Finally an update!

I can’t believe we are almost half way through the month of August. Delia’s birthday is next week and I have never been so excited to celebrate one of my children’s life. She has a couple of amazing friends who are quarantining for two weeks just so they can come have a sleepover with her on her birthday. She is so well loved and I am constantly in awe of the little friends God has lovingly placed in her vicinity.

We’ve been doing blood draws every two weeks for a little while now. It’s really great to be able to space them apart like that. It’s not necessarily easier to go and get it done, but at least it’s less frequent. There is one lovely phlebotomist who has taken us under her wing and tries to do our draw whenever possible. She is so tender and sweet with Delia. The consistency of having the same person has been wonderful as well.

We had a doctor’s appointment last week and Delia has officially surpassed her weight from pre admittance. This is especially fantastic news since she was so swollen with extra fluid at the time. She looks healthy and it’s so good to see. All her liver levels look so good we got to take off TWO of her meds this week!!! She’s been needing to take meds 6 times a day and now we will be at only three meds four times a day. One of those meds she will also be eventually taken off of and we will only have the two meds (unfortunately they need to be taken an hour apart every 12 hours) that she will be on for the rest of her life.

Her blood levels are still not in the normal zone. Her platelets have remained stable but just under the “normal” level. They are not concerned with the level at this point because they have remained stable and at a decent level. I am still praying that the lower level can be explained by her increased spleen size. Her white blood cell count is low. It has been doing this roller coaster between being almost normal and not quite too low. They said one of her meds can drop her white blood cell counts and they could take her off of it to see if that’s the case, but it is one of the big anti rejection meds and since her liver is doing so well they don’t really want to mess with it. So, we wait and watch. I wish I could say I was getting better at that.

Overall, we are doing okay. We had to quit our home school community because we just need to be so careful with her, especially since her white blood cell count is so low she’s so susceptible to any sort of germ but we have some wonderful friends who are conscientious and careful and have helped with Delia’s mental health. We are grateful that we have space to run and a few people we can see.