Our Lil' Hero: Update

Friday, May 25, 2012

Update

My goal for the summer is to update alot more than I have been! I have people ask me all the time how Mason is doing because I have been a slacker at posting! Mason is doing the best he has ever done. He acts like a typical crazy 20 month old boy! He runs, kicks and throws balls, talks, plays trucks, he likes to swing, and go down slides, loves guns(I guess some of these come in because he loves to do anything Ryder does), loves Toy Story and Transformers. He likes to hide things from people and is one of the silliest little kids with such a huge fun personality! You wouldn't think anything is wrong with him by just looking at him. He still has things that makes him tired. He still can't climb all the way up the stairs in our house and when he has been running around for awhile his lips turn a lovley shade of blue and he starts to fall down alot, but none of that phases him and he doesn't let it stop him either. We still haven't been able to go longer than 4 months without having a cardiology with sedated echo and even though he is doing great they still have us coming in that often with a sedated echo everytime, I used to have a hard time with it saying things like "other kids get to go longer so why can't Mason" But I have come to terms with Mason is his own person and even though one kid can go 6 months and others 1 year Mason, as they always say, is not their typical case and he is a little more compilcated in his heart anatomy having the other defects, leaky valve, and extra vessels. We have his next cardiology appointment with the sedated echo in 2 weeks and I am expecting nothing but good results. Thanks for keeping tabs on our family! I feel lucky to have such a great support system with our friends, family, and even from people we have never met!

♥

I love this picture so much! Thanks Ali for snapping this cute pic at the park!

2 comments:

thecannon5 said...: Thanks for keeping us updated, I love reading how things are going, and I love the picture, I think he looks EXACTLY like You Molly :-); May 25, 2012 at 5:24 PM
Jenna said...: Hi Smiley Mason!
My name is Jenna and I came across your site. You are a courageous fighter, a brave warrior and an hansome inspirational prince. You are a special miracle, precious gift.

I was born with a rare life threatening disease, developmental delays and 14 other medical conditions.
http://www.miraclechamp.webs.com; September 7, 2012 at 7:17 PM

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A little about Mason

This is a journey through Hypoplasic Left Heart Syndrome (HLHS). Mason was born on October 1, 2010 as what we thought was a healthy normal baby boy. At 3 weeks old we found out when he was life flighted to Primary Children's Medical Center that he was born with an Unbalanced AV Canal Defect that caused him to have Hypoplastic Left Heart Syndrome. He also was diagnosed with 2 Large ASD's a VSD, a CoArch of the Aorta, and a small leaky Mitral Valve. He had his first open heart surgery, the Norwood, in the end of October 2010. After surgery his chest was left open and they surgically closed it a few days later after the swelling went down. He had his second open heart surgery, the Glenn, in January 2011. He did great with recovery and got discharged 1 week later. We had him home for 1 day then he was rushed back to the hospital where they found he had a sternal infection and had to open him back up and wash out all the infection and he had a picc line placed for 6 weeks for antibiotics. He had a couple of heart caths during that time, and echo every 3-6 months, and eye surgery.
In February 2013 we sent his records to Boston to explore different surgical options for him. We found out he was a candidate for a surgery called the Staged Left Ventricle Recruitment to the BiVent. With this surgery it would grow his left ventricle to normal size and then give him normal circulation to hopefully avoid him having to have a heart transplant. (if we didn't go this route we have been told with his anatomy he would need a transplant in his teens). With the help of friends, family, and strangers we went to Boston where he had the first of hopefully only 2 surgeries. He had his 3rd open heart surgery in June and right now his heart is growing and conditioning to be able to handle the load of the work that a normal heart does. He is due to have his 4th open heart surgery in the first of 2014.