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

June 2019, Gage Turns 4

On June 3rd, Gage turned 4-years old. He woke up at 7 a.m. to the sound of a Spider-Man bounce house inflating in his backyard. He jumped out of bed, ran outside in his pajamas and was ready to climb in before it was even halfway inflated.  We got him his first pedal bike and he couldn’t have been happier. Within minutes he was pedaling down the sidewalk all on his own.

It’s been over a year since he’s had any SVT episodes. His last episode was back on April 8th, 2018. It’s easy to think that maybe the problem has corrected itself but based on everything we’ve been told, the chances of his SVT issues going away are slim to none. I think it’s safe to say the beta blocker is doing its job. Dosages haven’t really changed since Gage hasn’t grown much.

He recently finished Pre-kindergarten and within the last six months has greatly improved his speech.  He’s now willing to repeat words and phrases if you ask him to, whereas previously he’d only shake his head from side to side if asked to repeat something. He’s expressing himself more and using words to ask for things, sometimes with the help of sign language. 

Gage with big brother Gavin at the beach building sand castles.

Fall 2018

Gage has been doing very well. He’s not had any SVT episodes since the last post. He has been going to school and really enjoying it. He still isn’t talking but does seem to making a little more of an effort to try and make sounds. He’s a long way from saying any real words or sentences. He hasn’t grown much over the last six months but that’s no surprise considering he barely eats a full meal each day. He’s super picky and will refuse to eat unless he’s absolutely starving.

I’ve no doubt that much of that is a result of having had the g-tube for so long. On the other hand, I didn’t eat much when I was little either. My parents always said I only ate enough to keep a baby bird alive up until I was a teenager. I’m sure it’s just a phase and over the next couple of years his appetite will increase. We’re just grateful that Gage has stayed out of the hospital as long as he has thus far.

Gage still loves riding his balance bike and enjoys getting to participate at the BMX track. Below is a photo of him winning his very first medal. It was his first race and he finished last but he was so excited to earn his own medal and had a blast riding on the track.

Spring 2018

Gage is turning 3-years old next week. It's been a wonderful year with very little hospital visits.  Gage made it nearly one year without an SVT episode which was a personal best for him.  On April 8th, he took a visit to the E.R. when we found his little heart beating around 220 b.p.m.  We were at a friends and I'd noticed that he was walking with a limp.

I thought maybe he'd hurt his little toes or perhaps stepped on something since he was barefoot. When I reached over to pick him up, I grabbed him just under his arms with my fingers touching his chest. I could feel his heart racing and asked Kristy to confirm. She took him to Rady Children's Hospital where they were able to convert him out of SVT with a shot of adenosine. He was able to leave and come home in only a few hours. They decided to up his Sotalol a little more to try and prevent any more SVT episodes from occurring anytime soon.

Gage has continued to form a very special bond with his big brother and the two of them have such a wonderful time when they're together. Gage can't seem to go more than an hour or two without seeing his brother. He continues to enjoy watch his brother ride his dirt bike and race BMX bikes at the track as well.  Gage has become an excellent balance bike rider and is getting to enjoy time out at the BMX track as well. He's at the age now where he'll really get to enjoy his birthday.  He's looking forward to some presents, cake, and a bounce house. 

 

Gage and Gavin having fun at the pool for Memorial Day.

Fall 2017

Gage continues to do well with no SVT episodes since that first week of May.  It's been almost six months without any SVT which is probably the longest time period Gage has ever gone without an SVT episode.  He's doing great in all of his therapy sessions although he isn't talking still. He says "Da Da Da" when he really wants my attention but not much else.  The other day Kristy thought he said "Hot Dog" but he hasn't said it since. He completely understands us and has proven that his vocabulary is where it should be at his age; perhaps even better. He answers questions nodding his head "yes" or shaking his head "no."

We were recently told that Gage may have his G-Tube removed anytime we're ready to switch him over to oral medication. Great news of course, however we've only started giving meds orally for about a month now and are a little nervous about losing the access a G-Tube provides.  There is some risk that Gage may choose to refuse his meds much like children refuse to eat vegetables.  In that case, we would have a big problem on our hands.

Gage currently takes all his meds by mouth except for the 11 pm dose because he's already asleep by then. We're going to try and arrange to have the G-Tube removed in the next month or so. It won't be fun for Gage but he's a tough boy and I think he'll be glad it's gone after a week or so.

Gage recently went back to Pennsylvania to see mom's side of the family. He had a blast and definitely opened up a little more to family and friends. Prior to this trip he'd become so shy that he'd cry the minute anyone would try to hold him or even talk to him. His big brother is still his number one fan although he's become a big "Daddy's Boy."

Normally, Gage would look away anytime we would try and take a photo of him. Recently, he decided he'd smile on command. "CHEESE" we say!

Loving Everyday!

Gage is doing amazing! The last S.V.T. episode that Gage had was around the last week of May or the first week of June.  We weren't able to convert him out of it on our own and mom had to take him to the E.R. for a dose of Adenosine. We were becoming increasingly concerned because Gage was having S.V.T. at a pace that seemed like once a month. There was talk of checking him in to the hospital to try and get him on something that would be more effective since his Sotalol seemed to be loosing it's effect. In the end, they decided that we'd wait longer and see whether or not the S.V.T. would continue to increase in frequency.

Fortunately, he hasn't had any S.V.T. in the last couple of months.  Mr. Gage has been loving life everyday with no E.R. visits to worry about.  We go nearly every weekend as a family to watch big brother ride his dirt bike. Gage has become a big fan of dirt bikes.  I'm pretty sure he's going to want to ride in a few years. That'll most definitely be a tough talk to have. He isn't a person that is going to let his condition rule his life. He's an individual that truly believes in enjoying every minute of life and it's a pretty incredible thing to witness in a two year old.

Below is a photo of him playing on his bounce house that his "Noni" got him for his birthday.