Tuesday, October 6, 2009
Home Sweet Home
After tirelessly working to get Shyanne to drink the requirements that the doctors want to meet the requirements to come home...she did it! The last couple of days she's been drinking out of the bottle real well so here we are, everyone, at home. It's been a month. Last Friday, Brooke and I were out of town, Tyson, Bennet, and Jovee were at Sue's, Jeannine was home alone, and Shyanne was at the hospital. We've been separated like that for the past month but now it feels so good to be all together again. Nothing like the priceless time spent ALL together as a family.
We have a ton of follow up visits the next several weeks for Shyanne but I'm too tired to think about all of them. Just happy to get back to somewhat of a normal routine.
We told the kids that Shyanne would be home Thursday by the time they get home from school and Bennet said, "I'm going to run so fast off the bus to see Shyanne". It was very difficult for him to be shut out of ICU and not see Shyanne because the hospital had the no siblings rules because of flu season. They all gave her lots of lov'in tonight when they saw her. We suprised them one by one by telling them each to go out to the van to help get groceries. Brooke had just a huge smile on her face when she saw her baby sister.
I know lots of you had Shyanne and our family in your thoughts and prayers. Thanks a kajillion (like always). Tomorrow, Wednesday, the hospital had it scheduled or Shyanne to get a G-Tube and that would have put her out another couple of weeks before coming home. But your thoughts and prayers had lots to do with Shyanne eating well and being able to come home. Thank you.
Shyanne's syndrome is 22q13.3 but she is unique because part of chromosome #12 duplicated itself and attached itself to chromosome #22. The geneticist met with us today and said she knows of no child with the #12 a part of #22. Shyanne truly is one of a kind! I keep thinking that she'll have some awesome, crazy X-Men mutant power that will save all mankind but.....probably not likely.