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

Thursday, June 30, 2011

The Stranger at Starbucks

Today started as any other Thursday with a full hour of Speech Therapy. We drive to this particular building at least twice a week for one service or another - all services I'm thankful for but don't always look forward to. Sitting in on speech session after speech session and witnessing the challenges that Oia has to overcome in order to communicate breaks my heart over and over again. I leave each session feeling so proud of my girl yet all the while thinking of the road that still lies ahead. Progress is so slow that I question whether it's even happening at all, although I know it is. I confess. Not being able to understand your child is pretty darn hard to deal with and Apraxia just sucks.

So feeling a little down, I made a little detour by Starbucks before heading home. Oia was in need of a snack anyways which made me not feel so guilty about treating myself. I ordered our drinks and a chocolate chip cookie for Oia then we headed on our way.

On our way out of Starbucks, we passed a lady sitting alone at one of the cafe tables just outside the door. She was clearly just enjoying her morning, with a crossword puzzle book on the table, but more there to people watch I assume. Oia hobbled up to the lady as she proudly sucked on her strawberry frappe, said hi, and then continued on past. I too exchanged a hello with the lady, wished her a good day, and on we continued. I then traded Oia's drink for her hand so we could safely walk across the parking lot. Oia is slow. We take our sweet time. She likes to lead the way. She chose to veer left, walk up a curb, take a few steps, then step back down again. She passed by another stranger to whom she shouted one of her famous hi's, clearly earning his attention. Finally, we made it to our car. Oia decides it's best if she climbs into the car herself, which again, takes forever but more power to her. As I'm patiently waiting for Miss Independent to make her way into the car (mind you, my hands are full with both our drinks, a snack, car keys, and my wallet), I'm startled by the lady we just saw sitting at the cafe table, who at this point has just rounded the back of my car and is now standing next to me. A million things ran through my mind. The protective, momma bear in me was ready to attack if need be but then the lady spoke and I immediately backed down.

Looking at Oia, she says, "She is my hero".

"Oh, yeah?" I say.

"She's so beautiful and she spoke to me and made my day. I really enjoyed watching her walk away, too. She is so happy with who she is and it's wonderful to see. (pause) She is just so beautiful."

Speak no more, lady, you just made my day.

Naturally, I thanked her for such kind words, we shared a few more words with each other, then introduced ourselves before parting ways. Oia finally made her way into her car seat and soon we were ready to hit the road again. My mocha tasted especially sweet on the ride home and my ho-hum mood brought on by another slow speech therapy session was diminished. Those out-of-the-blue words from this complete stranger has kept me floating throughout the day. I may still be floating tomorrow.

This lady could have only thought these words as she watched Oia and I walking through the parking lot. Instead, she chose to catch up with me to share what was on her mind. Her random act of kindness, which only lasted just a few seconds, meant a great deal to me and frankly, it was just what I needed this morning. All too often in this rat race known as life, these particular moments seem to be a rare occurrence. Perhaps we should all live to note the seemingly small things and then bring them to light to brighten someones day. Those who do are the real "heros" in my opinion, and the stranger today at Starbucks was mine.

Friday, June 24, 2011

3 Weeks Post Surgery

If there is one thing to be said about Oia, it's that she is so accepting of this life, and more resilient than her parents. She doesn't always know how life is supposed to be, but rather trusts that we as her parents do, and that in turn works to her favor and I guess, essentially to ours too. During the postoperative 3 week period, she quickly found ways to maneuver and resume her usual activities, ie. walking, crawling, stepping up or down steps, and even climbing (all of course with very close supervision at all times). That even includes powering herself all the way up to the back of the couch, which she straddled and bounced on as if to be riding a horse. Would I normally let her do this? Probably not. But how in the world do I pull this proud face off the back of our couch when she worked so darn hard to get up there?

Three weeks have passed since the surgery. It wouldn't be an exaggeration to say she breezed through these last 3 weeks without one complaint. Really. I, on the other hand, couldn't wait for this morning's cast removal appointment with her ortho doctor. Felt a little like Christmas morning to me. How would her incisions look? What would her range of motion be now? Would any gains be immediately noticeable? Would stretching her be easy? Would she be able to stand and walk right away? Or would she even want to?

