Five Years

May 20th was Abby's 5-year anniversary. Five years sounds like such a long time. 

In previous years, the weeks leading up to this anniversary have always been filled with sadness. The reminder of what we lost and how things SHOULD be are usually in the forefront of my mind around this time of year. As well as an overwhelming heartache at the thought of what our sweet little girl has to deal with EVERY SINGLE DAY. I don't think that kind of pain can be experienced by anyone other than a parent. Watching your own child go through something so difficult is almost impossible to describe.

But this year was different. I decided a couple months ago that we would have a celebration for this year's anniversary. Usually I let the day go by without much discussion because I just don't want to think about it. But I'm not sad or hurting this time. I was actually looking forward to the date. Abby has come so far in the last 5 years and I felt like she deserved some praise for it. So we ate cupcakes and watched a special video that I put together with pictures and videos from the last 5 years of her journey. I've talked to her before about what happened to her and I have assured her on many occasions that one day she will be made whole again. But I thought it would be fitting to have a more formal discussion about exactly what happened to her and why we were celebrating. She was very attentive and loved the video.

Abby's Five-Year Video

Abby is such a hard worker. She has made considerable progress in the last year. She is determined to walk on her own. She wants it so bad! She is constantly trying to take steps by herself. A few weeks ago she got up to 17 steps in a row completely on her own! Amazing! Her balance has improved tremendously. She still has to work for it and find her balance each time, but she is doing really well.

She is trying to communicate more as well. We've been working on having her raise her hand to indicate certain things. We will say things like, "Raise your hand if you want ice cream" or "Raise your hand if you think _________."  At school she has even started raising her hand when her teacher calls her name in their daily roll call routine. So neat! There was one night at dinner when Anthony told Spencer it was his turn to say the prayer and Spencer said he didn't want to. Anthony asked him again to say it and at that moment Abby made a noise. It wasn't her usual throaty-sounding vocalization. It was a more high pitched sound and was actually coming from her vocal chords, which takes an incredible amount of effort. You can see on her face that she is straining to get it out. It is her real voice and we don't hear it very often. We refer to it as her "voice box." When she made this sound at the dinner table we asked her if she wanted to say the prayer. Anthony said, "Raise your hand if it's Abby's turn" and she immediately raised her hand. It usually takes her a few seconds to respond by raising her hand but this was immediate. Of all the things she could have spent that energy and effort on, it was because she wanted to say the prayer at dinner that night. Sweet girl. When it is her turn to say the prayer, Anthony or I will say a few words and then pause, giving her time to repeat it in her mind. Then we say a few more words and pause. She is usually pretty attentive when she knows it is her turn.

Last week Abby got a new communication device and she is starting to get the hang of it. She still needs assistance to use it, but I think she will eventually get to the point where she can use it by herself. I am excited for her to be able to take it to school with her next year.

Today was the last day of school. This year went by so fast! I can't believe that I will have a Kindergartener and a 2nd grader in just a couple of months. These kids are getting too old!

This has been a very exciting year for Abby. I can't wait to see what she does in the coming year!

Summer 2015

May 20th marked four years since Abby had emergency brain surgery to stop a massive bleed deep inside her cerebellum. And just two days ago we got this on video.

High top shoes + proper motivation = AWESOMENESS!!!
Abby will do anything for sweets. We put out a box of ice cream sandwiches and told her she could have one if she walked to it. Way to go Abby!! Her physical therapist recommended that we find Abby some high top shoes for better support and stability. The shoes definitely seem to be making a difference! Keep it up Sweetheart!

Abby started answering questions using YES and NO cards. This is something we tried years ago but she had no interest in it and refused to use them. I came accross the cards a couple months ago and decided to try it again. To my surprise, she started answering my questions. Sometimes she still doesn't want to do it (because really, who enjoys being interrogated?), but it is a start.

Abby's last day of Kindergarten was the day after her anniversary. Spencer wanted to wish her a happy last day of school.

 The following week we took a trip to visit my parents in San Diego. The weather was amazing. I wish we could have brought it back home with us.

We celebrated the 4th of July with family in town.

Abby loves to hide in the pantry. It's funny because she doesn't like the dark at all but for some reason she likes to stand in the pantry and close the door. It's cute to just see her little toes poking out under the door.

 This is how Abby helps with the laundry. Silly girl.

Spencer learned part of a song on the piano. He is quite proud of himself.

