Never thought it would happen

This has probably been the busiest week on record or maybe it's just because I have been more exhausted than usual that it seems like a lot more to do.  Finally, I think we are ready for the big trip.  On Friday, I wasn't really sure it would happen.

As I finished up the last of the 'to do' list, I couldn't help but feel like this is a much harder trip to get ready for physically and mentally than the ones in the past.  Perhaps it's because this one holds potentially more answers, more diagnosis.  My response when people say, "Wow, that's a big thing you guys are going to have to do." has always been, "Oh, we are use to it, it's just the way it's always been." 

As I uttered those words, today in fact, I knew in my heart I was lying.  I never get use to this.  I never find pleasure or joy in this and it takes every ounce of mental effort I have to get through it.  One person even said, "Well, have a good trip, sounds like lots of fun!"   At first I thought he was joking, then I thought he just didn't know what was going on though I am pretty sure he did and then I just decided to stop wondering why that comment seemed so incongruent and laughed and said, "Ya, it's going to be awesome!"  AWESOMELY EXHAUSTING...NOT FUN.

Actually, I do hope to do one fun thing with the kids while we are there, maybe just before we come home when they can walk around without too much pain.  They have always begged to go to the aquarium.  We had a chance to earn a little extra money this week by weeding the townhome complex where we live so that is our Aquarium money. 

Anyways, laundry is done, house is scoured, fridge cleaned out, snacks are packed, one kid is packed and about 8 hours worth of medical record collecting is done.   I made folders for each one of the kids that I will give to each one of the specialists we will be seeing so they have a complete timeline of what the kids' life has been like.  I also included a 'rap' sheet of the most recent complaints over the past 6-12 months along with all lab reports.  I made another sheet specifically for each specialty and the problems the kids are having in those specific areas.  Along with all that, I made medication cards and contact information for each doctor on our care team in business card size so I can keep that in my wallet and just hand to nurses when we check in.  That way, they have all their medications, dosages and other pertinent information to record.  I just can't keep it all straight in my head anymore, there are just too many now to remember.  I hope I've covered all my bases.  It should make these marathon days at the hospital go alot smoother.

I am having people stay at the house again to take care of things so I have just a bit more cleaning to do, beds to change...etc. and get everyone packed but we're getting closer....


  1. I went to church with Seth today so I didn't get to see you and Shelbie. I hope that you have a safe trip out to Seattle and that the specialists will be able to answer the questions that you have and that the kids will be able to recover quickly. The aquarium sounds like it will be a great way to forget about all the medical stuff for just a moment. We will be praying for your family!

  2. It sounds like you have been extremely busy getting ready for this whole ordeal. I hope everything goes as well as it can and that you find some answers.

  3. I am impressed with your organization. It sounds like you have absolutely done your part, so now we will pray that the Lord will inspire the docs to get you the right answers. Good luck!

  4. Good luck or text me once you arrive OK?? Thinking about you all and hoping for a successful trip. Love you. TB


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