Monday, February 20, 2012

Evolution of Sidney's Bailey Chair

Since we got Sidney's Megaesophagus diagnosis when he was 10 weeks old, we knew he would hopefully be growing and his Bailey Chair would need to grow with him. So what we did was make the Bailey Chair able to be very large, but adjustable to start out small.
The above photo is the first version. You can see it is kind of a "Bailey Chair made within a Bailey Chair." We left room so that the sides could get wider. We also made the holder for the Paw Bar (on the sides) able to be raised higher as he grew. We would just unscrew it and re-screw it at the proper height. We also made a back spacer that we inserted into the chair. We would make it smaller as he grew and then re-insert it into the chair.

Here is his first test after we made it. You can see how small he is in the chair - but the way we made the spacing and adjustable parts, he fits in there pretty well. We obviously over estimated the pillow he sat on - which we changed, eventually to a folded up towel. We did pad the chair with Gym Flooring from Dick's Sporting Goods that has held up very well.

Above is his first meal in the chair when he was just a little 14 pound baby. It took him a while to get used to the chair - but we sat with him the whole time and started out in small time blocks, building up to the 30 minutes we now do. It took a few months if I remember correctly.

So as Sidney grew, we made several small adjustments - making the paw bar higher and making the back spacer smaller and smaller. It was always a special day when we made adjustments. It meant we were having success in Sidney's health. He was gaining weight, getting nutrients and growing into a big boy. You can see from this above photo that it has been adjusted compared to the earlier pictures. Ultimately, once Sidney was full grown, we took the Bailey Chair and made the final measurements. Using the same chair and materials from the original version, we made the final version of the Bailey Chair, complete with a new paint job. The final photo is below. Sidney usually sits with his paws both up on the paw bar, but he is so comfortable in there now, he sometimes just relaxes with one paw on the bar. Whatever works.

So ultimately, we were able to make the most out of our situation. We were worried about the cost of building multiple chairs, but out of necessity, we figured out how to make this work. We even have his Portable Bailey Chair set at the final height and size as well (see below). So now both of his Bailey Chairs are working our well and so is Sidney.

Thursday, February 2, 2012

Our General Megaesophagus Routine

We spend a lot of time with Sidney, he even grabs his Penguins Stuffed Animal while we watch the Pittsburgh Penguins hockey games on TV. He is the #1 priority in our life :)
Of course Sidney regurgitated yesterday morning in a bunch of piles. But my little buddy worked hard to make sure he went onto the tile instead of the carpet. Like he knew it was easier for us to clean. It was mainly stomach acid. Recently he seems to be getting uncomfortable late at night and I see him sitting up vertical for a bit until he feels better. These are just minor occurrences and he hasn't regurgitated before that in over a month I think. But it did make me think just about our life with Sidney in general.
I do realize how much we base our schedule and life around Sidney. We just can't drop a bowl of water on the ground and some food and then go about our business. Everything is on a timed plan. He gets his 5mg of Bethanechol in some Knox Blox before Tiff leaves for work around 6:30am and sits in his Bailey Chair about 7-10 minutes - then she soaks his food. I get him in his Bailey Chair and get him fed at 7am until 7:30 when he's done. I soak his food for the next meal at lunch.
At lunch - I come home from work, put another cup of water into his food and take him outside. Then get him in his chair and feed him the food and Knox Blox again for 30 minutes.
For his dinner meal - we need to make sure we get it completed at a decent time. He needs his 5mg of Bethanechol in some Knox Blox and then we need to soak his food - wait 30 minuted then feed him with his Prilosec OTC in the food, while letting him chill in the Bailey Chair for another 30 minutes.
While it sounds like a lot of work, it's not something I mind doing. We do have to make sure we arrange our personal life around this schedule because it's so important to us to keep this routine and Sidney healthy. I like spending time with Sidney and even though it takes up a lot of our time - I am happy to live like this for the next 15 years (hopefully).