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

Monday, April 25, 2011

The Littlest Teaster Update: Part II

Okay, a month has passed since our last ultrasound and fetal echo. To recap, go here.

Since that time, I have literally counted down the days until our next appointment, which was today. I woke feeling excited, relieved that perhaps our time in limbo land was over as answers may surface with today's echo and ultrasound, but soon the excitement just turned to nerves and stress. I was not naive to the fact that any news at all, good or bad, could be delivered to us during either appointment.

I'll keep this brief and explain as best as I can, though I am still trying to educate and understand myself. My heart and mind are still trying to grab ahold of all the unknowns and new medical lingo that have all too quickly become a part of our youngest daughter.

Things we knew going into today, found at 22w:
~Baby has congenital heart defects, namely Mesocardia (heart positioned midline as opposed to left side) and Dextrocardia (heart rotated backwards).

~Despite the location and position of baby's heart, we (meaning docs, Rob and I) understood that baby's heart functioned properly with all appropriate valves, chambers, atriums, etc. and with proper blood flow tracts.

Things we learned today, 26w 6d:
~Mesocardia and Dextrocardia are still the case; they don't miraculously correct themselves, and Transposition of Great Vessels (which I am still trying to understand).

~Located in one of the atria is a "flap", or piece of tissue, that should not be present. It does not create a full block as there is blood flow past it. However, it remains to be seen until after delivery is this flap should be obstructive to blood flow once baby begins life outside of the womb. If it is obstructive, our baby's breathing will likely be challenged shortly after delivery and in that case, surgery will be necessary to remove the flap.

~There is a question of abnormal blood flow through one of the right atria. Does the flap mentioned above create this reverse flow of blood? That's to be determined... doctor isn't sure.

~Baby is very active and measuring beautifully. In fact, baby is measuring just about 4 days ahead of gestational age. She currently weighs 2lbs 6oz and all other organs are developed and performing as they should be. This is a good sign.

With all of this said, there are still many unknowns. Our doctor today said that of all the scans she has experienced, ours ranks within her top 5% of the hardest to read. The echo scan lasted well over an hour again today and at which point they just stop for the ease of the patient. We will be seen again in 4 more weeks to continue following the growth and heart functions. With each passing month, more of the picture will come into focus which will allow for the doctors to develop a safe delivery plan with the appropriate staff on call to accommodate our baby's immediate needs. In other words, we continue to live in limbo land until this baby makes her way into the world. Until doctors can do a complete physical assessment and echo after delivery, we will not know all the details, nor are doctors willing to speculate or guess at this time. A lot can present itself in this last trimester as baby gets bigger, holds still for longer (which makes for easier scanning) and as the heart grows.

So, here we remain - as residents in limbo land. We are just trying to find the optimism hidden among the sea of unknowns. The only things we know for sure is that life here in limbo land stinks, July seems so far away, and our love for this baby runs deep already, regardless. This is all out of our control - we have no choice but to patiently wait right here.

Saturday, April 16, 2011

Breaking through Speech

Breaking a stone with drops of water is possible if one has the time and patience to do it. However, if given the task I'd feel defeated before I even got started, not to mention that it can't possibly be the most exciting thing on earth to tackle. That's kind of how I would describe speech therapy so I can only begin to image how Oia must feel. Above all, she is working so very hard in Speech that it makes me weepy with pride yet it's almost painful to helplessly watch each session. I observe each one and find myself moving my own mouth as if in some crazy way to make it easier for Oia to move hers. Currently, we are using pictures to help facilitate the vocalization of sentence structure.

Sentences primarily are
1. "I want _____." and
2. "The _____ is ______."

First video captures Oia producing the /d/ sound to attempt the word duck (which is a first) and she also signs sleeping and dog.

Oia has been receptive to words that begin with an /h/ so each session focuses on a few of these words. Good things of this video are Oia's attempt to say hammer and eggs, the signing of more (tap of fists), and voluntarily speaking open and help me. And on the OT front, she is using two hands to open her egg...

An hour session just about puts Oia over the edge but our ST is very understanding. There are some movement activities planned which aids in maintaining Oia's attention span but it still requires both ST and myself to keep little Miss interested. Despite how challenging this is for Oia, she still works pretty darn hard and we WILL break through this barrier, slowly, one drop at a time.

Thursday, April 14, 2011

All From Today's Comment Box

One day I remain hopeful that I will appropriately handle all comments and questions that strangers bounce my way regarding Oia. Just when I think my skin has thickened, I learn that I still have a ways to go. Some days the questions and comments bother me, other days they don't. I suppose it all boils down to the delivery of the question and of course my mood or attitude at the time. Even the seemingly small inquires sting a little simply because they involve the very innocent and naive being that I live my life for and they serve as tiny reminders that we are just a tad bit different than the rest.

