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

Thursday, September 23, 2010

Potty Talk

Parenting is a day by day experience and I find myself just learning the ropes one day at a time. Crossing each bridge as we get to it and moving on to the next; that's just how we do things around here. So, the bridge that is currently stretched out in front of us is one that I'm not thrilled about crossing, mainly because I have NO. CLUE. how to.

Potty Training.

It's been on my mind for a long time now. I just bought Oia size 6 diapers today for the first time since the 5's are getting a little small. As best as I can tell, 6 is the biggest size stores sell, unless you special order these things. That made me panic a little; I felt the pressure to push the issue and really begin tackling this process. I have mentioned in previous posts that Little Miss has in fact christened her mini throne and not once but three times, by the way. However, these pee-pee's on the potty have turned into once in a blue moon ordeals. She knows where the potty is, what it is used for, and she even knows how to flush one all by herself. She thinks it's great fun. She loves to have her own square of toilet paper and she shows me she knows just how to use it.... problem is she doesn't GO while on the pot. Most days, I set her on the pot after she wakes in the morning and after naps which one would think are likely times to pee but Oia doesn't. Sometimes she may even refuse to sit down at all, arching her back and stiffening her whole body. I don't force it. But what in the world does one do??

I talked to Oia's developmental pediatrician about how to potty-train a kiddo with CP. I questioned whether Oia 'feels' the urge or sensation that signals one to use the bathroom. Afterall, this is a muscle related issue and what does CP affect? The muscles. Doctor said this may be an issue but Oia, as any kid typical or not, has to 'learn' these urges and how to control them, it's just something that will take more time for us.

Diapers these days are so technical and wick away any moisture so quickly that kids don't even feel wet. Oia has yet to be bothered by a wet or soiled diaper (which is a sign that one is ready for toilet-training) so I thought perhaps a pair of wet undies may get her attention and alert her to what she just did. So, that was my experiment this evening. I put Oia in a pair of teeny undies for the first time, no diaper, to see how she'd react once she pee'd in them. Mind you, I kept asking her if she wanted to go sit on the potty and go pee pee and she'd say yeah but then once we'd get to the bathroom door she'd say no and smile. Somehow, she's turned this into a game.

Well, after about an hour of wearing her undies, she pee'd. And then laughed HYSTERICALLY as her pee ran down her legs and splashed into a puddle on the floor below her. Massive amount of pee, all over. And who wanted to proceed and carry on about her evening after she just pee'd all over herself; as if nothing just happened? I'll give you one guess.

I'm not convinced she's ready. But maybe she is. Rob says she is but let me mention he's the one who frantically hollered upstairs for me to come down and take care of our daughter after she just soaked herself and the floor. He hates messes and wanted no part of it. Umph. PT says don't force it until Oia and I are both ready, otherwise we'll both just end up frustrated. I just don't know. Quite frankly, I don't mind having a toddler in diapers. I still find myself focusing on physical gains and Lord knows getting her to wear an eyepatch for a total of two hours a day is enough of a chore; potty training aside. It just hasn't made it's way to the top of my priority list yet. Bad Mommy, I guess. What in the world do I do? How in the heck do we cross this bridge? I'm just not sure.

Pictures of Oia were taken today while she was checkin' herself out in her first pair of undies.

Saturday, September 18, 2010

Back in the Saddle

Hippotherapy just resumed from summer break which was during the month of August. So today, we ventured our beautiful 45 minute drive outside of town, for Oia's 30 minutes of therapy time, priced at just over a dollar every minute on horse back, then traveled another 45 minutes back home... and it's worth every minute and penny spent because this girl absolutely loves it (and so do we).

I told Oia last night while I was lying her down in her bed for night-night that once she woke in the morning we were going to see Ms. B, ride Kasper and go "bouncy-bouncy"; which means trot really fast. She smiled a smile that extended way beyond her binki and said Yeah! with wide eyes.

Today's session was spent 'off-road' as Oia rode Kasper out of the barn and down into the woods for a taste of her first trail riding experience. Along the trail were hidden friends which made the ride more interactive. Here is just one of the few friends we stumbled upon along the way...

The unpredictable terrain created more of a challenge for Oia to remain upright and centered on the horse; slopes, uphill, downhill, bumps, logs/water to cross over, and sharper turns. BUT, she rode like a pro.

Like I said... worth every stinkin' penny!

Tuesday, September 14, 2010

High on Preschool

I knew Oia would be a bit hesitant with the transition into Preschool. Despite being a social girl, she is still very much a girl who appreciates the company of mommy and/or daddy at all times and we can't blame her. She depends on us for many things; things that are beyond her control. In addition, we sent her during a time of immobility and shaken confidence as a result of her ankle injury. And so it was no surprise that after a couple of clingy and tearful mornings in the first two weeks, my predictions were proven correct. Red face, bottom lip, tears...hard on the both of us. The rocky start led to Oia's teacher suggesting that Oia come an additional day (3 full mornings instead of 2) to help Oia get comfortable with the change and the suggestion has made all the difference; and almost immediately.

Now, as far as I can tell, this girl loves Preschool!

