Friday, May 10, 2013

Grace abundant!

I have had several people ask for an update on Grace.  We have had so many doctors' appointments, I keep thinking, "I will post after we see Dr. SoandSo."  Well, then they have another test to do.  So, I think, "I will post after that test."  And then another week goes by...

My sweet Grace!  How to sum her up?  Sweet?  Precious? Treasured? Delightful? Content? Joy? Blessing?  Nothing quite comes close - except that she is abundantly all of them!



She isn't going to be one of those miraculous and incredible stories that ends with "And then she got up and walked after only 3 days home!"  I am being a little silly, obviously.  But there are some incredible stories out there - only our amazing God could do such things.

Her story, instead of including dramatic fireworks and amazing changes, is one of sweet contentedness.  Like a cold glass of lemonade, sweet and comforting, on a lazy summer day.  One of those moments that you can savor and enjoy forever.

 
Grace's favorite place to be right now.


Grace used to spend all of her life in her bed or in the same stroller.  Day after day after day.  Not because the staff did not care - but because they had so many others to care for, they did not have the resources for anything different, and I don't think they had the knowledge of how to care for someone with her level of disability.  The staff talked with her while they fed her and lovingly brushed her hair out of her eyes.  But then, driven by necessity, they had to move on to the next child.  She was loved very much - but she was still nobody's child.

 
Grace in her orphanage


From the first moment she heard The Warrior and my voices, we got the most amazing smiles.  It completely transforms her beautiful face!  The staff stood back with shocked and hesitant faces.  I didn't know what to think, but decided that we had waited too long for that moment to worry about
what others thought.
 
Snip and Grace snuggling


As the week went on and the staff began to talk with us, we began to understand.  We were the first and only family to ever adopt from the orphanage.  NONE of the other precious children were even listed for adoption.  Yu-Chi was only listed because her birth parents petitioned those in authority to list her.  It was done reluctantly because they were sure her needs were too great.  (And she waited...and waited for years.  I think the first picture I saw was dated 2010, on her 2nd birthday.)  At first I was very happy to think her birth parents loved her so much.  But, the social worker shook her head at my joy and said that it was only because they no longer wanted to pay the costs of housing her in the home.  Heartbreak!

Part of their shock was that no one could believe that we actually wanted her.  I think they were truly afraid we would meet her and change our mind.  Some were blinking back tears as The Warrior and I covered her with kisses.   Even the stoic high up official from her county that escorted us the first day.  (He spoiled us that day by treating us to an amazing lunch and dinner paid from his own pocket.  He also bought us bubble tea with a boyish smile on his face.  That night he toasted us as Grace's "angels" - I had never felt more humbled.  I assured him that she was our "angel" and we were the ones blessed.)

The other part of their shock was that they had never seen Grace smile and interact like she was with us!  Three different staff members told me privately that they were all discussing the amazing change in her.  They kept insisting it was "magic."  I told them it was "family" - but later wished I had told them the truth - that it was God's grace - she was God's Grace!

So what is sweet Grace's days like now?  She wakes up in a bed full of soft, pretty blankets with the sunshine streaming in.  (Unlike the brick wall out the distant window in her orphanage)  She wakes up to her mama smiling over her and telling her softly how loved she is.  (Okay, so she probably can't see me... but she can hear the love in my voice.)  Soon her daddy stumbles out and scoops her up to snuggle with her in their big chair until he has to start his day.  Oh, the smiles she has for her Daddy!  Especially when he is singing to her!  She snuggles in and smiles and laughs.  How wonderful it must feel to snuggle into a warm body - something she has never experienced before.

 
The Helper and Grace sharing a laugh

The rest of the day is a constant stream of brothers and sisters talking with her, gently massaging her stiff muscles, and holding her close - whether she is in her bed, in her cushioned chair, in the stroller, or on their lap.  Both The Testy Chef and I work on her range of motion activities.  Slowly but surely, we can move those little hands, wrists, arms, legs, feet, fingers teeny tiny bits more.  We are so excited.
 
Grace and I working on stretching.  She is so proud of herself!


When we first took her from the orphanage, she would shake with pain and fear every time we moved her.  It was so painful for her and heartbreaking for us.  I didn't want to move her or change her diaper because it made me so sad.  But I knew that it was for her best that we had to do those things.  Although not completely pain-free, we are able to move her without the same harsh, immediate pain-filled response.  My prayer is that we will soon be able to change her clothes and diapers without it causing any pain.  I know the only way is to keep working with those stiff little muscles to help them relax.  But it hurts my heart so badly...

I am going with random thoughts here as my coffee is running out....She LOVES her baths!  I am sure the warm water feels wonderful on her body.  She slowly, slowly stretches out her legs and uncurls her clenched fists as we use the time to massage as well as soap her up.  Then she LOVES the hair dryer!  Silly girl.

We have been to the neurologist, who was hopeful that she may not be having seizures anymore, we are waiting to hear the results.  But she took her off of three of her medications - what a blessing! She was a wonderful woman who grew up in Belarus, which gave her insight into many of the medications that Yu-Chi was on but are not in the US.

