bea’s baptism & update

Hi, Everyone!  Hope you all enjoyed the beautiful weather.  We certainly did!  Our week this past week was filled with medical stuff and this week will be much of the same.

This past Thursday I had my full day of evaluations – chest xray, EKG, physical, psycho & social evaluation, etc  So far so good but I won’t know for sure if I am allowed to move forward for another couple of weeks.  Once I get the go ahead, I have a consult appointment with the surgeons and they review my charts and give the final “say”.

Beazy had her routine appointment with her liver doctor at Children’s on Friday and all went well – she gained weight again and is now up to 14 lbs and 2 ozs!  We are thrilled and are going to continue working to beat the goal of going 5 months without a feeding tube.  We have a few more weeks to make that happen 🙂

She is in her MRI right now (she is under sedation for the MRI so prayers, please) and then we have her “transplant bootcamp” Wednesday, Thursday, and Friday.  She will then be listed on the deceased donor list shortly after.

SO – basically they are still going to list her and if they get an offer for a liver that is as good as mine would be, they are going to tell us to take it.  Again, ONLY if the liver is going to be as good of a match.  If Bea gets to a point where she is losing weight and we need to transplant her – then we will move forward with living donation.  Either way, they think she will be transplanted by August.

I also had the incredible pleasure of meeting a woman who was the living donor for her daughter.  They are from Louisville but she happened to be in town for work and I was SO happy to meet someone and connect the way we did.  She is an extremely positive person with a great spirit and her story was very similar to ours.  They made it to the other side of this and her daughter is growing beautifully.  She even showed me her incision and it isnt that bad. 🙂

In other news – we had Bea’s baptism (part 2) this weekend.  If you remember, we did her true baptism on March 12th (the night before we Kasai surgery).  We finished it up on Sunday and had a nice celebration afterwards.  It was a lovely day.

[My favorite new necklace…]

[Dad keeping me company at the day of doc appointments]

[Before her second day of swim lessons]

[Pink pink pink]

[Getting ready for the bi dig day…]

[…..and thats a wrap 🙂 ] 

XO,

Hillary

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