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

Sunday, May 29, 2011

Good Things

No amount of stress or worry that lands in front of us can mask the good things that happen in this life ~ here are some of the latest happenings for which I am thankful for.

Good-bye Preschool, Hello Summer Break
Last August, I carried my 2 yr old into her first day of preschool - a special education preschool that is housed within a public elementary. I carried her because she was recovering from a serious ankle injury and was unable to walk. Talk about a nervous momma... she was tender, just days away from her 3rd birthday, and I had never experienced dropping her off anywhere with anyone. About 2 months into the school year, she was moved into a new classroom with a new teacher and it felt like the first day jitters all over again. But thankfully, as I came to know her teacher and class assistant, I was at ease leaving her in the hands of these two ladies and thankful for the change.

Last week, she celebrated the close of her first year in preschool. It's been a positive experience with little tweaking for next year. Preschool is just one year in the scheme of many school years yet to come but it's not to be underestimated. The transition from Early Intervention into Preschool was a big deal. Our girl has come a long way in a year's time. Socially, she's a butterfly, even without many words. She's made friends. Physically, she is stronger, braver, and more reliable. Academically, she is making great progress and loves the school environment. Emotionally, she is over the moon happy about everything. To say she has completed a full year of preschool makes me so proud of her growth, resilience, determination, and sense of independence. Keep up the good work, big girl!

New iPad
Oia now has her own iPad. (We used one on loan from her school earlier this winter.) We have been jumping in and out of hoops since January to get her one but with the help of a waiver and our wonderful pediatrician, Oia was finally granted one of these tiny miracles, complete with Proloquo2Go and TaptoTalk. Our hopes with the iPad is that Oia uses this as a learning device, not necessarily as her primary means of communication. We also hope to use this as an assessment tool; quizzing colors, numbers, letters, key words, etc. due to her limited expressive language. At this point, I vaguely know what she knows. Oia is so motivated by this and we're eager to see what she is able to show us with it.

Peace with Pregnancy
And lastly, I am thankfully nearing week 32 of this crazy ride called pregnancy. With good reason, I've spent every day thus far worrying about the baby I've yet to see and hold but one who already has a diagnosis. However, with the tiny dose of hope that was handed to us at our latest echo a week ago, I hesitantly say that I am somewhat able to relax now and enjoy what is such a limited and precious time in a woman's life. With each bump, kick, and hiccup felt from within comforts and assures me that our baby girl is growing strong and will be able to hold her own upon entering this world. I want her in my arms now but I'm trying to savor and enjoy the last weeks of what may very well be my last pregnancy.

Wednesday, May 25, 2011

Happiness is...

peeking around the corner to see this, which is Oia pretending to help her baby doll learn to walk.

Monday, May 23, 2011

The Littlest Teaster Update: Part III

To recap, here's Part I and Part II.

Before I begin, let me say that last week my high risk doctor arranged for us to meet with a doctor from the NICU. Our meeting with this doctor was intense as all possible scenarios with baby and her health were mapped out before us. All the this and that's that could happen were thrown out on the table. I couldn't believe my ears, the medical language was terrifying. We were talked through all possibilities, right down to the very worse case scenario, which was open heart surgery on our newborn. I literally understood about 5% of the conversation but was still scared out of my mind. Our meeting ended with a tour through the NICU which was an experience that I could have never prepared for. This could be us soon, I thought. All the more reason to be anxious for today's appointment in the hopes of having a more clear picture.

So today was our third fetal echo. I am currently 31w. The concerns for today's appointment (concerns noted from last echo one month ago) were as follows:
1. "flap" in right atria that should not be present
2. abnormal (meaning some reverse) blood flow, questionable as a result of said "flap"
3. questionable transposition of great vessels
4. mesocardia (heart located midline) and dextrocardia (heart malrotated, rotated backwards)

Here are the basics, as best and as simply as I can explain them, from today's scan:
1. The "flap" wasn't seen today. It appears to be absent and doctor said that doesn't mean it's necessarily gone but that it's entirely possible this piece of tissue has been absorbed into the body. To think that this potentially obstructive flap is gone, something that was once believed to warrant surgery for it's removal... well, I'm calling it a miracle.
2. Today's scan does not reveal any abnormalities of blood flow, meaning all blood enters and exits the heart just as it should and is supplying the body appropriately. Perhaps this is a good indicator that the flap really is in fact no longer present.
3. We do not have a case of Transposition of Great Vessels.
4. Mesocardia is still a definite diagnosis. This is not, however, a true diagnosis of Dextrocardia. Yes, the heart is rotated, enough so that it almost appears to be positioned backwards, but not completely.

