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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.

Monday, April 27, 2015

Something hoped for

In the days leading up to our miracle of transplant for Alex things seemed pretty bleak. Yet Alex was still planning his future and thinking about his birthday and turning 8. For those of you who don't know much about the LDS or Mormon faith. We get a choice when we turn 8 that we can now be baptized and become an official member of the church. At 8 we can choose right from wrong. We also receive a special blessing called confirmation, this is when we believe we receive the gift of the Holy Ghost. If you want more info I am happy to share.. But now you understand a little bit why Alex was so excited for this special birthday. He had already decided a long time ago that baptism was something he wanted. We weren't sure how we were going to make it work. 
With his new heart, we can!!! He CAN!!! He got this suit for Christmas.. I honestly thought it would be a suit we buried him in (horrible thought, but one of my realities). I love that he can wear it now! For this awesome milestone. 

On Tuesday was his 8th birthday!! We went to a special lunch at Olive Garden where he had shrimp Alfredo. As you can see he loves this dish!!! 
Grandma Homer's is his very fave but he likes Olive Garden too..

Then we went to Smith's!!! Bruce And Jeff and their team sang to him and brought us treats!!! 



We have and will continue to celebrate throughout the month.. 

May loves helping with yard work. She just needs a little more time to hone her skills. 
She also love love loves the swings at the park.. We spent two hours there and she spent all but 20 mins in the swing.. 
However this is what happens when you take yourself off your oxygen..
It wears a sister out! 












3 comments:

Simply, Sarah said...

How great that he can use the suit for his baptism and not burial!!!
I understand your reality, and am grateful you have a second chance at life.

Kelleyn Rothaermel said...

Congratulations Alex! Being baptized and being a member of this church is so awesome and the best choice I ever made! YOu rock!

Nancy brown said...

I did a little blog hopping today. My name is Nancy and I have a 9 year old with special needs. However, we have a cousin with a super power heart like your kiddo. He is almost 8 and his name is Noah. They live in Utah as well!!! Our Aunt Crystal is great!! You have such a gorgeous family and your example of trying to fit in scripture study and working so hard to be a good example hasn't gone unnoticed. Hooray for a Baptism!!! 8 is GREAT!!!!

Nancy Brown
prematuritywithlove.blogspot.com