first on the concrete. She sat on my lap for quite a while as the hematoma grew on her head. She played for a little while longer and then we decided to head to dinner and get back to the hotel for an early bed time. And yes, I was keenly watching for the signs and symptoms of a concussion thanks to my First Responder training!
Thursday morning I'm in the bathroom doing my hair and getting ready for our last day of therapy when I hear Reagan yell, "Mom, come here. Hurry." I'm thinking...great, she spilled her cereal all over the bed and there's no way we will be on time now. I poke my head out and she says, "look mom, I'm pointing!" I can't really express how proud I was of her at that moment. She has never isolated her finger like that before. Of the six goals outlined above, this was the only one she hadn't successfully mastered. She was so excited to get to therapy and show Ms. Sue. She must have asked me 6 times, "hey mom, are you sure we aren't putting the cast on today?"
When we arrived at therapy Reagan quickly tried to show Ms. Sue how she had pointed. Unfortunately, although she tried very hard, she wasn't able to independently lift her pointer. We did, however, spend the day working on pointing activities. It started with a book that had you put your finger in the holes. Then another book that had you put cheerios on each page. She also spent time pushing buttons on the computer and practicing with the stylus coloring on the computer. We also played two GREAT games on the iPad: Ready to Print and Bugs and Buttons. One was a pinching game that required her to use two hands and the other she had to drag and drop objects with two hands. Two others that were recommended for us to try were Dexteria Junior, and Toca Boca. Can't wait to start playing those this week! We are very hopeful that given she was able to isolate her finger once today that continued practice will help replicate the activity. In addition to learning to isolate that finger, we are working diligently at trying to then press buttons. As you can see in the Elmo book, her finger generally collapses when she tries to push with it. However, we are very hopeful that she will continue to strength the finger the more she is able to use it.
After another great week, we said our good-byes and hit the road not sure when we will return. We found out Tuesday that although Reagan can participate in the study, she will have to be out of the CIMT program and without Botox for six months before she can begin the study. Because she is in the control group, she will not be able to do Botox or CIMT until after the six months in the control group. That means she wouldn't be able to have CIMT until September of next year (we haven't officially been told this, but that's what my math is telling me). Given she will be starting Kindergarten in September, we have some hard decisions to make regarding the study and when we return for therapy. We are waiting to get more information from the study coordinator and will then make a decision. I know it sounds like we have a lot of time, but with new patients doing therapy for the study, it will be harder to get on the schedule. And given she met almost all her goals that we set, it's clear once again that this program has been a huge success for Reagan. We can't thank the team there enough for their patience with Reagan as she struggles through hard days and tries to assert her independence. I'm sure they are used to it, but wow, they have a hard job! There are many angels who have made an impact on Reagan's life. I firmly believe Ms. Ruth and Ms. Sue fall into that category. They will forever be a part of Reagan's past that is shaping her future. The Bischoff Family will forever be thankful for this experience. The smile on her face says it all!
We made it back to Northern Virginia in time to go to Back-To-School night for Cole tonight and we will go to his Open House tomorrow. He already met his teacher, Ms. Carolann and her assistant, Ms. China, since Reagan was in that class last year at Potowmack Elementary School. Stay tuned for First Day of School pictures next week!
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