Physical Therapy Update

Our second physical therapy session seemed like it came so quickly. Cecilia has been doing great walking in her new shoes. We definitely feel like she is making improvements with very little intervention.

After the therapist watched her for a few minutes she said C will definitely not need a brace. Her shoes are great and doing what they need to be doing. The therapist took off her shoes and looked at her feet and leg. They were not stiff. She said they both feel like an average leg.

The therapist did talk in depth about Cecilia's leg snapping. The best way to describe this is that her right leg looks a little rigid or hyperextended when she walks. It is more pronounced when she is tired which I think she was towards the end of this appointment. The therapist cut two little foam lifts to put under her heals in her shoes. These should help with the snapping. Also, strengthening her legs will help.

At some point during this appointment the therapist had Cecilia walking up and down stairs. While she was walking down the stairs she was alternating left and right. The therapist said that was great because the average age for that is 3-4. It's so easy to get excited about something so minor when it is your child.

The therapist said that when Cecilia gets to the place where more high level functioning with fine motor skills is required, like playing an instrument, it may take her a little longer to learn. That is good to know, but not discouraging to us at all.

It also seemed like at some point Cecilia might benefit from more frequent physical therapy. At this stage with her age and how well she is doing it isn't worth the benefits we would see.

Even though I heard the words "no brace ever" I am not letting myself be totally convinced of that. Our next physical therapy appointment will be in another month. I am really looking forward to it because we will be meeting with the physiatrist concurrently. When I have both the doctor and the therapist in a room together and they agree there will be no brace I will let myself believe it.

Shoes

So, shoes. Like many women I love a beautiful pair of shoes, but I also like a good deal. Knowing that Cecilia's shoes are, at least for now, acting as a substitute for a brace, I am taking my shoe mission very seriously. The insurance co-pay for a brace could easily be a few hundred dollars so these new shoes have no budget. Whatever we can do to help her walking improve we will do.

We went to a great local shoe store and they were incredibly helpful. Cecilia tried on a few pair of shoes and it was very clear to us that the Ecco's made an immediate difference in her walking. Sold. They were on sale and they were still $50. Yeesh.

Since this first shoe purchase I have kept looking for deals on the recommended brands of shoes. I have gotten lucky and Cecilia now has three pair of fancy shoes that currently fit her and a few more pair for her to grow in to. Nothing like getting shoes for half off to make you feel like you've won some shopping contest. SIlly, but true.

Physical Therapy

Going into our first physical therapy appointment filled me with mixed emotions. I was really looking forward to hearing what the therapist thought of Cecilia's walking and give us information to allow us to help her, but I had anxiety about Cecilia wearing a brace. I had a prescription for the brace in my pile of papers for two months. It was a constant reminder of Cecilia's diagnosis. You can't help but think that people are going to judge my child because something is different about her. I just kept thinking that no one is perfect. Everyone has issues and we just happen to know what Cecilia's are. She will be a stronger and more interesting person because of this.

The therapist came in to the waiting room to get us for our appointment. You could tell the therapist was evaluating her walking from the moment she met her. We walked down two long hallways and went in to a little room with gym mats, toys and a little table. I handed her the prescription for the brace. Almost immediately the therapist said that Cecilia may not need a brace because her foot dynamics looked good. I definitely had tears in my eyes at this point.

The physiatrist had seen Cecilia walking about two months ago. At that time, she had only been walking about six weeks. We had definitely seen a lot of progress in her walking, but to hear the therapist say she looked good felt great.

Overall, the therapist said that Cecilia's right side was looking good, but slightly less coordinated. She is good at squatting and keeping her balance. She also has good reflexes and can catch and protect herself with both arms when she stumbles. The therapist said again that a brace wouldn't be good right now. It would just slow her down.

The therapist recommended that we massage and stretch Cecilia's right leg. She also recommended that we have her wear her shoes at least half of the day and encourage her to climb and run around in weight bearing activities.

One of the important pieces of information that we learned at this appointment is how important shoes are for early walkers and especially for Cecilia. The therapist recommended getting a shoe that would be flexible and have a rounded heal that rocks forward when she walks. A shoe with a higher support around the ankle will give her ankle more feedback and help her stability. She mentioned looking at the brands Nike, Ecco and See Kai Run.

When we left this appointment I felt a sense of relief. I don't want to get my hopes up that there is no brace ever, but at least for now Cecilia is improving on her own. We will see the physical therapist again in one month and she will reevaluate her walking and the need for a brace.

Shoes are my next mission.

Occupational Therapy

With the initial diagnosis of cerebral palsy we knew we had occupational therapy in our future. I have heard this term, but it seems like no one really knew exactly what it was. My thought was that it was therapy for her occupation of being a toddler. . . feeding herself and playing. While this isn't the definition, it is pretty accurate. Occupational therapy focuses on fine motor skills for arms and hands. It can overlap physical therapy a little bit and definitely in regards to abdominal core strength.

