Blog

To read about Gage's story from the beginning you may visit http://gagejohnsonisafighter.weebly.com where mommy blogs.

Two Years and Growing

Gage had a wonderful birthday and had lots of fun running around in the bounce house that we'd rented. We let him play with brother before the other kids got in.  He had some cake and opened a few gifts.  He was super excited about the balance bike we'd got for him. I think he likes it so much because it makes him feel like he can do the things that big brother gets to do.

He recently had his final appointment with the nutritionist who says we no longer need to bring Gage since he's clearly doing so well. Now we just have to work on getting Gage to try and take his meds orally so that we can prove we don't need the G-Tube. I think that goal is going to be extremely difficult to accomplish. What kid likes to take medicine?

 

 

Soon To Be Two Years Old

It's been a couple months since we last updated you on Gage's progress.  Mr. Gage continues to do well and hasn't had any E.R. visits since our last post.  He did have an S.V.T. episode about a week ago but mommy recognized it right away and we reacted quickly trying to force him to bear down using a freezer bag full of ice cubes on his face. With the right placement and hold, she was able to convert him out of S.V.T. in less than a minute.

Gage was extremely unhappy with this method but he'd have been even more upset if we'd taken him to the E.R. for a shot adenosine.  We didn't need the stethoscope to feel his heart racing away, but we did use the finger pulse oximeter and his heart rate was definitely over 250 beats per minute. 

On the plus side, just last week Gage demonstrated he could suck through a straw and after a couple days of practice, now does so with ease. Tonight, out of nowhere, he began to practice his jumping motion bobbing up and down as if he were dancing to a catchy beat. He hasn't wavered in his happy uplifting outlook on life one little bit.  He's constantly trying to make us laugh and begs to get out of the house for some activity at least twice a day.

In less than one month Gage will be two years old. He's been living with his mechanical heart valve for just over a year now and we couldn't be happier with his quality of life. He's eating and drinking well enough now that there is a high chance he'll get his G-Tube removed in the next six months. It's difficult to imagine his tummy without it almost. The challenge then will be getting him to take his med's orally.  Still, it's another milestone we're excited to reach.

We don't really have a party planned but it will no doubt be celebrated. Our little heart warrior will be two.

Riding in his car on the beach while admiring his big brother who leads him.  5/4/2017

Growing, Growing, Gone!!

This boy is growing so fast! He's finally accomplished his long time goal of tackling a step all on his own. He must have practiced going up and down the one step in our house at least a couple hundred times. He can step down and step up all on his own with out assistance.

Life has been pretty wonderful for Mr. Gage lately. He had one SVT episode right before Christmas I believe, but nothing else since then. His last visit with the cardiologist was apparently all good and he is now taking two fewer medications. He still gets numerous doses throughout the day but at least we only have to worry about four types of medication versus the eight or so med's he was on before.

Mommy has been taking Gage on hikes during the week and he really seems to enjoy them. He loves the outdoors for sure. He also loves getting to see brother ride his dirt bike on the weekends and even watches motocross races on TV almost as intently as he watches Mickey Mouse Clubhouse. 

I posted a new photograph we took of him for Valentine's Day.  Check it out in the photography section if you don't see it on the home page. I'm also slowly working on a t-shirt supporting Gage and CHD awareness. I'll put some other photos soon as a blog post.

A New Year

Gage had a wonderful Christmas at home for the first time.  He wasn't really interested in opening presents but had plenty of fun throwing his brothers around the house for him. We took the family to the San Diego Zoo and Gage definitely enjoyed that. He loves being outdoors and walking around. He is getting increasingly daring and thinks it's fun to stand up on the couch walk around.

He has not one care about falling or bumping his head.  He's not at all worried about his INR levels.  Gage only cares about whether or not what he's doing makes you laugh or not. With the new year we hope to have as few ER visits as possible.  We love the staff at Rady Children's Hospital but would rather not see them anytime soon. At least not as an inpatient. If we're to make sure that Gage doesn't go back for a while Kristy and I may need to find a mini Eagles helmet for Gage to wear.  This boy needs some protection!

Gage walking with mommy at the San Diego Zoo over Christmas weekend.

Home for the Holidays

Gage got to enjoy his first Thanksgiving here at home.  Last year he was in Boston going through his first valve replacement surgery and couldn't eat or drink anything. It's difficult to think back to what he was going through at that time. This Thanksgiving we had so much to be thankful for. Gage enjoyed plenty of food including turkey, mashed potatoes, and stuffing.

This coming Christmas will also be a first for Gage. First Christmas home with family. He was in Boston last year as well. Now, not only will he be home, he'll be able to open his own gifts and throw them around the house wherever he wants. Gage is very fond of throwing things.