The Journey of a Sweet Little Boy and His Special Heart

Sunday, November 24, 2013


Oblivious is what I wish I could be.  Oblivious to the fact that time is moving at mock speed, oblivious to the reality that we fly out in 2 1/2 weeks, oblivious to the stress of planning and preparing, oblivious to the heartache and anxiety in my older kids. 
Logan is oblivious...
and I wouldn't want it any other way. 
This sweet kid of ours wakes up singing to himself every morning.  He sings while he plays, he smiles all the time.  He randomly comes up to me and says, "I wuv you Mom."  He can't get his picture taken if I am by him without putting his arm around my neck. (When Brad told him to smile he hurry and put his arm around me).
 He is PURE joy. 
He is PURE love. 
 I feel the burden so heavy knowing what is looming in his future.  I don't want the trauma of the hospital to take away his love and joy for life.  I want him to continue singing through life with a smile. 
I planted the idea in his head that the doctor could fix his heart so he didn't have to wear his oxygen anymore, and now he will ask me all the time when the doctor will fix his heart so he doesn't have to wear oxygen.  I pray this surgery does what it is suppose to, and doesn't make a liar out of me.  I really hope that he will be able to run fast like Tanner and play to his hearts content.
Some days I find myself staring at the wall for longer amounts of time than I would like to admit.  I get that completely overwhelmed feeling that I just can't do anything.  Brad has picked up my slack.  He has pretty much conquered Christmas all on his own (thanks to  It is really hard planning for Christmas not knowing where we will be. 
My sweet Ashlyn is having a hard time with us leaving.  She came to me the other day and said, "Mom, have you ever said something and then wish you didn't say it."  I said, "All the time!"  She had just come home from Activity Days so I assumed she said something that hurt one of her friends feelings and she was feeling bad about it.  I asked her what she regretted saying.  She said, "Well you know how you talked to me about you going to Philadelphia and you asked me if it was okay with me?  I know I said yes Mom, but I am not sure I am okay with it anymore."  Talk about a tug at the heart strings.  I asked her why she didn't think she was okay with it anymore and she said, "Well you know how hard of a time I have saying goodbye to you when you go teach on Monday nights, well I just don't think I will be able to say Goodbye to you."  My heart broke in pieces.  I know we need to do this for Logan, but I am leaving pieces of my heart here at home with my other kids.
Tanner is not one to talk or voice his feelings very much, but I know our "trip" is forefront in his mind.  This is the picture he came home from school with the other day.  When I asked him what the assignment was he said they just got to draw a picture of whatever they wanted.

Is that not the cutest kid spelling you have ever seen? 
(he still gets his b's and d's mixed up, the last page says, "To give my broth(er) a surgery."
I had this grand plan to paint my house to keep myself from going insane (because I won't take Logan anywhere right now for fear of illness so we are home A LOT).  I finally came to my senses and decided that was too big of a task to take on right now.  So instead I have been making blankets.  I took each kid with me to the fabric store and let them pick out exactly what they wanted.  They helped me make their blankets and designed them all by themselves.  I told them when they missed me when we are away they can wrap up in their blankets.  (I know completely cheesy) But they have LOVED them.  And I had fun making them.  I even made one for myself. 

So let the count down begin.... 2 1/2 weeks.  Let's hope we stay sane and healthy!

Friday, November 1, 2013

A new surgery date/Halloween Pics

Our lives just sped up a bit!  CHOP called and had an earlier surgery date come available.  We will now fly to Philadelphia Dec. 11th.  Pre-op will be the 12th, MRI the 13th, and surgery the 16th. 
5 weeks
I have a lot to do!
Sooner is better, he is ready. 
It calms my heart a little to not have surgery on a holiday too.  I didn't doubt that we would receive great care regardless of the day, but this is better... for a lot of reasons.
We hope to make it home for Christmas, but if we don't that is okay (reality is we probably won't and we really are okay with that).  Who says Christmas can't come a few days late.
I don't want to tell Logan about the surgery and cause him any unnecessary anxiety, but I have been trying to drop hints here and there.  Yesterday as we were eating lunch I asked him if he wanted the doctor to fix his special heart so he didn't have to wear oxygen anymore.  He thought about if for a minute and said, "No it's okay mom, I wike my oxygen it helps feel me better." I guess that approach won't work!
So I said, well do you want the doctor to fix your special heart so you can run fast like Tanner?  To this he enthusiastically answered, "YES! I want to run really really fast like Tanner."  This from the little boy who tuckered out after trick-or-treating at 5 whole houses (and that was with a wagon).  Soon buddy, you will be able to run fast like Tanner.
 He had his final cardiology appointment here in Utah before we head out to CHOP.  It was a great appointment.  He was nervous, but a little bribery went a LONG way. He was most anxious about getting his picture taken (x-ray) and the stickers they put on him for the ECG.  I told him if he was brave and let them do it I would take him to Target to buy a new car.  This worked wonders.  He walked into the x-ray room and took his own shirt off and stood right where he needed too (unfortunately he knows this drill all too well).  I asked him to give me a thumbs up because I was so proud of him, he said, "no, I do it this way" and gave me a thumbs down!  He wasn't happy to be there, but by golly he wanted a new car so he was just going to get it done!
He was afraid the blood pressure cuff was going to break his arm, and he didn't like them pressing on his tummy.  But we made it through with the help of his good friend Spider Man, and he got a new car!

 The crew ready to go trick or treating!
 His heart buddy Enzo stopped by for trick-or-treating.  These boys are something special!
Halloween in style... wouldn't you love to ride in a wagon!