a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Monday, November 30, 2009

Orthotist Appointment and Day 1 of CME

Today was a long day. A good day, but long for Oia.

Our morning started bright and early with an appointment at Dr. R's office, Oia's orthotist. We meet with him around every 6 months to keep an eye on Oia's body alignment; her back and spine, hips, legs, and feet/arches. Our concerns going into this appointment were the tilt of Oia's hips (appears to not be symmetrical due to most weight bearing on the left side) and minimal arches on both feet, particularly the right foot rolls inward over arch when walking without shoes and AFO's. Dr. R did his usual quick (and fairly rough) assessment of Oia's legs and hips and declared that those concerns aren't too much of a big deal, at least right now. He understands that Oia is doing some walking without shoes and without AFO's and he agrees this is a good thing for her. He prescribed sole inserts for the shoes she wears without AFO's to provide more of an arch support. We got them today with no waiting before leaving the appointment. I asked Dr. R what we needed to do for Oia's hip alignment (which causes her right knee to cave inward) and he said to continue doing exactly what we've been doing; weight bearing activities in therapy, stretches, etc. and he said overall she looks great but that some misalignment was just simply 'par for the course' in the CP world. It's the degree of the misalignment, or compensation, that we will try to keep minimal. Hip x-rays may be taken at the next appointment but for now, all things considered, she looks great. I'm happy with that.

Our afternoon was spent at our local therapy center. The center is holding a Cuevas Medek Exercise (CME) training course this week where Oia is participating as a model for the therapists in training. I am so intrigued by this form of therapy and I have been made an instant believer after seeing what benefits Oia has gained from this therapeutic approach. From what I understand, having the training course so close to home is somewhat of a rare opportunity. The father of CME is from Chile and Simona is from Canada. Simona is here for this weeks course and that is who Oia worked with some today. Simona demonstrated whole group some assessment drills with Oia and then the group branched off into therapist/child pairs to practice what they had just learned in demonstration. Oia did amazingly well. She was able to do the drills presented to her, at least with minimal assistance, and beyond that she was so tolerant of new hands manipulating her. Simona commented on Oia's strong desire to perform and that is the best complement I could ever ask for.

The room was full of about 6 other kiddos and parents, ages ranging from about 6 months to about 5 years (I'm guessing). Ranges of abilities greatly differed. The hardest part of the afternoon was having to witness the two babies of the group as they were working with the therapists. It made me flashback to a time not long ago when Oia was just starting therapy and the tears flowed, from the both of us. Challenged and crying babies make for a weak mommy heart which made my heart break all over again for those parents in the same shoes as I was (and still am sometimes). It's a rotten place to be but you know you have to be there in order for your little one to reach those goals, whatever they may be.

We go back Wednesday and Friday for more modeling I'm really looking forward to it, especially after seeing how well Oia responded today with being in the spotlight. She never ceases to amaze me.

To get a taste of what CME is all about, go to http://www.cuevasmedek.com/

The videos tell all.

Wednesday, November 18, 2009

Piggies, Shoes and AFO's

Oia has had 3 PT sessions this week (one session being a make-up). All sessions this week have been GREAT. Our PT does amazing things with Oia. I recently brought up to her the fact that Oia has begun walking around the living room in bare feet; all within the last couple of weeks. Times are early in the morning before I've dressed her, nap, and after her bath in the evenings. Until now, it used to be that without shoes and AFO's on her feet she would crawl to get to where she wanted to be. Our daredevil, who loves a challenge, decided that AFO's are now optional. This is WONDERFUL but a heart stopper for Rob and I all at the same time; for several reasons. Walking in bare feet looks like an accident waiting to happen. AFO's provide Oia with flat feet and a more stable stance which helps her bear weight more appropriately throughout her entire body. Plus, with AFO's, I can trust that her falls will be backward (on her bottom) instead of forward.

So, this week, our PT decided to assess Oia walking in bare feet.

Pros of bare feet walking (my assessment):

1. good sensory

2. slow, step-through steps

3. fair amount of control

4. can demonstrate some hip extension but still needs work

5. can turn and change direction without falling

6. insight into the future (maybe?)...will she always need braces on her feet?

Cons of bare feet walking (again, my assessment):

1. questionable stability

2. heels up slightly, steps with toes

3. right foot rolls slightly inward over arch

4. needs close supervision, aka. adult needs to be RIGHT. THERE.

