Thursday, January 15, 2015

Day 55

We are past the halfway mark to day 100! The first 100 days after transplant are the most significant, though admittedly the first year post-transplant is still super important in terms of minimizing Ava's exposure to germs and keeping her infection-free.

This week has been a pretty busy one with various visits for everyone. Ava will be in clinic every day this week (she will end up going tomorrow to check a drug level). The LP and chemo yesterday went really well, and in general, things seem to be going okay.

Ava continues her slow steroid taper (very slight dose decreases every 5 days), and so far she hasn't shown any signs of GVHD flaring up again, so that is good news. Thanks for your continued prayers that her GVHD be under control.

Ava's spirits are improved with being out of the hospital, though it's still a struggle for her to deal with the changes in her appearance, as those changes won't go away overnight. We continue to pray that God would give her comfort and assurance deep in her soul that she is beautifully and wonderfully made, and to find joy each day.

Esther has another OB/GYN appointment today. Baby Boy Lee's due date is in a couple of weeks! (Of course, we know that babies don't have a care as to what our timeline or calendar is!) Esther continues to have Braxton-Hicks contractions (we think), and it's hard to believe there will be a new addition soon. Lots of transitions underway.

In general, it's been a little more difficult to be in communication with the Lees now that Ava is out of the hospital. When Ava was in the hospital, there was usually some down time to catch up, even if late at night. However, they do not have the best cell reception at the apartment. So, unless I'm able to catch up with them during the day while they are out and about, it's unlikely we'll be able to connect later in the evenings. Thank you for your patience as we work these things through.

As always, your continued love and prayer support are an incredible blessing! Thank you for persevering with us.

I'll leave you with a couple of posts from Esther:

Throw back to healthier times.
Hoping for many more years with these precious people.

(And a fun conversation Esther had with Ava):
I was feeling some mild cramps. So I asked out loud, to no one in particular, "How can I tell if these are cramps or contractions?"
Ava nonchalantly says, "Time them."

Um. Ok. Too much exposure to the medical world?
‪#‎kidsthesedays‬ ‪#‎doctorava‬

No comments: