Daily Living with Grace

I cannot believe we are halfway done with this journey here in Baltimore! I do feel like we are making some gains here and I am thankful God placed Kennedy Krieger Institute in our life. First of all, I only wish we could have started this a few years ago because when I am on the CMV mommies page on Facebook, I see what other kids with her same symptoms and diagnoses can do versus what Super K has not yet accomplished. "But Wendy, you shouldn't make comparisons!" Yet all parents do. Some days I think maybe I have let her down by not being pushier about her therapy, but then again this has been uncharted territory every single minute of her life. No two CMV kids are alike in their ailments because each brain is affected differently. Once again I am so thankful we are at Our Children's House. It is a nice walk to and from therapy and the weather has been pretty amazing. When we got here it was Texas hot and then it cooled off really low, only to level off to really nic

When we arrived here in Baltimore on Sunday, I didn't truly know what to expect, but have had high hopes everything will be great. I mean, we got a room when we didn't think we would and Kaydence had been eerily good all the way here except for the one meltdown. Monday morning, I put my dad in an Uber to the airport with a printed plane ticket because there was no way I was going to trust him working any new app on his phone at such late notice. Even Dad was like, "Nooooo. Don't trust me with an app." It makes me chuckle just thinking about it. We got ready for the day. I was pleased to find that all of Kaydence's breakfast essentials were available in the house already. I just needed to get her some whole milk and make sure we don't run out of Carnation. That was another super blessing. We made our way to the Kennedy Krieger Institute on foot. Yes, we walked. That may be my favorite part of where we are staying. We stayed in an office and met all of our

As I am writing this, it is the end of day two of traveling to Baltimore. Let me tell you, it has been quite the adventure. When you are dealing with a medical relocation with kids, you are usually referred to the local Ronald McDonald House for that temporary housing. Since we have been working on this for several months now, we have had a referral in for a while...or so we thought. The catch to this type of housing is that you cannot find out if you have been accepted to live there until around 48 hours or so before you arrive. I was told to call on Thursday to check on our acceptance. We had referrals to both RMH and a place like it called Our Children's House. I called RMH and the sweet woman told me we were on the waiting list, and she would send me a list of hotels with which they work, to give me a discounted rate until we could get a spot there. I was good with that answer. Then I called Our Children's House and found out our referral was never received. Now, back up

The beginning of the school year will be off to a very different start for our family this year. The big kids will begin school on August 14, while Kaydence will not. Instead, she will be gearing up for a month-long trip to Baltimore yet again. We were supposed to go in May, but Tommy's employer changed insurance carriers May 1st. I know it sounds strange, but that is when their insurance year begins, however deductibles follow the calendar year. So we changed from United Healthcare to Blue Cross Blue Shield. The jury is still out on how much I like dealing with either company, but I am thankful and grateful to have health insurance - especially for Kaydence. But since the change was effective May 1st, we wouldn't have pre-authorization for the therapy program through BCBS, and we were originally scheduled to begin the program the last day of April. Kennedy Krieger doesn't offer her particular program in the summer, so we had to wait until August. So here we are. This t