How do I know this about a girl who can not fully communicate with me? Well, she's beaming with an ear to ear smile when I pick her up; not a washed look of relief on her face as in the tearful beginning. At one pick-up, she motioned and reached back for the classroom once we exited and made our way into the hall to leave the building which translates to "I'm not ready to leave yet." She toddles out of the school on her own two feet, carrying her own backpack, proudly saying "bye-bye" to all she passes; not clingy to my neck and being carried out of the building while saying a pathetic "Go, Mommy, Go" as she once did. She jabbers up a storm on the way home as if to tell me all about her morning; while I drive, listen and wished to hell that I knew what she was tell me but still thankful to "hear" all about it. She gets home, one day refusing to take off her backpack and appears to be high on Preschool as she aimlessly 'runs' the length of our house, laughing at herself and playing like tomorrow may never come. Our fridge is filling fast of Oia's Preschool masterpieces that she proudly shows to daddy once he makes his way in the door from a long day at work. Oia's actions are her words and I hear them loud and clear because on school days, she is as happy as I have ever seen her.

And I hope this never changes...

Ortho Update

Oia's right foot was measured for a compression sock about two weeks ago. The world's-most-expensive-not-covered-by-insurance sock should be ready for us any day. And no, it doesn't come in pink. The sock should alleviate the constant edema she experiences in her right foot and will be worn under her AFO. For as long as we can remember, since early infant days, edema has been a part of our story but hopefully the sock will zap the problem.

Also, we returned today to the same practice that fitted Oia for her sock to seek other options for a better, more functional right AFO. Previous braces have come from elsewhere (KCRC) and our experience with this ortho department has, for the most part, been easy. No complaints. But, like anything else we deal with, we are constantly asking ourselves if the brace we currently have is the best option for Oia thus giving her optimal potential for mobility. Her gait is always a work in progress and constantly changing and we have to make sure that Oia is getting the most out of her current orthotic, which for starters, we know is too small right now. Below are the soles of Oia's shoes; the only pair she wears with AFO. Notice the extreme wear on the inner right sole (which is the shoe pictured on the left). Oia leads with her dominant (left) leg and her weaker (right) leg has minimal dorsiflexion which causes a slight drag of her right foot. The shoes tell all...

Today's new perspective and second opinion on a revised AFO was found beneficial and a refreshing twist on what we current have for her. So, Little Miss was casted today for the new brace and she will be getting a better insole support for her left foot as well. Hopeful that the new brace, in connection with PT exercises, will support her foot better and allow more toe clearance/less drag and better leg/hip alignment. Tall order, I know, but worth aiming for.

Hope to have the new brace by the end of Sept, early October.

Thursday, September 9, 2010


"There is no chance, no destiny, no fate, that can hinder or control the firm resolve of a determined soul." ~ Ella Wheeler Wilcox

Thursday, September 2, 2010

If The Shoe Fits

I have to give credit to Katy at Bird on the Street for inspiring this post. It pains me to know that others go through the emotional chore of finding shoes for their kiddo in AFO's. For many, looking for these shoes can be a daunting task. I have stood in the middle of a shoe store before, admittedly crying, surrounded by boxes of shoes that just didn't work. It probably didn't help that the particular store was swarming with bounding toddlers who were picking out glitzy sandals and sassy flip flops while I was forced to select from a minimal and rather crappy choice of extra wide, not so cute, bulky, tennis shoes. I've toughen up to the process over the years because I've learned the requirements and tricks of the trade that make a good fit, for us at least. So I've come here to share a few pointers:

1. For starters, we always pick-up and feel a shoe. It must be lightweight and flexible or it's an immediate no-go. And yes, some toddler shoes are just plain too heavy.

2. We always look for a shoe that has a low toe, meaning the less the shoe covers the top of the foot, the better. Since we're buying girly shoes, this is fairly easy for us to find. This one of Oia's shoes and it is an example of what we call a low toe:

3. Another requirement of ours, so far, has been velcro straps. They're practical, quick, and easily adjustable. However, the one obstacle to some straps is that once the shoe is on over the AFO, the straps become too short to wrap over the top of the foot to fully fasten. We always take our shoes to a local shoe repair/alteration shop who beautifully lengthen the straps to make them work. Or, a handy neighbor with a sewing machine can do the trick too. We have had several pairs of Oia's shoes altered this way. This is her current pair with straps lengthened on the right shoe to fit over her AFO:

4. We all know the rip-out-the-insole-of-tennis shoe trick, but do not be afraid to cut out the tongue of a tennis shoe either. We did this to a pair of tennies that Oia wore a year or so ago and it made no difference in the function of the shoe but it did eliminate the bulk thus making for a better fit. Here is that shoe, you'd never know they originally had a tongue:

5. And when the sky parts and the angels sing because you have finally find the perfect fit, do yourself a favor and buy the same shoe in a couple different sizes larger so that perhaps you can save yourself from going through the same search later. I was given this advice some time ago (Thanks, Amy!) and it's been well worth it. The first shoe pictured above is the style of shoe that Oia wore last summer which worked perfectly. We purchased the same style two sizes larger and it will (hopefully) be her shoe for next summer.

6. Spending a lot of money on a pair of shoes is not my idea of fun, not even for myself. However, finding a functional and attractive shoe that fits is priceless in my book, regardless of what the price tag says. We find that Stride Rite shoes are easiest to accommodate, always have wide and extra wide, is the most durable, and I can always find what I need there. Plus, they have never denied me a return or exchange, even months after the purchase and they are always willing to work with me. This is very helpful, particularly when trying #5.

We all learn as we go, just like anything else we do as parents but knowing the above has been beneficial to us. Here's to happy, rather happier, times at the shoe store.

Wednesday, September 1, 2010

Happiness is...

when you take your little girl to preschool, help her to her table, watch as she tries to pull out her own chair, then look up at you before sitting down to smile bravely and say "bye-bye".

Bye-Bye, Sweetheart. Have a great day.