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

Thursday, July 21, 2011

Meet the Littlest Teaster



Our tiny, pink, and HEALTHY Esme' Anne was born on Wednesday, July 20th at 933am. (pronounced Es-may)
6 lbs 11 oz
19 1/2 in

More details and pictures to come once we return home.

Tuesday, July 19, 2011

Appointments, Camp, and Baby

Oia had two extra appointments last week in addition to her regular therapy schedule. The week was packed but now we can check the dentist and ophthalmologist off the list for a while. First up was the dentist. Her last visit to the dentist was fairly successful, meaning she didn't get too scared and she didn't really cry that much - aside from the scary "spit sucker". That was 6 months ago. Last weeks appointment was a whole different story. Maybe we can chalk it up to progress and a more knowledgeable girl these days but she was not in favor of any part of the dental exam whatsoever. She cried nearly the entire cleaning and exam and at one point I ended up in the chair to hold her in hopes of wrapping up the appointment tear-free. The whole experience felt like torture for both of us. Who really likes the dentist anyways?

The report is that Oia's teeth are clean and doing just fine. She does, however, have a molar with a significant ridge due to what the dentist believes is an enamel defect. The ridge will be a problem sooner than later as it is already trapping food and will need to be worked on but for now I have convinced the procedure-hungry dentist to just keep an eye on it and we'll cross this bridge when it's of an obvious bother to Oia. The procedure to eliminate the defect would require a slight sedative and more screaming and tears will ensue. I'm not up for it. Our girl needs a break.

Later in the week, we headed to northern VA for Oia's ophthalmology appointment. They tried to take pictures/measurements of Oia's eyes (again) but no such luck. Only if your 3 year old can remain as still as a statue, not blink, and stare at one tiny hole positioned just in front of her nose for several seconds is this task even possible. Following that, an eye tech flashed an image of a birthday cake on the wall in front of Oia and asked her what it was. Again, another fail. Not the best approach for a girl who struggles to communicate. I told the tech that Oia can't speak what she sees but that asking her a yes or no question would be more reliable. However, in this case, it wasn't. The black and white birthday cake on the wall was far less interesting than all the eye gadgets and fancy machinery in the room so she was too busy pointing around and asking "whass tha?" One day she'll nail those darn eye exams.

Dr. P said all seemed as it should. Eyes are doing as he expected and her cataracts haven't changed in size. Her eyes still will cross from time to time without glasses and Dr. P assured us this will probably always be the case. Her eyes are healthy, but the muscles that control them just have a mind of their own. As long as the crossing is minimal or nonexistent with glasses then we are in good shape. We must continue to patch via Atropine drops 2x/wk to continue to strengthen the right eye. We would use adhesive patches but at this stage of the game, Little Miss will not stand for it. So drops it is.

In 6 months we return to both doctors for another check-up.

And in other news, this morning is Oia's last day of Speech Camp. Camp was held for three consecutive Tuesday's this month for 2 1/2 hours each day. My goal for this camp was to provide Oia with some adult structure (without me) that mimicked the school environment while getting to play with a therapeutic purpose. I found this camp offering in our area via a local publication and the ratio of campers to therapists was 6:2. That fact alone sold me. I called to make sure that the therapists were comfortable dealing with children who had mobility issues before registering and thankfully they were. Each session is themed based and the campers get to participate in making their own snack and lunch. It's been a wonderful and fulfilling experience for Oia. She loves getting her speech bag ready for camp each Tuesday and happily waves bye-bye as we leave her at drop off. It's pretty neat to see her so happy and willing in a new environment. And as it turns out, the therapist in charge of the camp has Apraxic training. It's a win-win all the way around.

And the littlest Teaster is coming sooner than later... I hope. We are so ready. I have had a long night of mild contractions but seems they have stopped for now. Who knows - this could carry on for days. Though I have experienced irregular contractions off and on for the last couple of weeks now, this activity is getting more and more frequent and a little more intense. My due date is just 7 days away so we have to just continue to wait this out. I have a check-up scheduled for Thursday so we shall see what's going on then. Stand by.

Friday, July 15, 2011

Happiness is...


found in the last few snuggles as a family of three, while we anxiously wait to become a family of four.

Monday, July 11, 2011

Just 4 Words

One afternoon last week, Oia was perched on my legs facing my enormous belly. She loves to rub it, pat it, kiss it and feed it (yes, she tries to offer her sister snacks already, chips and blueberries to be exact). I asked Oia what she would say to the baby when she sees her and she replied by waving to my stomach and said "Hey, Baby!"

I then asked Oia if she was ready to see the baby and she of course, said yes. Then, I asked Oia to try and say "I want to see you baby" and she clearly and effortlessly said in response "I wanna see baby!" Rob, who was in an adjoining room, heard her and we both began cheering and clapping like crazies at a Super Bowl game. Hearing Oia speak her first ever, 4 word sentence is certainly a victory worth celebrating. I repeated the sentence again and so did she, with ease. She squealed with delight and pride as her parents acted like fools. It's a tiny break through, no doubt. We are chippin' away at the Apraxic monster, slowly and one drop at a time.


Photo of our lil' talker from today's hippotherapy session.

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.