weekly wears & great news

Happy Monday, Everyone!

This is my first week back 4 days a week and it started out kind of crazy.  Accidentally set our alarms for 5:45 PM and woke up at 6:45am running around the house like crazy.  Somehow I still managed to get to work by 7:30am and that is NO easy task…esp with a baby.

Our week was a good one.  We had a liver doc appt on Friday (which will be a regular occurrence) and found out that Miss Bea has slowed her growth.  Although it is typical to not grow much until you have a transplant, this still left a pit in our stomachs.  She is acting still very normal, happy as a clam, but will be a small little girl until she’s transplanted.  Luckily, she will catch up quickly post transplant 🙂  My new attitude about this news is that everyone with kids always tells me “enjoy the days they are a small manageable size” so I’m feeling lucky I get that stage a little longer than the average mom.  🙂 

We are feeding her 30oz a day to help push off a feeding tube (which is inevitable)  so we are currently feeding her last bottle at 1030pm and then waking her up at 330am.  She would sleep through the night but it is crucial we get these bottles in her.  I never knew how well I would survive without much sleep.

OKAY – now on to our great news!  We have been drawing the short straw for the last several weeks but we finally got our first piece of good news.  Jordan & I passed the first phase of becoming a match for Bea!   Because maternal donors tend to be a better match, I will move forward with testing and if I hit a road block, Jordan will jump back in.  We will know for sure in the next 5ish weeks whether we can officially step in as her donor but in the meantime, we will move forward with getting her listed on the deceased list.  Our bootcamp is scheduled for May 5&6, her application will get reviewed on the 7th and then she will be listed shortly after.

Continue prayers that Jordan or I can step in for Miss Beazy so we can get this thing done before she gets too sick!!!   Also prayers for a positive pediatrician appointment & liver doc appointment this week and for a little weight gain.

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And the creator of the #BEAstrong :):)

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We had a lovely 1st Easter with our Beaster Bunny.  Full of Easter baskets, egg hunts, family time, and great weather.  It was perfect.

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Finally, I want to thank everyone for their continued support via emails, texts, calls, notes, and tshirt purchases 🙂  Although I havent been able to respond to everyone yet – I want to let you know that I feel your support and it is what is getting me through.

To end this blog post I wanted to share a line from a special email I received from a friend.

**The world needs more strong, beautiful women so  be proud that you are raising one.**

#BEAstrong

XO

Hillary

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