Thursday, March 29, 2012

Only a Matter of Time

Somehow I knew this day was bound to come.

Today was the day.

"Mama, I want patch, too!"

OK, darlin' go pick one out.  Do you want it on your left eye or right eye?  OK - there it is.  What?  You want one on the other eye, too?  Okie dokie!

"Mama . . . . . . beautiful!!!!!!"

Yup, my sweetness, you are beautiful!


Wednesday, March 28, 2012

Diagnosis for Zabi

OK - I have to admit that I have been begging for an answer to "what is causing my daughter to have so much difficulty in communicating?".  What I wasn't prepared to hear was that her speech pathologist finally came to the conclusion that Miss Zabi exhibits all the signs of what I suggested to the professional 1 1/2 years ago! D.U.H.!!!!  So now what?


What is childhood apraxia of speech?



Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. 
  • Does not coo or babble as an infant
  • First words are late, and they may be missing sounds 
  • Only a few different consonant and vowel sounds
  • Problems combining sounds; may show long pauses between sounds 
  • Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
  • Makes inconsistent sound errors that are not the result of immaturity
  • Can understand language much better than he or she can talk
  • Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech 
  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
  • Has more difficulty saying longer words or phrases clearly than shorter ones
  • Appears to have more difficulty when he or she is anxious
  • Is hard to understand, especially for an unfamiliar listener
  • Sounds choppy, monotonous, or stresses the wrong syllable or word 
  • Delayed language development
  • Other expressive language problems like word order confusions and word recall 
  • Difficulties with fine motor movement/coordination
  • Over sensitive (hypersensitive) or under sensitive (hyposensitive) in their mouths (e.g., may not like toothbrushing or crunchy foods, may not be able to identify an object in their mouth through touch)
  • Children with CAS or other speech problems may have problems when learning to read, spell, and write

  • We don't know what our sweetie did or did not do as an infant, but at 4.8 years old, we do know that she said less than 10 words in her native language.

Update and Pies

First the important news - 
My friend, Denise, has not only left ICU, but she is now HOME!

She is wearing a pacemaker unit just in case her heart decides to go willy-wonky again, but she is with us and recuperating beautifully!

THANK YOU, God!!!!!

THANK YOU, friends, who have prayed for her over these past few weeks.

The WA State School for the Blind had some local bakery chefs come in and work with the kids to make some pies yesterday.  Even though JiJi is not a physical student at the school, we are still welcome to participate in any of their events, so we hustled our little tails down to town yesterday to join the fun.

Well, Zabi and Chicka had fun - JiJi did NOT appreciate the cold, sticky texture of the dough and wanted NO part of it!





We were able to bring the pies home and baked one up last night - scrumptious deliciousness!

Wednesday, March 21, 2012

Tuesday Update on Denise

This is the update that I received this morning - I am headed up to visit her in just a bit.


Thank you, Jesus, for allowing us more time with this special soul!


She is so much better!!!  Still has a ways to go – still has pneumonia, and her chest is very sore (probably from CPR compressions); so it hurts to cough.  She is off the vent,  and they were just starting some feeding (apple sauce, ice chips).  Very slowly.  She is talking some, a little hard to understand sometimes, but getting better by the hour.  Her sense of humor is very evident, and she wants to get out of there.   She seemed glad to see everyone.  She doesn’t remember what happened, or even some time before.

Tuesday, March 20, 2012

Earrings

Yup.  Sweet girl finally convinced the mama to let her have her ears pierced.

Whaaaaat????? You mean every one of the girls in this household have pierced ears except for MEEEEEEE????  Oh, this will never do!  She ran around checking everyones ears.

"mama - earrin's" while she stretched those little 7 year old lobes till they hurt ME!

"OK, OK my little doodlebug, let's go do it!"

She cried real tears and looked ever so distraught until I whispered into her ear that she was beautiful.  It was as the sun bursts through a dark cloud - the downturned corners of her mouth suddenly shot up into her famous big grin as she pulled in a big breath and echoed breathily -

"beeeeautiful, mama!"

That's my girl.

Beautiful!