Knowing what we know today, this is good news. Really good news. But, Rob and I refrain from celebrating as the rug as been pulled from underneath us too many times before. We still have 9 weeks left and as her heart continues to grow, it can also continue to change. With the information we have today, our doctor feels confident that no surgical intervention will be necessary. Baby will still be given an echo after delivery and we will still have a team of specialists waiting and ready to care for her once she makes her grand entrance.

I will not be seen for a fourth fetal echo. At this point, doctors have seen all they can possibly see. I am okay with this. We finally feel a bit of peace in this situation. It's not a typical scenario but one that seems manageable on many levels. Rob and I are aware that there are still some unknowns but we're confident that whatever is waiting for us around the corner is no more than we can handle.

Tuesday, May 17, 2011

Back to the Beach

With our minds focused on what is waiting for us just around the corner (Oia's surgery and new baby concerns), Rob and I decided to take advantage of one more weekend away. Rob had a board meeting yesterday in Virginia Beach so the three of us headed out of town Friday afternoon for an impromptu "vacation". Virginia Beach is barely a 3 hour drive - just enough distance to feel removed from the daily grind.

Oia checking out the view from our room moments after arriving; she kept saying "Woooooooowwwww" while attempting to jump up and down.

We drifted through the weekend with no plans in place. For us, it's the best way to unwind. Shortly after check-in, I was thumbing through a beach guide that I snagged from the hotel lobby and discovered Grommet Island, a 15,000 sq ft all accessible beach park and playground located on the beach.

I have no other experience in accessible playgrounds (because unfortunately they are far and few between) so therefor no scale to compare this one to, but it did have some impressive features. There were ramps onto wide structures, raised sand tables, a roll-on rocking ship, soft all-weather flooring, wood decking for easy access over sand, and beach wheelchairs just waiting for a spin along the shore. My heart was happy to be there, that this playground was there, for all the kids who deserve playing on a playground too. I thought of all the kiddos I follow on a regular basis and smiled as I imagined each one playing at GI one day.

The newest fan of Grommet Island

Another highlight of our weekend was taking Oia on her first outing to a zoo. I've wanted to take her since she was just a baby but there's always been a million reasons why we haven't gone yet. But wait no more, we spent our warm and sunny Sunday aimlessly strolling the Virginia Zoo in Norfolk. Oia was fighting a fever all day but remained tolerant and in the stroller for the most part. Not sure what animals she really saw from her stroller view or what was most interesting to her, although we pointed them all out to her as we saw them. I made sure to take close-up photos of all the animals we could see and soon I'll compile a picture book of zoo animals for us to enjoy together.

No trip to the zoo is complete until you've toured the grounds by train, which Oia loved...

And no trip to Va Beach is complete until you've rode a goofy, family-style bike along the boardwalk. Again, Oia loved this too... must be something about riding while unbuckled that makes her little adventurous heart sing. (I actually rode holding her in my lap while she pretended to steer the bike.)

This will more than likely be the last adventure our little family of three will take. Soon, we'll be a family of four. We savored every moment. Spending time with those you love the most is always good for the soul... throw a little sand in the mix with the sound of the ocean crashing around you and there's no reason to not smile. It was a lovely weekend, indeed.

Sunday, May 15, 2011

Blogger Did It

Those of you in Blogger know the recent shutdown that occurred. It caused a brief panic attack for me. Thankfully though, Blogger didn't eat any of my posts as it did to some others but it did eat some of my beloved comments from the last post titled Juggling Surgeries. I appreciate all comments but unfortunately, some I didn't get to open and some that were opened are now drifting in cyber space and nowhere to be seen again. Don't blame me, Blogger did it. Keep visiting and keep commenting...