She was at the eye doctor on Friday, who would like more testing done.  Grace is very limited in her eyesight - we are just not sure how limited.  She can most likely see shadows and light, but she does not focus on anything.  Her eyes reflex to the light, but she doesn't appear to see faces, etc.  From the appointment on Friday, it appears that her eyes are working fine.  However, with the extent of her brain damage, there is a very real question as to whether her brain actually processes what her eyes see. That will be the next test some time in the next 6 weeks.

Mimi's therapist evaluated Grace as soon as we came home.  She started out very, very subdued and reserved with her comments.  But as Grace started to relax, the therapist was pleasantly surprised.  She felt that with ROM (range of motion) exercises, that she will continue to regain at least limited flexibility. 

We did realize the first day in the hotel that Grace has scoliosis.  This had not been mentioned in any of her evaluations, but was not a complete surprise.  So many of these little ones that cannot move on their own end up with curled and twisted bones as they sit in the same position for years.  As I mentioned, she has very stiff muscles.  Her hands are almost always clenched, except when we have been working with her.  The elbows are consistently bent over her stomach. BUT she is straightening her arms more and more on her own.  HOORAY!  Her hips splay outward, like a frog almost - but like her arms, she is straightening them more and more on her own.  In fact, it is very precious - she will get a huge smile on her face and then stretch because she knows what comes next.  We all cheer her on!  Her smile gets bigger and she stretches some more!  My heart just overflows with joy.

She still has her NG tube.  The doctor is planning to place a g-tube placed as soon as possible, but we have to wait until her system is cleaned out first.  She is still significantly constipated.  I was hoping we could try to give her bites of food, but she is terrified even when we brush her teeth.  Oh, and her teeth!  Poor, poor baby!  Her molars are just nubs in her mouth.  I don't know if it is from grinding or from her gums being so swollen from infection.  She has yellow "shells" of plaque on each tooth.  If I pick at them, I can get them to pop off - but she cries and cries that my hands are in her mouth.  She had horrible thrush on her tongue.  It stinks so badly when I brush it off.  But the brushing is slowly making a difference (as well as probiotics).  But just like changing her, it is so hard to gather the courage to work on her teeth because it hurts her so badly.  She has an appointment in two weeks with an amazing pediatric dentist.  He will probably need to put her to sleep to clean her teeth.  My poor girl.

The dietitian with the GI doc is simply wonderful.  She is slowly but surely working on Grace's deficiencies.  She has osteoporosis from lack of Vitamin D and good foods - so that is the next round of supplements we are adding.  Oh, and speaking of Vitamin D - she LOVES to be in the sunshine!!!!!  We asked the orphanage how many times she had been outside and we were told only once when she went to the hospital for pneumonia and once for the visa exam! More heartbreak for this Mama.

Every day it is warm enough, Handsome takes turns taking Grace and Mimi for walks.  They both love it!  Grace also loves being in the stroller outside or riding in the car.  Honestly, she is just a happy girl.
 
Happy days outside!

So long term for Grace?  Unless God chooses to do miraculous things (which He could!), she will be in a wheelchair all her life.  My "dream" goal - as in way-far-out there - is that she could learn to sit unassisted.  But right now, she can barely hold her head up on her own.  She most likely will never eat by mouth.  She will probably be non-verbal.  She has only a newborn's comprehension.  But, oh, her beautiful smile makes it all a blessings!

 
Just for good times - The Testy Chef, The Professor, Smiley, Snip, The Helper, The Warrior with The Boss on his shoulders, Romeo
 
 
The Prince, Grace, and I at my parents private campground.  You can't tell by the picture, but she loved it!
 
 
Little Mimi - what a dolly!
 
 
I am so blessed!  To Him be all glory, honor, and praise!
 
P.S.  I guess I wear that pink shirt too much.  ;-)

2 comments:

  1. Thank you! I really appreciated this post! I love Grace's smiles. Praise God that she is settling into your family so well! Is being in the front carrier comfortable for her? I have been thinking about our own little one in EE, and wondering with her CP if she would be able to tolerate something like that at all.

    And Mimi... She makes the exact same spunky face that my youngest sister makes... And then you know mischief is coming! Lol :-)

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  2. Hi, Mama V!

    I did not think that she would be able to use the front carrier. I had even brought it with me to Taiwan, but didn't even try it. It wasn't until she was home for several weeks and her muscles had started to relax that I decided to try it. She loves to nuzzle against my neck and this held her just right. I am *sure* a therapist would not be happy with her legs in the splayed position - but I debated the bonding versus the correct position and went with the bonding. :) I first held her in the position the carry would hold her just to check to see if she would be in pain, when she seemed fine, I went ahead and tried it.

    Little Mimi is quite a character. She just turned 5 years old and finally hit the terrible twos! We aren't sure whether to laugh or cry. It is awesome to see her "growing" developmentally - but they are *terrible* twos, complete with temper tantrums (Mimi style). If it took her 5 years to get here...how long will she be in the twos? ;-)

    By the way, I had asked for birthday gifts for Mimi and Grace to help off-set the enormous expense of the Kindercarry - and I am so thankful that God provided the rest. It is definitely the best investment I have made for the girls so far!

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