Sunday, July 29, 2007

Sunday swing time

Our little mister had fun swingin today. It was good to get out of the house and have some air time. Luke just enjoys outdoors so much. We need cooler weather for sure here in Tx. It was hot, hot at 9:30am. Whew. Much love family and enjoy, A

Video of Luke swinging...

Sit and spin manually

Our Luke can sit and spin now! Whoohoo----that's us doing the wave above.

Sunday, July 22, 2007

Taking joy in the smiles

Hello loved ones, it's not about the water fun in this blog. It's about the smiles. Yes, we are seriously taking joy in that our baby can smile.

Our sweet baby love is smiling soo big. Ohhhhh, wished you could see this in person. It's amazing and a miracle.

For those of you blog stalkers...can you see Luke's mikey button? That's where we feed him. In the SN world (SN=special needs) that area would be called his Stoma. It's a very clean and beautiful stoma. :)

And..I had to include some pics that were just too adorable with his new hat. Isn't it so cute?

Love ya'll!

Thursday, July 19, 2007

As of July 19th, 2007 finally diagnosed


We got the call from the Mayo Clinic today. Luke has officially been diagnosed.

He has the Rapsyn gene that they suspected and it's one of the most treatable and optimistic gene mutations of CMS out there.

Our child is healed. Thank you Lord, we are in amazement.

We are still in shock. It's almost hard to believe that our baby is 2 days away from being 20 mths old. It has taken us this long to get here. But, so worth the wait.

Loved ones, we love you. This is just a chapter closed. By God's grace, we hope to see a book in Luke with many more chapters.

We are so elated. Luke honey, your the love of our lives. Nothing has changed...the only change is now we know what to pray for specifically and the rest is God.

We love you so much. Mommy and Daddy

Friday, July 13, 2007

Video of Luke's's amazing

Hey everyone, UPDATE ON LUKE.

He's doing great. He's not regressing....but day by day we are seeing his strength maintain and then today even after I posted on P2P..he did something pretty cool.

Honestly, I wished I could explain in words what it's like to see such will in a child and know that their limitations are something that they can't control. It's very hard for me to watch without tearing up almost daily.

There are times when people say "I don't know how you do it". Well, I always respond.."yes you do, you would eat bugs if stuck in a jungle...we all would". Not sure where that came from but one day I told someone that and it just stuck.

The bottomline is that if STUCK IN A JUNGLE..we would all submit and eat bugs. The human body was created by God to survive. This I am convinced. God's you go: My baby's will.....