Wednesday, May 11, 2011

Juggling Surgeries

** Warning: This post is winded and probably only of interest to our family so either grab a coffee or close out now.

I've tried to sit down at this computer several times in the last 24hrs to recap on a few things but my head won't stop spinning, so therefor the words just aren't coming out right. To say I'm walking around in a numb state of mind may be an accurate statement. The reality of having two kids, both with needs, is beginning to sink in and the juggling act has already begun even though the littlest Teaster isn't even here yet. I'm doing my best to stay strong, stay focused, but I cave and admit, it's overwhelming right now.

Between my frequent and rather lengthy high risk appointments and fetal echos, and Oia's therapies and appointments, the emotional load is heavy and my calendar is full. I'm still learning new medical lingo each day, all pertaining to my kiddos, but all I want to be is mom. Plain and simple. Just a pregnant mom. Not nurse, not doctor, not PT, OT or ST. Just a plain ol' mom.

I took Oia to PT yesterday for her regular Tuesday session. We were planned to begin the taping method on Oia's upper leg in hopes of relieving some tightness. Her tightness has always been a priority of ours but it's been at the very top of the list now for the last 8 months or so. It seems she is sprouting like a weed which is what any mom hopes for but growth doesn't play nicely with a kid who has CP or spastic muscles. Oia can not straighten her right leg without the force of an adult to do so and as one can imagine, this stretching is very uncomfortable for Oia and actually it is quite difficult for the adult to manipulate. We have been in a holding pattern consisting of noninvasive techniques (including Botox, serial casting, new bracing, and now a knee immobilizer for night time use), all until our ortho doctor feels like Oia is old enough and ready for lengthening surgery.

With that said, we did not tape Oia's leg yesterday. Since Oia had an appointment with her ortho doctor following the PT session, we felt like it would be best to hold off on taping since the tape may alter her "normal" walking pattern and then doctor wouldn't be able to see Oia's current level of range/movement/mobility with tape.

We drilled our doctor with questions and future possibilities. Should we try Botox in her hamstrings this time since we didn't inject them with the last round of Botox? Both legs or just the right? Should we consider a gait study from the gait lab for a specific reading of Oia's leg issues? Thoughts on a knee immobilizer for night time? When can we begin discussing lengthening surgery?

He shot the Botox idea down fairly quickly, stating that in his experience, Botox doesn't take well in the hamstrings. I'm sure some people will beg to differ but we follow his word. He shot down the gait study fairly quickly too, stating that Oia is still small and that there would be a lot of "noise" on her data - whatever that means. And then there was talk of surgery...

Rob and I are ready for this. We have mentally prepared ourselves for this long ago. We are very practical people who want results, results that will be of great benefit to Oia. This dappling with Botox, casting, and anything else we've tried, is essentially a crapshoot. It may help, it may not. They are methods just toying with time, methods that Oia has to endure. But, yesterday doctor was on board with surgery and ready to talk more about it with us. In fact, he was so on board with the whole idea that he even tossed out the possibility of doing this as early as NEXT WEEK. I was little shocked since he previously mentioned that he typically likes to do lengthening on kids near the age of 5 or older. Oia is barely 4. He says she's ready. He even bravely stated that if we do this surgery, this could very likely be the only surgery she'd ever need.

Here is where it gets overwhelming. I now have two kids to consider. One who needs surgery now to better her quality of life and one who will "more than likely" need surgery once she is born. That's two kids, two surgeries, all in a span of less than 2 months. In addition, I'm uncomfortably pregnant and Oia will be immobile for a short time during the recovery process. Do you see the picture? How do we juggle this now?

Our initial thought was to schedule Oia for surgery after we knew what the cards held for the littlest Teaster, meaning after she was born. But, I've said all along that I want NOTHING to stand in the way of what Oia needs and when she needs it and waiting on the arrival of baby would be doing just that - prolonging what Oia needs. At the same time, we know nothing regarding baby's medical needs and in worse case scenario, with surgery and recovery of a newborn who has congenital heart defects, the process of a complete recovery can take months. That pushes us to winter before Oia gets the surgery she needs.

