4 Months SVT FREE!

I never thought I would EVER get to say "Miss K has been SVT free for over 4 months".  This is a huge milestone for her!  Her last SVT episode was mid December 2012.  I'd love to say I have relaxed but I'm actually not calm about this at all, I keep waiting for the bomb to drop, it's like we're walking on egg shells and any moment they're all going to smash to dust.  The absolute longest Miss K has ever gone SVT free was 3 months.  We're a month past that and still moving right along.  I really hope I didn't jinx it by telling everyone.  Let's all just **Knock on Wood** just in case.

About a month ago we found an app for checking heart rate.  Daddy just recently upgraded to a smart phone a few months ago and we were eager to see what there was for heart apps.  Amazingly we found a whole bunch of heart rate apps for free.  We downloaded a few and tried them all on Miss K and ourselves to find which one seemed most accurate.  Turns out the best free heart rate app we found is called Cardiograph and it works pretty well if used correctly.  So now whenever we feel we need to check Miss K's heart we pull out one of our phones and get the Cardiograph app going.  Of course she hasn't had any SVT episodes for us to see if it will chart a heart rate that high but that's OK, I'd rather not know at all than have her go into SVT and get to try it out.

Miss K is doing great.  She's been very cranky with her Eye Teeth (or Canine Teeth) slowly coming in.  They're taking their dear sweet time and putting her through a lot of misery, I wish they would just pop through and be done but instead they come in and then swell up and disappear again.  The poor thing is grinding her teeth and chewing on anything soft that she can get her hands on.  She is also refusing to eat a lot of foods, practically living off of yogurt lately, she likes the cold on her teeth and it doesn't take any work to chew it up.

She is potty training as well.  Yes, I do encourage early potty training.  Big Brother started potty training at 21 months, my choice, not his, but he was ready and didn't argue it one bit, by 22 months he was completely potty trained and mostly accident free.  Miss K has a very different personality than Big Brother though so I did not plan to just drop everything and take a week potty training her.  I knew to take my time and let her decide it was time on her own.  At 18 months old she decided that if Big Brother was peeing on the potty she needed to as well, she surprised us by asking to go potty out of the blue one day.  After that first day we pulled out our potty training frog potty and put it in the bathroom Big Brother uses, from then on we encouraged her to use the frog potty any time Big Brother went potty.  Some days she was OK with it and other days she wasn't.  She sat on the potty with her diaper on more than with it off lol.  But at 19 months she started asking to go potty constantly and was actually using the potty every time with minimal accidents in her diaper.  So just after she turned 20 months I put the diapers away and put big girl panties on her, she was thrilled.  Since then she has rarely had more than 1 accident each day, pee accidents that is, she is still having a very hard time pooping on the potty for us but we're just taking it one day at a time.  It's nice to be down to just one in diapers again!  Well, one in diapers full time anyway, of course Miss K is still in a diaper through the night and I'm still putting one on her during nap though most of the time she wakes up dry.

Everyone else is doing great!  We can't wait for summer to grace us with its presence lol.  This Utah mountain weather is really annoying at times.  We've been going through many cold, miserable days with a bit of snow here and there and then suddenly we'll have 2-3 days of 70-75 degrees and sunshine but then after that small tease we're back to the cold, miserable snow days again.  Mother Nature really needs to make up her mind and just stick to one or the other.

Miracle Ryker

A year ago I posted about a sweet baby boy I had started following on Facebook and Blogger.  Miracle Ryker is from Utah, his parents found out he had Heterotaxy and a list of heart defects and decided to share their story with the world via Facebook.  I can't remember how I found out about them just before their baby was born but I do remember sitting next to them in the Cardiology waiting room at PCMC while there for one of Miss K's check-ups.  I didn't say anything to them, all I did was smile and nod understandingly as they sat there waiting for their turn, Rachel was still expecting Ryker and I remember thinking how sad it was to see a young couple in there before even meeting their baby.

I followed Ryker's story from day one and fell in love with him and his amazing family.  Just days after delivering Ryker and being told to take him home and love him, he wouldn't live more than 8 days, Ryker's sweet family decided to do all they could to save their son, they looked into Boston Children's and decided that's where they were supposed to be.  Ryker's parents did all they could to get him to Boston for the best medical treatment available.  They spent 14 months there, all but 8 weeks of that was in the hospital.  Amazingly they were able to take Ryker to their Boston home for 8 whole weeks and then it all came crashing down.  On April 26th Ryker lost his fight.  Ryker is now pain free and perfect and whole in heaven.

I was devastated when I logged on to Facebook and the first post that came up was "At exactly 9:40am EST our sweet little Ryker earned his Angel Wings & left this earth to be in the loving arms of our Heavenly Father. We don't know how we will possibly make it through the night tonight without our little Miracle, let alone a lifetime! We love you Ryker, with all our whole hearts & we'll miss you more than words could ever possibly describe!!!"  I cried my eyes out.  So heartbreaking.

The heartbreak got worse as the week went on and I kept seeing posts from Miracle Ryker's page asking for donations and help preparing for his viewing and celebration of life services.  I wish I could have helped them in some way but all I could do was offer my love and support.  I attended Ryker's viewing Friday May 3rd.  I didn't know if Rachel would know who I was, I spent a lot of my time standing in line trying to figure out how to let her know who I was.  She and I had spoken over the phone a few times and I had helped her create a beautiful canvas through my company Heritage Makers, a few consultant friends of mine joined me in donating the money for Rachel to publish the canvas.  I was surprised when it was my turn to give my respects, I walked up to the Warner family ready to have to explain myself when Rachel looked up from her temporary distraction and cried "LaCee!  You came!", her tears flowed and she put her arms around me in a tight, heart wrenching hug.  She went on to tell me how sweet I was and how grateful she was to see me.  In my shock at not needing to tell her who I was, I completely lost all words.  All I could do was let the tears fall and hold this sweet woman.  I only wish I could have prevented myself from freezing up, like I tend to do, there were so many things I really wanted to say...I wanted to let her know how much I looked up to her and her family, how amazing she is as a mother, how strong she is and how lucky her children are to call her "Mom", so many things I wanted to say that all just got lost in my tears.  I am so grateful I went.  I wish with all my heart I could have made it to Ryker's celebration of life the next day.

Fly high sweet Ryker.