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

Monday, February 22, 2010

Another First with CME

Firsts. We long for them. We wait for them. Even dream about them. Practice over and over to get them. Then wait some more. And finally, when you least expect it, one happens in the blink of an eye. Our morning was blessed with a first and it's almost impossible to sit still long enough to make this post as I am beside myself with pure joy.

Oia had PT this morning, the usual hour of CME. Our main focus for Oia right now is her posture; hip alignment and bearing weight equally throughout her legs (she favors the left side of her body) as well as shifting weight appropriately to step up and down steps. This is not easy. At all. Especially the down part. BUT, she is getting stronger and better by the day and this morning was proof.

Oia successfully stepped down from 1 step to the floor, unassisted, with no handrails or a hand held, and she remained standing tall once both feet were on the ground!

I cheered. Screamed really. And I'm not ashamed to admit that I swallowed back some tears before cheering some more.

Oia's PT is wonderfully challenging for Oia and she insisted that Oia try for a second success. Oia tried and failed. A third attempt...success. Fourth, fifth and sixth attempts...success yet again. This. is. huge. We have been practicing this for several months.

Oia's one step down today is literally one step towards a more enjoyable trip to the playground or a safer, more enjoyable walk anywhere outdoors, a safer walk in public places. Heck, it means Oia can one day come downstairs from her own bedroom without our help. In simplest form, this is one teeny-tiny step towards Oia's independence and that is why just one step feels so significant.

To say the least, I'm over the moon happy and so darn proud.

Hats off to you, Oia Lee!

Thursday, February 18, 2010

Expressive Language

I'm sure that raising any child always makes a parent feel like there is something to worry about but the worry and question is intensified when your little one is developmentally challenged. Often times, the worry and question can consume me.

We, rather Oia, has come so far. Physical progress has been remarkable. Last February Oia was only a sitter. But here we are today. She crawls. She walks. She even walks fast when she wants to. She can squat to stand without falling. She climbs. Her receptive language is age appropriate. But..............she doesn't talk. Let me clarify; she is vocal, makes LOTS of purposeful sounds, but she is not yet considered verbal. She has a few words and some more are slowly emerging but this is obviously a very, very, difficult area for her.

Oia is seen by a speech therapist every other week. She began ST just before her second birthday. I've never been convinced that speech therapy makes much of a difference. I realize ST's are trained and skilled in what they do but an ST session looks like a fun playdate to most.

Here is our situation.

Oia drools. She no longer needs to wear a bib anymore but by the end of the day she does have a wet shirt and some days it is more wet than others. The drool means Oia has some low tone issues in her lower jaw. So we've been told. However, she is a neat eater, eats ANYTHING, any texture, and can drink from any sippy cup or straw with no problem. Everything stays in her mouth. In my opinion, tone can't be too much of an issue since Oia can do these things. This is a huge plus where language is concerned.

Oia understands. Receptive language is age appropriate. She goes where I ask her to go, she gets what I ask her to get, and she does what I ask her to do. Another huge plus in the language department for sure.

The problem I feel is that I have no solution for that tiny, little hole in her brain. I can't change it. I can't fix it. Schizenchephaly leaves it's mark and it never goes away. This hole is making expressive (verbal) language very difficult for her. My hands feel tied with this one and I certainly can't speed up the process.

If someone a year ago today would have told me that Oia's biggest deficit (or challenge I prefer to say) would be expressive language, I would have never believed them. Not for one second. As soon as we learned that Oia had cerebral palsy our minds raced to the physical aspects. Would she sit, crawl, ever stand? And the most heavy of all wonders; would she ever walk?

Now, I'm wondering, 'My goodness, will she ever be able to talk?'

(Note to self: Be patient. Be content. Be thankful.)

Sunday, February 14, 2010


I have mentioned in previous posts the independent, big girl that Oia is growing into and it's so indescribable to explain the joy that this two year brings to us every single day. Funny how someone can barely speak, yet still understands and tells us so much.

Which brings Rob and I to the topic of discipline. We have tossed around discussion of when is the right time to begin disciplining Oia. She is globally delayed...this covers cognition...would she have the cognitive skills yet to understand us when we try to discipline her? Really, her behavior doesn't yet warrant discipline but on occasion maybe some guidance or modeling of certain behaviors but not discipline per se. We model how to greet others, how to play nicely with other little ones, etc. She's not a hitter, not a biter, not a pusher or shover, doesn't yank toys from others, and she isn't really verbal so talking back is out of the picture for now. The only thing that seems to be an issue at this point is that she throws things at the most inopportune times...and boy, does she have an arm! So, Rob and I agreed that this was not appropriate behavior since someone could end up hurt or something could end up broken.

