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

Friday, January 28, 2011

The House Helper

Children are sponges. Most are observant learners who love to mimic adult behaviors. In this house, there are always two little eyes recording my every move. Oia can't always repeat what I say but she certainly can repeat my actions. She feels the need to be my constant shadow. Rob calls her "Mini-Mo". She follows, watches, and helps me with whatever I'm doing. Helping is truly what makes her most happy. Although this leaves me with little to no break in my day, I know she is learning just by being with me. I know this because she....

wears my oven mitt when baking in her kitchen.

wipes up her own messes.

carries her folded clothes to her dresser.

puts away dishes.

even puts dishes in the sink.

disciplines the dog, even when he's not doing anything wrong.

sweeps and vacuums.

The other day while I was doing dishes, I turned to look behind me and noticed a couple of things. 1) Oia's cup was sideways on the floor, 2) juice was spilled on the rug and 3) Oia who had retrieved her (broken) Dyson to vacuum up the spill.

I love it. We never take for granted that she is able to comprehend a situation, associate a spill with a device that is used for cleaning, and then have the physical capabilities to do such a "chore', all on her own will. While witnessing many of Oia's behaviors and movements, Rob and I still look to one another and say... "Did you ever imagine her doing this?" We know each others answer. We just shake our heads and smile.

And I'll say it again - we never take these developmentally appropriate behaviors for granted. Ever.

Wednesday, January 19, 2011

She Kissed Me

Our bedtime routine is... well, it's just that, routine and predictable. Rob bathes Oia, stretches her, puts her jammies on, and then we cuddle on the couch for a few swigs of milk, then she gives Rob a hug and signs "I love you". From there, I carry her upstairs to her room while we (okay, I) say aloud "Thank you, Lord, for another wonderful day" as our evening prayer together and then I steal the last of the days kisses before placing her in her bed. Moments later, she's dreaming. It's as easy as that.

Last night was slightly different. Once I walked into Oia's room, while carrying her in my arms, I was taken back by two skinny arms that wrapped around my neck and two little lips pressed tightly against my cheek. Heart, be still. This was my very first kiss from Oia.

Let me rephrase that. My very first kiss from Oia that I didn't have to ask for.

Oia can show affection by hugging and kissing and signing "I love you". How lucky we are. But, she has yet to show affection towards anyone without being asked or prompted to do so. Is the lack of voluntarily showing affection a part of being developmentally delayed? I don't know.

All I do know is that if you ask Oia, can I have a kiss?, you'll get the best sloppy kiss ever, maybe even a couple of them.

Say Oia, give me a hug! and you'll get the tightest but sweetest hug ever, with two arms, not just one.

I'll say Oia, time to go to bed now... what would you like to tell Daddy? and she'll instantly cross her arms over her chest which is our sign for "I love you".

It's affection no matter how you slice it. Her hugs and kisses and I love you's mean more to us than anything. But, the kiss that came out of nowhere because she chose to kiss her mommy, not because I asked her to, put a dose of per joy in my heart once again. Oh, it felt so good. I never even realized how I longed for such a thing until it was over.

And truth be told, last night was one of the best nights of sleep I've had in a long time.

Those Blue Eyes

Yesterday was a full day. We started off the day with an awesome hour of PT and then returned home to pick up Rob for our venture to northern Va. It was Oia's 6 month follow-up eye appointment with Dr. P, but a little later than 6 months because our recent Botox appointment bumped this eye exam to the back burner.

Anyhow, our concern this visit (and there's always a concern) was the new inward turning of her left eye. Let me remind you that almost one year ago, Oia had surgery on her right eye for the same reason. Left eye one year ago was straight and dominant and Oia preferred to use only the left eye. Her brain was beginning to ignore messages from her right eye because left eye was so dominant, thus making right eye drift inward. We were told around that time that her right eye had very little visual function and that surgery was more for cosmetic reasons than for function. However, Rob and I tried to take that info with a grain of salt because we believed Oia could see out of her right eye better than any eye exam could show. So, after surgery we tackled patching and Atropine drops all in a desperate effort to wake up or save whatever little visual function remained in her right eye.

