Here is an account of our roadtrip from California to Minneapolis:
Day 1: And we are off to Minnesota! Our first stop is Twin Falls, ID. We got an apartment in St. Paul and we are still waiting on our donor’s physical, so we are taking our time driving from California. Kiira is staying healthy despite the sickness that has passed around our family over the past 2 months. We hope to keep her strong so she can make it through chemo as easily as possible! Our first day was a very long drive through Nevada. The scenery was beautiful, but lonely in that there were hardly any cars and no houses or towns. I’m not sure which I heard more: “Mommy?” Or “Are we there yet?”, but the girls were troopers! We arrived around midnight and took our time in the morning so that we could be rested for our next stop: Craters of the Moon, ID.
Day 2: Today we explored Craters of the Moon and drove through the surprisingly beautiful state of Idaho. We encountered rain several times–we wish some of it went to Ca! We had dinner in Jackson Hole, Wy and by the time we arrived to our hotel in Teton Village, it was another late night. We saw a marmot, bobcat, deer and elk, but we are still on the lookout for moose and buffalo! Kiira was so great all day and we find that doing her bandages early in the morning, makes the rest of the day much more pleasant. Taking this road trip is a great mental break from what we are about to put her through. We love exploring this country!
Day 3: Today we took a much needed day of rest. We slept in, ate a leisurely breakfast, and the kids played in the pool. We planned to drive through the Teton National Forest, but unexpectedly, Kiira threw up, so we had to give her a bath and redo the dressings on her hands. We drove for about an hour to get some beautiful shots of the mountains, but we decided to turn around and complete the drive tomorrow. Thankfully Kiira seems fine now, but again, we pray she stays healthy!
Day 4: Today we were overly ambitious in thinking we could do Yellowstone in one day. With the lower road to Old Faithful closed, we had to drive all the way around, adding about 2 hours to our drive. Then we added all the stops to see buffalo, sulfur pits, and waterfalls, and we didn’t even make it to Old Faithful so we found a hotel at the West entrance in Montana and will try again tomorrow. I’m not sure everyone in my car likes my “fly by the seat of my pants” attitude this trip (usually I’m a huge planner with an itinerary), but we’ve seen God’s incredible creation, had some family time, and we still have a warm place to sleep each night. Counting my blessings!
Day 5: We started the day with the goal of seeing Old Faithful so that we can continue driving East. It was so cold, but only had to wait about 25 min for the geyser to erupt. The kids just wanted to eat snacks in the car, so they cared less, but I was excited to see it. Then it started pouring so we started our drive to Cody, Wy. Unfortunately, or maybe a part of our adventure, the bison were slowly walking the roads today and added 90 minutes to our drive. It was really fun to see them so close though. Our drive through East Yellowstone was so different. We saw the devastation of fire and lots of snow. We exited Yellowstone and entered a new area of Wyoming that had lush fields full of deer, sheer cliffs, and huge ranches. We have 3 days left before we get to Minnesota, so I’m trying to soak in the landscape and relaxing days in the car, before our days are spent looking at hospital walls. Please pray that the donor’s physical comes through quickly and she is ready to go ASAP and that Kiira stays healthy in the meantime.
Day 6: We spent nearly all day in the car today. We encountered rain, snow, deer, more Bison, coal mining cities, and a fog-covered Mount Rushmore. It was pouring rain, but we went anyway, just to say we’ve been there. Unfortunately, we could barely make out a face. I think everyone is about done with this drive, but I’m not. Because I know what happens when we are and I’m not ready. EB scares me, but putting Kiira through a BMT scares me too. I know God opened these doors for us, and I have to believe it’s to make not only Kiira’s life better, but help be a part of a cure for those suffering with severe genetic diseases/conditions. I just need to feel that peace now! Did I mention that Kiira’s upper lip is fusing to her gums? I keep fearing for her fingers and toes but didn’t realize how quickly it can happen in her mouth. There are no bandages to try to prevent that! So I guess it’s best we get to Minnesota sooner rather than later…
Kira has started this really loud squeal to tell us she is hungry or tired. It is quite ear-piercing in the car, but her sisters are doing better as the week goes on and it’s been fun watching them come up with games to play. They have told us a few times that they want to go home, but we tell them we are headed to our new home. I’m sure it will be an adjustment for all of us! We do love the lack of traffic and 80 mph speed limit though.
We arrived in Minneapolis and to our new home! Everything is unloaded (in the pouring rain), and now we are taking a trip to Ikea, grocery store, and to pick up our generously donated couch from Prayers for Cole, a baby with HJEB, who started work up for his BMT today. The girls are excited about their new home!
Last night Kiira threw up again after feeding her rice cereal (the last time was several days ago). I don’t know if it’s EB related (throwing up food can be due to strictures), or if she is allergic to rice or if it was due to the milk I put in (although the first time was breast milk and second time was formula). So just pray it’s not EB related.
We have another prayer request: I heard from the hospital and they have been unable to reach Kiira’s 8 of 8 match. Since she is a complete match, Dr. Tolar wants to wait and keep trying to reach her. Please pray that she is willing and able to donate ASAP.
Thank you all for your prayers for us during our trip. I’m glad we have some time to get settled in before jumping into the hospital routine, so I know God’s timing is coming into play, but I just want to make sure the best match is available for Kiira to have the best opportunity of coming through this BMT.