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Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))
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Wednesday, September 4, 2013

Mercy, my baby in a big body.

My sweet love with  Sotos has gained 8 pounds since March with us. I knew she was getting heavy! But holy cow she's rock solid! And so tall too. A head taller than her peers. They say with Sotos that you need to set rules early before they are too big to stop you! :o)
(With DS loves you can buy a little more time! They are smaller! ;o)

Right now if we tell her "time out" she plops to the floor, full well knowing only mom and dad can lift/move her to the time out bench! Her siblings aren't allowed to push or pull her to sit there, due to health concerns. She has Thalassemia . And she can't be allowed to "sit hard" because she needs a surgery at the base of her tailbone.

The top picture is the OT therapy I do with her. She is learning to eat with her hands and build muscle strength in her wrists. Her hands are so large they tend to "hang" from her wrist. She's doing a FANTASTIC job!!

When she first came to us, she had fed herself in her last home, but was not getting enough calories. Going back and forth for months from us to the last family, caused her a lot of confusion, upsetting her. She fought feeding herself. So why push things that can be worked on later.

So we fed her. And we fed her and we fed her. (thus the weight gain) And then we sat her down one day, with her new adaptive spoon and "Cali" bowl. (it has a inner lip) And we gave her her food. And she fed herself, slowly but surely! The spoon balances her hand out. The bowl has a non skid bottom too. We also put slippery plates on silicone hot pads or cookie sheets when she eats off of those.
 
 She feeds herself beautifully! You can see in her large hand the muscles are working very hard to grip. Her school program with the last family had started a feeding goal, she was at 10%. It's 100% now! We are so excited at this new milestone!

She's so independent here I love it.
She used to walk bent over, head hanging, with her back to everyone.
She used to kind of "clomp-clomp-clomp" up and down our wooden stairs, bruising her shins.
She used to drool and have a "hangover" from her meds.
This morning she was quickly, stealthily running up the stairs- when she got to the landing, Samson was standing, waiting for Mosie to finish crawling up. Mercy pushed Samson aside and squeezed through a small space past him, to get ahead! Poor Samson, we make him say "Excuse me"! And Mercy just budges ahead!

 We put a "tent" cover on her playpen bed so she can not stand up in it. If she stands she wakes her sisters tapping and yelling! :o) We zip the tent at 9 p.m. just as a visual that she needs to go to sleep, and stay in her bed. Kids with Sotos often have sleep problems. If it's too hard for her to sleep we give her a small dose of her "old" medication. That med was not for sleep but has a "sleepy" side effect. (We can't get new real sleepy meds until we get her new psych, long frustrating story!)

First thing in the morning while her busy sisters run to the bathroom- she unzips her tent top, jumps out and runs off to her destination- usually to eat, but sometimes to see me! :o)

Love- love-love her determination! It's almost gone!
And that left hand wants to help! So cute!

Kids with Sotos are developmentally delayed. Some will be "normal" (whatever normal is :o) functioning, as they catch up around age 12 or so to adulthood. It's unknown why they are delayed so long and then catch up!

But Mercy has the added Sotos marker, another chromosome abnormality- the NSD5 deletion. Mercy will not catch up. Her normal will be different.
We think as long as she enjoys her quality of life, it doesn't matter!

Right now her only educational need is Speech. I am working with her, but hopefully soon we'll get our speech therapist! I even have dreams where she talks to me. I can't wait! Most kids talk by her age, but there's still hope she will talk!
Such a blessing from God!

5 comments:

  1. Wonderful update! She is so beautiful and it is wonderful that she is doing so well in your home. Being loved and accepted does work miracles.

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  2. Thank you for the mention of the Cali bowl, Elizabeth! Also, where did you get the adaptive spoon?

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    Replies
    1. I got it here. especialneeds.com/
      They are quite expensive. I don't really care for this company, their customer service isn't the greatest.

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  3. Precious girl! I think one of those Cali bowls might be just what our Miss Maia needs!

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  4. What a wonderful update! I have been away toooo long! You are amazing!!! Praise the lord for specialized adaptive tools!! Blessings to you and Tom and all the kiddos!

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