And thank God we did.

Now, the fact that her left eye, the eye she has always relied on, is intermittently turning inward means that Oia's RIGHT eye is working, seeing, and doing, thus meaning that she is no longer reliant on only one eye. Dr. P said it can be very alarming to parents when the strong eye begins to suddenly change and drift inward from time to time, but this to an ophthalmologist is a good sign. It's a sign of a weak eye growing strong enough to pull the other eye in. A year later, she is using and seeing from BOTH eyes! Amen.

Oia can use both eyes together, as a pair. Just not all the time. The crossing is slight. It is inconsistent. But, it is happening and right now we're kind of happy about it. Sure, in a perfect world, we want those blue eyes of hers to see as a pair, to move together all the time. Heck, in a perfect world, my baby would have never had to get glasses in the first place. But, 3 years later, Oia's eyes are working as best as they can. Her prescription is steady with no change, another good thing. Just as we have to help her body understand how to use her muscles to move appropriately, we too have to do the same with her eye muscles. It's just one of those CP things.

And so, we continue the use of Atropine and patching. For how long.... we'll just take it one day at a time. That seems to be working so far and we are so very thankful. Thankful for two tiny blue eyes that allow our girl to see this crazy, yet beautiful world we live in.

Friday, January 14, 2011

Update Hodge Podge

So, the word is out. This family is indeed growing. I'm nearing week 13 with a due date set for July 26th. This pregnancy has proven to be wildly different than my pregnancy with Oia. It's been physically and emotionally challenging but I'm able to manage one day at a time with the support of one patient husband and an extra push from a little girl who keeps her mommy moving.

It's been a little over a month since Oia's first round of Botox injections to her right calf. Immediate results. Positive results. Trouble is the results were optimal for only about 3 weeks, foot almost flat and calf relaxed and easy to stretch. Ankle could be effortlessly stretched to neutral, or 90 degrees. It was 3 weeks of a good thing then with each passing day after that, Oia grew tighter and tighter until she ended up back to her pre-Botox level. Actually, the jury is still out if she is even tighter than pre-Botox. She is growing and bearing the majority of her weight on her left side which only invites tightness, therefor short calf muscles, and all sorts of asymmetrical issues. Oia hasn't even had her follow-up appointment with her doctor yet, who now won't even see what gains she did receive during the optimal 3 week period. I'm a little frustrated by the short lived results. It was a bit of a tease. We'll see what her doctor suggests at her next visit at the end of this month. I'm pretty open to hearing what options we have at this point (night splints, surgery, etc) but I'm pretty much set on not repeating Botox at this time. There are still too many unknowns in the world of Botox for my mommy heart to rest easy and for what.... just 3 weeks of a good stretch? Much to consider.

I recently had a meeting with Oia's preschool speech therapist. As you know, Oia's language delay is significant. Current assessments show Oia's expressive language skills are approximately at the 20 month level, vocabulary of less than 50 words. Her ST also bounced the term Apraxia my way as something to think about. Clearly, Oia has enough stacked against her making language so difficult. For the longest time though, Rob and I have felt like Oia was "right there" and at any moment great words were on their way out of her sweet little mouth, which is why we've drug our feet on getting her any form of assistive technology. I feared AT would be a crutch. EI therapists had given her picture cards but the girl was so uninterested in them and frankly I thought they were a joke too. I realize these work for many people and have for many years but at the time, they were not right for us. Rob and I have had many discussions about getting her an iPad and thankfully, her ST has located one for us to use as a loaner. It will have several apps to explore and I have hope that this will be an outlet for Oia and a great way to help facilitate more verbal language. In a perfect world, we should be getting the loaner next week. Oia will be beside herself to have a computer that she is actually allowed to play on. My laptop is generally off limits and it kills her.

