Saturday, July 25, 2015

You have a face for YouTube...

Family Fun

In June, we launched a gofund me campaign to raise money for a wheelchair accessible van. My kids and I have enjoyed the Holderness family video's for awhile. This is the kids "shout out" to the Holderness family asking them to spread the word  about our campaign.


Saturday, June 27, 2015

2014/2015 update

July 2014: Celebrating 6!! This picture says it's been a crazy ride but we are having fun!
August 2014: A day at the beach. Getting some extra minerals in the diet, from the sand...
September 2014: a HUGE milestone Alyssa started kindergarten! As a kindergartner she was eligible to join Girl Scouts. Like her older sister before her, Alyssa became an official Daisy!
October 2014: The school year has been buzzing by...
November 2014: So thankful for a better  year. Alyssa's hair had been getting very long. We decided to cut 16 inches off and donate 13" to Wigs for Kids. Great clips did the cut for free! We should have done a before and after shot. Alyssa's hair had reached down to about her waist and after the cut was just below her ears! A few months after the cut  she received a certificate and because she is a Girl Scout, she also received a patch for her donation.
December 2014: Alyssa's class had a field trip to the mall and she got to sit on Santa's lap. She was so excited.

January 2015: Alyssa was in the hospital for surgery and had an extended stay due to some GI issues. Danielle, one of our favorite Child Life Specialist came by for a visit with some bubbles. The child life program is great. They provide toys, and other distractions for our sick children while in the hospital. The Child Life Specialist program is a great resource for families in the hospital and at home too . 
February 2015: Karen and Rick Santorum have a daughter a few months older than Alyssa, that also has Trisomy 18. They wrote a book, Bella's Gift, sharing their journey as special needs parents. They stopped in our area, so Alyssa, her sisters and I went to Barns & Nobles to get the book signed. Alyssa met and impressed the Santorums' by introducing herself with her talker (push button  device with a recorded voice- provided by her sister). Alyssa was excited to see all the people. Karen and Rick Santorum were very sweet to her.
 Alyssa meeting Karen and Rick Santourum

Alyssa using her talker to introduce herself

 Rick Santorum signing a copy of Bella's Gift, with Alyssa's big sister.
March 2015: Everybody is Irish in March, right? Alyssa with her St. Patty's bow. It was great to see a smile on her face because she had spent the previous six weeks home with pneumonia. We opted to stay home and teleconference with her doctors because there were so many bugs at the hospital that we didn't want to expose her  to anything else.

April 2015: Alyssa and her siblings did our annul Easter egg hunt.

May 2015: Alyssa participated in the Special Olympics for the first time. She raced against another student in the gait trainer and took home a 1st place ribbon!!
Alyssa is looking forward to turning 7. This year has been the year of fulfilling possibilities. Alyssa began using a gait trainer to learn how to walk. She is successfully taking steps, who knows what this next year may bring!!