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!!
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!
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)
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!
Such a blessing from God!