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

Wednesday, April 28, 2010

The Sweetest Words

The sweetest words ever spoken to me are the words that compliment my daughter for the precious little soul she is. They are the words that come from the mouths of strangers when you least expect them. They are the words that make you smile, inside and out, and leave you giddy with pride for the remainder of your day.

The smile on my face this morning was made just a little wider when an elderly man looked at Oia, smiled, shook his head with what seemed to be nothing but awe and said very softly...

"...an Angel with a pony-tail."

That she is. How lucky I am to be her mommy...

Sunday, April 25, 2010

Relinquish What?

A few posts back, I mentioned that Oia finally made her dot on the growth charts for the first time ever. This meant that it was time for me to relinquish the fork and allow her to begin self-feeding. I have always been guilty of chasing her around the house at meal times with a fork or spoon full of some buttery goodness to make sure she gets the full belly and calories she needs. Relinquishing the fork is not an easy thing to do when you're a neat-freak like me plus constantly worrying that someones skinny, little body is getting the nutrition required to endure therapies and other physical challenges. In addition, when your daughter does this at mealtime, it doesn't make giving up the fork any easier....


Hippotherapy: Session 4

This weekend Oia had her forth hippotherapy session. This one may have been the best session yet. Sessions 2 and 3 were a bit miserable for Oia only because she just doesn't like wearing the helmet and she poked her bottom lip out about the whole time to communicate her extreme dislike for even having it on her head. Some tears were shed as well. Yesterday, however, she seemed to have taken a turn for the better in that department. No lip, helmet tolerance, and LOTS of talking Oia-nese the whole time.

The session yesterday was a bit of PT, OT and ST all rolled up into one. This time there were no handles for Oia to grab onto while riding which obviously makes staying balanced, centered and upright more challenging but she handled herself well and needed no adjustments. She rode while seated forward, backward and sideways. The therapist would stop frequently to engage Oia in an activity to make her use Righty by throwing balls and grabbing rings and other small toys. They even challenged Oia by trying to help her say the pony's name and other smaller words. She tried to do all that was asked of her and did very well.

This clip shows Oia riding sideways and changing into facing forward. She is actually able to lift her right leg (weaker leg) up and over and initiate the change on her own. That's pretty awesome. (Take note that our therapist is also wearing her helmet...to appease Oia. I guess misery loves company.)

The next clip shows Oia working to grab a toy with Righty. Also, she must say the pony's name to resume riding. She can easily say 'go' so you'd think that saying 'Bo' would be just as easy for her but it is not. Instead, they modify the name to just 'B' and this she could say after some prompting.

The session ended just a couple of minutes early because Mr. Bo got spooked. They were riding right in front of Rob and I as we watched and suddenly the pony 'jumped' and jolted backwards. The lady walking Bo did a great job of pulling the lead tightly to her to prevent him from dashing off or rearing up and Brenda, our therapist, pulled Oia off without hesitation. The whole incident lasted about 5 seconds and was very much under control. It happened so fast that I wasn't scared until after it was all over...

Speech Therapist Update

It seems as though our Early Intervention Service Coordinator has found a potential speech replacement for Oia. As far as I know, this potential therapist is employed by UVA and she is also a certified EI therapist. However, this therapist is currently undergoing some contract changes and can not officially begin as our new speech therapist until all protocols are met; which will be approximately the middle of May. Our SC will provide me with her contact number once all is in place. I know nothing yet about this woman's approach to speech therapy or preferred techniques but it was communicated to me that she is NOT a proponent for the technique that our previous therapist used. Sounds better already. Remaining optimistic...will keep you posted.

Sunday, April 18, 2010

Happiness is...

...poppin'-a-squat in the warm, Sunday sunshine to relax and enjoy your very own juice box.

Thursday, April 15, 2010

Seeking Change

I'm not sure that I have ever blogged about speech therapy before. Actually, I have not. To be honest, the topic frustrates me beyond measure and in recent months I have come to dread our speech therapy sessions. And I have to admit, I've never been an easy one to convince that speech therapy really works. I'm hoping that's just because I have not yet seen a speech therapist work their magic with a child and gain any significant progress from whatever technique or approach they chose to use. This goes for the ST's I've worked with in the public school setting as well as the one who works with my very own child. Shall I say, worked with my child.

I couldn't take it another speech session longer and keep my sanity all at the same time. Thank goodness for a wonderful Early Intervention Service Coordinator who has gone above and beyond the call of duty for us ever since we moved to VA and began the state's EI services. I called our SC yesterday and said in a nutshell...we need a change and this means a new speech therapist. NOW. It wrecked my day but it had to be done. I don't like making waves or hurting feelings but we are all adults in the picture dealing with a sweet soul who needs the best of any therapy around. Oia deserves nothing but that and in this case I felt she wasn't getting it.

