Shade's Journey: Hi again!

     I'm back! I don't think anybody reads this blog and that fact, along with life interfering, has caused me to stay away. I've decided to come back because I want to continue to document my son's journey and my feelings through all of it. It may be valuable to me someday, or to somebody else who happens to stumble upon it. First of all, I have to say that a lot has happened since the last time I posted here. I will update on that in the next post, but for this entry I want to go back in time to the evaluation in Minnesota. I want to keep this in chronological order and I really need to fill in some details about that time in our lives.

     It was July of 2013. Shade had just had his first attack in 5 months and we were in a hopeful, yet skeptical frame of mind. We thought that maybe, just maybe, he could continue the trend and we'd have far less hospital visits and bouts of severe pain for Shade. When the doctors and University of Minnesota Amplatz Children's Hospital told us that they felt it was wise to wait and see how the next few months went, I was really fine with that. The evaluation process was no walk in the park and the reality of the surgery was constantly looming. It's one thing to think about it happening and quite another thing to discuss it with the surgeon who would be performing it and to see the PICU where he would spend 2 weeks after the surgery. To sit and eat in the cafeteria where many lonely meals might take place and walk the halls that he would struggle to walk down during his recovery. To say it was difficult is an understatement. Also, the schedule for the 3 days was pretty demanding. Doctor's visits are never fun, but back to back visits with several specialists deciding your child's future is exhausting. We couldn't even fit lunch in on the day of his MRCP and the kind nurses brought us lunch in his recovery room. He had to be wheeled to his next appointment across the street in a wheelchair because he was still so groggy. Poor Shade had it the worst through all of it. We let him play his DS and his iPod during all of the appointments unless the doctors wanted to speak to him or examine him. Still, he was antsy and bored and tired of appointments. He was also tired of needles and tests. I don't blame him one bit, but it was all necessary. At the end of the day, we had no time or energy to do anything fun except grab some dinner and go back to the hotel to swim. We made sure to get a hotel with a pool so that Shade could have a little bit of fun on his "vacation". The hotel also had a bowling alley connected to it, but that didn't go so well. Shade was too tired and overstimulated by the day's events too really enjoy it. He had more fun in the tiny arcade there. When it was all over, we had to make the long drive back home and get ready for school. He actually missed the first two days of school because we weren't home yet. We tried to have fun on the trip in our own silly ways. We stopped at a rest stop in Wisconsin and bought two little snack packs of cheese and Dan and I ate cheese in Wisconsin. I also joked that I saw Big Foot in the woods as we drove by. Shade really enjoyed a plastic back scratcher that we bought at a truck stop in Illinois until he broke it and then he cried. It wasn't the most glamorous trip, but we tried to make the best of it.