Squeeky Joy

Wow, its been awhile since I have written, I just didn't want send any bad vibes out there.  Every since we have pulled Rylan out of school last August he has been great!!!! With the last day of school around the corner I felt it was safe to share that Rylan has been hospital free for 9 MONTHS!!!!! Sooo exciting.

Cheese!

 

 

As I sit here and listen to him squealing over the same SpongeBob episode he has watched a million times I cant help but feel relaxed. I feel like I finally have some sort of control over the anxiety that's been lurking on my shoulder for 2 years.  It makes all the work we put in this last winter worth it. Our house became Fort Knox and NOBODY was coming inside if they showed any type of sickness. Face masks became a part of Rylan's everyday wardrobe when we had to go for appointments, We were going to do everything possible to keep him healthy!  I don't want to let my guard down completely though as that's when something will happen.

 

Because Rylan has been doing so great, Steven and I decided to plan a trip for him to go see Cars Land in Disney's California Adventure.  We started planning this trip in January, and it was SOOO much fun

 

We met Mater and rode a few rides.

 

It was seriously a blast to be able to have that family time.  We were able to spend some time with Steven's parents as well. The day after Disney we hit up Sea world, it was cold! But it wasn't busy so that was good!

Needless to say we needed that trip, it was nice to be able to get out and not worry about Rylan's breathing.  I know its not going to be this way for long but I will embrace it while I can.

I am not going to lie, I still watch his breathing like a hawk and whip out the Pulse ox if his breathing is questionable. But I like to think that because of my neurosis type behavior, Rylan had a comfortable winter.

Steven and I are starting to see some of the neurological effects as Rylan is getting older......and I will continue to be on top of all of it.  Who doesn't want to have all the medical knowledge???

SO here is to not seeing the inside of the pediatric unit at TMC for an entire year!!!!