I feel like I’ve gotten off track a bit. I was doing so good for a while with keeping up with the monthly posts. These past couple of months have been a bit hectic with Spring Break, James being in the hospital for a couple of days, and then Easter. The last monthly post was on March 3rd, so I’m going to try to get caught up in this one. Hopefully it won’t be too chaotic, and I can keep it somewhat organized.

 

Pneumonia

I guess I will start with the brief hospital stay since I mentioned it in the above paragraph. He started having one of his respiratory episodes on Saturday, April 13th. We did our best to get him to come around, but when he was still struggling Sunday morning, we decided to was time to call in reinforcements.

One of Stacy’s dog walking clients is a nurse at the hospital, so she called her to see if she was available to come over and check him out. After listening to his lungs, she recommended we go to the ER to get a chest x-ray to check for pneumonia. Our pediatrician agreed.

 

 

 

She was right. In the ER they did a nasal swab, bloodwork, and an x-ray that showed pneumonia. Once the ER doc sees that there’s pneumonia, we know what happens next. Sometimes we fight to take him home with antibiotics. This time we decided that the hospital was the best place for him and didn’t fight it, so up to his hospital room we went.

 

 

By Sunday night he was doing much better. They had him on just 1 liter of oxygen and his numbers were fantastic.

 

 

Although he was doing good, they wanted to keep him overnight just to make sure he didn’t back track and take a turn for the worse. On Monday, while we were waiting for the doctor to make the decision if James could be released, James played a game of Bingo—with mommy’s help of course—and he won!

 

 

 

James was cleared to go home Monday evening, which was good because there was a fundraiser planned for James on Wednesday night. More on that later.

 

 

It’s been almost two weeks now since that hospital stay and for whatever reason he’s still struggling. He’s just not back to his normal baseline. Just when we think he’s almost there, he falls back a bit. This morning, he fell back again:

Spinal Fusion

We were notified on April 19th that the spinal fusion surgery was approved by insurance, and it has been scheduled for May 23rd. Because James has been struggling a bit to get back to his baseline after this latest bout of pneumonia, we made the decision to keep him home until the surgery. This surgery is too important, and he needs to be healthy.

If you can send up a few prayers for James to be healthy enough for surgery, we’d really appreciate it. While you’re at it, say a few prayers for Stacy and I as well. We’re getting more and more nervous as surgery gets closer, and now we have the added stress of his health these past few weeks. Thank you.

A few people have asked us about the surgery and what it entails. Here is a short video from Children’s Hospital Colorado that explains the surgery really well:

 

 

Fundraiser

In mid-March we were notified that James was nominated to be a “Brigade Buddy” for The Lemonade Brigade:

https://www.facebook.com/lemonadebrigade/videos/328036201071197

We had no idea what this meant, and we had not heard of The Lemonade Brigade before. Stacy reached out to them to find out what this was all about. The Lemonade Brigade is a group of kids who raise money for kids in need by selling lemonade throughout the summer. James was nominated and chosen as one of their recipients this year. They wouldn’t tell Stacy who nominated him, but we found out later that it was one of his Facebook followers.

In addition to being a recipient of funds raised through their lemonade sales, they also work with local restaurants to have a “Dine and Share” event where a certain percentage of profits will go to James. Our Dine and Share was on April 17th at Culver’s. We had a pretty good turnout and want to thank The Lemonade Brigade, everyone who came out to support us, Culver’s for being so generous, and of course the woman who nominated James.

 

 

 

Wedding

James’ one-on-one nurse at school got married in early March and invited us (and James of course) to the wedding.

 

 

 

 

It was a beautiful wedding, but there was one moment that really brought a tear to my eye. At the reception, several ladies, the bride included, started dancing with James.

 

 

 

School

We went to the Fun Fair at James’ school:

 

 

 

 

 

 

 

A couple of years ago James was given a special stuffed monkey that has a g-tube just like he does. Stacy named him Timmy. They had a stuffed animal day at school, so Jimmy (aka James) and Timmy went to school together:

 

 

 

Field trip to an art studio:

 

 

 

 

Easter

 

On April 6th we had a nice breakfast with the Easter Bunny courtesy of our township’s disability services. We even made it into the disability services’ newsletter. Our picture is in the upper lefthand corner. I blurred out the other pictures for privacy reasons.

 

 

Here’s the colored version of the picture:

 

 

 

Jackson

March is kind of like a double awareness month for us. The entire month of March is Cerebral Palsy Awareness Month, and March 18th is designated at Trisomy 18 Awareness Day. We found out that our first son, Jackson, had Trisomy 18 at the 11-week prenatal appointment. We lost him six weeks later. We will always love him and never forget him.

 

 

April 21st would have been his 10th birthday.

 

 

 

New Sign

Stacy came across a picture of a sign a while back and was interested in getting one for our house. She asked around in her various groups to see if anyone could make a sign like it or knew of anybody that could make it. A very nice woman made us the sign and didn’t even charge us for it. She did it out of the kindness of her heart. It says:

“Welcome. This is the home of a medically fragile child. Please wash your hands, remove your shoes, use hand sanitizer. Do not enter if you are sick, have been sick recently, or have been around someone who is sick. We appreciate your help in keeping our little guy healthy and germ free!”

 

 

 

Closing Thoughts

I think am all caught up with everything that has happened in our lives since my last post. As much as I would like to try to get back on track with the monthly posts, I don’t think it’s going to happen. Today is April 28th, which would mean the next post would be May 26th. With James having his spinal fusion surgery on May 23rd, I more than likely will not be able to post on the 26th. Maybe I’ll aim to post on the 19th instead.

In case I don’t get something posted on the 19th, please remember James’ surgery on the 23rd and say a few prayers for him. It is going to be a long surgery and he’s going to need all of the good vibes that he can get. And don’t forget to keep an eye on James’ Facebook page for surgery updates.