Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, January 4, 2015

Finally... An update

This has been a very eventful week. Alex has had so many wonderful visitors, thank you for taking the time to see us. Uncle Pickles and Auntie Lisha and the girls flew all the way here, and Uncle Marc and Arli came, Grandma and Grandpa Great Groesbeck and heart buddy-cousin Chels, our sweet friends and Grandma's and Papa's and Auntie Pres, all taking turns watching kids or staying with Gator. Our "village" is the best. We couldn't do it without you all. 
Let's start with the girls because they have been massive troupers in all things.
Ry has been adjusting to the idea of bonus baby, I am so glad. It is not fun to have her so disappointed. She has been playing with friends and cousins and staying happy and lifting us all in the mean time. She helps were she can and does her best to be easy going. 
(Photo courtesy of Eden) 
Eden is spunky and so funny, she loved New Years for the games and that she stayed up past her bed time. She fell asleep snuggled up to me at 9:45 PM because she is a party animal. 

MayLee is doing well too. She has become ultra clingy, does that surprise anyone too much? She turns two tomorrow. Time has flown by so quickly. She is so smart to me, I think it's because she is so articulate and her vocabulary is so extensive. We plan on moving her into Eden's room.. And to begin potty training. She is excited about using the potty and that makes me so happy. 

And Gator boy, we have been as low as 3 on his dobutamine. He just couldn't tolerate it. His happy is probably 4. I guess this medication is not widely used in conjunction with Milrinone because we had a nurse who has been here seven years and never used it before Gator. But it's helping. With that being said, he needs to stay in the ICU until nurses on the recovery floor can be trained. We moved from a room with no windows to a room with two big beautiful windows.. He takes walks around the unit staying far away from the sickies and had his first guitar lesson. He built an amazing Lego tractor trailer. His spirits are good. Thank all so much for the strength you send our way. For all the kind gestures and mostly for the prayers. 

1 comment:

Emily G said...

We love you guys and are praying for your darling family. Thank-you for the update on your cute bunch.