Little Postcards from "Holland": Keep Austin Weird

So much has happened this summer, and I have intended to blog about it all. I have gotten a little bit behind. Normally, I would try to jam everything into one post, but so much has happened, that I think I'll split it up into different posts. So I'm going to play catch up a little.

A few posts ago, I told you about the crazy plans for our summer. I knew it was going to be a busy one, but I was looking forward to it. The main thing I was looking forward to was the therapy John was going to get in Austin. It took months to put everything together. I spent time almost every day working out some detail of the trip, from dates for the therapy, to what hotel to stay at and how many nights we would stay, to what day we would head home each weekend. Well the day finally came. We loaded up what felt like the entire house and off we went to Austin. My niece, Jennifer, was coming along for the 3 weeks, and while I was very happy to spend time with her, I didn't realize just how big of a help she was going to be.

Pulling out of the garage on Day 1

We left on Monday morning, knowing that his therapy wasn't until 2pm. I tried getting an early check in at the hotel so we could try to at least get the car unloaded before therapy, but was told that they were fully booked the night before and wouldn't have our room ready until after 3:00. So I decided once we got into town, we would make a pitstop at our friend's house to eat lunch and get JT fed. It was sure nice to see our friends. Her son and JT were NICU buddies. That's where we first met and they have been wonderful friends ever since. About 1:30 we left her house to go to our first day of therapy.

Therapy went great. John was a pro. The first day was probably a little lighter than most because we spent the first 30 minutes going over John's history with the therapist. But he did great and I was excited to see the things he would be doing over the course of the next 3 weeks. We left the clinic at 5pm and went to check in at the hotel. That's when the drama started. The hotel had us booked in a different kind of room than what I reserved. Normally, that wouldn't be a big deal. I would have rolled with it and been on my way. But because I had made arrangements to have night time nursing for JT while we were there, I knew that I needed a room that had a separate bedroom so that we wouldn't be sleeping in the same room as JT and the nurse. So the desk clerk called another one of their properties who said they would have the kind of room we were looking for. It wasn't too far away, so I thought it wouldn't be a big deal. We get to the second property, and low and behold, they don't have the right room either. In fact. That hotel didn't even have that particular kind of room on their property. So after much frustration and talking things through with the manager, we made the decision that we would stay in two separate rooms that night at no cost to us, and then the next night we would go back to the first property who were definitely going to have the right room ready for us. When we got to the first hotel the next day, guess what? The room they had, was still not right. This had a separate bed, but it was all in one room. There was not a door to separate the rooms. So the manager got on the phone to a 3rd property and assured us they would have the right room. So we drive to this place, and were very happy to find out that indeed it was the room I was looking for. We finally got settled into that hotel that evening and it ended up being an even cheaper rate. That part was good. The part that wasn't so great was that it was in a not so good part of town. So we just made do and stayed in our room at night. We only ventured out during the day time. It wasn't a horrible set up, except that the only access to the bathroom was through the bedroom. So for the nurse's sake and JT's, I set him up in the bedroom and Jennifer and I slept on the sofa bed. FOR 3 WEEKS!

The rest of the week of therapy went great. JT was working hard and was doing a lot of great things. Going into this, I was so sure that he would get exhausted at some point and have a melt down in the middle of therapy. He never did. He worked hard every day and then came back to the room in the evenings and crashed early. He was cruising a long doing great. Some of the things they had him doing were so cool. The upside of being in Austin was that we got to spend a lot of time with our friends. They had us over for dinner at least 2 nights every week we were there. July 4th fell on Thursday, and because he had therapy again on Friday, we decided to stay in town rather than driving home for one day and then driving back. So we went to eat barbecue for lunch with them on July 4th. It was nice to spend some quality time catching up. After lunch, I took Jennifer and JT to the movies to see Despicable Me 2. It was super cute. Instead of going with our friends downtown for fireworks that evening, we stayed in and watched them on TV. Of course, JT crashed early.

Week 2 of therapy went off without a hitch. The hotel drama was behind us, he was doing so well in therapy and the week was sailing right along. I thought this is a breeze. We should have no trouble from here on out. Boy, I shouldn't have thought that. When we were leaving the clinic on Thursday, I was rear ended by a pickup truck while in the u-turn lane. This was not what I needed. There was not a huge amount of damage, but there was a nice dent in my bumper, along with some scratches in the paint and a little damage to the rear quarter panel. I knew it could be fixed easily, but I knew I was going to have to go through the headache of dealing with insurance companies in order to get it fixed. Ain't nobody got time for that. On Friday, the therapist who was working with him said she saw a lot of improvements in John's strength since the previous Friday. So I guess therapy must have been working.

Now it's week 3 of therapy. I was looking forward to see what the week would bring, but I was also ready to be home, sleeping in my own bed for good. This packing up and driving on the weekends was beginning to get old. I was ready for it to be over. Little did I know, the hard part was just beginning. Monday night, when I put John to bed, I noticed that his heart rate was a little higher than usual. That usually is our first sign that he may be getting sick. Tuesday at therapy, he was fine. He worked harder than he did any other day. He even walked for probably 45 minutes in a gait trainer. I just knew he was worn out and would crash that night. And he did. He fell asleep at 6pm. That's really early, even for him. His heart rate was high that night again, and by Wednesday morning, he had fever. That's just great. Not what we needed. We stayed in from therapy that day and hoped that whatever it was would just pass quickly. That evening, he was worse. So I made the decision to pack up and go home early. We were done with therapy and I needed to be home to take care of him....

Here are some of my favorite pictures from his time in Therapy.

Week 1