Meeting Ms. Avery May

We arrived in Connecticut a week early in order to attend the second planning meeting for Avery's Bike Run benefit to be held on October 7, 2017. Team Avery is still looking for volunteers to help at the benefit. If you are interested, follow the Team Avery Facebook page for updates. There will be one more planning meeting before the event.

https://www.facebook.com/teamavery2017/

We finally had the opportunity to meet our Butterfly Baby, Ms. Avery May Silva. We made arrangements with my niece Kristin to arrive in the morning before Avery woke for the day. Funny how big sister Alyssa was also still sleeping. These sisters are so very much alike, yet so different. They have the same full lips and dark hair. Alyssa is a beautiful healthy teenager; Avery was born with Epidermolysis Bullosa, a rare genetic disorder that causes her skin to blisters with the slightest friction. While the girls slept in, we had a nice visit with Kristin and big brother Mason, who is almost five years old. He loves to play video racing and enjoyed showing me how he drives backwards on the racetrack. He giggled when the game announcer yelled at him to get into the pits for a reprimand.

Avery and Alyssa both woke in happy moods. Alyssa visited with us and went through my bag of Butterflies for Avery to find one she'd like to keep. Of course, it was purple. Purple is Avery's favorite color! I looked up the meaning of the color purple. I was surprised that I didn't find "strength" on the list of adjectives. What I found was "dignity", "devotion" and "magic". My niece Kristin is devoted to advocating for Avery while giving her the best quality of life possible. The magic comes from all the support they have received on this journey!

Alyssa, she picked purple!

Alyssa, beautiful big sister to Avery May!

I was a little afraid to hold Ms. Avery. Her arms and legs are swathed in wraps to help protect her skin from friction. We can see the healing blisters on her sweet little face. The ones under the wraps, as well as along her underarm and back are like second degree burns. The worst blisters are internal, along her digestive tract. They make it hard for Avery to nurse. She is very tiny, more like a newborn than a 10 week old. She hasn't gained weight since birth so the Doctors have agreed that she would benefit from a feeding tube. It breaks my heart that she will have to endure this surgery but her family is so happy for the option. They will do anything to help Avery thrive. In spite of her challenges, Avery is a happy baby. She tries to roll as mom changes her diaper. She is attentive but Mom says she is stingy with smiles. Today, she smiles for us often!

Kristin and Avery

Mason loves his baby sister...Avery adores him back!

Avery has big blue eyes!

She is a mellow baby

Avery plays Peek-a-boo during diaper change

Avery smiles for Auntie Beth

Pure sweetness!

Avery smiles for mama!

Auntie Beth with Avery. She has a natural mohawk

Auntie Beth with Mason and Avery

So alert and curious

Sweet baby girl!

Sleepy baby

Avery in her swing

I am making and donating 100 butterfly pins for the Butterfly Baby Bike Run Benefit. They are crocheted out of cotton thread. One friend tells me she will hang hers on the Christmas tree in honor of Ms. Avery. I'm selling them for $3.00 each. If you can't go to the event but would like butterflies, let me know. I will get them to you!

Butterflies for Avery

I also make dish cloths that I give away to the people we meet on our Great Loop adventure. Mason picked a yellow one to use in the tubby. I'd be happy to sell them for Avery as well. They are $5.00 and make great dish cloths as well as fun gifts for kids!

Dish Fish

Mason shows off his Tubby Fish

We are off to Boston for ten days. We plan to stop back and check in on Ms. Avery before returning to Minnesota. When we see her next, she'll have the new feeding tube in place. Please, if you can, come to the Butterfly Bike Run for Avery on October 7th. The cost is $20 for a bracelet that gets you into the event and/or the bike run. All proceeds go toward the cost of Ms. Avery's care. EB will not go away but we can all help make things more comfortable for this little sweety!