A little background...Oia babbles constantly. All day long. She looks us square in the eyes and speaks Oia-nese but we have no idea what any of it means. It breaks my heart. She has a handful of words; yea, no, bye, hi, up, help, wake up, get up, what's this, go, mommy, and daddy are the consistent ones and a few others when prompted. She has been in ST since August. I knew very early into ST that the approaches taken were not aggressive or dynamic enough for Oia. Things seemed 'fluffy' and way too relaxed for my liking. Nothing was happening in the hour of ST that I wasn't already doing with Oia in our daily interactions together. However, I stuck with it for this long. Why? Because I am realistic and I am fully aware that progress in the CP world is very slow and progress certainly doesn't happen overnight. But, that's all the more reason to have a determined therapist who is willing to think outside the box to find a more direct approach that will really tap into what Oia needs. We have just 4 months left before Oia ages out of EI and I couldn't live with the regret of not seeking a change and wasting more precious days of what need to be full of engaging and meaningful therapy.

To be fair to any ST who has or will work with Oia, language is Oia's biggest challenge and for a very good reason. The placement of her cleft (hole) in her brain most interferes with her expressive language development. Our neurologist warned us of this. She communicates somewhere in the ballpark of a 15 month old and she is 32 months old. She is showing signs of frustration because of this gap between expressive language and receptive language. Her receptive language is age appropriate. She is a curious being full of thoughts, wonders, and questions with no way to express them all. I have become quite skilled at reading her mind but who would choose a mind reader over their own voice? Not Oia.

So waiting on a new placement...I may get to 'interview' a couple potentials before the final assignment is set. I remain hopeful. I know that with the right speech therapist coupled with all that Oia brings to the table already, she WILL talk.

And I can't wait...

Monday, April 12, 2010

Righty: Involved and Doing Well

It's been hours and hours of OT (2 years to be exact), countless verbal cues, and two Constraint Induced Therapies later, combined with a little girl who likes to figure it all out on her own time and now, Righty is doing some pretty amazing things. We are finally witnessing Oia master some seemingly ordinary daily functions with two hands instead of just one. Progress is a beautiful thing.

We have had the same OT goals for Oia's right hand/arm, aka 'Righty', for many, many months. To say maybe for even a year now isn't that far of a stretch. The main goals and hopes for Oia is to voluntarily grasp and release an object with her right hand and perform common, every day functions with both hands working together. I have found that as her cognitive development grows, so does her bilateral awareness and willingness. She is learning that Righty is her helper hand and she's quickly coming to understand that some things are far more easier tackled with two hands instead of just one hand and sometimes her mouth.

One thing that helps Oia a great deal is the fact that her right hand remains open and relaxed most of the time. In the beginning, it was her fisted hand that threw us a red flag but now fisting is not the norm. She now does a lot of transferring objects from one hand to the other; from right to left and left to right. This is so neat to see. There's an annoying thing called 'overflow' that made this otherwise simple task very, very difficult for her before now. These days, the overflow is at a minimum and she seems to have much more control over that issue. We have even witnessed her pick up two small objects at the same time, one object in each hand. And just this morning in fact, she successfully reached to the floor to retrieve her binki with her right hand while her left hand was engaged in holding a shirt; no overflow there.

But what makes me most proud is that Oia can hold open a bag of snacks with Righty while reaching into it with Lefty. I wondered if she'd ever, EVER, be able to have this kind of function from her right hand and here is my answer. She absolutely does. This may not be the most flattering video of a girl who loves her chips, but you get the idea.

She does this with no prompting to "use Righty" or to "hold it with both hands". I can hand her a bag of snacks and she works to separate the top and then grabs ahold with the right hand while she feeds herself with the other hand. (The first time she did this I swear the sky parted over us and the heavens began to sing.) She prefers to eat her snacks out of a bag now instead of putting her snack in a bowl. I could not have imagined this just weeks ago. She is spontaneously using her right hand over and over again to do so many things in her day...it's fantastic. Righty is alive and well.

Patched and Stylin'

Just sending a special thank you to Kendall and her mommy for sending Oia a variety of fancy-smancy eye patches. We appreciate your thoughtfulness and generosity. The girly patches make patch time a little bit more enjoyable, well...at least for me anyways.

Tuesday, April 6, 2010

My Holland

There probably isn't a special needs mommy out there who hasn't read at one time or another Welcome to Holland by Emily Perl Kingsley. I had taken a couple of days off of work immediately following Oia's diagnosis and a co-worker of mine had given me a printed copy of this upon my return. Of all the cards, flowers, small gifts of thoughtfulness, and even some handwritten letters that I received in the days following, this was the one thing that seemed to fit and make sense. I remember reading these words shortly after they were handed to me and I recall thinking to myself, "This is exactly how I feel." The words brought a bit of hope and comfort during a painful time of uncertainty.