See for yourself...all 10 piggies in action! Pretty impressive.

Next video is walking with shoes only, no AFO's. Same pros with shoes as walking with bare feet, but naturally more support and stability with shoes.

And finally, walking with the good ol' faithful AFO's. This is the only way she can walk out of our sight safely and play in an adjoining room. Also, this is the only way she walks outside and in public places (still needs to hold our hands while walking outside). Hip extension is getting better and better with AFO's; in simple terms this means she is standing taller and not compensating her body by bending forward at the hip to seek stability. She still weight-bears more on the left side as right side is weaker but overall she looks fantastic!

Bottom line: SHE CAN WALK!

Tuesday, November 17, 2009

10 Piggies!

Oia started her day with an hour of OT, immediately followed by an hour of PT. Not an unusual occurrence at our house. Both sessions went very well.

Her OT and PT leave us with therapy progress notes after each visit. A snip of her PT notes from today reads as follows: "Oia is doing wonderfully with her progress in standing and walking. Today she walked around the living room w/o falling and with only supervision. (Actually), she fell once right onto her bottom and on one occasion got up from the floor to stand all by herself."

Why is this so exciting? May not sound any different than any other day, does it?

Wrong! Today was with no shoes and no AFO's. All 10 piggies in plain view...bare feet! Steps with control and heels almost to the ground.


At some point very soon we will try to share a video of the new progress.

(I'm smiling.)

Sunday, November 15, 2009

Camp Righty: Home Program Update

Ever since Camp Righty has been over, we've been trying to make Oia wear her left arm splint for about 20-30 minutes each day. Trying. Putting on her splint is a two-man job so for me getting it on during the day while Rob is at work is next to impossible. The solution has been to put the splint on after each therapy session, with the help of whatever therapist is here that day.
It's safe to say she wears the splint for at least 4 days out of the week.

Today, Oia and I played with Play-Doh while she wore the splint. Usually, grasping the rolled balls and releasing them back into the container is what we practice. She did this well towards the end of Camp Righty and she still has the same precision and strength in her grasp now. This skill has come a lonnnng way.

We have noticed Oia using Righty more and more. She is using her right hand now with more spontaneity than she ever has before. There were certain toys that we played with constantly during Camp Righty, like her bead necklaces, and she will still play with those toys using both hands. Every now and then, Rob and I find ourselves saying to each other, "Hey, look at that. She did that with BOTH hands!" We joke that she can get by with just about anything as long as Righty is involved.

Below she is trying to open the basement door to help Rob back in. That's a big stretch for her. Nice job, Oia!

Saturday, November 14, 2009

Saturday Morning at The Little Gym

For Oia's 2nd birthday, her Grandma and Grandpa gave her a semester of classes at The Little Gym. The Little Gym is organized chaos for the very young. Oia's class is for 2 yr olds. There are mats on the floors, balance beams, soft climbing structures, bars, circle time and song, and each week focuses on a different skill, such as balance, body parts, etc. I had been wanting to try these classes with Oia for a long time but I was hesitant without knowing the structure and layout of the class. I had some reservations, my hang-up, I know, but as a parent you just always want your little one to be able and do what others can do without your child's differences being the focus of those around you. I wondered if her level of mobility/ability was suitable for the activities of the class so I held off joining until she became independently mobile to avoid any of those 'heartbreaking moments'. We started attending in August (the month Oia began walking on her own), going each week for one 45 minute session. Truth be told, there is little she can't do (at least with my help) and she is willing to try everything at least once. Generally speaking, this is Oia's 45 minutes to do as she pleases; her break from the 3 sometimes 4 therapy sessions each week. It's turned out to be a wonderful experience for us. Wonderful not only for the physical challenge it provides but also for the social aspect as well.

Our typical session is Friday mornings while Rob is at work but we attended a make-up class this morning so he could see her in action. Here she reached up for the bar as I helped her right hand get a good hold. (It is sometimes a challenge for her to rotate her right shoulder that high.) Once holding with two hands, she doesn't do too bad maintaining that hold while I swing her legs out for her.

"Balance beam? No problem...as long as daddy helps me."

Oia loves to play with balls and I love that playing with balls provokes her to use two hands; often times without a verbal cue from Rob or I.

