If you’ve been reading this blog for a while, you have probably noticed that I usually organize regular blog posts into sections: School, Holidays, Doctor Appointments, etc. Then I simply take each of those sections and use them in the title of the post. The problem with doing it this way is that if I have a lot of different things to share in a particular post, the title becomes pretty long. This monthly post is a good example. I have a lot of various things to share this month, and the original title was going to be “Van Fundraiser Update, Oral Surgery Update, New Headrest for Wheelchair, Father and Son Project, Awareness Days, St. Patrick’s Day, and an Award at School”, which seems awfully long for a title, doesn’t it?

I couldn’t figure out a good way to shorten the title so that it’s not 24 words long. Should I just pick one or two things to put in the title? But then how do I decide which things to use for the title and which ones “don’t make the cut”? I decided to just title this post as “April 2023 Update”, which isn’t very descriptive, doesn’t tell you what the post is about, but it also doesn’t have so many words that it could be mistaken for a short paragraph. I’ll try to continue to use the old descriptive post titles unless it ends up being really long, then I’ll use the “[Month] [Year] Monthly Update” format.

I know, you probably don’t care too much about the titles of the post, do you? You just want to catch up on James’ life, right. Well, let’s get to it…

 

Van Fundraiser Update

We’d like to thank each of you that has donated to our fundraiser. We still have a long way to go, but we are extremely appreciative of all of the donations we have received so far. If you are interested in making a donation, you may do so here:

https://helphopelive.org/campaign/21730/

Stacy created and added this video to the fundraiser site:

 

 

She has been trying to add a few extra dog walks when she can and has also been looking for places to sell some of James’ old t-shirts to raise a little bit of money to put away for the new van.

 

 

Selling his t-shirts brought up something that I’ve had in the back of my mind for a while. Every so often Stacy buys James a funny or inspiring special needs related t-shirt, like this one:

 

 

Do you get it? Because he is tube fed, he doesn’t need to be awake to eat. I’ve been wondering if making and selling silly shirts like this would be a worthwhile endeavor to make a little extra money for the van or for James’ medical fund. I may start looking into this. As long as it doesn’t cost too much up front, I may try it and see how it goes.

 

 

Oral Surgery Update

James has been having frequent (or ongoing) respiratory issues for a while now. We haven’t figured out the cause yet, but one of our thoughts was that it may have something to do with his lower jaw being so narrow that his tongue doesn’t sit flat on the bottom of his mouth. Instead, it lies on an angle.

A few weeks ago, we met with the oral surgeon who removed several of James’ teeth back in 2018 only to find out that he is no longer associated with the hospital. He gave us the contact info for another oral surgeon who works out of a hospital that was much farther away and that we have never been to. We weren’t comfortable with that idea, so Stacy decided to make some calls to some pediatric dentists in the area to see if she could get any leads on an oral surgeon.

She got lucky and found one that was associated with the hospital about ten minutes away from us. We met him on March 28th, but unfortunately, he did not feel comfortable doing the extensive surgery that James’ might require. He did, however, send James for a CT scan that he would pass onto some colleagues at Loyola Medical Center that may be able to help. We haven’t heard anything yet but will give them another week before we call and follow up with them.

 

 

New Headrest for Wheelchair

We’re trying a new type of headrest on his wheelchair to see if it works better for him. Not because the other headrest wasn’t good. Just trying something new.

 

 

This is the new one:

 

 

We’re not sure if we like this new headrest, but we’re going to give it a little bit of time to see.

 

 

Father and Son Project for the Dog

Maggie has been part of our family for about two and a half years now and we’ve learned that she is not what I would consider a typical dog. Most dogs would chase rabbits, squirrels, and birds out of their yard. Not Maggie. Most dogs would fetch a ball or a stick. Again, not Maggie. Toys? Nope. About the only time she gets excited about something is when there’s food involved. She seems to be very food motivated. I suppose that could be a result of her being a stray and having to scavenge for food. They rescue told us that she was really skinny when they found her.

I joined the Canine Enrichment Ideas Facebook group a while back hoping to get some ideas of things that we could do to entertain her or give her a little bit of mental stimulation, and I think I may have finally found something. Someone had posted that they bought their dog this toy where you put dry dog food into these bottles and the dog has to spin the bottles to get the food out. Since Maggie loves food, I thought this would be perfect for her, so I bought it. It’s a Loobani Dog Puzzle and is available on Amazon. Once it arrived, James and I put it together while Maggie supervised.

 

 

 

 

 

 

 

 

 

 

 

After we finished putting it together, I put some food it in, and showed Maggie how it worked. She would just watch me spin the bottles and got excited when the food fell out. She’d grab the food and wait for me to do it again. I took her paw and showed her how she could do it by herself, but she’d just wait for me to spin the bottles. After about fifteen minutes of this, I told her that we would try again tomorrow. The next day it was the same thing. I put food in it, and she would wait for me to spin the bottles and grab the food when it came out. She just wasn’t picking up on the concept, so I told her that we’d try again tomorrow. She is a smart dog so I knew that she would eventually get it.

And then something amazing happened. I was in the other room, and I heard the sound of the food clanking around in the bottles. I yelled to Stacy to see if she was working with Maggie on the toy. She said “no, I’m in the kitchen.” I peaked around the corner and sure enough Maggie was spinning the bottle by herself!

 

 

Awareness Days

There are awareness days for pretty much anything, aren’t there? Throughout March, there were not one, not two, but three awareness days that we partook in. First up was Trisomy 18 Awareness Day on March 18th. In case you are unaware, Stacy and I lost our first son, Jackson, to Trisomy 18. He passed away before he was born, and we never got to see him or hold him. If you’d like to find out more about Trisomy 18, this is an excellent resource: https://trisomy18.org/parents-families/

 

 

March 21st was World Down Syndrome Day. I’m not sure who came up with this cool idea to raise awareness for down syndrome, but they asked people to wear crazy socks to help raise awareness. James wore fish socks to support his friends and classmates that have down syndrome.

 

 

Finally, March 25th was Cerbral Palsy Awareness Day. A day where we wear green to celebrate James and all of his classmates and friends that have cerebral palsy.

 

 

The month of March was Cerebral Palsy Awareness Month and Stacy had her annual fundraiser to raise money for the United Cerbral Palsy Center for Disability Services. The fundraiser ended at the end of month, but you can always  donate directly to the United Cerbral Palsy Center for Disability Services if you would like.

 

 

St. Patrick’s Day

 

 

School Award

James was awarded a certificate for embracing the three A’s of his school: Accept, Achieve, and Amaze. Those three A’s are quite fitting for James.

• • Accept: Throughout his life James has been teaching people to accept others regardless of their disabilities.
  • Achieve: He has achieved such a following of loyal fans.
  • Amaze: He has amazed us for the past thirteen years. From those two months in the NICU when the doctors couldn’t tell us how long he would live, or what his quality of life would be, he has persevered through all of the medical and health issues he has faced.