My heart is full

God, I love my kid.......but he kills me with number 14.  He's been to the west coast, New England, NYC, Florida, etc. yet he says he's traveled to PA!!

The end of elementary school

I'm really not sure how this has happened. How did he go from kindergarten to fifth grade? I'm full of emotions.  Excited that my boy is growing up and becoming more independent.  Sad that my boy is growing up and becoming more independent.  I miss not being number one in his life.  I know it's a good thing but it hurts my heart nonetheless. So now we have begun the beginning of the end of the elementary years.  Sigh.........

Off the board!

After 2 years of group lessons and 3 years of private lessons, Evan is finally confident enough as a swimmer to go off the diving board! I'm sure I've already written about the fact that Evan has never done anything when people have expected to him to.  Eating, crawling, walking, potty training, riding a bike.....you name it.  So, he's done really well this summer in the pool and today he decided he was ready.  His swim teacher thought it was a good idea and so off he went! Mike got a video on his phone so hopefully I'll be able to post it because it's priceless.  The look on his face was one I'll remember forever.  

Mike's dad

Mike reminded me that today is the anniversary of his dad's death.  July 27th, 1978.  His dad was diagnosed with MS when his mom was pregnant and 10 years later he was gone. So, Mike was only 10 years old when he lost his father. Of course I immediately thought of Evan.  Yes, I look at him and think he's growing up but in all honestly he's still a little boy. No little boy or little girl should lose a parent at age 10.  It just breaks my heart to think of Evan going through that.

All Together Now

Our Life with Evan

Our Life with Evan

A fellow EA/TEF mom started a blog called Bridge of Hope, a place to support the treatment and research of esophageal atresia/tracheoesophageal fistula and the families of EA/TEF children. I originally wrote this for our NICU newsletter at work and thought I would submit it for the blog.

Scars

A couple weeks ago I posted a devotion that a fellow TEF/EA mom had written about the scars on her daughter's body. I have always told Evan that his scars are a special part of him.  Without those scars, he would not be with us today. I love the way the mom said it in the devotion.  Her daughter's scars  are reminders that God was able to help the doctors heal her. The scars are proof that she is loved. I truly believe that as well.  God was with Dr. Teich, the man who saved my baby's life the day he was born and 13 days after when he repaired his esophagus.  God was with Dr. Cotton, the man who was able to reconstruct Evan's airway when he was 18 months old so that he could breathe through his nose and mouth like everyone else. God was with Dr. Popp, the man who was able to remove his extra thumb when he was just a year old. Whether or not the physicians themselves believe in God, I know that God has given them the gift of healing.

I asked Evan if he would mind if I took photos of his scars.  He thought about for a minute and said that I could.  I just wanted to document the proof that he is loved.

My perfect boy

 The trach and reconstruction scar

 The scar down the middle was made the day he was born-part of the surgery needed to put in a feeding tube.  The little one to the right is where the tube was for 3 1/2 years

 Tiny little scars from all the IVs he's had over the years

The area where Dr. Cotton took cartilage from his ribcage to help create an airway for him

 His thoracotomy scar, right at the shoulder blade. It runs horizontal from front to back. This was made at 13 days old when they repaired his esophagus.  The puckered scar is from a chest tube

Left leg-broviac/PICC line scar

Right leg-PICC/broviac 

Right hand where his extra thumb was removed