LIVING

   HELLO.. It is I ... The long lost writer of this blog...  I feel like it has been so long since I posted last.  We have had a busy year... Enjoying life.. watching my little boy live....  It's like life is normal again, but different. Things we took for granted before his disease progressed,  that we have been given back after the surgery, have so much more meaning.
   In June, we went on a family vacation, which was fabulous.  We even enjoyed a helicopter hide.  Jake was swimming and hitting on girls.  It was interesting when we met a couple and the gentlemen said he had noticed Jake's scar and had wondered what had happened to him.  We do not even notice the scar anymore and Jake clearly is not self conscience about it. I guess to someone who is not use to seeing a scar like that on a young man, would tilt  their head and say, "Huh?" Regardless, we had a fantastic time in Myrtle Beach.
 
  In July, we attended our family reunion, and it made my heart smile to see Jake playing games with his second cousin who had an equally rough year herself, being diagnosed with Crone's disease.  What a great day watching these two amazing kids having the chance to smile, enjoy family, and just be kids.
   As I flipped through pictures of the last few months,  I am just amazed at how blessed we are...  just living and enjoying life.
                                                        
   

 

   This morning, we went on an hour and a half long tour walking through a place that has rescued lions, tigers and other big cats.  Did I mention we were walking... for an hour and a half... I know it may not seem like a big deal to most but to me it's amazing. I have this overwhelming urge to cry. As I type this I recall the first conversation I had with the president of HCMA, when I told her we walked a half a mile down the road and she said I would not be continuing those walks with Jake because he was at severe risk for SUDDEN DEATH. Ahh Haa! Now you understand where I'm coming from. It is amazing. A true blessing.

 Every night this weekend, Jake and Jennifer are volunteering at a non profit organization's Haunted house. We have to pick him up at midnight.  Just take a moment to think about where he was last year at this time.... only awake between 4-6 hours throughout the day... to exhausted to walk anywhere....It is truly wonderful to see him living... enjoying so many things that for so long he couldn't do.  Every time I see my little boy smile, knowing he is enjoying life, I can't help but to think back to last year when life wasn't so fun for him or any of us. It sure makes you appreciate the simple things in life.
   

 

one year

One year ago today Jake had his ICD implanted.  It amazes me to think how much we have been through in the last year.  Jake had his ICD read Tuesday, everything looked good.  Joey was checked yesterday and his septum hasn't changed so they said to keep doing what he is doing.  Jennifer is fine. No thickening at all.
The last year has been the most stressful ever .. and yet today, one year later.. Life is good!

On a side note,  About a month ago I was contacted and asked to call a mother whose 14 year old son was about to have a myectomy.  It was nice to be able to connect with someone that knew exactly what I was going through ( although if I had my wish no mother would ever have to experience it). Her son is having surgery on Tuesday. I truly believe your prayers helped me through Jake's surgery. So if you could take a moment and say a prayer for Brandon, I would greatly appreciate it.

grant me serenity

What if they see signs of thickening?  This is the thought running through my head as I sit drinking my coffee. It's been just over a year since Jake was diagnosed (He is doing great.  He sleeps until noon like most teenagers.  He is currently focusing on getting his driver's license, taking it one step at a time!) Which means it's time for Jennifer's check up.  HCM is genetic, so siblings should be tested every year until they hit 21, then just every five years.   Our appointment today is at 9:45.  So, if you could just say a quick prayer for my daughter, I would greatly appreciate it. Usually I have not problem writing down how I feel but today I just can't seem to put it into words, the anxiety, fear, helplessness... I'll be saying the serenity prayer all morning.

What I've been waiting for...

 Today my heart is jumping for joy. I can't even describe what this day means to me... it is the day I've been waiting for. Today, Jake attended my nephew's birthday party. ( Happy Birthday Chasen.. which is exciting but that's not what has me beaming)  Last night we were still undecided if Jacob would attend, however after much thought about protection and the risks, Jake decided he wanted to go.....He decided it's time to live.... Did I mention it was a paintball party? This kid who had open heart surgery 53 days ago was playing paintball today like a pro...

ok .. maybe not like a pro.. but not like someone too tired to do anything fun.. I can't even tell you how excited I am that he was able to play. Two months ago this would not have been possible. Two months ago he didn't have the energy to stay awake let alone play paintball.

Today my son is enjoying life... WOOHOO!  Today my heart is jumping for joy.  I'm so happy I could cry.... ok..ok.. so happy I did cry.

Check up

Wow. I didn't realize it had been so long since I had updated, Quick recap...  When we went back for the recheck hoping they would release us to fly home, they instead, re-admitted Jake because his white blood count was high.  It turned out to be an infection behind his eye... Like a sinus infection and nothing at all to do with the surgery. It was a scary time. He had horrible migraines (which he had never had before) and he would break out with sweat pouring off his body in a room that was 71 degrees.  The staff at Tufts were amazing. When they released him for the second time on December 22 and said we could fly home... we did just that. We jumped on the first available flight and arrived home around midnight. We were thrilled to be able to enjoy Christmas at home.. YEAH....Jake is doing fabulous. Seriously.
  Yesterday we went to our local cardiologist for a check up.  They did an echocardiogram.  It was funny how excited they were to see the difference.  Jake's septum now measures 22mm.... Huge difference from the 36mm it was when he went in. But I'm not sure what that means for my little guy because normal is between 6-12. I do know there is NO more obstruction and the pressure gradient dropped in half. YEAH. 
   I'm worried... but trying not to be overly worried.  I do remember the cardiothoracic surgeon saying he usually does the surgeries when the septum is between 18-22mm... Jake's septum after the surgery is 22mm???  However I do know...the main point of the surgery is to get rid of the obstruction which is what it did.
   I am also a little concerned because of the recent loss of Ben Breedlove.  My heart breaks for his family. I know, I felt as soon as Jake got the defibrillator that it would all be ok, because the defibrillator was our security blanket. It would keep him alive.  So it's devastating to hear of a young man who wasn't saved by his defibrillator, and makes you aware that there are other things that can happen.

     So we will just take it one day at a time... Appreciating every great day we have...  and he is doing great!