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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, September 24, 2015

Oh the details are a little muddy

Million Miles at Miller is a ride that I am happy Jeff likes to be part of. It supports Make a Wish. The kids love the finish line party so it's really fun to wait for daddy to finish this century. The kids did face painting, art, they hung out with the cheer leaders and cheered for all the riders that crossed. 


These dandelion wishes occupied two little girls for a very long time. Sorry to the place of business were we spread a ton of seeds for you.

Alex's mug will be in the Festival of Trees commercial. Watch for him. And support the Festival of trees if you can. Last year my sister in law did a beautiful tree celebrating my niece Jenivee. Mitochondrial disease took her from us way too soon. This was good and happy way to remember her. 
As we left the hospital after the filming, we came out to see this really cool bike parked in the terrace. 

We watched Goonies today between dance classes. Remember the chubby one that loves to eat?? Chunk??? I could totally call this little guy Chunk. And he is OK with that!
Monday Gator had clinic. His echo looked good, however his kidneys aren't very happy right now. There is always fine tuning with transplant kids. They explained that a normal child should be around .4 Alex is at a 1.2 . The best thing he can do is drink a ton of water.

*update
Hurray his number looks a lot better... Just a little fluid goes a long way.. 

I got my Halloweenie decorations up today. This is one of my favorite months.. I almost have May's costume done.. She is going to be cute. 







Saturday, September 19, 2015

Baby boy

"To infinity and beyond" 
This little boy is getting easier and easier. He is into a routine, smiles more and doesn't have such bad tummy aches. 
He rolls all over and I have to lay him on the floor because he would roll off anything else. He also scooches.. What's that you ask? He arches his back and pushes against the floor moving into furniture and onto the hard floor.. Or if I completely leave him, he falls fast asleep. 
He isn't sure if he loves tummy time because it's so darn hard lifting those cheeks up. 






There is a first for everything

Eden and Alex are playing soccer for the first time this season. 


Jeff participated in Lotoja for the first time, on a relay team and caught the bug. He is pumped to do it solo next year if he gets drawn.





I managed to take all my short people to the IHH heart walk. We had a great time. This is the first year of doing it without Dad. 


















Friday, September 18, 2015

Asher's blessing outfit photos







Thanks to the amazing Bethany Bee.