School, Big Boy Bed, and Christmas

Saturday’s post was all about you, the awesome fans. Today I’m shifting back to James, because after all, he is what this site is all about. Before we get back to James though, I do want to say thank you one more time to all of you that have donated, sent letters, left comments on his Facebook page, and showed your support in so many different ways. When we started sharing James’ journey with the world, we had no idea what sort of response we would get, if any. We have been a bit overwhelmed. You guys (and girls) are awesome!

 

 

School

I realized after I sat down to write this post that I may have neglected to thank the biggest supporters of all…his teacher and therapists. James has come such a long way this school year. With all of his diagnoses, we weren’t expecting him to be able to do a lot, but he has really thrived this year, and I think a lot of that is because of you.

I’ve been told that his teacher plays with snacks every day with him. A week ago, one of his classmates had a birthday so the snack was cupcakes. Even though James can’t eat by mouth and couldn’t enjoy the taste of the cupcake, it didn’t mean that he couldn’t enjoy the cupcake another way…

 

 

With all of the work his occupational (OT) and physical (PT) therapists have been doing, James is able to do this for an extended period of time:

 

James lying on a blue padded mat with a red foam support under his chest and arms in a therapy‑style classroom, with a laptop on a nearby table and chairs, bags, and a desk in the background, suggesting an assistive or educational setup.
Getting stronger every day

 

Stacy tried to get James to do some physical therapy exercises earlier this week while he was home on break, and he just laid there. Either he was refusing because he is on break, or his PT has the magical touch to get him to work. Whatever you are doing at school, can you teach Stacy so maybe we can get him to put some work in at home, too?

As you are probably aware by now, we are planning a big fundraiser for April to try to raise money for a wheelchair accessible van. All members of the crew that are helping with the fundraiser will be getting a special “Team James” shirt. Since James has been having such a fantastic year at school, Stacy thought it would be nice to get his teacher, nurse and therapists “Team James” shirts, too. Absolutely! They are 100% Team James. This was our Christmas gift to them.

 

Six black T‑shirts laid out on a flat surface, each with bright neon green and purple lettering: “PROUD PT,” “PROUD SPL 14,” “PROUD TEACHER,” a “TEAM JAMES” shirt with a purple title and neon green cartoon monkey face, plus “PROUD NURSE 14” and “PROUD OT 14,” creating a coordinated set of support shirts for James’s care team.
Team James shirts for his teacher, nurse, and therapists

 

The front of the shirt says “Team James” with the monkey head logo we’re using for the fundraiser. The back of the shirt says “Proud …” and the number 14. Why the number 14? That’s the year of the fundraiser.

James, Stacy and I have shirts, too. You may notice that James’ shirt has the number 09 on the back instead of 14 because that is the year he was born.

 

Three black T‑shirts laid out flat, each with bright neon yellow‑green lettering: one reading “JAMES 09,” one reading “PROUD MOM 14,” and one reading “PROUD DAD 14,” suggesting coordinated family shirts for supporting James at an event.
Our Team James shirts

 

James also made his teacher a little something special for Christmas:

 

White canvas featuring two green painted footprints with red bows above the heels, arranged as a holiday “mistletoe” pun, with the word “Mistletoes” written below alongside small green leaves and a red berry, and a handwritten “♥ James” signature with the date 12/2013 on the edge.
Mistletoes

 

Those are his footprints. Ask Stacy how long it took to get all the green paint off his feet!

The week before Christmas break, Santa Claus stopped by to say hi to James.

 

 

 

Big Boy Bed

Stacy decided it was time for James to move up from a toddler bed to a regular bed. His toddler bed was so low to the ground that it was literally a pain in the back to get down there to suction him, change his diaper, and get him out of bed. I don’t think we will have those problems with his new bed; it’s so high off the ground!

His last night in the toddler bed:

 

Dimly lit child’s bedroom with a toddler bed holding a sleeping James under a colorful patchwork blanket, next to a small ottoman with a lit pulse oximiter connected to James by a wire, with shelves of supplies and storage bins in the background.
James’ last night in his toddler bed

 

Here’s James trying out his new bed. He looks so little in it, doesn’t he?

 

James lying in a wooden bed with green walls and a colorful monkey‑themed patchwork quilt, wearing holiday pajamas, with a large stuffed monkey beside him and a wall decal above the bed reading “No more monkeys jumping on the bed!” surrounded by playful monkey illustrations, alongside a nightstand, lamps, and framed photos creating a cozy bedroom scene.
Testing out his new bed

 

This is to give you an idea of how tall this bed is. Look how far Stacy’s feet are from the floor.

 

Bedroom with light green walls and a wooden bed frame, where Stacy sits on the edge of the bed wearing dark clothes and black socks with white polka dots, next to a small nightstand holding a patterned lamp, a figurine, and clock radio with a green display, with a brown laundry hamper and a pink trash bin nearby.

 

I think this will be much easier on our backs.

 

 

Christmas

Since he seems to react to lights, especially colored Christmas lights, I got a little creative and made him a sensory play area with PVC pipe and Christmas lights. The lights have a remote that you can use to change the effects of the lights. I think I might have made it a bit too big. In hindsight, I probably could have made it about half the size. Oops!

 

 

For some reason we didn’t take many pictures at Christmas this year, but we do have a couple of James with his cousins.

 

James and his cousin lying on a blanket on the living‑room floor, side‑by‑side and facing a tablet placed in front of them, with James resting on a towel and his cousin leaning close, surrounded by a wooden floor, a rug, and a nearby table holding a blue cup and eyeglasses.
Christmas Eve

 

James and his cousin lying on a wooden floor, James resting on a patterned cushion with a striped hoodie and medical equipment nearby, both facing a tablet propped on a dark wooden table that holds a remote, a plush toy, and a decorative tray, with a wrapped present in the background as they watch the screen together.
Christmas Day

 

James in festive Christmas pajamas reclining in his Nap Nanny in a dim living room, facing a decorated Christmas tree lit with multicolored lights, with ornaments and items beneath the tree creating a warm, cozy holiday atmosphere.
James looking at our Christmas tree

 

I think that’s going to be a wrap on 2013. It’s getting late, I’m tired and I have to rest up for New Year’s Eve. Who am I kidding? We’ll probably all be in bed by 10, if not earlier. Hope everyone has a safe and happy New Year, and we’ll catch y’all next year.