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Monday, May 20, 2013

Faces of SMA

Enjoy, education is priceless...

http://youtu.be/CH7uKLe3Fsk



If you were paying close attention to the latest Faces of SMA video you may have noticed something different. We have updated the information on the types of SMA; going from 6 types to 7. Meet Ian. Ian is the reason we have learned about VRK1 and we want to educate you all about this extremely rare type of SMA. Ian is the fourth person worldwide to be diagnosed with the VRK1 variation of SMA. Knowledge is power and it just takes courage to educate people. Learn more about VRK1 by visiting http://ghr.nlm.nih.gov/gene/VRK1

Saturday, May 18, 2013

The World

On Friday, I went with Ian on a field trip to DC. Stops included The Capitol, Martin Luther King Memorial, Lincoln Memorial and finally the Air and Space Museum. After seeing some of the sites at tne Museum, the store had to be visited. With the help from Stephanie, our wonderful "sitter", Ian picked out a model helicopter for himself. Then it was time to find something for Becca. A paper weight with a globe in it was the perfect gift ..



while showing one of Ian's teachers his purchases, she said "Ian you are giving Becca the world"..what a perfect gift without even knowing.
THE WORLD is what we all give each other.

Saturday, May 11, 2013

10 Years Later

It is hard to believe that 10 years ago on Mother's Day Weekend....Becca came home. Wait a minute, so did Ian. When we left the hospital with Becca on Saturday, May 10, 2003 we were told we would have another week before Ian was ready for discharge. Imagine our surprise when the phone rang on Sunday, May 11, 2003 and we were told he was ready for discharge. They could probably keep him another night but really he was ready. As Brian said back then....how do you tell them to keep your child?

So 10 years later....Happy Homecoming Weekend our sweet baby girl and boy.

Thank you for making everyday wonderful.

I may not be perfect but when I look at my children I know that I got something in my life perfectly right. -Unknown

Beginning Of May

May has started off just as busy as April finished. Ian had many doctors appointments, all of which went very well.

The doctors at the pain clinic were happy to see him out of the PICU. They continued with the plan they started when he was in patient by starting to taper some if his meds. The patches we use on his feet at night will continue as they are a hit. And if at anytime during the taper his pain increases we stop.

His appointment with the muscle clinic also went well. They too were happy to see him in clinc and not in the PICU. The occupational therapists checked him out and did a small assessment for some changes to his wheelchair in addition to a possible new one. Now we wait to go back to the wheelchair clinic and try somethings out.

One step at a time.....