If you haven’t seen Ben in a while, the first thing you will notice is how skinny he is. When we were at the doctor the beginning of January, he weighed 113 pounds. I am sure he has lost more than 5 pounds since then. Eating has become more tiresome and more difficult for him. I have taken the dinners off of the LotsaHelping Hands website until we can get a better handle on what he can and can’t eat. Right now there doesn’t seem to be a real rhyme or reason to what will make him choke. Lunch seems to be easier for him to eat and the only thing that we can think of is that he isn’t as tired. Ben’s favorite thing to eat lately is Culver's frozen custard. Funny because he never used to like sweats and now he has a sweat tooth.
Ben fatigues easily, his voice fades quickly and he has very little use of his legs. He can stand to go to the bathroom but that is really about it. He is having a harder time using his wheelchair. Last week his sleeve got stuck on the joystick and he was rearranging furniture. We have to help him move his hand and arm to get to the controls. We have had a couple of switches added to the wheelchair so that Ben can turn the power on/off and recline by hitting them with his leg. Technology is an amazing thing.
Because of the choking and Ben’s overall weakness we have put a DNR in place. This was a difficult decision to make but if paramedics are called and CPR is done correctly, ribs will be broken and that is something that Ben will never recover from. We have discussed this as a family and the boys understand it as best as they can.
We continue to spend as much time together as possible. We saw the Avett Brothers two weeks ago; we are seeing Jersey Boys tonight, we have the DBT show with over 30 family and friends to look forward to the end of March and then are taking the boys to see Ben Folds play with the symphony on April 12. Honestly though, it’s the quiet times at home that mean the most. We laugh a lot, watch tons of movies or sports, & Ben and I are now hooked on Dexter. We try to keep things as normal as we can, as normal as we can be.
Save the date…The ALS Walk in Springfield will be on June 7 at Southwinds Park. Our friend, Angela, is setting up an Open House at the Secret Recipes Reception Center for afterwards. I’ll pass along more specific details as I get them. We always try to have the biggest team at the walk. It means a lot to have your support.
I hope that you all get time to enjoy the nicer weather this weekend.
Hug your kids,