Clean-up time is one of her favorites. Here she is on her way to the ball bucket to put her ball away.

The instructor always blows bubbles for the kiddos at the end of each session. Oia has never reached out to pop the bubbles yet. I don't know if it's a visual thing or not. She generally stands among the group and watches everyone else pop the bubbles. I know it takes a lot for her to remain standing, balanced, and aware of her space so reaching for bubbles may make her feel like she is jeopardizing her stability. No biggie, we'll keep working on it.

I leave each session with a full and happy heart. I feel so fortunate that our daughter is in her own way able, and willing and can participate in such a class. What she can't do on her own, I help her do. She can't jump. But together, she jumps the highest. She can't run. But together, she is the fastest. Once again, my little teacher has taught me another lesson. Hang up all reservations. So far, she has found a way to do whatever it is she wants to do and for that I am thankful.

Tuesday, November 10, 2009

Sick Girl = Canceled Eye Appointment

Oia and I spent the weekend at our old stompin' grounds in North Carolina. We attended a friends wedding on Sunday while Rob stayed behind to hang out with my father who was spending some time at our house. Unfortunately, Oia ended up with a cold and fever the day of the wedding which slowed things down a bit. We missed out on the reception which is what I was most looking forward to. Something about seeing Oia walking on a dance floor with other little people made me so excited for her. I felt a little bummed we missed it but a sick baby takes the front seat.

We returned home yesterday. We were scheduled today to head to northern Virginia so Oia could be seen by a new ophthalmologist in hopes of getting a second opinion on an impending eye surgery. With a questionable fever still this morning, we decided to keep her home and reschedule the appointment. A little disappointing since I am in the mind frame of having this surgery for her as soon as possible and we have to wait another month to be seen. But, that's how the cookie crumbles sometimes.

The good news is that by dinner time tonight she was feeling much better and wanted to play again.

Appointment has been rescheduled for December 7th.

Monday, November 2, 2009


Today was another doctor's appointment. This time it was with Oia's neurologist (who we think very highly of).

I'll start by saying that Dr. T was so impressed to see Oia moving as well as she is and she even walked on her own into his office. He was pleased to see her using her right hand to help hold her sippy cup once she was prompted to use both hands with a verbal reminder. Dr. T said developmental progress is an outward positive of what's happening on the inside, ie. her brain activity. He asked us some basic questions...Is she eating well? Yes. Does she sleep well? Yes. Talking any? Not really, she's very vocal but not verbal. And then with some hesitation in his voice, he asked if we have observed any seizure-like activity yet. By the grace the God the answer was no. He is absolutely baffled by this. All of Oia's conditions, or brain abnormalities by medical definition align with seizures. Around 95% of kids like Oia have seizures on a regular basis and require medication. I knew her risks were high but I never realized it was that high. It makes my stomach flutter to think of this changing in just the blink of an eye. It could. It could all be very different tomorrow and seizures could be a part of our world at any moment which terrifies me. But my 2 yr. old teacher has taught me to live for today and be thankful and so that is what I will continue to do.

Dr. T reviewed Oia's charts again and MRI information and then declared something we never expected. Since diagnosis in April of '08, we were told and believed that Oia's cerebral palsy was secondary to a stroke in utero. As of today, that is not believed to be the case. For the last year, Dr. T has been digging deeper into Oia's files to study her situation and he believes with nearly 100% certainty that Oia did not have a stroke at all. She has schizencephaly (which we knew), not caused by a stroke but rather as a result of a faulty migration pattern of some brain cells to their final position in the brain. This disruption happens in just the very early days of fetal development. Why it happened is a mystery.

This is not really better news or worse news, just parallel news in our opinions. I will tell you though for me, as the one who carried this baby for 9 months, this news lifted what would have been a lifetime of guilt off of my chest. So, in a sense, maybe this was good news for me. I can't control the fact that Oia's brain cells migrated incorrectly but I felt guilt that she had a stroke. Thoughts of exercising too hard, working too hard, stress, etc. consumed me. I carry (carried) a lot of guilt and blame for the challenges that Oia faces. We sing the praises of a compassionate doctor who has not stopped following and studying Oia to determine the true root of her disabilities.

We determined today that unless something changes, there is no need to schedule another EEG at this time. Please keep her in your thoughts and prayers.