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It's crazy to think we've been here almost 4 weeks so far. We are just plugging along, with not much to report. I’ll list a few highlights (and lowlights) for those wondering what we’ve been up to:
Nathan Barr
Chicago, IL 60611
It’s been good to have the other kids up here the last several days. It's a different kind of hard to juggle all the people, but we're thankful to be able to be together and for Ramona to see her siblings regularly. We're hoping we'll get into a routine that will make us feel less scrambled, especially as we balance Nathan working remotely and our homeschool year starting.
- We moved rooms at the hospital. They have overflow from the cardiac floor in some spare rooms a couple of floors down, and they move their stable long-term patients down here when they run out of space upstairs. Ramona was super excited to move, because we ended up right next door to one of the friends she has made here! It’s also MUCH more laid back and quiet down here. We were sad to lose our bathtub and great view, but it’s really been a good move for us.
- Our days are pretty quiet from a medical perspective. She gets vitals and meds at set times each day, but other than that it's labs on Mondays (the worst) and an echo once a month. She also needs to get a few vaccines before transplant, so they're trying to get those done, which has possibly been worse than labs. I generally feel like we’re doing pretty well...until it's time for a poke. Then it’s misery and I cry for home and heaven. I have never longed so deeply for the wholeness of heaven as I do in this stage of life.
- There are a lot of fun things to help pass the time during the week. Ramona especially loves playing Bingo twice a week, but there are also crafts and activities, art therapy, a play room, video games, trips to the cafeteria, etc. They also have special events, like “Lurie-palooza,” dance troupes, and magicians. She has also really enjoyed the thoughtful care packages that have been sent our way.
- We recently celebrated her big sister's birthday, and Ramona spent days preparing for it. Almost every craft project she made was made with Daisy in mind - some as gifts and some as decorations. She used her batik dye project to make a banner to hang up, which was particularly beautiful. She wrapped the presents she made in paper towels, and used pipe cleaners to make little dolls and hearts for a party game she made up. The night before we celebrated, she made a list of everything she needed to do or set up in the morning before they got here. It was all just so precious. She loves her family so much.
That pretty much sums up what we've been doing. As far as HOW we've been doing, this is just a really hard season. So much to juggle. So many feelings (from so many little people). I just continue to pray that God will work all things together for good, and that his abundant grace will cover all of our short comings. I don't know what people do without the hope we have in Christ, because I would be lost without it. Overall, I would say we’re doing better than I would have expected, and I don’t doubt that that is because we are so faithfully covered in prayer.
We also want to say thank you again to those who have reached out to us in any way. Whether a text, card, care package, etc. we appreciate it! For those who have been wanting a way to help, we are pretty limited on space here, but small items, gift cards (see list below), or money for parking, food, and other expenses would be great. (*Please don’t feel like you have to do anything, but those are what would be the most helpful to us if you are interested.) If you are wanting to provide a gift card, here are the stores/restaurants that we can walk to easily from the hospital and RMH:
Whole Foods
Trader Joe's
Walgreens
Chick-fil-a
Subway
Starbucks
Dunkin Donuts
McDonalds
Taco Bell
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