PELD of 40 approved!

Friday I received word that Zoe's score was approved at 40 points.  That means we could get the call any time!  I started packing a bag so we have it ready to go.  

The NG tube has helped us to get all of her ounces in.  It isn't fun, but I am thankful we don't have to do the NG AND the PICC at the same time, that might put me over the edge!  One good thing about the noodle is that it makes it super easy to get her meds in, rather than putting them in her bottles that she isn't wanting to drink anyway.  

She is only wanting to take 2 ounces MAX at a time, sometimes only half, sometimes 1.  It is crazy to see her go from eating pretty well to having hardly any interest.  The one thing she is still interested in is table food, so we are happy about that!

Zoe turns ONE this week.  My mom has taken over getting a cake, putting together a celebration with the grandparents.  I haven't even been able to think about trying to put together anything for her birthday because things have just been so crazy around here.  Seth and I had an extremely stressful day yesterday, but we are ok now today.   

Brody was out most of last week and had 5 days of a fever.  We went to the doctor yesterday and his rapid strep/mono/EBV tests all came back negative.  They didn't have the rapid flu test, so it could just be that.  I was very concerned about his swollen lymph nodes in his neck.  They were huge and he has been talking funny.  His fever got up to 105 last night, and we decided if it comes back at all, we need to take him to the ER.  So far this morning, he's feeling a little better and the fever seems to be gone.  I hope it's for good!  

I REALLY hope the rest of us don't get it.  Like really really really hope.  

I want spring.  

Here's a really good video showing whole liver transplant.  This may not apply totally to Zoe, since the Kasai procedure hooked her insides up differently: (I am not sure if the captioning is working or not)

 
And another that explains biliary atresia.  Again, not sure if the captioning is working:
 
 
And here is a video of Zoe telling Seth how big she is!
 

 

Thank you for the continued thoughts and prayers.  

 

 

 

Comments

    Leave a Comment