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, February 8, 2015

That's really gross, I love it!

Yesterday I took my Ukulele up to sing songs with Gator... I made up my own words to "bringing home a baby bumble bee" in my version you get to lick off the baby bumble bee and then spit up the baby bumble bee. Alex thought this was absolutly hilarious and laughed so hard. He told me "that's really gross, I love it!" Then he sang it over and over. 
I thought, what have I done? Alex was able to ditch his oxygen today. I was pretty sure he was going to come home with oxygen but he is proving me wrong. Today he also took a stroll around the halls.
His drainage from his paracardial efusion is starting to slow down considerably. This efusion was most likely caused by the trama of all that had occured and has taken time to heal. The drainage tube looks so scary to me, but it has helped so much I am grateful for it. 
Today has also been a change for our family, daddy has been asked to serve in the stake presidency as the second counselor. It is definitely bitter sweet because of the amazing ward family we have. We are also coming realize the amazing stake family we have and we are excited to be able to do something to pay it forward. We have so much we want to give back and so much gratitude for our loving community. As we sat in a meeting with Elder Borne and Elder Malm I just wanted to listen to them longer. They have an enormous love for the Savior and for those they serve. 
"Sometimes we are asked to do incredibly difficult things. I think our tendency is to ask if we caused the hardship because we aren't good enough, spiritual enough, or because we need to be punished because of past transgressions. But, remember that we are actually being refined and molded and humbled enough to rely on the Savior. This gives us an opportunity to become more like Him. What will our choice be? To question his love? Or to more fully rely on Him?"

I can't remember where I heard this, and this isn't word for word.. But I do know it has sure helped me to remember we aren't being punished by "Bumps" and to more fully enjoy, appreciate and show gratitude for the miracles. 

I have had an incredible birthday. I already got everything I ever wanted and I got spoiled by friends and family. Thank you everyone! To top it all off.. The other day this showed up on our porch. 
We have had a RIVER of love. But I won't let this anonymous love stop. I will pass this on to the next family who needs some love. Thank you brilliant RAK (Random acts of kindness) person. What you have started is amazing... 


Kelleyn Rothaermel said...

How wonderful! Glad he is doing so much better! Yahoo!

Gee Family said...

Oh my heck that story about the bumblebee song is so cute!! Love you and am so happy to hear that he laughed!!! The best sound ever, I'm sure. Loves

jackie said...

Such great news all around. Praying that Gator continues to feel better each day! Must have been great to hear him singing the bumble bee song!