We went to Cecilia's appointment with an extra adult. I really recommend this if you have someone that can come with you. This allowed us, as parents, to listen, take in as much as we could and ask questions. The third person was my Dad. He took notes the during the appointment. Looking back over the notes is incredibly helpful. We are lucky because my Dad is the best and most thorough person I can think of for this job.

We learned a lot with this appointment. We thought we would be taking Cecilia to OT once a week, but the best part of this appointment is that we don't have to go again for a year! The therapist did say that if we had any concerns about her development we could return in six months.

Here are some of the extensive notes that my Dad took along with some of my thoughts. I will keep my Dad's notes in bold

-observed C walking around and playing - she kept her right arm flexed

The therapist mentioned this was probably to help her balance. Working on her core strength could help this.

- asked C to color; C did not color much

We haven't done much coloring at home because the crayons end up in her mouth very quickly.

- tested her with a puzzle

She was not very interest in this either.

- She was good at stacking small blocks and had them 4 - 5 high

- clapping - left hand moved to the right hand

We have always noticed that she has clapped this way.

- small plastic bottle with lid

- C held the bottle with her right hand and used her left hand to pick up the beans and place them in the bottle.

- therapist placed C on a long, rectangular swing to check her balance - good trunk control

- therapist placed C on a large exercise ball which is good for trunk control

Suggestions

- encourage C to use her right hand

- present items to her on the right side

- 3x/day: try to have her use her right hand for 5 minutes

- bubbles are good exercise for her right hand

- encourage supination with right hand

This is the position when the palm faces up.

- Therapist completed Peabody Developmental Motor Scales

This gives a qualitative and quantitative point of reference for gross and fine motor development from birth to age five.

- C - grasping ability - 20 months

visual motor skills - 16 months

C is currently 18 months old. In my Dad's opinion he thought she could have tested better with her eye hand coordination. She was a little distracted. I, of course, agree with him.

-cerebral palsy is not affecting/impacting her fine motor skills

-her trunk muscles are good: continue to work on them.

The therapist is going to send a report to us, but I feel like my Dad covered everything.

All good news for us!

PT canceled

We woke up this morning and, as we were eating breakfast I heard the home phone ring. I ran to get it, but I missed the call. I knew what it was. No one calls our home phone. The physical therapy was canceled. Ugh! I am frustrated, but the physical therapist had to cancel because her mother is in the hospital. We re-scheduled for three weeks from now. Grrrr. At least we have occupational therapy next week to look forward to.

Waiting

We have been waiting for over a month to get in to see the physical therapist and the occupational therapist. Both of the first appointments are two hours. I can't imagine what we will do that whole time, but I am sure it will be amazing. The PT is tomorrow. I know Cecilia will get fitted for her AFO (Ankle Foot Orthoses) at this appointment. I am really curious about how this will help her.

One of the symptoms that Dr. Steve asked us about and pointed out at our first appointment was if Cecilia kept her right hand in a fist a lot. We really hadn't noticed it. She definitely was left dominant, but we weren't sure. This is something that I pay attention to all the time now. The first week or so I was surprised how much I noticed her hand in a fist, but it wasn't all the time. As the weeks have passed I have noticed her starting to do more with her right hand. I am hoping that the occupational therapist will give us lots of feedback about how great her right hand is. It's so incredible how you can be looking at the big picture that is your child's life, but when they have any challenge, sickness(even the sniffles) or something not quite right you pay attention to every little detail. We get a little excited every time she uses her right hand. The fact that she can pick up a small piece of ice with her right hand and put it in her mouth is very reassuring to me.

The initial diagnosis was definitely hard to hear, but I never had any doubts about the diagnosis. We have cried and felt fortunate and happy and everything in between. It really could be so much worse and we can handle this. This is what Cecilia has to deal with, and our role is to make sure she has all the right people to help her.

The MRI will most likely confirm the cerebral palsy. There is a 20% chance that we won't be able to see the damage, but it won't mean that this isn't Cecilia's diagnosis.

I think right now I am more worried about the general anesthetic that she has to have in order to be still for MRI. Maybe that is just somewhere to put my worry for now.

MRI

The MRI went very smoothly. The nurse and anesthesiologist took Cecilia back. We weren't part of any of the gas or IV. When we were able to go back, she was just waking up. Her little face was all red from the tape that had been on her face. She was a little groggy at first, but as soon as they gave her a juice box she was back to herself. Within about 15 minutes she was cleared to be discharged. No vomiting or nausea the rest of the day.

Results

Dr. Steve called the next day. I wasn't expecting to hear from him so soon. I don't feel like I was prepared. I wanted to have some questions to ask him. He said that you could see the damage and it was what he was expecting. Simple and to the point. I definitely have more questions, but we will see him again in a few months. I will have a better understanding of Cecilia's symptoms through the physical therapy and occupational therapy. Watch out Dr. Steve. I am going to have a million questions for you by then.