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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.

Sunday, June 1, 2014

Recap





https://m.facebook.com/story.php?story_fbid=10203098539397992&id=1041534133

It was such a fun busy couple of days I haven't caught up yet. 

From the top...
Ryleigh is doing good. I can only imagine what it is like for the oldest child to deal with everything she does. She continues to enjoy school and friends. Then just because we wanted to spend a little time with her we took her to the kick off of the new splash pad in our neighborhood. She said a few words in the news clip... 
Alex is doing better and better. He has had so much fun with both of his Papas.. And so many visitors, text, phone calls, and special prizes. He has defiantly been spoiled and has so many fun things to do that he doesn't think about the icky parts. He has had to stay in the ICU because of where he is getting his milranone. They are still watching him closely for infection. Hopefully they will place a PICC line in one Monday. He has had a blast with his buddy Teagan... We are so thankful to have a friend here. The boys even got to see the Life Flight helicopter up close... Which is extra cool because we weren't coming to the hospital on it... 

 






Eden is having a great time playing with friends and was darling in this photo in the Deseret news


MayLee is just along for the ride.. She has been in good spirits for almost all the crazy we have going on. I miss my little side kick... She has been the most clingy kid I have. So I feel guilty sending her off. I know she is in great hands. 



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