Cha Cha Changes…

It’s been awhile huh? May was a very busy month for us. Where do I start?

We started the home remodel at the end of April so we were in full remodel mode come May. The plan was to completely remodel the bathroom to make it handicap accessible, add hardwood floors to the master bedroom, the Little He’s bedroom and man-child cave, and my office. We also had french doors and a wheelchair ramp added to our master to provide egress for the Big He in case of an emergency, all the doors widened to 36 inches and a new door added from the garage to the home to accommodate an easy transition from  the garage and lift to the house. We temporarily  placed our bed in the living and moved the furniture around to make room for the bed. I pretended that it was like a huge suite at a hotel, only problem is that I kept hanging that dam tag on the door for maid service and no one ever came to make the bed and fluff the pillows. I was never really good at  pretend.

As you know from my previous post, May was ALS Awareness month. We were fortunate to be asked to attend the ALS Association Advocacy Conference in Washington, D.C. So during construction the Big He and I along with Frank the Tank took off to D.C. The Little He had school and stayed home. Let me just say, that trip was a fun adventure. We knew we would probably run into issues as this was our first time hauling a motorized wheelchair with us so the expectation of a hassle free trip was pretty low. The airport and United Airlines in ATX did an amazing job with Frank.  Frank did require a bit of a modification as we had to take the back off and lay it down so it would fit in the plane, but other than that, it was great. When we arrived in DC, the ground crew was waiting for us with a picture of Frank and I was asked to go down with them and help put Frank back together.  How cool is that?  Once Frank was reassembled, it was off to the hotel where we had a great view of the Washington Monument. I could make a post just on the trip because of how amazing it was but a quick summary is that we fully enjoyed the conference. I learned a lot about advocacy work, we met so many wonderful pALS and cALS and was able to talk with lots of Veterans and share with them about the work The Independence Fund does with Veterans and Caregivers.  Of course, Frank the Tank was a hit and most folks were surprised we brought such a big chair. If you have not figured it out by now, the Big He and I don’t always do what is expected and pretty much see a “can’t” or “shouldn’t” as a challenge we will gladly accept. The ALS Advocacy Conference was an amazing experience.  Some of the highlights of the trip were:

  • Spending some much needed alone time together
  • I surprised the Big He with a tour of the White House thanks to our friends Jake and Jenn.
  • I had another surprise waiting for the Big He when we went to Capital Hill. Senator Cruz’s office had an American Flag flown and presented it to him during our meeting.
  • We were able to have dinner with a military friend from our days in Guam. We loved visiting with John and hope to see him again soon at the upcoming 2017 Deployment Reunion.

A pretty significant change in May was that the Big He had to get his feeding tube placed. Not so much because he can no longer eat but because his respiratory function has declined prompting the need to get the procedure over with.

There are other changes we are seeing in the Big He like his voice is beginning to become weaker. It is more noticeable when he has been talking a lot which we are lucky he is not a talker so that doesn’t happen too often.

Finally, a HUGE family change occurred at the end of the month. Our baby boy finished middle school and is off to high school. I am still in shock about that. I mean, how can they let an infant into high school. It was only yesterday that he was born, right?

Well I think that covers it. I know I was not very good about the whole keeping you updated. Life just became too much for me and couldn’t find the time to post. Well, also I just wanted to post cuss words but didn’t’ think that would have been much of an update, it would have been therapeutic thought…which is why my journal is covered in them.

Until next time. All my love,

The She.

When I get a chance I will post some pictures of our DC adventure.


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