Thursday, March 25, 2021

 I have always wanted to design an Image that represents Isaac since we named him on the day he was born. When we found out the meaning behind Isaac Verne was "Laughing Warrior" we knew it was perfect for him and never regretted it. Since then heart families started to call their heart kids "Heart Warriors." This bothered me at first because I felt like I was copycatted. If someone steals this image, I have artwork to prove that I created it and will take legal action if necessary. I might choose to modify it later. I am glad Isaac likes it.

 It has been a while since I have updated this blog. This past Tuesday, Isaac had an ultrasound of his liver. The results said that his liver is slightly worse than before. He still has Fibrosis of the liver and will continue to be monitored through bloodwork, ultrasounds and MRI. Isaac became an adult in January, so he will be having minor changes with his list of doctors. He will also be graduating from High School at the end of May. After careful consideration we have decided against ever having Isaac listed on the liver and heart transplant list. This is a personal decision based on what is best for Isaac. He is an active participant in his healthcare and will continue to have the final say in all decisions about his healthcare. We fully support those who choose transplant and are signed up as potential donors on our ID's.

Monday, December 26, 2016

2016 Update

Isaac over-all had a good and healthy year. Isaac started eighth grade in the Fall. Isaac was diagnosed with liver disease in December of 2015 and we procrastinated getting his liver biopsy until the 14th of December this year. Isaac had a couple of procedures on the 14th, and the esophagus shows no varicies which is a good sign, his biopsy came back showing he has focal bridging Fibrosis Stage 3, and Mild portal Gastropathy.  I will have to research to understand what all of this means, since doctors do not have time to explain details and teach a course about the liver. Anyway, he says we do not have to see him for six months, which is usually a sign that I do not need to worry. Isaac will have an ultrasound to followup on his liver to see how it is doing and an echocardiogram around the same time to followup on his heart situation.

Monday, June 24, 2013

Yearly Visit a Success

Isaac ready for his yearly visit to PCMC Cardiology
Isaac started with an Echocardiogram

Isaac gets an EKG before he visits with his cardiologist.

Isaac has been blessed to only need a yearly visit for the past few years.  Last June Isaac had a heart cath to close the fenestration in his Fontan.  Ever since the heart cath, Isaac's oxygen saturations have been in the low 90's (which is really good for his condition).  Today the cardiologist said that his heart is stable.  I am relieved to know that nothing has changed for the worse.  He still only has half a heart, and he still has a leaky tricuspid valve, and this does not mean he is cured, however he is able to live like a healthy boy for a while and that is a huge blessing.  One piece of good news this time is that his medicine has been decreased to one time a day and will possibly be eliminated next visit in a year.

Monday, May 20, 2013

Isaac is a Toughboy

Last night I was reading through my email and I came across a membership permission from a website for kids that Isaac had signed up with.  I asked him if he had signed up for this, and he said yes.  I looked at the login name with surprise, thinking maybe his dad helped him come up with his login name, so I asked him if he had help picking out a login.  Isaac said he did the whole thing all by himself.  The name he chose for himself was "Toughboy."  Wow I love how he came up with this on his own.  I am glad Isaac realizes that he really is tough.  It's good to know that he has developed a good self esteem.  I am so blessed to have this toughboy as my son, he never ceases to amaze me.

Wednesday, December 26, 2012

Isaac's Christmas 2012

Isaac's favorite gift this Christmas is his "Angry Birds Knock on Wood Game."  He plays with it over and over.  Isaac likes to build various towers and knock them down, by catapulting angrybird characters at his towers.  Isaac also received an Angry Bird Shirt and Puzzle, among his presents.  Isaac was extremely excited for Christmas this year, as he usually is.  He enjoyed getting a phone call from Santa a few days before Christmas, it made Christmas fun.  Although Isaac believes in Santa and enjoys getting presents, he knows that the true meaning of Christmas is celebrating the birth of Jesus Christ and worshiping him.  A few days before Christmas, Isaac received an envelope in the mail.  The envelope was filled with Christmas cards from a Seminary class in American Fork.  We pulled out one card at a time and read them, taking about an hour to read them all.  Isaac was overwhelmed at the love these people showed him, and even more, his parents were overwhelmed with grattitude for these special cards, which had so much thought put into them.  It is really nice to know that there are still a lot of good teens in the world, with so much to offer.  I can see the teens that wrote these cards making great progress as future leaders.  What a beautiful spirit of Christmas these cards brought.  It is interesting to think that 10 years ago, we were anxiously awaiting the birth of Isaac, and wondering so much about him.  I am thankful we have been blessed to have the past ten years with Isaac, it is more than the doctors ever believed he would live.

Sunday, October 7, 2012

It's Fall and Isaac is back to school

Isaac has been back in school for a little over a month and is enjoying the fourth grade, especially because he gets to have Mrs. Wright again.  Mrs. Wright was Isaac's second grade teacher at CopperHills Elementary, she is very organized, caring, and the best choice for Isaac.  She is good at making him laugh, which makes hime at ease with her.  Some teachers are intimidating, and frusterated with Isaac's issues related to his disabilities, although he behaves well.  I am extremely happy that he is in her class, she knows Isaac well and truly cares about him, and watches over him better than any teacher ever has.  We look forward to a great school year. 

Since Isacc's heart cath, this past June, Isaac's heart has been doing well.  We are excited to see him have more energy than he has had for a long time. We hope that Isaac stays healthy, and can wait a long time for his next surgery.  His next surgery is most likely his hearing in his left ear, within the next year probably.