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

Miss MayLee is 2

It has been a great day. Our new church time is 1 which means our birthday girl missed her nap. But she had a blast at nursery with Sister T and Sister H!!! What amazing Sisters to watch over the littlest spirits of our ward/church family. I just know if the Savior came to our church He would want to start in nursery. When Jeff got up for meetings May woke up too. He said "happy birthday" and she replied "open presents?" There is no sliding one past this little girl. We got her a giant cupcake (no candle/open flame for this oxygen wearing toddler). For gifts she got a pink poodle alive, and her new bedding for her big girl bed. From Auntie Lisha, Uncle Pickles and the girls, she got a Barbie swing set. Our home teachers the Deheers brought her a princess reader(like an iPad for toddlers) that reads books. She is so happy.. She got to FaceTime Gator who sang her the birthday song. And she crashed asleep at 7:15... 

The word is... After trying the lower doses of dobutamine Gators creatinine went up. This number measures if his liver and kidneys are happy. Going up is bad.. That means they are working too hard. So today they moved his dose back to 5. When Carolyn our nurse asked him how he was feeling after the increase he said "so so so so (for fifteen seconds) much better".
We sure love Carolyn.. We found out we are related back a couple of generations. It is another blessing to have members of the staff who take amazing care of us. 


Kelleyn Rothaermel said...

Too cute!! That went by fast!

Abbey Simpson said...

I read you blog all the time and I just have to say I am amazed at how you keep it all together! You are an inspiration!