Wednesday, October 28, 2015

Jamesie Day 2015

Today marks three years since James was released from the NICU after 124 days, three months on the ventilator and seven surgeries. His bill for the bed alone was well over two million dollars, and that doesn't even account for the doctors, surgeons, procedures, equipment, supplies, or testing that was billed for regularly. 

Today we celebrated James and his accomplishments. James has been talking up a storm lately and has a very charming personality. Additionally, he has been doing phenomenally well with strength training and mobility. James's flexibility has been improving every day. We think he is doing a great job and are incredibly proud of everything he has accomplished. 


Today we had an appointment with our orthotist who was ecstatic at the improvements James has made in the past few months. James met a beautiful young french woman and impressed her with his charm, some basic French and a few "ooh la la's". He requested a dinner of steak and fries with cheese sauce and practiced trick or treating with his walking sticks while we prepared everything. We watched "Elmo's World: Balls" and some "Peppa Pig". After dinner James and Maisie got really wild, laughing and dancing. They went to bed thoroughly exhausted and fell asleep within minutes.


Days like these make the NICU seem a world away. I remember feeling like James would never break out of PSL jail, but in reality he was only there a few months. He has been home officially 1,095 days now; that's 36 months or 3 years. What a ride it has been!




Thursday, October 22, 2015

Snow is falling

We had our first substantial snow today, and I was lucky to be working at home while Grandma came to watch the little dragons.

Living at such high altitude, we have had a few moments of random snow so far this fall, but nothing substantial enough to play in. By mid morning we had about 8 inches of wet and sticky snow, and the storm was continuing steadily. The temperature was mild so we decided to take the kids outside for a quick adventure.

We went to the front closet and pulled out all of our winter gear. Thankfully they both still fit in their winter clothing that is going on a third and likely final season. We pulled on snow pants, boots, coats, hats and gloves; then proceeded out on the deck to check out the snow. James had his walking sticks and insisted on bringing a beach ball outside.

Maisie loves to make snowballs and snow angels, so she did a few of those. James trampled through the wet and slushy snow using his walking sticks for support; they were very durable and he did not slip one time. James also liked beating the beach ball to oblivion using his sticks, which along with the cold air helped to deflate the ball pretty quickly.

After exploring the deck, we headed out to the driveway as the storm continued on. We cleared snow from the branches of some low trees and bushes, and stayed out front until everyone was so wet and cold that the only option was returning to the house to get warm. The little dragons loved watching the snow plows go by and chasing the beach ball around the yard. When we decided to come in to get warmed up, Maisie and James were not thrilled about their snow adventures being cut short.

Grandma promised the kids that they could have chocolate once inside, and subsequently they both headed inside without incident. We all warmed up by the fire while eating Hershey Kisses.

Monday, October 19, 2015

Hot air balloon

Saturdays are usually pretty low key for us. They consist of pancakes or muffins, playtime, and letting Jimmy sleep in. On a few rare occasions we may leave the house, but definitely not before noon.

This past weekend we were invited by a few friends and our realtor to a fall festival in town. It started early - 8am to be exact, as there was a pancake breakfast, pumpkin patch, and tethered hot air balloon rides. We loaded up the kids and the car and arrived just past 8:30am. The whole event was packed with hundreds of people and we barely found a place to park. James had his walking sticks and we were without the stroller - which may have been a stupid move on our part - but our agenda was to get a hot air balloon ride. 


As we got to the registration table we were firmly told that they weren't taking any more people as they were maxed out for the day. The organizers didn't feel as though they would get through one hundred groups ahead of us and they had been turning people away for a while. 

Disappointed, I mentioned in passing that James loved hot air balloons more than anything. We would have to come earlier next year they said, perhaps at 7am, to get our name on the list and ensure we got a ride. The little dragons headed towards the pumpkin patch with James stopping every few feet, pointing his walking stick in the sky at the hot air balloons. He kept talking about the hot air balloons, as he is more persistent than any person I know; it has paid off for him on more than one occasion. He has persuaded several people to give him their personal balloons, so he definitely has a gift of stubborn persistence and persuasion beyond the average 3 year old. 

Maisie went about picking a pumpkin while James was being a stickler for the hot air balloons. He told everyone around us about them, pointing in the sky. We attempted a few pictures in the pumpkin patch but it just wasn't working; too many kids around, and our kids not paying attention, etc. 

Out of nowhere a man ran up to us, and said, "If you want to go in the balloon, we have to go NOW", and so we grabbed our stuff and quickly followed after him. He took us to the very front of the line. "I want to make his dream come true," the man said, before disappearing into the crowd. We were told the kids would be too small to go in the balloon, and that we wouldn't be able to go up together - but a consult with the balloon pilot revealed all of these concerns to be false. 

After a brief wait, Jimmy and I loaded the little dragons into the hot air balloon and went on a brief tethered ride up at the park. It all went by so fast and before we knew it, we were on stable ground once more. The kids absolutely loved it and want to ride again. We are so grateful for the guy who gave us a chance to let our kids do something they've only dreamed of. 



***
Following our hot air balloon ride, we picked out pumpkins and caught up with some old friends. James met a lady with her own walking stick and Maisie danced to the music in the park. We went to the farmer's market for fresh vegetables and fruit. For the rest of the morning, we adventured around Lookout Mountain, climbed rocks and watched paragliders, then headed home. 



The little dragons were so hungry and exhausted they devoured the better part of a 10 inch pizza for lunch, then ate a whole steak with potatoes for dinner. I thoroughly hope to see the scale tip past 22 pounds at next weigh in. 

Wednesday, October 14, 2015

A spider visited me

James was getting up early one morning, ready for his first PT appointment of the week. He was half dressed, shirtless, and walking through the kitchen with his forearm crutches when he stopped and started whimpering slightly under his breath.

I went over and asked James what was wrong, but he didn't look too distressed. I went back to getting things ready for the day. A few moments later I looked over and he had still not moved from the spot in the middle of the kitchen. Maisie was right next to him drinking some water. Nothing could have prepared me for what happened next. 

I noticed that James had a dark spot on his neck, slightly under his chin. Initially I thought it had to be leftover chocolate that we had missed from last night's dessert. That is typical James. He loves to save food for later.

Then I got down to my knees and noticed that it was a large spider about the diameter of a nickel. I screamed and swatted it off of his skin, and it flew across the room. Maisie screamed and jumped. The spider ran to hide and we didn't catch up with it again. James didn't seem too upset, and because our PT was coming soon we got dressed and went about our business. 


Later on at breakfast time, James told me "a spider visited me". I asked how the spider came to him and he said "it went down from the ceiling" and was adamant that it "did not crawl up me". Maisie, who is not a spider fan at all, did not enjoy all the talk about spiders. She's getting better after watching Harry Potter a few times but bugs in general are not her favorite. 

James, on the other hand, said the spider was friendly and said that "he tickled me and gave me kisses". That kid is always an optimist.