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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, December 8, 2013

Ready for a novel??

Last we left off.... 
The kids were off track and we were doing as many fun things as I could manage and stay sane. We wanted to visit Grandma Clawson and Ave... Well and Papa Clawson too, he was just at work. Even though my folks only live 45 minutes away, it takes some crazy planning. While there, we still had to run to the home health office and grab another tank. But we hung out and went to the $ movie to see Planes with Ave. 
My momma and May!!! 

Papa plays! 

Papa plays 

We had an amazing Thanksgiving-
We went out to breakfast as per tradition. We got our huge news paper... The best part is wearing our pjs. 






After breakfast we went home to get ready for dinner at Grandma and Papa Clawson's house. 

I made little outfits for the little girls. 
We ate very yummy dinner.. I was a pumpkin pie making virgin. I don't think I should make it again soon. The crust was awesome. But the filling was not good. I think I forgot the sugar. I should have made one way before for practice but ya live and ya learn. 
To keep Preslee and Jenivee close to our hearts we wanted to do something that would include them even though they weren't physically there with us. I came up with the idea of grateful luminaries. Each person put things that they were thankful for. Preslee sent us hers and we got to hear here gratitude for this years blessings. On Jenivee's we put things we love about her. Her sweet little smile, twinkly eyes, the fact that she made my brother and sister in law a daddy and mommy! All of our lights joined together. 
We put Jenivee's in the middle. The light from the street light made it hard to see them so we had to move them to a line in front of the house. 



After that we went to see Frozen! It was so cute! Ry has been playing Frozen ever since. 



We are some of the nutso people who get up super early for Black Friday. 4:00 came really early. We brought Ang this year! It is so fun to have an extra friend to be in the lines with. 

Thanksgiving extended version happened in Richfield the next day... Spending time with my family is one of my favorite things. Plus having turkey dinner again is the best! 





We also played with G&P Homer.




The kids went back on track and the crazy life returned. We missed sleeping in but it will only be three short weeks until we are off again. They were also recognized at the Reflections council level night. I am so proud of them for making it that far. Ry has huge plans for next years Reflections. She wants to enter almost all of the categories. 




.....and the best news came on Friday. All those prayers and well wishes must be working. We have been so blessed to know so many willing to remember us in their prayers. It is very humbling to have so many willing to serve us with meals, treats, calls of concern and love and so much more. Every single thing is so wonderful and we wish that thank you was enough to show our gratitude but we feel it insufficient. Alex's cardiologist called. He explained that he had been in touch with transplant and instead of just passing his case off he went through everything together with them. While Alex's heart is still not optimal, very far from it. We think we can hold off longer. We will let the medication (Digioxin) work longer and redo his echo, x-rays and EKG in early February. We can make better decisions then.... Hurray! We get to be together and not stress (too much) for the holidays. Heavenly Father is truly aware of us. Learning that we may or may not face transplant soon have given us such a glimps of what that bridge looks like. It seems anything is bearable with all the support and love we have had. Alex had a very sweet priesthood blessing given to him by brother Walker. I had one given by my sweetheart. I have felt like we would be able to have clear answers to our needs over the next couple of months. That clarity has given us so much peace. Onward and upward:)

May has had her first synigis injections as well as her flu booster. Those big old needles are mean. But they will hopefully help protect her. 

We have also all had some sort of icky cold and pink eye!!! Hopefully we are on the tail end of all that business. 



































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