Misty VanderWeele's Blog (5)

Luke is a SENIOR !!

I feel deeply blessed, Luke is still with us. This is the first time I thought I could write, you see I didn't believe Luke would live past 14...NOW HE IS MY SENIOR!!

After his health scare last year things have been AWESOME...he started using a bi-pap at night for sleep...his heart rate is normal and his appetite, well lets just say...TEENAGER !!

Luke will be 18 in December!!! Is going the entire school day not because he has to, but because he wants to, he only needs 3… Continue

Added by Misty VanderWeele on September 3, 2009 at 9:09pm — 5 Comments

Go Forward... Step Back..Breath...REACH OUT!

July 24th will be 13years on this DMD journey with my son...I must say it has been one heck of a ride! Luke is now 17, going into his senior year which I never thought would happen...He just took his college aptitude test...he is going into AutoCad...He is smart, compassionate, caring, brillant with a great sense of humor and I can honestly say we are friends tackling this DMD thing together!

Here are Luke's chapters from his life journey:

Crawled at 8 months

Walked… Continue

Added by Misty VanderWeele on July 15, 2009 at 11:28pm — 2 Comments

Re-authorizaton of the MD Care Act.

I just sent this letter to all my Alaska government officials to get them to sign the Care Act today. I feel totally uplifted!! Thanks to PPMD's incredible website. They have made this process incredibly easy. Go to their www.endduchenne.org website and check it out. Look under tab, Speak Up.


My name is Misty VanderWeele a born and raised Alaskan. I live and work here on the family farm in Palmer. My 16 year old son Luke,… Continue

Added by Misty VanderWeele on July 3, 2008 at 1:17pm — 2 Comments

The George!

Anyone one of you that uses a urinal will understand this. The last thing you want to do is ask your son do you have to go pee or worse, do you need to use the urinal. I was completely thrilled when Luke came home and said "it's George time", I said "what??" He repeated "its time to use the George, you know mom, when people say they need to use the John, my aide at school come up with calling the urinal (George) so nobody knows that I have go." I thought how clever and very funny. Now… Continue

Added by Misty VanderWeele on June 27, 2008 at 1:47pm — 3 Comments

Today: Praying for Strength,

Today I am patiently waiting for my sons blood tests results. Since Feb. he has had a very high heart rate 115-142bpm, has lost about 15 or more pounds and at this moment we don't know why. I am trying not to worry about the unknown. Because worrying is like rocking in a rocking chair, you are going back and forth without going anywhere! I keep telling myself, Misty his heart function is fine, his oxygen levels are great, he has done very well up to this point so STOP!

I found this quote… Continue

Added by Misty VanderWeele on June 20, 2008 at 2:00pm — 1 Comment

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