Girl: Why are her eyes so kooky?
Oia: (smiling and oblivious to the question and the choice of word "kooky"; reaches out to hold Girl's hand)
Me: Well, I think her eyes are fine. She just has to wear glasses to help her see better.
Girl: Can she really see?
Me: Of course she can. Do you know of anyone in your family who has to wear glasses to help them see better?
Girl: (in deep thought, eyes staring up as she thinks for a minute)
Me: You know, maybe your mom or dad, or grandma or grandpa?
Girl: Um, well, my mom and dad don't wear glasses but I think my grandpa does.
Me: Well, there you go! Oia is just like your grandpa then!
Girl: (satisfied with my answer, smiles and skips away)

Another girl later in the day runs waving by Oia and I. I smile, wave back, and say "hi". After she passes us, she has what seems to be a second thought, then turns around to inform me that "She's drooling" as she points to Oia. I assured her it was okay and that I knew of it and then mentioned to the girl that sometimes that happens. She, too, was satisfied with my answer and continued bounding about.

These are harmless incidents, all coming from very innocent places within these children. I begin to feel the sting, though, when I think about the day that Oia will not only hear these words but understand them too. What will the day be like when I'm not there, holding her hand, as I answer these questions for her? Will she be able to speak up and make a respectable stand for herself? Will they bother her like they sometimes bother me? Oh, I can't even think about it...

But then, there are those who have the power to erase all sad thoughts that fester after these random tests of strength, like the elderly man I noticed staring at Oia in the post office this afternoon. Here we go again, I thought.

"She has a precious smile", he says.
"Oh, thank you. Thank you for noticing. I think she does, too."

Monday, April 11, 2011

Happiness is...

having a few Easter eggs in your bag when the egg hunt is over.

Friday, April 8, 2011


Apraxia: another word I'd rather not have to add to my vocabulary but it seems as though I have no choice. This is something Oia deals with on a daily basis. Turning thoughts from within her head into words that exit her mouth is harder for Oia than any physical challenge she endures. I hate it for her.

It has been about a month now since Oia began taking private speech therapy sessions. (She also receives speech once a week at preschool.) Yesterday was another private session and the word Apraxia was bounced around in our conversation more than once. I guess hearing the word slowed me down a bit because never before had this been a topic of discussion with any other of Oia's speech therapists but then again, I'd say that doesn't shock me given the caliber of speech therapists we've worked with in the past. Anyways, I digress...

Don't get me wrong, I know Oia has many things that interfere with her language development but I've never let myself put a name to "those things". Ignorance is bliss, maybe? We've just made sure to keep Oia in ST and submerge her in a language rich environment which means I provide a day-long commentary for everything we do together.

As best as I understand, Apraxia is a disorder of motor planning. Asking a kiddo with Apraxia to speak a word on command feels to them like a nearly impossible task. They have to process the word and "plan" all the thoughts and movements necessary to say the word but the planning part is interrupted; in Oia's case by that little hole so conveniently located in the language dominant, left hemisphere of her brain. Words that come spontaneously are easiest because they come without thought and without "planning". Often times these are words of frustration or extreme excitement. This explains why Oia has been known to speak something completely new and clear only to never be heard saying it again.

This motor planning disorder explains Oia's limited and repetitive use of words. For example, one of the only ways she knows to engage herself in conversation is to ask "What's that?" even when she knows full and well what the object is. It's easier for her to speak what she has mastered than to battle new words or phrases due to her challenges in motor planning.

This disorder also explains why Oia has (hopefully temporarily) lost the ability to speak her name. As one of her goals in ST, she must learn to speak in isolation all long vowel sounds: a, e /ee/, i, o, u /oo/. Even though she's been able to pronounce her name for over a year now, she could not just say /ee/. Now that we've worked so hard with her to say the long e sound in isolation, we have also "messed up" her motor plan and ability to speak "Oia /E-ah/". Another example: Oia can speak "uh-oh" but can't produce just /oh/ which is the long o sound. It's crazy and hard to understand yet this is what I'm told Apraxia can do.

I don't understand it all which is why I welcome those of you who have experience with Apraxia kiddos to share your 2 cents. What works, what doesn't, any thoughts or suggestions? I have a little girl who wants to be understood but no more than I want to understand her.

And for the record, she is currently using picture cards to help facilitate communication and she uses a handful of signs to indicate things of need; drink, eat, sleep, etc. We also have experience with the iPad. At this time though, she'd prefer to use the iPad for play instead of as an augmentative device.

Saturday, April 2, 2011

3 Years Ago

Little baby glasses, MRI, EEG's, the wonder and worry, early intervention, endless hours of occupational therapy, constraint therapy, physical therapy, speech therapy and hippotherapy, orthotics, weight vest, walker, splints, countless doctor appointments, trial and error, tears of heartbreak, tears of pure joy, stares and questions, practice, practice, practice, bumps and tumbles, bruises and bloody lips, surgery, eye patches, serial casting, ankle sprain, Botox, seizure scares, special ed preschool, tiny miracles... all because of one diagnosis.

Today is D-Day, 3 years ago. Today we reflect on what lies behind us for it is what brought us to today - and today is worth celebrating. Today we celebrate the girl who has worked so hard and come so far yet who has only just begun. We have been blessed beyond measure.