So being the lover of flowers and symbolism that I am, I planted my own slice of Holland...right in my own back yard. Rob and I built a flower bed together last fall and in it I planted nearly 100 tulips bulbs. Oia and I have spent our spring days walking to the flower bed together to watch the bulbs sprout and grow and bloom into tulips; slender and beautiful just like her. I've learned to make the most out of unexpected turns because Holland, at least my slice of Holland, is not such a bad place to be after all.

Monday, April 5, 2010

Hippotherapy: First Session

Saturday was Oia's first hippotherapy session. In addition to OT, PT, and ST, she will also now get hippotherapy 1x/wk for 30 minutes. Hippotherapy helps improve postural control, balance reactions and mobility in ones hips and upper body. While mounted on top of a horse, Oia or anyone like her, can accurately feel the sensations of a typical gait/stride through the horses natural mimic of this. We are thrilled that she has the opportunity to experience such a therapy and not only that, but she really, really enjoys herself doing it.

The helmet on the other hand...not a fan. I strategized with her and said that this is what the 'professionals' wear when they ride. I'm sure that concept went right over her head but she went with it anyways and quickly mounted her new friend, Mr. Bojangles.

I was thoroughly impressed with the first session. Nothing too hard but appropriate for the first session. Oia felt at ease. She sat forwards, backwards and side-ways on the horse. There were two separate hand-holds for Oia which is perfect for engaging Righty. She did great keeping a strong grasp with both hands. They played music for Oia while she rode a few laps, played a stop and go game, and she even got to toss a ball back and forth with one of the spotters. The time was very engaging for Oia and she straightened her posture very quickly after seated on top.

They had Oia trot lightly for short bursts but most of the session was done at a walk. She didn't mind the bounce at all. In fact, she prefers the thrill.

Oia got to feed a bowl of treats to Mr. Bo after the session was over. She shuddered a bit with uncertainty having such a large animal so upclose and personal but she handled it well. I think next time she'd like to request a little more personal space from Bo. Or maybe perhaps we'll just bring Bo a carrot next time.

The session painted huge smiles on all three of our faces. For Rob and I to see her riding seems a bit magical to us. Call me a sap, but I get chill bumps every time I see my little girl holding her own on top of a horse. Just proud...really, really proud.

Friday, April 2, 2010


Exactly 2 years ago today, Rob, my father, myself and Oia, all sat in the coldest, eeriest, most unwelcoming room we had ever step foot in. My gut told me all day long that this particular moment would be one that we'd never be able to forget for I knew the experience we were about to endure would not be a good one. In fact, I knew it might just even be painful.

And I was exactly right.

It was Wednesday, April 2, 2008. With my heart pounding and my mind racing, an innocent 7 1/2 month old Oia sitting calmly in my lap, and with nerves that rendered me speechless, I waited for the neurologist to enter that lonely room at UNC. Rob seated to my left, my dad seated across the room to my right. No one really spoke...too busy wondering. It felt like we were filling in for someone else's appointment with our own child; like we had been given a script to follow and perform as the whole situation was surreal. I was feeling misplaced and vulnerable because at that moment, I was not in control.

I don't remember all the details of the appointment but I certainly remember way more than I wished I did. The neurologist handed us a couple diagnoses along with a grim future and low expectations for our daughter's future. I questioned whether this man even had a heart. He seemingly dropped all optimism at the door before he walked in to hand us the life-altering news. We arrived at this appointment with a sweet baby who simply had a fisted hand and left with a palsied, mentally retarded, globally delayed, quadriplegic daughter. Those cruel words that then described our new reality still echo in my head to this very day.

I recall feeling cheated and mad. Mad because my innocent baby didn't ask for this nor did she deserve it. I came to realize that day that Oia's life was going to be a constant challenge, a struggle, full of hard work and broken hearts because words do hurt. It was not fair.

Rob and I have re-visited Diagnosis Day on occasion during our intimate conversations about our life and Oia's. It's never a warm place to return to but somehow it sneaks its way into our discussions from time to time. We allow that day to be a reminder of where we have been and more importantly, were Oia has been. Knowing where we started and tracing the path that lies behind us makes the present seem more gratifying, so remarkable, so miraculous, and so, so delicious.

Today, Rob and I are stronger individuals than we ever imagined we could be. We see life and children from a different perspective. Our view is beautiful. We savor Oia's accomplishments, her milestones, often her inchstones, and appreciate the determination and physical strengths it took for her to achieve such a triumph. We take nothing for granted, not even for a moment. Our eyes are wide, our hearts are overflowing, and our souls could not be happier. That "palsied, mentally retarded, globally delayed, quadriplegic" daughter of ours is changing the world right before our eyes and we feel honored that she decided to start with us, her parents.