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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.

Thursday, January 2, 2014

Some days are just tough.

May hasn't felt well at all. We finally gave her a priesthood blessing last night and she slept through the night, giving much needed relief. She was supposed to get her second dose of Synagis today but with a fever it just isn't a good idea. We did find a double ear infection. Probably happened since she has had incredible amounts of drainage... So with her new Nebs med and her antibiotics we are sure to be on the mend... Which my family should be thrilled about since I am a bundle of fun when I am get so sleepy. The kids went back to school today. It felt strangely like a totally messed up Monday. Gator went back for the whole day. The first since his stroke. It turned out great, with just one call home. Our school is amazing!!! I can't say it enough. I am so glad we have such understanding, attentive, helpful people surrounding us. Alex's teacher had back surgery and he has had a substitute.. Both... Well all three women including his French teacher are going to be sainted. I try hard to work with him... Our ADD kicks in and we end up at each other's throats:)  Ry on the other hand was super excited to get to it. Eden missed everyone in the mean time... Today I ran an errand for Jeff.. I bumped into a heart dad. It was so nice to connect.. For him to completely understand in just a couple of quick minutes. Both of his heart babies had HLHS like Gator does. 
May does not like getting treatments.. In order for me to so it alone I swaddled her arms and hold on tight. 

2 comments:

cici said...

Awwww.Sweet May, eel better fast.
A prayer is on its way.

Kelleyn Rothaermel said...

Poor Baby! Hope she feels better soon!