Pierced!

Yep...we did it.

Got Taylor's ears pierced today.

I have to admit I was somewhat hesitant to go through with it, and nervous about her reaction, but when I thought about everything that our little sweetheart has endured, ear piercing seemed pretty minor.

And it was!

She was amazing, cried for less than 10 seconds. Before we headed out we put some emla cream on Taylor's earlobes (thank you for the tip Chantel). We took her to Merle Norman. First they marked a little dot on each earlobe, then they put the tiny earrings into the guns. Two ladies drew their weapons, counted to three, and fired in unison. In a split second Taylor's ears were pierced! It happened so fast Francis practically missed recording it!

Holidays are Joyful

What a whirlwind!

Much to our surprise, Marissa actually slept a little longer than usual on Christmas morning! Maybe that was her present to us! She was very excited to head downstairs to see if Santa brought her a dollhouse like she was hoping for...and yes, he delivered. It's bigger than she is! And he brought Taylor a new highchair, exactly what she needed! We opened all our gifts and captured the aftermath of wrapping paper piled high! We have been so very blessed and spoiled, Christmas was very good to us. We have been enjoying lots of rest and relaxation and family time together over the holidays, Francis has been home since Christmas Eve and doesn't go back to work until the 4th of January. It's been so nice having him home.

 

Christmas Fever

Hard to believe that Christmas is already here! We've been in Christmas mode full force around here and enjoying every minute of it. We took the girls for the token Santa pictures. We had Grandad take our family Christmas photo for our cards. Marissa was a great participant this year...she helped me make Christmas cards, she decorated a gingerbread house, she helped decorate cookies for Santa, she did some crafts, and she had her preschool Christmas concert! Fun times. I was in a baking frenzy the past few days, we are well stocked with Christmas cookies. Better late than never! I made some special cookies to take to the hospital that said 'love from taylor' and even some dog cookies for Buddy!

Marissa and Taylor are snug in their beds. The cookies, milk and Kahlua are out for Santa, and carrots for the reindeer. The excitement of Christmas morning just hours away!

Tearful Goodbye

Had a very emotional night tonight. We said a tearful goodbye to Lana, Taylor's developmental aide for the past year and a half. It was a hard decision to make but our time slot wasn't working for Taylor anymore. Lana's been working with her in the evenings since September, Taylor was just getting too tired and wasn't working as hard. Lana has really become part of our family...helping, working with, and loving our sweet Taylor every day. We are so sad to say goodbye. Taylor has made some steady gains over the past year and a half, and Lana has been a big part of that. We will never forget what you have done for our Supergirl, thank you for loving her.

xoxo

Feeding Troubles

Pool group at the hospital today. That's always fun. Good to see our friends. Nice to see Taylor happily kick her legs and make a splash.

From there we went for a feeding assessment. Feeding has not been going overly well. She will not take the bottle very often, and the times she does take it, she hasn't taken more than 30 millilitres. That's 2 tablespoons. Not very much. Getting discouraged. Tried some pureed solids today as well. She took a couple spoons, managed it okay, but not great. She's doing a bit of gagging, even with the bottle.

The recommendation is to continue trialing the thickened formula and the pureed foods to maintain and practice feeding skills. Watch Taylor's cues for her readiness for spoon/bottle (opening her mouth). Try to drop food at the front of her mouth.

The therapists are curious if Taylor's spitting up and increased discomfort as mealtimes progress might be due to problems further down the digestive tract, and that perhaps following up with GI might be appropriate.

Tough Questions

I was sitting in Starbucks a few days ago. Taylor was in her wheelchair hooked up to a tube feed. The woman sitting next to us suddenly asked me, "What's wrong with her?". Had it been anybody else, I think I would have fired back "What's wrong with YOU?" But I didn't. She her own special needs and told me she had cerebral palsy. One special soul curious about another. I answered her questions and I wasn't at all put off by the first time someone in public has asked me what was wrong with my sweet Taylor.

But today brought the question I knew was coming.

We were all getting into the van and out of nowhere, Marissa asked, "When is Taylor going to walk and grow up?"

I felt my heart drop. I knew this was coming, it was just a matter of time.

I told her that Taylor is special, that she might not walk and talk and do things that other kids do but we really hope that she does, and that she is going to need lots of help from all of us. When she asked "why" we said that it's because of the seizures and the 'boo boo' in Taylor's brain. She was satisfied with that answer.

I am not. My heart feels very heavy.

Tis the Season

Christmas parties underway and already two under our belts!

First up, last weekend was the PennWest Children's Christmas Party. Craft table, play area, and of course Santa himself. It was craziness...loads of kids, not enough tables, sugar overload, Santa excitement...YIKES!!!

Today was the CNIB Children's Holiday Party. The girls both enjoyed themselves at this one. For Marissa it was cookie decorating, craft table, fishing game, drum circle, and playing the piano with her partner-in-crime Liam. Taylor had some time on a wonderful sensory blanket, enjoyed the music in the drum circle beside her friend Annika, and got to play in some water with Nessie, the musical water toy.