So, the cast came off and incision sites were hard to notice. There was some slight bruising around her foot and ankle but it's all very normal. Her ankle seems a little puffy, but again, this is normal too. Doctor said it's important to keep her KiddieGAIT (AFO) on as much as possible while she is up and on her feet since 3 weeks is still not enough time to be completely healed (still another 2-3 weeks for complete healing) but at this point it is safe to be out of the cast. At doctor's request, I put on her brace and shoes after the cast was removed and we put her to her feet with a room full of staff watching. Oia didn't hesitate - she slowly walked about 15 feet across the room. Her leg is overall weak and her knee is very stiff but with continued use and PT, she'll learn the feel and control of her new range and hopefully be walking more symmetrical and taller than ever before. In fact, she already is. If today is any indication of what she'll be walking like in the future, then I know for certain we made the best decision to have this procedure done. Results were immediate and obvious to all who were watching. I felt a little teary as this was my view leaving our appointment...

Perhaps some before and afters may paint a better picture.
Oia's typical stance morning of surgery, sans brace: high on right toes, bent knee, left side bearing most (if not all) of her body weight.

Today's stance, 3 weeks post surgery, day of cast removal: flat right foot, straight(er) knee, taller stance (no crouch) and more level at hips (although this picture just shows legs). You'll note in this picture the difference in size of Oia's calves. This is typical for kiddos who have a weaker extremity though the difference is fairly mild.

Below video shows walking at PT session with SMO insert only, 1 hour after cast removal. Note the weak dorsiflexion (toe-lift) in right foot. Her KiddieGAIT provides assistance in that movement. She does have more doriflexion post surgery which is promising - it's one of the first things doctor checked and commented on as soon as her cast was off. Naturally, right knee is stiff and she's a little unsteady but overall, looking good.

We're are pleased and love what we see. Flat feet are beautiful. I think Rob and I both feel a sense of relief that the hard part is over. Now, it's all a matter of learning to walk with new range and flexibility, regaining strength, and increasing right side dorsiflexion. It's nothing our little Miss can't handle.

Tuesday, June 14, 2011

Chocolate Covered Oreos, Anyone?

Just a slight disclaimer: I do dress my child. Given the yummy mess that was about to take place, we stripped Oia of her clothing so she could carelessly indulge in all the chocolate her little heart desired. The pool is still currently off limits for another week and a half so we have to get a little creative indoors.

Friday, June 10, 2011

Determined but not Bound

The days since Oia's lengthening surgery are passing by fairly smoothly and better than expected. I have to admit, when I learned that Oia would be required to wear an immobilizer for 3 weeks post surgery, in addition to her cast, I doubted she'd be able to walk during this postoperative period. Shame on me. She's figured it out. She's been walking with the new garb since Tuesday evening - which was just 5 days after surgery. I swear, it's as if this girl wears an invisible bag slung over her shoulder, one that contains endless amounts of determination and patience and she pulls out just the right amounts of each whenever she needs them to slay the challenges that come before her.

You want to cut and stretch my Achilles tendon and sever my hamstring in two places? "No problem", says Oia.

Monday, June 6, 2011

Post Surgery: Day 4

Four days down, post surgery, and things are moving along pretty well. We have no idea at this point what the gains and outcome will be yet from this procedure but one thing is for sure - Oia is ready to walk again. That's promising.

We have to gently bring her to her feet each day to at least have her bear some weight on her right leg. Overall, she is willing and today she walked a lot. She steps with assistance and support but this is mainly due to the fact that she is wearing a knee immobilizer. The immobilizer is providing a greater stretch to her hamstrings as she heals and she has been wearing it all day and night, without complaint, since the surgery. Today was actually the first day it came off for any amount of time (other than an incision check) for hippotherapy. After the hippotherapy session ended, I seated Oia on my lap so that the immobilizer could be put back on. I expected some resistance, er, a little fit from the Miss. Instead, Oia lifted her leg to help me put it back on - on her own will. Amazing.

Oia has been pain med free for the last 24 hours. Her knee is slightly swollen but nothing out of the ordinary. She is not in any discomfort that we can tell, another promising sign.