Update

THANK YOU, ALL for your continued prayers for my friend, Denise.  Here is the update that I received today -


She woke up and can move her arms and legs.  Arms still a bit weak, but getting better by the hour.  Pneumonia is better.  She is still on vent but is alert and can indicate yes and no by nodding her head.  She really hates the breathing tube, it is very uncomfortable and tends to cause gagging and coughing paroxysms.  She will hopefully come off the vent and tube later this morning.  She has to pass 2 breathing tests before they will remove it.  She is restless and wants to get up and go.  Really great progress in the past day!!!


I am headed north to visit her tomorrow, please keep her, her family and the medical staff in your prayers.


Sunday, March 18, 2012

Please Join my Prayers

The Power of Prayer

Please join me in praying.

Please?

My good friend, Denise.

We have been friends since we were 7 - yup that is, ahem, nearly 50 years now.

Her husband had to use the axe to get to her this week after she collapsed in the bathroom.

The medical staff can't figure out why she is not responsive.    There is no indication of a stroke.  No blockages.  No heart damage.

They tried to remove the ventilator but didn't.  She has pneumonia now but it is not getter worse.

That is all I know.  But it is scary.  My friend.

Please pray for her full recovery.  Pray for her family - her husband, her three sons and all the extended family.  Pray for the medical staff doing everything they can to bring this woman back to us.

Please.

Sunday, March 11, 2012

Breakfast with Zabi

Honesty.  I am hoping that by sharing with you a typical itty-bitty part of our day that someone will recognize my daughter.
We have been to developmental specialists, speech therapists (she has ST every week at the local school), and geneticists to name a few.  We have had an MRI.  Miss Zabi-Chu has been home for over two years.
Don't get me wrong - we love this bundle of sweetness over the moon, but like every mama, I want my daughter to be the best that she can be - I want to help her realize her potential and her dreams.  Honestly - I don't know HOW to do that!  She is one of the most gentle, loving, calm, nurturing, thoughtful children I have ever had the privilege of nurturing.  She turns 7 next month.
We know that she had less that 10 words that she used in China at age 4.5.  Her original diagnosis was cerebral palsy, that China performed surgery for and corrected (say WHAT?????).
She also has low muscle tone, but outstanding fine motor skills - she could tie a bow at age 4.5.  She has great gross motor skills - she mastered stilts in a day at Christmas and has ridden a bike with no training wheels since last summer - rather Evil Kenieval style - stunts galore!
She has been diagnosed as a carrier of G6PD - an enzyme disorder that doesn't interfere with daily life as a carrier.
She also has mild ptosis - she doesn't have the muscles to lift her eyelids quite all the way open.
We are unsure of her IQ, perhaps this is the key to the puzzle?

Here is a scene from this morning -


I wan toas.
Sure!
I can fing.  (I can't find it)
The bread is on the counter.
she searches and searched all the counters.
I can fing. (can't)
What are you looking for?
Toas.  (I can't find the toast)
There is no toast on the counter.
grunt/sigh - stands staring
What are you looking for?Wwan toas.
Here, I’ll help you look.  What are you looking for?
no response
Are you looking for a toy?
no
Are you looking for your clothes?
no
Are you looking for food?
eat
OK - you are looking for food, something to eat - let’s look together.
Any food here?
shakes head
Any food here?
shakes head
Oh - there is some food - here is a bag of pretzels - is that what you are looking for?
shakes head
OK - let’s look over here, do you see any food on this counter?
points to bread in a bag
Do you see any food on this counter?
shakes head no
Is this bread food?
grunts
Yes, the bread is something we can eat.  Bread is food.
Do you see any food on this counter?
Ea brea.
Sure!  Here, I’ll open it for you.  I hand her a piece of bread.
grunts in frustration
What do you want to eat?
Co cera (cold cereal) - hands me the piece of bread (she is beginning to give up).
Hmmmm - that is not what you told me you wanted.  You said you wanted toast!  Do you want toast?
mmmmmmmm
OK - what do you have to do to the bread? (she has been making her own toast with butter for a long time)
Brea.
Sure, here is some bread.  I hand her a piece of bread again.
Bua (butter - she is giving up).
No butter yet - you have to do something to the bread first.  What do you have to do to the bread to make it toast?
Cook.
That is awesome!!!!!!  Toasting is how we cook bread to make toast!  Perfect - you found the bread on the counter and now you have to toast it!  Go for it!
Although this actually went on for longer than the dialog above - many grunts and sighs and blank looks.