Tuesday we head to northern VA for another ophthamology appointment. This appointment is just the usual 6 month check-up but Rob and I have question as to whether or not Oia's left eye is beginning to cross, or look inward, more than usual. It's always been the straight eye. Could it be that it's time for left eye to have surgery now? (sigh) We shall see.

Saturday, January 8, 2011

Happiness is...

knowing that you're...

about to be...


Friday, January 7, 2011

The Dentist

My little "big" girl had her first dental appointment today. I was a bit apprehensive going into the appointment because 1) Oia hates to lay down at doctor's appointments and 2) she hates when doctors and nurses touch or mess with her head. Hates translates to a red face and a sad, pouty, bottom lip, verge of tears.

With some sweet talk and a little encouragement, she bravely reclined back into the chair. She opened her mouth when she was asked to and allowed the dentist to take a look around her mouth with his mirror. So far, so good. He brushed her teeth and then applied a vitamin solution. Again, so far, so good. Then came the spit sucker and from there it was downhill. And I can't blame her.... dentist gave no warning that he was about to use such a thing. The noise and the surprise and even the feel of the sucker was just enough to FREAK her out. At that point, she was crying and fighting to get up and get the heck outta there.

First dental appointment over. Teeth look good. No cavities. No worries of malocclusion and no more spit sucker for another 6 months.

Thursday, January 6, 2011

CME Payoff

Oia has been practicing CME for almost a year and a half. For us, it's made all the difference. It works for us. A big focus as always been learning to balance and shift weight, and control only the muscles required to step up and down a small step WITHOUT support or assistance. There are moments when Oia steps over a toy, or the rarer moments when she masters a step up or down without a handhold or handrail and I exclaim to all who will listen, "She's been practicing that in CME!" To see her do something in the 'real world' that we have practiced over and over and over again in therapy is.... well, nothing really quite describes it.

One of those glorious moments happened during our recent visit to my parents house. Below is one of the step obstacles that Oia practices each session. This specific obstacle isn't set up with CME equipment but the methodology is basically the same. Note she leads (steps up) with her weaker leg so that she lands (steps down) on her stronger leg.

And now for the payoff... and FYI, this is one month post Botox and sans AFO.

How awesome is THAT?!

Holiday Review '10

Happy New Year, everyone! Long time, no blog, but I'm back...

We woke Christmas morning from our own beds, in our own quiet house, and sat in front of our own tree to unwrap a few of our own presents. Previous years, we traveled to Ohio to spend Christmas Day but this year we opted to be at home, just the three of us, and it was lovely.

Plans were made to travel to Ohio the day after Christmas but with the predicted "winter weather" headed this way late Christmas Day, we chose to leave ahead of the storm later Christmas afternoon. Last year's traveling nightmare is still fresh on our minds and there was no way we would chance a repeat version of those hellish 30 hours. We made a smart choice to leave early, we saw not one snowflake all the way.

First leg of the trip was spent with Rob's family, just north of the Cincinnati area. Oia had a grand time with her Mamaw (Rob's mother), not to mention the extra special attention from her cousins Callie and Colton. Oia also spent some time with aunts, uncles, and our long time friends, The Tack family, who were in the area from Wisconsin. Good times.

Oia snuggles with Mamaw and cousin Colton

Oia with Mamaw and cousins Callie and Colton

Next and last leg of the trip was to my family's neck of the woods, about 2 more hours north. There, we stayed with my parents and visited with lots of extended family; aunts, uncles, cousins, and my grandmother who Oia refers to as GG. Visits with her are always a highlight of our stay. Rob spend many hours of quality time helping my dad in his workshop. The two were busy building a dresser. On New Years Day, we celebrated with my Uncle Paul as he wed his love at precisely 1:11 in the afternoon.

Oia and cousin Dani enjoying a cheesy snack

Oia with her Grandma (my mother), aka NeNe, trying out her new raincoat and matching umbrella

GG lets Oia play with her wallet, one of Oia's favorite things to do

These are all memories to treasure, especially since visits like this happen maybe twice a year. We finally returned late Monday night. Back to my beloved routine.