Sunday, August 22, 2010

Anyone Have a 2 x 4?

Will and I attended Faith Presbyterian this morning. When you are in a distant city, you don't often feel at home. But walking into Faith Pres is like walking into home. I felt like I met half the church this morning, and it was the half I didn't meet last time! When Beth walked up and introduced herself and said, "I read your blog." it was a bit surreal. Really. I have never before met you. But even though they don't know us, they are a determined bunch...determined to care for and support us and love us as best they can while we are here. And we are apparently going to be here a lot!

Friday I wrote an update about Will's doctor appointment and the fact that we are apparently going to be on the frequent Angel Flight plan for Cincinnati. I was totally overwhelmed with how in the world are we going to do this. You know, I have not panicked over much of this. You just do what comes next and keep going. You trust that God has a plan. Occasionally, though, the numbers get a bit overwhelming and you have no clue how to move forward. That happened Friday. Will was upset. I was overwhelmed.

Then the most interesting things happened. :) We met a mom who was here with her 2 yo who was being evaluated in the EE clinic. They were brand new here and had no contact with anyone else with a chronically ill child. They joined us for dinner in the bar (where I had hoped to watch the football game) and we chatted for ages. Her mother-in-law reminded me of Billy's mom. She introduced herself, but ensured me that I knew that she loved Emily as her own. What a huge blessing! She had flown in from Key Largo to help.

Then this morning, we headed to church. That is a blog posting all its own, but the short version is that I have never been a second time visitor in a church and felt so incredibly welcome and at home...and cared for. It made leaving so difficult. Will wasn't feeling well, so he is non-communicative. (You ALWAYS know when Will isn't feeling well! If he is quiet, it is never good!).

So we got back to the hotel where we scavenged in the fridge for lunch, got Will's IV started, then I went for a run. I felt so much better. Becky Riggs asked if we would like to visit them for dinner...yay! Friends!

Despite the fact that Subways are apparently closed on Sundays here in Cincinnati (apparently I missed that memo!), we finally found an open one, picked up a sub (meaning safe food) for Will, and headed to their house. Will was very comfortable hanging out with Scooter, their dog, and Becky and Keith just made us so welcome. (But I owe Becky a vacuuming job since Will rubbed the fur off the poor dog!)

Back to the point...Friday evening I was totally overwhelmed. Then we met a mom who needed to not feel alone. Then Saturday, we met Becky and Brian(which made me feel much less alone) and received a text from Becky R that stated help was available. (Are ya listening yet? You aren't alone!) We attend church where we are surrounded by people who just take us in and love us for where we are and promise to help when we return next. I went from being totally overwhelmed by "How are we going to manage this?" to being very clearly shown that we are not forsaken but very dearly loved.

We may be far from home and enduring countless struggles, but we are so very blessed. The Lord definitely used the last two days to remind me that while we may be here without our family and in an impossible financial situation, He is right here with us, meeting our physical, emotional, and spiritual needs...and doing so abundantly. Why do I allow myself to be overwhelmed and fearful? I mean, really, if you read far enough back in this blog, you see His constant provision...I am apparently a very slow learner. :)

Friday, August 20, 2010

Oh What a Day...

There are days...and then there are days. You wake up in the morning all chipper and singing...and then it starts. Today wasn't really all that bad, but it wasn't all that great either.

William is not handling this travel well at all. He just feels rotten all the time and it seems beyond my ability to know how to manage it.

We went to the doctor this afternoon and basically blew the PA out of the water with Will's medical history. I think he was truly relieved when Dr. Crawford walked in. :) Dr. Crawford, as always, was such a gentleman. He had a visiting physician from the Netherlands with him, so he asked Will what language is spoken in the Netherlands. When Will correctly answered "Dutch", Dr. Crawford laughed and was so surprised that Will got it right. It was fun to watch. Then began the painful conversation that yes, things are progressing, but no, this brace is not coming off. When actually asked specifically, we were finally told it would likely be 9-12 months total, so it may be anywhere from December or April before it comes off. William had a hard time handling that tidbit of information. It would have been so helpful if Will could have been prepared for that information prior to this point, but no one would ever provide it when asked. It is the first time that question has been answered concretely.

Which means...that we will be traveling here every five weeks for months to come. Which means...I have no idea how we can continue doing this. We truly cannot afford it, and Will cannot constantly react to the travel or food or whatever this is.

Chatting with Erica, the nurse, we talked about the struggles Will is having with food, and she recommended an allergist. Our allergist is not at all well informed regarding autonomic dysfunction, so I asked Erica for a recommendation. Hopefully we will obtain an appointment that can coincide with our other visits here...getting answers would be really helpful. She is concerned that Will has progressed to EE (eosynophilic esophogitis) but we aren't headed going there just yet.

So begins the research to determine what our options are. If we could leave a car here, then it would mean no car rental cost. If we had an apartment, then we could cook our own food. But apartments are not cheap. There have to be answers...but right now all I have are questions.

Tonight is the Bengals' (a pro football team!) pre-season game, so Will and I are gonna watch it in our room while I peruse classified ads and check options...and maybe even knit. No really. Knit. The thing I seldom have time for but remember enjoying. :) Hopefully it will be a quiet evening with a reasonable bedtime that will produce true rest...

Thursday, August 19, 2010


We are once again in the fair city of Cincinnati. Matt, our favorite Angel Flight pilot, flew the first leg, then Brad met us in West Virginia for the second leg of the trip. He was so pleasant and had a great sense of humor. We landed in Cincinnati and grabbed a late lunch at the restaurant, then headed to Target for Will's daily intake of Gatorade. Midway through Target, it was very apparent we needed to get to the hotel soon. He was fading quickly and needed fluids. So we head directly to the hotel where we discover that they only have king sized beds available tonight. You are so kidding me, right? This kid wakes up sideways in the bed and I have to share a bed with him? It is gonna be a long night...

William is now hooked up to an IV. He is looking better but it appears that our curiousity over his crashes occuring after eating is again substantiated. He does this but mostly when we travel. So, we are fairly certain that there is something prevalent in the restaurant food to which he is allergic. Finding out what that is is going to be a challenge. Avoiding it while traveling is an even bigger challenge. I have a feeling the road to Whole Foods is gonna be a familiar site to us. Finding a place where we can prepare our own food may become essential, but how that is gonna work is totally a mystery at the moment.

We see the orthopedic tomorrow. I seriously doubt that William will be allowed out of this brace, but he is ever hopeful. We may need to run another bag of fluid tomorrow before we leave, so I am glad that our appointment isn't until after 3.

On a lighter note, as I was frantically running around the hotel getting rooms moved due to the lack of a refrigerator (which we need for the IV fluids), Will waited in the first room because he just was not up to walking around. There is security all over the place...not armed security, just lots of employees ensuring that everyone is doing what they should. I ask what is going on, and aha! The Bengals are staying at my hotel. Oh, really. That explains the incredibly enormous fellows in the elevator with me. I do mean enormous. Not enormous as in wide, just enormous as in tall and a force with which to be reckoned. I was ever so grateful they were friendly 'cause I was feeling a bit minute next to them...and the only female in the elevator. Oh, dear. They simply smiled and said, "Hello." Although, I now know why the hotel has a great gym! :)