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

Friday, July 30, 2010

Happiness is...

when your little girl goes pee-pee on the potty for the very first time; on her daddy's birthday!

Tuesday, July 27, 2010

Legs and Eyes

Two steps forward...one step back. Currently, we're dealing with the 'one step back' in regards to Oia's mobility.

As you know, both casts were removed one week ago today. By the end of the two weeks in casts, Oia was ambulating as though she wasn't wearing them at all and was unstoppable; walking and on her feet all day. Hours after removal, same story. She was a little wobbly with the new sensation of stretched calf muscles but willing to walk and seemingly comfortable (no pain, soreness, etc.) Fast forward to one week post casts and we have an entirely different story.

The shift in situation seemed to happen around Day 2 post casts and almost overnight. Pain showed up and weakness stopped by for a visit. Bottom line...Oia is reluctant to walk and mostly refuses walking at all. Instead, she flops to the floor to crawl. Any steps at all comes after great protest on her behalf and with forceful convincing from Rob or I. At this point, we suspect the soreness is next to gone as her behavior does not convey any pain but instead she is WEAK. She can not let go of what she is leaning against to walk because when she tries to step with her left foot, the right leg collapses completely as it can not bear the weight of her body. Down she falls. The stretch has diminished any strength she had in that lower part of her right leg. Casts did exactly what they were supposed to do but at this point a stretched out, weak muscle is putting us back to square one.

Overall, I know this is still beneficial for Oia's physical development, now and in the future. However, that fact alone does not make this easy. It was exactly this time last year when Oia finally took her first, wobbly, independent steps. I remember those sweet steps as if she just took them seconds ago. Since then, Oia has spent countless, often rigorous, hours in PT to learn how to walk as well as she was just 2 weeks ago and now the girl can't stand without assistance, let alone walk. This is difficult to witness.

Time (and more PT) has a way of healing, strengthen, and making things better. So, we continue CME in therapy, push on, and pray she gets her walking legs back sooner than later. What else can we do?

And because our plate likes to remain full, we took Oia to her 4 month post-op ophthalmology appointment today in northern Va. Our appointment was a scheduled 90 minutes with dilation and as always, Oia was a saint for all of it.

Dr. P's nurse asked us if she could give Oia a brief eye exam using pictures. Using pictures to assess vision in a nearly 3 year old is certainly age appropriate. I initially thought this would work but then I was slapped in the face with reality when Oia was asked what she was looking at on the wall (which happened to be a picture of a hand print). It's only age appropriate when your child can talk. I have no doubts that Oia recognizes most pictures she see but she doesn't have the language skills to communicate what it is she's looking at. She can answer yes and no questions but not ones that begin with "what". We scrapped that vision test before it even began.

So here's the outcome of today's eye appointment...
1. Oia's eyes, from an ocular standpoint, are doing well. Good alignment, thanks to surgery. Oia's eye issues mainly stem from a neurological standpoint which is mostly beyond our control. (Thank you, cerebral palsy.)

2. Patching is helping. Dr. P thanked us for our efforts at home with the patching and asked that we continue to do as we have been.

3. Oia has bilateral cataracts (which we knew). Right eye cataract is more obvious, though still "small" and left eye cataract is "microscopic" and barely noticeable. I had to educate myself on what a cataract really is; I hear of this in older patients but now this pertains to my child and I needed the details. I learned a cataract is a cloudy or opaque area in the lens located directly behind the iris inside the eye. Normally, the lens is clear and allows light entering the eye to clearly focus an image on the retina. When cataracts develop, the light rays become scattered as they pass through the cloudy lens and the retinal image becomes blurred and distorted. Not a wonderful thing for someone with vision issues already.

Dr. P said more than likely Oia was born with these. The fact that these cataracts are still quite small, haven't worsened, and do not impede her vision too much at this point means we will simply continue to monitor them; not operate to remove them. As I understand, the goal is to keep Oia's lenses has healthy as possible and at this point surgery would not be worth the intense eye therapy that would have to ensue post cataract surgery.

So, we will keep up with the patching and we will keep a very close eye on the cataracts by following up with Dr. P in 4 months. It's just one more thing to pray for, one more thing to worry about, yet somehow still one more circumstance that leaves me counting my blessings. Despite all, Oia can still see the world she lives in through those sweet, blue eyes of hers...cataracts and all.

Lord, if you're out there...please keep it that way.