We are just continuing with life as we know it. Having my mother here to help with the lifting and carrying and entertaining has been a huge help. Though mentally, Oia is getting bored easier since her independence has been temporarily stolen but with a therapy session scheduled almost every day of the week, she stays stimulated and busy enough. Today Oia resumed hippotherapy since school is now over for summer. What better way to get around when you can't walk? She was thrilled to be back in the saddle again and rode like a pro - cast and all.

These picture are from today's session. Check out the control with Righty and the rings.

Friday, June 3, 2011

Post Surgery

Early Thursday morning was Oia's surgery and the procedure went well. Speaking for myself, I didn't really sleep a wink the night before, just nervous for the morning to unfold.

We arrived at the hospital by 630am. We were walked to our room, changed Oia into her gown, answered a few last minute questions, vitals were checked, dotted line signed, then around 800am Oia was taken from us by the anesthesiologist and carried through the forbidden double doors ~ without us ~ the part I just can't handle. Rob walked with her as far as he could but I on the other hand am exceptionally emotional these days and stayed behind to release my emotions privately from behind the door of our little waiting room. Oia was cooperative and trusting the entire time we waited, just as I knew she would be ~ saying "okay" to everything the doctors and nurses explained to her. She is so small yet so big.

Rob and I tried to enjoy our breakfast date in the hospital cafeteria... sounds lovely, doesn't it? Then surprisingly, after just 45 minutes, the surgeon called us to say they we're nearly done and we would be notified once she was wheeled into recovery. Ten minutes later, we were headed back upstairs to cradle our groggy and very uncomfortable girl. Big belly and all, I crawled into the bed with Oia to hold and comfort her and let her sleep off some more of the sedative. She was aware of her environment and us (which was not the case after her eye surgery) and in and out of sleep. She showed some signs of pain by flinching her leg so we requested some pain meds for her which thankfully came quickly. Oia was in recovery for about an hour and a half and even though she could hardly hold her eyes open, she still mustered the strength to utter a pitiful "go". Translation: "Get me the heck outta here!"

Once getting home, we set up camp in our king bed, turned the tube to cartoons, and alternated sleep with play, all at her beckon call.

It wasn't until about 230 yesterday afternoon that we saw a slight smile again. She devoured a bowl of grapes and blueberries, chugged lots of drinks, fussed on and off, but was surprising manageable. Then, bed time came and that all changed.

Oia and I slept in the guest bed together so we could have more room. I needed to be by her side to reposition her as necessary. Despite the meds, she tossed and turned and fussed all night long. I resorted to a dose of Valium around midnight but even that didn't seem to help much. She was just plain uncomfortable. Needless to say, morning came way too quickly.

Today has been a long day of carrying, sitting, and lots of wagon rides which she is now completely sick of, and a stroll in the jogger.

We have not forced to her stand at all, in fact, we are kind of reluctant to even attempt it (even though doctor says to do it as soon as possible). I don't even expect her to want or be able to do it at this point. Oia, on the other hand, tried to get to her feet a few times later this afternoon. Since she initiated being on her feet, we strapped her walking bootie over her cast and put a tennis shoe on her other foot but as soon as her feet tasted the ground again, she screamed. I applaud her for trying, she even attempted several times after that. She finally worked up enough endurance and shook off enough pain to take a spin around the house on her brand new scooter, which must have been simply irresistible given her previous cries.

Our plan is to continue the pain meds for another day and see where we should go from there. Right now my angel is down for the night and sleeping peacefully, with the help of Valium. I think tonight we may all get a little sleep, or so I hope.

One day down. Feels like way too many left to go... thank goodness my mom is here to help us. We can do this.

Wednesday, June 1, 2011

Surgery Eve

In about 10 hours, Rob and I will squeeze Oia extra tight and silently pray that we're making the best desicion for our girl and her long term mobility as she undergoes lenthening surgery on her right leg. More specifically, PERCUTANEOUS MEDIAL HAMSTRING RELEASE and TENDON ACHILLES LENGTHENING.

Sounds like an awful lot for a little leg of just 3 years to endure but our girl is brave and mighty. Hopefully tomorrow, I can be too. I'm trying not to predict what the recovery period will be like simply because there is no way to know for sure. All kids recover differently, or so they tell us. I know there will be tears, some pain and discomfort, and perhaps some confusion, but in my heart I know each hour, each day, each week, will bring us back to our "normal" - and if we're lucky, even better than our "normal". I pray.

Stay tuned...