weekly wears & update

Hi, Everyone!`  I hope you had a fab Labor Day weekend.  Ours was very low key (surprise, surprise). Since we can’t take Bea anywhere (with the exception of my parent’s house and Jordan’s parent’s house), we hung out with family and hung around the house.  It was such a nice weekend being together.

So, a little update on Bea.  Bea had the biopsy a few weeks ago and the results came back that she had some congestion in her liver.  They put her on an anti biotic for 10 days and her numbers were getting better.  After going off of the antibiotic her numbers started going back up again.  She had 2 lab draws last week and one yesterday.  Still high and getting slightly higher.  Obviously not what we want.

We talked with our doctors at our clinical appointment on Friday and they said that if her numbers were still high Monday (which they were) then we would move forward with an ultrasound.  She has her ultrasound scheduled for tomorrow morning (Wednesday) and should know more then.  Our doctor thinks it could be a bile leak and if it is, she will have to get a drain put in for 6 weeks.

I am still hoping and praying that it isn’t a bile leak.  If they have to put the drain in it’s just another thing that she has coming out of her body and another thing standing in her way of rolling over and crawling.  I hate to even think of it setting her back an entire 6 weeks.  At the same time, there would be tiny comfort in knowing that they found the issue and that we can fix it.  There would be nothing worse than her numbers continuing to climb and NOT knowing why or how to fix it.  

As I write this I am still processing the pros and cons of the whole situation – it is exhausting.  

Obviously very frustrating but, again, all of this happens as we work towards her recovery.  The doctors told us that the first 3 months are pretty dicey so we are just continuing to put our heads down and work through it all.  Once we are past the 3 month mark post transplant, our next big milestone is 6 months and then a year.

Good news is – we had a major moment this week.  After much hard work Bea rolled over!  This was major because she has hated being on her belly because it hurt her and it was almost impossible to roll over because it was so swollen.  Well – not anymore!  See a little video below :).  Other goodness – they are still weening her off of her steroids.  If everything goes as planned she will be off of them completely in 5 weeks.  She has done such a great job of gaining weight but her height is still stunted because of the steroids so we are anxious to get her off of them.  Her blood pressure has been good so they brought her down to only 1 dose a day of her blood pressure medication.  We are slowly coming off of medications – right now she is down to 6 medications (some of which are 2x/day). 

I just keep thinking of Bea on the beach next summer – 1 year post transplant.  Jordan and I looking at her with such pride knowing that her 2 month old self successfully fought through more than most people on this planet.  She will be walking, chatting, and we will be thankful.  

During all of this craziness, THAT is what I keep me eyes on and what helps me to #BEAstrong. 

[The noodle – 8 weeks post transplant]

[One of my new favorite quotes]

[Having a snack with my shadow]

[Our new porch swing]

[And her favorite new bib 🙂 ]

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