Tuesday, December 16, 2014

Quiet Worrying, Answered Prayers and Patience Required

We've been quietly worrying over here the last few weeks.  
Not a productive use of time, I know. 
But still.

Speech delays are to be expected with clefts. 
 Speech delays are not a "big deal" on the grand scheme of health and wellness.

But it's been over a year since Maggie has been home and she has made minimal progress in her speech.  She also has made minimal progress in her language/communication through the use of signs.  And it started to become a concern to those helping us care for her, such as her speech therapist, the international adoption doc, etc.

We hit a point of "could there be something more going on" a few weeks ago.  We were told that she may have a severe speech disorder in addition to having speech delays typical for cleft-affect kiddos.  That she might have had this disorder even if she hadn't been born with a cleft.  That this speech thing may be much more of a long-haul than we anticipated, possibly life-long.

Concern was also raised in regards to her comprehension and cognition. There seemed to be some "missing pieces" in her learning, some things she should be doing at this point that she wasn't doing.

She is just over 2 years ago.  Most kids her age are speaking in short sentences or at least have a good variety of words and sounds.  She has been in speech therapy for about 3 months and we work with her daily at home.

Speech things she CAN DO:
Say "mom" and the "m" sound.
Say "ee" and "ah" and "uh" sounds (these 3 sounds are the majority of the sounds she makes).
Occasionally makes the "g"  and "h" sounds.
Hum more than a dozen tunes that you can recognize such as "Jingle Bells", "Twinkle, Twinkle", and "Wheels on the Bus."  Seriously, the girl is UBER TALENTED MUSICALLY despite having little speech.
Says a few "phrases" such as "ee-ya"  (See Ya), "ee-eh" (The end), "uh-ee" (Bless You).
Seems like she understands so much of what is said to her.

Areas of Concern:
Cannot say any other consonant sound besides m, g, and h, despite therapy. Even with the cleft, she should be able to make b/d/n by this point and should babble with those sounds- she has never babbled in the "typical" way with those beginning sounds. 

Cannot put 2 sounds together to make a word.

Wasn't pointing out pictures in books, answering questions with pointing such as "where's Mommy's nose?" and "where's Daddy?".

We went back to the International Adoption Doc to check in.  She did confirm that more progress at this point is to be expected.  In fact, they re-evaluated her speech progress and she tested to be at a 16 month level, which is EXACTLY where she was 6 months ago when they evaluated her speech.  Literally no speech progress in 6 months.  

The good news is that she is making great progress in other areas. Fine motor, gross motor, social/emotional... all these areas she has nearly caught up to where she should be for her age.  But that also makes her speech issues a very large discrepancy.
She was also hopeful that Maggie just might need more time than the norm for speech & language things to "click".  To be safe, though, some tests were planned to rule out some scarier diagnoses.

She had blood drawn to check for chromosomal abnormalities... I'm not even sure what that means, but my mommy brain quickly went to fear-mode.  Thankfully, after over a week of waiting, the results came back that her sweet little chromosomes are normal and just as they should be.  So thankful!

An MRI of her brain was also in order, to check for brain abnormalities.  This was scarier, as it had to be done while she was sedated.  So back to Children's we went, for her 3rd time of being under anesthesia, my 5th time experiencing it as a mom.  It just doesn't get easier!!  I took her by myself, and they put the mask over her face while she was in my arms. She was screaming, SO afraid to be in a room full of equipment and strangers, and then went limp in my arms.  To put her on that big old table by herself and walk away was heart wrenching.  I just stood there for a minute watching her and sobbing.  It just brought back up all that she has been through in her little life and my heart broke for her all over again.

 It was a long hour of waiting, and I was told that I wasn't allowed to be there when she first awoke, per hospital policy. I was so worried about how scared she would be to wake up admongst strangers.  But the staff were angels to her that day; they called me back before she woke up and I was right there when her eyes opened.  She just stretched and looked around peacefully.  I was so, so thankful that they listened to my request to be there when she woke given her background.  Those little things really do matter so much and it was a much better experience compared to after her big cleft surgery and she woke screaming in a strangers arms.  

Anyway,  that was a long day, and an even longer 32 hours or so waiting for the results.

But praise the Lord, those results also came back normal!!

Don't get me wrong, we would have loved her just the same and done anything we had to do to help her had those tests came back with concern.  

But to know that she doesn't have more issues stacked onto her already full plate was SUCH a  relief.

So what that means is that patience and time is in order.
We wait.  We give her time and hope that things begin to "click".

It's still very possible that she'll eventually be diagnosed with a severe speech disorder, possibly one that could have long-long implications.  But we are prepared and remain steadfast in our determination to provide whatever she needs.

We've been given some glimmers of hope in the past couple weeks as well, though our waiting and worrying.

She has FINALLY (after a year of helping her) begun to use some of her sign-language independently without needing a prompt from me first.  That means she can finally tell me when she wants "more" or is "all done" at the end of her meal, rather than screaming.

She can sign "up" when she wants to be held, rather than cry.

She can sign "book" when she wants me to read to her.

She has started to "talk" in her own way, stringing together long, elaborate "stories" that sound like "ee-ee-ee, ugh-ugh-ugh" while pointing and gesturing.   She has things to say!

These is HUGE progress that she now realizes she has the power to communicate!!!

She has also started to point out pictures in books, put together simple puzzles and answer simple questions with signing.  She also has discovered she can say her sister's name, and now shouts "A-yee!!" all the live-long-day.  It's adorable and would be even cuter if she would do it at a quieter voice level. :)

Our loving social worker reminded me (I need constant reminders) that this girl has been through so much in the past year.  New country, new family, new language, major surgery... and she just needs the gift of time.

Looking ahead, it has been encouraged by many participating in her care that we get her into preschool as soon as possible.  This goes against my protective gut as her mother; I just want her home with me after all she has been through.  But I also want what is best with her, so as we head towards next fall and her 3rd birthday, much will have to be decided.  

I'm continuously reminded that the main idea of this journey is to trust.  I love her to the point of exploding, but God loves her even more.  He has a plan for her and He's taking care of her far better than I can.  We just need to go along for the ride, trusting that He will show us the way and He'll do amazing things through her.  

I cannot say it enough: despite having very little language, this girl is FULL OF LIFE. She is joy personified. She is goofy and silly and a class clown and an entertainer.  She giggles, and laughs and teases and makes us ridiculously happy. 

I'll say it again: WE are the lucky ones.

Sometimes we handle doctor's visits well....

sometimes not.

 The after-effect of a 3+ hour appointment.

Waiting for MRI.

Post MRI. My sleeping beauty.

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