So, let the discipline games begin. Tonight was our first, real, trial at disciplining. Oia was playing with a new Snoopy toy that plays music. She loved it, played with it for a few minutes and then she launched it. It landed on the floor but was close to hitting me. Sometimes we think she does this for a reaction but then other times we think it's just sheer excitement that takes over. Whatever the reason, throwing toys is not a good idea. So, Rob firmly squeezed her hand and gave her a stern 'NO'. She froze. Then, she looked up at Rob and said very sheepishly and softly in reply, 'no'. Then, out came the lip. The bottom lip. The lip that prefaces a blushed face and a cry which means that someones little feelings have just been crushed. She got the message. She understood.

I'm not sure who felt worse; Oia or daddy.......

But, that's okay. In some sort of crazy, special needs kind of way it's really a beautiful thing to get such a reaction from our 2 year old. Looking at the silver lining.......it's just another moment that confirms cognitive development and receptive language. I am sure many toddlers have adorned pouty lips and right now Oia is no different.

Thursday, February 11, 2010

Eye Looks Good

Post-op appointment today was quick and painless. Basically today's appointment was to check for infection and proper healing. All looks good. The white of Oia's eye is still slightly pink, or blood-shot, but hardly noticeable at all.

Dr. P said her right eye may look over-corrected now (looks outward slightly) and according to him that is perfectly normal for now. I'm glad he mentioned this first because this was an immediate concern of mine. He explained that because the eye has looked toward the bridge of her nose for so long, the inner muscle rarely, if ever, was used resulting in a very weak muscle. It will take time for this inner muscle to strengthen in its new position. The good news is that it's obvious that Oia is trying to use her right eye. We know this because she turns her head slightly to the left to face the right eye forward. This is a good sign that there is vision to work with, maybe more than we all had realized. The true measure of progress post surgery is around 6 weeks and so that is when we return to Dr. P. At that time, he will also check for any prescription changes and adjust accordingly. In the meantime, we are to resume Atropine drops as a form of patching to her left eye; 1 drop every two days. Maybe we'll have better luck with drops post surgery than we did prior to. Let's hope.

Dr. P also said there is only a 10% chance of a second surgery but I think that's a gutsy assumption at this stage of the game. Only time will tell.

We are so glad we had this procedure done. It's neat to see her look at us with both eyes now. Though her vision is still a work in progress and far from perfect, we have a lot to work with and even more to be thankful for.

(Photo was taken at today's appointment. Apparently, sitting in the chair wasn't nearly has fun as standing in it.)

Tuesday, February 9, 2010

A Sweet Surprise

A sweet surprise was delivered to our door yesterday. A yummy arrangement of fresh fruit and an 'I Love You' balloon made all of our day a little brighter, although it was intended for no one other than Miss Oia. Thank you Mamaw, Aunt Tara, Uncle Bobby, Callie and Colton for the kind, post-op wishes from afar.

The post-op appointment today with Dr. P was canceled due to another impending winter storm. We are rescheduled for Thursday. I have a lot of questions and concerns and I am curious to hear the doc's assessments now that surgery is over. Stay tuned..........

Saturday, February 6, 2010

Oia's Eye Surgery

Friday was Oia's first eye surgery and our first experience with surgery period. The first, and hopefully the last, but only time will tell. Oia had the 2 horizontal muscles of her right eye cut and reattached in hopes of realigning the eye to make it straight, or in align with the left eye.

After checking in early Friday morning, we changed Oia into her gown and signed some last minute pre-op paperwork and talked briefly to Oia's doctor. We waited only a short while before they called us back for surgery. Only one of us was allowed to take Oia into the operating room so Rob was kind enough to let me have the honors. She was happy all morning but on the way back to the OR I think she sensed something was up. I gently placed her onto the table. Immediately the gas mask was in place and she fought her best fight for about 10 seconds until the anesthesia won. I kissed her cheek, walked out, and held my breath until they called us into recovery 1 hour later.