Long, long story short, here is the plan. Get Oia's surgery (and recovery) over with before baby arrives, pregnant and all, I have to make this work. So, June 2nd it is. I'm recruiting help (and digging within for super-human powers) to care for Oia during this time because I can't possibly do it all by myself while being 8 months pregnant. Little Miss will get the surgery she needs, be casted for a subsequent 3 weeks and then learn to walk with new, hopefully less restricted legs. And if all goes well after it's all said and done, come late July she'll walk her tiny, proud, little self into the hospital and up to whatever room her little sister is in to hug on her momma and meet "her baby" for the very first time.

I just pray we're making the right decision - for all of us. For now though, we're off to a neurology appointment... this ride never stops.

Saturday, May 7, 2011

A Sweet Day

Tomorrow is never a guarantee so I feel very fortunate and blessed today to be a year older. And spending my day in a strawberry patch with a giddy little girl dripping in strawberry juice because she preferred to eat every ripe strawberry as opposed to just picking them was all the birthday gift I needed.

Oia navigated the strawberry rows well, though it was very difficult for her. The rows were narrow and uneven so Rob and I took turns holding her hand for most of the time but of course, she always had one hand free as she ate strawberries the entire time! Last year she couldn't get enough blueberries... I think strawberries may be the new favorite this year.

To make the day even sweeter, Oia's classmate/friend Natalie and her family joined us. Oia and Natalie were tickled to be together which warms this mommy's heart. They are two very special girls indeed.

After we piled our cartons full of strawberries, we relaxed with a picnic lunch topped off with desserts, all of the strawberry variety of course, then it was off to our favorite local arts and crafts festival. The girls rode a train, played on the playground, made their own doll magnets, and the grown-ups were still able to manage a little shopping. It was just a beautiful spring day with great company - another day to be thankful for. Life is sweet and 34 feels good.

Thursday, May 5, 2011


So, a while back I mentioned that Oia was a "model" for Allard, the company that makes KiddieGAIT braces. As part of the evening, Oia was able to demo the new brace while a room full of therapists and other related specialists watched her perform/walk while wearing it. The goal for Rob and I in this event was to see if this style of brace would be more beneficial to her than her previous pairs; all made by Cascade, which we knew were not the best braces for her. Cascades, for Oia, seemed to limit movement as opposed to facilitate it.

Pictured is the KiddieGAIT shown with an SMO insert, all inserted into Oia's shoe as shown:

It's been roughly a month now since wearing this KiddieGAIT and after much analyzing and discussing, the consensus is that this brace isn't has miraculous as we hoped it would be but it is still the better option of the two.

Here are the two main issues we are facing:

~ Toe walking. Oia has always walked high on her right toes. Left foot has the range and tone to remain flat but in order to make life easier for herself, Oia has begun raising to her left toes in recent months to level the playing field, so to speak. Image walking on just the tippy-toes of one foot... smart girl has figured to just walk high on both feet. She lowers her left foot to flat while stationary but resumes on all toes again in motion. Left leg and hip bears the majority of her weight, if not all, while standing.

~ Hamstring tightness and knee flexion, right side. Regardless of the brace, either Cascade or KiddieGAIT, Oia's ankles are always correctly positioned at 90 degrees. The problem is her inability to straighten her right knee due to very tight upper leg muscles. We have always been so focused on the muscles below the knee more than the muscles above the knee and the KiddieGAIT's make this upper leg issue more evident. I guess we chalk this up to a positive as it is quite clear where to shift our focus now.

By comparison, the KiddieGAIT functions similarly on Oia as the Cascades did. No obvious changes have been noted other than the fact that it does seem to allow Oia a more symmetrical gait, or equal strides. It is a more open brace which doesn't cause her foot to sweat as much and what is even more important to me is the fact that this new brace is obviously more comfortable to Oia. At the end of the day, her right foot is not swollen and purple-ish which is a true indicator that her foot is not fighting the restrictions that the plastic Cascades posed on her foot.

So for now, we will remain wearing the KiddieGAIT. Oia has an appointment with her ortho doctor next week which can't come soon enough. We have our plates full of questions regarding another potential round of Botox, this time in her right hamstring and the biggest of all questions - lengthening surgery. We know this is coming sooner than later and frankly, we're ready to do it as soon as possible. We have tried serial casting, Botox, experimented with bracing, and next week we will even be dappling with the taping method so stay tuned for that adventure. There is not much else left to ease the tightness aside from surgical intervention. Hard to believe that after almost 4 years, that's where we are already.