Friday, July 23, 2010

Challenges Post Casts

It's been three full days since Oia's casts were removed. These three days have been difficult. We were a little fooled in the immediate hours post casting; Oia walked well and with little trouble and seemed to not have any discomfort or soreness. Aside from that, the results were just what we were hoping for (and still are).

Then day one post casts is when things shifted a bit. Oia would not walk. She would become upset when I would put her down and make her walk. She would just find something near to hold onto, whine, and remain standing there until I can back to her rescue. It's obvious too that she was bearing most of her weight on her left leg (her stronger leg). With some coaxing and a hand held, she'd try to walk but would step with a limp. Her gait seems different to us.

Days two and three post casts have been no different.

Rob contacted her ortho doc today and he assured us this is not uncommon. Mainly two reasons...

1. Her muscles are just plain sore. Period. Think about it. No one is sore immediately following an intense workout. Generally, you feel pretty good. It's not usually until the next day that one might feel the soreness or stiffness from that workout. Same scenario with Oia; the casting period was her 'workout'.

2. Walking for Oia during this time challenges her balance because she's learning to control her muscles new range of motion. It's a lot to take in for a little one with CP.

Keeping her AFO and shoes on seems to help quite a bit (which we do anyways). She'd rather resort to a crawl right now without them.

Not sure how long this will last. The hardest thing for us to do right now is actually the best thing for Oia. We must gently force her to walk. It's not easy to see her limp and stumble but we know it's in her best interest to push her on. She has to fight through it, stay as loose as possible, and walk. Luckily, she's one of the toughest cookies I know.

This video shows Oia walking, still in her pj's, about an hour after waking this morning. Thankfully, her hobble does get better as the day goes on but you get the idea of how this must feel to her.

Tuesday, July 20, 2010

Serial Casting: They're Off!

Casts are off! Little feet are stinky but FREE and I could not be more happy about the outcome. Two weeks of casting has done exactly what it was supposed to do.

Oia was brave for the removal, (which I found quite terrifying) and she sat as patiently as she could upon my lap. She does have some itchy skin irritation and a pretty significant blister on her left heel, along with a few others, but these are to be expected. She rediscovered her feet and legs on the ride home. A happy girl she was.

Dr. R examined her range and stretched her legs to assess her progress. He was very satisfied with the estimated 10+ degree gain in flexibility and range in both legs. The change is obvious. He was very quick to say that she will not need to be recasted again until she grows tighter in the future, which will inevitably happen. But for now, this is major progress and one significant step to prolonging (or potentially avoiding) any lengthening surgeries that could be in our future. We return for another appointment with Dr. R in 3 months.

Below is a video taken today, just after returning home from our appointment. To appreciate what you are seeing, Oia stood only on her right toes when she walked barefoot, without her AFO, before casted. Her calf muscles were pulled so tight that she barely even stood on the ball of her right foot. She walked on her left toes as well but not as drastically as she did on the right side. Casting has made a huge difference.

She must still wear her right AFO as often as she did before, which is pretty much all the time. Not only does the AFO keep her foot stretched to as close to 90 degrees as possible, it also keeps her bone alignment proper.

Would we do this again? In a heartbeat. And again, and again, and again. Two weeks of casting a couple times a year to get the results we saw today? You bet I would. Today I saw my little girl stand with flat feet for the first time in her entire life. It's been a pretty emotional day... because this is one of the most beautiful things I've ever seen.

Monday, July 19, 2010

Casting: Almost Over

Well, only the first round of serial casting that is. Tomorrow we are scheduled to return to Oia's ortho doctor for the removal of both casts. I am trying to keep my excitement to a minimum as I suspect she will have to be recasted; at least the right leg. We shall see.

A little recap...
During the first couple of days, we made our way out for a couple of small shopping adventures. I'm a mission shopper, meaning I get what's on my list and get out so shopping doesn't always appeal to me but when Oia was reluctant to even let her feet touch the ground in the first few days, shopping (rather wandering) around the mall sounded like a good idea. She was happy to ride in her stroller, greet strangers, and it got us out of the house.

After about 5-6 days into casting, Oia was almost back to her mobile self. Still clingy but willing to walk more but still wanted to be carried too. Carrying Oia is something I have to do frequently considering our circumstances but I'm not as willing to do it as often as I used to, especially as she gets older and heavier. We have a chair for her in every room and I try to encourage her to sit and take a break instead of being held by me so much. The last two weeks have really challenged that.

We've taken some bike rides, wagon rides, and went to a local carnival. She rode 'big girl' rides and loved every minute of it.