The nurse opened the recovery room doors and we heard her before we saw her....always a little tug on my mommy heart. The nurse holding Oia had a look of relief on her face when she saw me dashing their way. It took me a few moments to get Oia calmed down as she was obviously uncomfortable. The combination of anesthesia, some discomfort and sheer confusion is an ugly combination for a two year old. We remained in recovery for an hour and she was still 'out of it' for the most part. I'm a bit of a worrier and I questioned the bloody tears and bloody mouth but was assured by all that that was normal.

The ride home was smooth, meaning Oia slept for most of the 2 hour ride. She woke for the last 10 minutes and that is when I saw her right eye opened for the first time after surgery. It appeared to be straight (but still a little early to tell) and she was able to use her right peripheral to look out the window. It was neat to see.

This photo was taken the follow day. Still puffy and red but the good news is that she doesn't show any signs of irritation or discomfort and does not reach to rub it which is amazing. We have kept her comfortable with Tylenol.

We return for a post-op appointment this Tuesday, weather permitting. We are currently without power (today is Sunday) and have been since surgery day. Our area is hidden among a heavy 2 feet of snow and more snow is forecasted for Tuesday.

Stay tuned for the post-op update......

And thank you everyone for keeping her in your thoughts and prayers...we are blessed beyond measure.

Tuesday, February 2, 2010

My Big Girl

Oia is growing more and more independent and seems so 'big' these days. It's really quite remarkable the changes we've seen her go through in just the last month or so. Cognitive changes. She is choosing to play more on her own now (though she still prefers to play with someone) and she's into exploring and climbing and constantly on the go. Seems a bit weird to even see these words typed out in front of me as it sounds kind of normal and some days I can't believe it but how very blessed and thankful we are for the little girl, rather the big girl, that she is becoming. I can't help but think that a year ago I wasn't even able to imagine what she could possibly be capable of today; physically or mentally.

I live for moments with Oia that can't be captured on camera. Moments that are hidden among the daily routine. Moments when Oia does something because she completely understood what I just said. Her first neurologist told Rob and I that we quickly needed to familiarize ourselves with mental retardation so when I ask her to let Dugan in and she walks to the back door in an attempt to open it and do so, my soul smiles. She understands.

One of those moments not caught on camera happened today. I poured Oia a bowl of cheddar crackers as an afternoon snack and we carried the bowl into the living room. She (and the dog) finished the snack and the empty bowl remained on the coffee table. Some time had passed as the both of us were playing together in the living room. Oia wandered out of the living room and moments later I heard the dishwasher open. I dashed into the kitchen because she is not allowed to use the dishwasher lid as a step stool which she has done before. No step stool this time...she has pulled out the top rack of the dishwasher and I see her placing the empty snack bowl into it. I have to admit, my jaw probably dropped. She had an empty bowl, knew she was done with snack and knew where it needed to go. Perfect. She understands. Again, no picture to prove it but moments like this are forever etched in my memory.

I told Rob about Oia's mission to load her dirty snack bowl into the dishwasher during dinner this evening and with a look of surprise on his face, he says to me "No way, I don't even do that!"

Monday, February 1, 2010

Relinquish the Fork

Today was another appointment. We visited with Oia's Developmental Pediatrician which we do every 6 months for a wellness check up. These are smooth appointments and generally we are in and out. Today was no exception. Oia was weighed, measured and head circumference taken....the usual. I only remembered her weight was 25lbs. Oia has never been 'on the charts' since the day she was born so these are never numbers I hold onto or get anxious about. I've said before, as long as Oia is steadily growing along her own curve then I am more than happy with that. So, today was a bit of a shocker when Dr. K cheerfully said to me "She's on the charts!"

Uh? Really? So that's what those charts look like! She is in the 10th %tile for both height and weight but on is on.

Needless to say, I guess chasing Oia around the house with a spoon or fork full of something edible has finally paid off. Not only a fork full but a fork full of a 'bite too big' as my husband likes to inform me of. Or, maybe it's been all those after dinner Reese's cups that have done the trick...

So, it is confirmed safe by Dr. K to relinquish the fork and allow Oia to begin feeding herself on her own these days. She does self feed with utensils from time to time, a little everyday really, but truthfully, I felt a full belly was far more important at this stage than whether or not she could stab the toddler delicacies of mac-n-cheese and peaches. I've always felt better just knowing she was fed and full and that her little body was nourished enough so I have remained in control over the fork. Until now.

Let the real messes begin. I guess my new tool of the trade will have to be my mop.