April 17, 2016

The tough update

It's a little late coming, but I wanted to do a quick update about our last visit to U of M since so many have asked us about it. I'm constantly amazed by how many people still care about our family and Meili's progress. We've been at this for over three years now...three years of appointments, therapies and searching for answers. At times it feels like drudgery for us, but the emails, messages and personal interactions remind us that we still have people in our corner.

We had a full day of appointments, beginning at 9am. On the list for the day was a re-evaluation with her pediatric GI, an appointment with the adoption medicine doctor, a follow-up with the child psychologist and then a replacement of her feeding tube (apparently, after several months they are typically replaced anyway, because despite routine cleaning, build-up occurs and they begin to get clogged more often).

Looking a little chunkier


The good news is that Meili gained about 5 pounds during the three months she had been using the feeding tube. Considering we actually were only able to use it about two of those three months because of our previous feeding tube fiascos, we were pretty pleased with that and so was our doctor. On a more practical note, we are happy that her underwear isn't baggy and her pants are finally staying up. It sure makes getting dressed and out the door during the crazy morning routine a lot easier!

Checking to see if the J-tube was still properly placed. We thought it had likely shifted into her stomach, and if that was the case, planned to request a G-tube instead since insertion of G-tubes is typically easier. It hadn't, so we kept the J-tube.
So for now, the plan is to continue using the tube for another three months. If her progress continues at the current rate, we will begin to back the feeds down after our July appointment and see if she will start consuming enough orally to keep up with the growth.

THE OTHER APPOINTMENTS (and the hard part):

We've mentioned before that we are amazed with the doctors at U of M. They work together and collaborate like nothing else we've ever seen. It's so refreshing to see a team of doctors and know that each one you talk to knows exactly what the last one you saw said and did. We trust this team because of their knowledge, expertise and experience, specifically with internationally adopted children. They understand the trajectory you can expect for these kids from hard places. They see it and live it day in and day out. They get it. After four months of working with them, we are finally beginning to get a clearer understanding of Meili's history, traumatic past and her future. We needed them to be straight with us.
And they were.

We were told, that we can expect life-long struggles for our little girl.

In all honesty, we knew that. But it is still so hard to hear someone say it.

Heartbreaking, really.

We've gone through a range of emotions; both of us in different ways. Maybe eventually we'll share some of them. Maybe more about it all. This is why this post took so long to write. How much do you tell everyone...and when?

We wanted to share enough, so that those of you who are in our corner can continue to pray for us, because in spite of all of this, we still believe that our God is able to do immeasurably more than all we can ask or imagine. Please keep praying, not just for us, but for all adoptive families. We truly need and appreciate each petition more than you can know.

1 comment:

  1. Thank you for sharing your story . . . know that there is someone thinking about and praying for you and your family.