We've continued all therapies; ST, OT, PT and hippotherapy because life does go on.

All in all, it's been a doable two weeks. Thanks to the heat though, indoors is mainly where we've stayed since I assume that casts in the middle of July would feel like a toasty pair of snow boots. No lake, no beach, no park, no pool. We're both going a little nutty.

Thankfully, the sleepless nights appear to be behind us. Not totally back to normal but much, much better. I shared the sleep issue with Oia's PT and she too agreed that Oia's muscles were probably achy, thus making rest and sleep difficult. In addition, with her calf muscles pulled and held in a position that they normally are not in means that all the other muscles in Oia's legs are being used in a different way as well. The fact that Oia is sleeping better now can be a sign that her muscles have indeed stretched and relaxed some in just 2 weeks. I'm eager to see those skinny, little legs again tomorrow to witness this for myself.

So by lunch tomorrow, Oia will have had an ortho appointment, an OT session, and a PT session. Just another day around here...

Monday, July 12, 2010

Casting: Sleepless Nights

One week of casting over, one week to go (that we know of). Days are going well but the nights...not so much.

We have been very fortunate in that Oia has always been a rockstar sleeper. In her own bed, in her own room, since she was just 4 months old. Aside from waking for an early morning feeding in the infancy days, she has always been able to sleep through the night. Knowing that Oia is well rested means in my mind that she is therefor healthy which has eliminated a lot of unnecessary worry.

But these dang casts are messin' up the program...

She has not had a good nights sleep or a decent nap since being casted. Up crying, tossing and turning, just trying to get comfortable but can't. I have tried to problem-solve every scenario in my head to remedy the problem but we're not having much luck.

All I can figure is that the casts are heavy which makes rolling over into a new position difficult for her. And they are probably hot, especially being under a light blanket. And the casts are rough. But the biggest reason we have come to conclude is that Oia's muscles have to be achy at night. They are in a constant stretch. My guess is that she remains active enough in the day to not notice the ache but at night it seems the ache is unbearable. We are hoping a little tylenol may alleviate the ache just enough so she can get some decent rest. Aside from sawing the casts off myself, I don't know what else to do to help her.

This is another classic example of when I wish my little girl could talk. How easy it would be if she could only say "Mommy, my legs hurt". Instead, I'll continue guessing and just pray for the ache to go away.

Friday, July 9, 2010

Serial Casting: Day 4

Four days into serial casting. Casts are signed and little toenails are painted red. That sweet little face is still smiling. Maybe my patience level is still quite high but this isn't all that bad...right now at least.

Oia's go-with-the-flow attitude is a real blessing. She has asked me just one time what was on her legs by gesturing to her feet and saying "wha's tha'?". After my answer of "Those are your new casts", she has not again paid any attention to them. Amazing.

Days 1 and 2, combined, Oia maybe walked a total of 20 steps, reluctantly and with much assistance. She just wasn't confident about her stability and who can blame her. The sensation she gets from having her feet positioned at 90 degrees is very awkward to her. Obviously, it's the correct alignment but her brain and body registers the new alignment as 'off'.

Yesterday was the third day and we had our first PT session since casted. Together, our PT and I had Oia walking again. She walked between the two of us for short distances which is a wonderful start. At the end of the day when Rob got home, she walked to greet him at the door, which is part of her routine and something Rob looks forward to. Proud Papa he was.

PT and I had a lengthy discussion about how to properly stretch Oia with the casts on. Since one muscle is connected to that muscle and that muscle to that bone and so forth...well, we realize more than ever now that everything in her legs are tight. Namely, the hamstrings and adductors as well as her hip flexors. Oia has a slight forward tilt in her hips while standing because of some tightness in her hip muscles and adductors and her knees do not fully straighten due to tightness in her hamstrings. We have to stretch her to maintain the flexibility she has now, which is still pretty good, all things considered. Still, the scariest of all this is that even with all the stretching and therapy we do on a daily basis, the tightness just has a way of getting worse despite our best efforts. Encouraging Oia to walk with the casts on will make her use those tighter muscles which will naturally provide some stretching as well.

Stretch for right hamstring; this is as straight as right leg gets

Stretch for right hip flexor

I'll leave you with a video of Miss Determination as she was getting her walking legs back yesterday. My ice cold glass of orange soda played no part in her desire to walk. (wink, wink) You'll notice that she is still up on her right toes some as this foot is casted just shy of 90 degrees. I suspect that Righty will need to be recasted after we complete these first two weeks since this is her more affected side.

Thursday, July 8, 2010

Blog with Substance

I have come to enjoy blogging way more than I ever thought I would. So much so that I would even blog regardless of a following because quite simply this is where I come for my therapy. But, knowing that there are people who follow us is icing on the cake...and then when a sweet soul like Sarah awards me with the "Blog with Substance" award, it's the cherry on top of it all.

As part of my acceptance post, I am supposed to sum up my blogging philosophy, experience and motivation in just 5 words. So here goes: meaningful, open, focused, informative, and awareness.

Now, I get to pass the award along to those who have, well...substance (which is really too many to name) but to name a few who inspire me nearly everyday...

A Life Less Ordinary- The first blog I ever followed and the first blog that gave me hope; Amy and Elena

Living With Faith- Candace and Faith

Bird on the Street- Katy and Charlie

Caleigh's Corner- Holly and Caleigh

(Thank you, Sarah. You make it seem easy to stand tall.)

Tuesday, July 6, 2010

Serial Casting: They're On

Well, they're on. Day 1. Just in time for 100+ degree weather. Thank you to all who sent us well wishes and kept Oia in your thoughts today. She was an absolute trooper for all of the casting process; never got upset once even though she had to lay on her tummy the entire time. Dr. R said Oia was more tolerant than even his older patients.

Both feet seem to be casted at the desired 90 degrees; left foot may even be a couple of degrees more than that. It's hard to tell exactly. No doubt that both legs are getting a good, continuous stretch.

And as I suspected, she can not walk in these (yet, I hope), even with the canvas sandals that were given to us to wear over them. It seems that right now it's very uncomfortable for her to stand and bear weight throughout her legs with her feet in this position. Today it was just too much. I can only imagine how weird and confusing this must be for her. Last night before I put her down at bedtime, we were sitting on the couch reading a few books. When we were done, I rubbed her legs and told her that in morning we were going to see Dr. R who would be putting casts on her legs. She listened, glanced at her feet, and then sighed. Bless her heart. She doesn't completely understand what's going on. I'm not sure of any child her age who would understand all of this but so far she's handling it very well.

Tomorrow is a new day. We'll try to walk some but we'll take it slow. I'm not going to force her until she feels comfortable. I know our girl will give it a go when she's willing and feeling more confident. Regardless of whether or not she is walking or just sitting, her muscles are getting the stretch they need and that's the main focus of these two weeks.

Monday, July 5, 2010


To most, CP stands for Cerebral Palsy. To us, Cutie Pie is much more appropriate.

Friday, July 2, 2010

Serial Casting

Oia had an appointment today with Dr. R; her ortho doctor so we could discuss some options to hopefully combat the tone in her lower legs. Both Rob and I as well as Oia's PT have noticed that in recent months her tone has become more tight; meaning it is more difficult to stretch her right foot/ankle into a 90 degree position. In simple terms, her right calf muscles and heel cords are becoming tighter because she is growing so quickly. Bone growth shortens the calf muscles by contracting them, thus having to walk on her toes. Right side is strongly affected, left side minimally but still an obvious concern.

Since growth doesn't play nicely with CP kids and that's what Oia has done a lot of these days, we are at a point in the road where an intervention is necessary. Our options are Botox injections, night splinting, or serial casting. Surgery may be a future option.

After this mornings discussion with Dr. R, he feels the best intervention for Oia is serial casting. And the kicker: both feet at once. Serial casting will provide Oia's calf muscles a prolonged stretch for a two week period. After two weeks, both casts will be removed and legs and tone re-examined. Depending on the results, Oia may be recasted again for another set amount of time; as many times over as necessary. I am unsure yet of how long the effects of serial casting last but the idea is to keep Oia as flexible as possible while she continues to grow so quickly. The more we can utilize a less-invasive approach now, the better our outcome will be of improving Oia's quality of mobility in 5, 10, 20 years down the road. There are no guarantees but we have to try and do whatever it takes.

Dr. R assured me that Oia will be able to walk while wearing the casts. We'll see about that.

Overall, this should be a good thing and we're happy to have resources and options available to us that will help our girl grow into the person she is supposed to be. However, I'd be lying if I said I wasn't dreading this process. I feel sorry that Oia has to go through the challenges she does and must rise to the occasion every single day. I don't want others who see her to feel sorry but as her mother, I reserve the right to feel sorry from time to time. It's hard to watch your child go through these things but as Rob has told me long ago, "These things build character" and that's certainly all little Miss is full of.

Oia will be casted Tuesday morning, July 6th.