The following pictures are of Joy sleeping that last morning in the hospital. She adjusted to the arm bands very quickly. She has learned early in life to adjust and adapt!
Things have been tough, as expected, since we've arrived home. Sunday Joy wouldn't eat or drink anything and she was so lifeless. I was preparing myself to take her back to the hospital to get some fluids in her. I think the poor girl has lost all the weight she has gained since coming home. But today has been so much better!! She has drank a couple of bottles and eaten watermelon and banana! She is getting her little personality back and it is so good to see! It is such a relief to see even her fussiness rather than the lifeless and lethargic child she was yesterday! So far she has only fussed once about putting on the dreaded arm bands! I am amazed that when we try to put them back on she holds out her arm without a fight like she is putting on beautiful and priceless bracelets! She is a trooper and has adapted very well!
Okay, because I know you are all praying, I'm gonna lay out all her business. She hasn't had a bowel movement since surgery, so we are praying for a bowel movement!! :)
We also found out from the genetics team that Joy has a missing segment of her X chromosome, called Opitz GBBB syndrome, which caused her cleft palate/lip, and wide set eyes, flat nasal bridge, etc. It can cause heart problems of which it didn't in Joy, Praise God. It can also cause developmental delays. We will not know exactly what type of developmental delays. So, we will work with Joy as much as she needs and be ever patient with her and we are confident that the sky is the limit for her. She may have trouble in some areas, but she will soar in others! She is so strong and so smart!
Thank you, as always, for your much needed prayers!
Hang in there Angie. Some of the meds they give them will constipate and we were warned of this. Gideon was certainly less on the bowl movements as well but it will return to normal.
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