History

Sunday, November 13, 2005 5:09 PM CST

Just wanted to send along another thank you the entire Johnson family! We went to a fun run today in Milton MA in memory of my friend Rachel's son Ricky, who lost his battle to Leukemia 5 years ago at the age of 4. Many people whom we had never met, wanted to come talk with Connor (luckily we were outdoors and germ free!) and I took the opportunity to ask everyone to watch the Extreme Home Makeover show next weekend.

For the first time in 3 1/2 years - heads were nodding up and down (instead of the typical shoulder shruggs) when I spoke the words Spinal Muscular Atrophy!! One person told me he had read about it in the paper and another told me he had heard it on the Radio (assuming WEEI for the extreme yard sale). In any event, the good work of your family excepting this awesome Extreme Home and opening up your lives to the world, has already begun. I can't wait to see the awareness build on a national level after the show airs!!

So thanks again Heidi and Tripp, for not only opening your doors, your private life, etc. (which I know at times must not be easy) but for helping the rest of raise some Extreme Awareness!!!

My Best-
-Karen

Saturday, October 29, 2005 5:24 PM CDT

We went to the big event today - wooo hooo was it crowded - over 2000 people someone said!

Okay it was so great talking with Johnsons and seeing all the SMA families and kids...not to mention Curt and Shonda Shilling - but THE most emotional moment for me was meeting a couple that lost one of their sons in 1998 or 1999 to SMA and another son to CP. I burst into tears when she was telling me her story. They live right here in Lincoln MA!

She didn't know that a network of families for SMA existed! She had heard about the event on the radio and heard the words Spinal Muscular Atrophy and had to come - so glad she did and I sure look forward to talking with this family more!

It just floors me that there are families out there that we just don't know about....

Karen

Friday, March 4, 2005 10:16 PM CST

I almost feel guilty posting such news with the recent loss of so many precious SMA children. However - I know all of you support those in need as well as help celebrate the good - so with that - My little guy Connor (a.k.a. smiley Reilly, the Con Man) is turning 3 - whoopie, yehaw, whoo hooo!!! So many to thank for the inspiration to get us here today. The knowledge from so many families that we have been in contact on how best to help our little guy to be as happy as he is today - has far surpassed any knowledge from any medical professional - some of you should open your own medical centers!!

Despite his daily medical challenges - he wakes up singing everyday, wide eyed and ready to abosorb all that is around him. Such a love.

Thank you, thank you, thank you to all the special people in his life!

Karen

Thursday, November 18, 2004 8:34 PM CST

Connor turned 2 years and 8 months old on November 4th, 2004. He continues to wake up each morning singing away and ready for the day. I call him bright blue eyed boy and he blinks quickly to show off his long lashes. He had a tough week last week with his heart rate in the 200's for about 10 min and then he settled down into the 180's for the rest of the morning. I was ready to call the doctor when he took a nap and when he woke his heart rate was much closer to normal - 100's-120. I really think after his morning breathing treatments and cough machine that he experienced a bit of reflux. We have changed his morning medication schedule so that he gets both reglan and priolsec before his breathing and cough treatments. This seems to be helping.

Connor has a bunch of new toys from early intervention - singing and dancing tiger and singing and dancing Santa - these are from Walmart that his friend Lily's Mom alerted us too - they come already equiped so that his switchs plug right into them. One of his nurses has been working with him to get him to activate the toggle switch with his left hand and he is doing quite well. He has already mastered turning toys on and off with his legs moving in and out.

He is really interested in reading books - especially the Power touch system by fisher price...santa has already bought him a couple of new books to put in this as his Elmo noisy day is getting quite boring!

We had a sad day today with the news of his friend Cole, earning his wings. Cole was 2 years 2 months old and loved the veggie tales. We had a visit from a lady bug right after bath time...we think this was his angel friend Taylor telling us Cole was home and was now safe. We will miss you Cole!!
Karen
Proud Mom to Connor, Tim, and Owen

Thursday, November 18, 2004 7:03 PM CST

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