This is a typical scenario that is repeated a million times a day here - substitute the item being talked about.  Miss JiJi is already starting to help Miss Zabi and "talk" for her.  Miss JiJi who has only been home for not quite 3 months.  I think that perhaps with JiJi's arrival, it has made me more aware of where Zabi really is.  They are only two months apart in age.

Saturday, March 10, 2012

Inevitable

I knew that it was bound to happen.  Only a matter of time. The morning routine.
Breakfast.
Dress.
Hair.
Brush teeth.
Patch on.
Glasses on.
What?  Glasses?  Where are MY glasses?

Yes, we had to scrounge around to find a pair of glasses for JiJi.  I guess we could have used an outgrown pair of prescription glasses - maybe tomorrow that will be what she wears.

She asked me yesterday if she could have earrings.
And big hair.

Please tell me individuality does happen!  No doubt they will all look back on this and laugh.

My mama's heart wonders though, do they so enjoy matching as a further reminder of belonging?

We'll never know.

Ahem - did you notice something missing from Chicka?  Yup - she lost ANOTHER tooth!  My, my - she just turned 6 and she is currently missing 4 teeth - it's a wonder she can eat at all!  And that isn't counting the other two that she lost and already grown in!  The tooth fairy is going to be broke - JiJi has lost 2 in two months, Zabi has one ready to come out any day, with a full new one already behind it.  Whew!

OK - off to the dump we go - the day's outing.  Fun (not!).

Wednesday, March 7, 2012

Happy Birthday JiJi!!!!

video

Yup - spit and all!  Best birthday cake we've ever had!

 She was only too happy to open gifts and bless us with her giggles and excitement!

The "sass"afrass 'tude.  Fortunately for all of us, this is NOT her personality - just a pose.  Such an awesome pose, though, that I couldn't resist sharing it!  She really is about to crumble into a giggle fit here, but you'd never know it!  Little Miss 7 years old and just barely on the scale at 40 pounds, 41 inches tall, with a toddler shoe size of 8!  We are loving on every single inch and ounce of yumminess!  She told me yesterday that she wants big hair and earrings like her sisters.

Sunday, March 4, 2012

Are YOU my Mommy????

As every adoptive parent knows, once you have adopted, adoption is part of your life.  Although I don't believe that any more adoptions are in our future, I am passionate about orphans finding their forever families.


A sweet little face popped onto my radar recently via a photo of my daughter with a former care taker at the orphanage.  I enquired about her status and found that she is still waiting for her mama and papa to discover her.


Here is her information exactly as it was sent to me - the NOTES are my additions:


Long Ping Yun was born on August 16th, 2003, and came to the institute in March, 2004. So she has been living here for almost 9 years. She got funnel breast (NOTE:  the caregiver means tunnel breast - sometimes called bird or pigeon breast) when she was born, which affect her movements. And she had to wear a special clothes to fix it, which I don't know how to say in English.



 
She is the 2nd student from the left in the front row of the classroom photo.  She is the child at the back of the trio - the caregiver is in the center and my daughter, JiJi is in front.


I noticed that her eyelids weren't fully open in the photo with my daughter, so I asked the caregiver if she has an eye condition called ptosis - where they lack the muscle to raise their eyelid(s) - two of my daughters have this - no big deal.  I also asked about her cognitive level.  Here is the reply that I received:


No, she doesn't have ptosis. It's trichiasis, which easily causes eye irritation.  (NOTE: one of my daughters has this - again, not a major surgical procedure.)  Last year she had an operation on that. But it seems kind of strange. As for her mental acuity, she is slightly lower than normal. She is one of  the few children who can distinguish colors,and count numbers at the institute. She is fond of drawing and now  she is learning to play piano, though she does not make big progress.


Is Ping Yun YOUR daughter?

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