And now we are back to school. Abby started first grade and Spencer is in Preschool. I can't believe both of my kids are in school now. That just seems crazy to me.

Mr. Informative

Spencer likes to tell people about what happened to his sister. If someone is talking to us about Abby and how she is doing, he will join the conversation and add that Abby can't talk or walk, "because a long time ago her brain was bleeding." I just learned that he explained this to his Primary class on Sunday - even making sure to point out that the blood wasn't on the outside where you could see it, but that it was on the inside. They were having their Easter lesson, about the resurrection of Jesus Christ. The teacher was explaining that because Jesus was resurrected, we will also be resurrected and on that day when our bodies and our spirits are reunited, our bodies will be perfect. She used Abby as an example and Spencer was very eager to get up and tell in his own words what happened to her.

Spencer especially likes to remind his parents about his sister's condition. Sometimes when Anthony or I ask Abby a question, Spencer will say, "Abby can't talk. Remember? Because her brain was bleeding." 

Yes, Sweetheart, we remember.

Every so often he will say, "I really wish Abby could talk."

And I tell him she will.

One day.

#BecauseHeLives Abby will be whole again someday.

Little Miracles

Do you notice anything particularly awesome about these pictures?

Yep, Abby is standing up by herself in the middle of the room. We've been working on this for the past year. She can keep her balance for up to 15 seconds now. She's a little hit and miss about it though - sometimes she can do it and sometimes she can't. But she's trying. On a few occasions she has actually been successful in taking a step. She falls after taking the step, but she completes it before going down. When she used to try it before, she would fall as soon as she lifted her foot off the ground. Pretty awesome.

Abby had a sleep study done several months ago. Sleep has been an issue since the day she had brain surgery but I was never successful in getting her neurologist to see that. Apparently he doesn't think that a child who starts their day at 3AM on a regular basis is a problem. We tried all kinds of different tricks to try and get her sleeping better but nothing ever worked. So last summer we started seeing a new neurologist who agreed to order a sleep study, and it turns out there really was a problem. She has something called a central sleep apnea. When she gets into a deep sleep her brain stops sending signals to her respiratory system to breathe. That causes her to stop breathing which wakes her up, and then she is unable to fall back asleep. It's all a direct result of her AVM, which ruptured right around her brain's sleep center. The doctor put her on a medicine that increases her carbon dioxide levels in order to jump start her respiratory system and force her to keep breathing. So even if she isn't getting the 'Sleep-Breathing' signal from her brain, she'll get the 'Too-Much-CO2' signal. Ever since she started taking the medicine she has been staying in her room all night long. It is very, very rare for her to come out in the middle of the night anymore, which means the rest of us are finally getting some sleep too!! Hooray for doctors who are willing to explore different possibilities instead of just telling me that her brain is injured and she'll survive on limited sleep.

Over the past several months I have noticed that Abby has become more affectionate. For the majority of the last 4 years she hasn't wanted to be held or touched (which for the longest time was all I wanted to do...) but now she will give hugs when asked and if I ask her for a kiss she will lean her face into my cheek. She is not physically able to give kisses - her mouth doesn't pucker - but the idea is there and I love it. I especially love bedtime. She has become incredibly snugly when she is tired. All she wants is to be held and I would sit there holding her all night if I could - that's how much I love it. Sometimes she will even rest her head on my shoulder when we are reading. Have I mentioned yet how much I love this new side of her? Because I do. I love, love, love it! And we've been waiting far too long for it.

Abby wore a dress to church for the first time in nearly 3 years!!!

I still can't get over it. She has been wearing skirts for the longest time because for some reason she just would not tolerate dresses. Every year I buy her a few different options for an Easter dress, hoping that she will have changed her attitude about them, and every year I return them all because she puts up such a fight (last year she was so mad about it that she almost ripped a seam in one of the dresses!). But her favorite things to play with right now are magnetic dress-up dolls. She has Ariel and Cinderella dolls that she got for her birthday and she loves putting on all of their princess dresses. For Christmas we got her a dress-up sticker book. It has several different scenes with outfits to put on the girls in each scene (slumber party, ballet recital, etc). The only one she ever wants to work on is the beauty pageant page with all of the elegant evening gowns. Her interest gave me new hope and I decided to try again. I bought a few new dresses for her to try and it was a success!!! I still have to be careful to avoid belts, sashes, zippers or high waist seams, but oh my goodness....she wore a dress!  I am still so excited that I just might explode! Thank goodness for little miracles.

New York City

Anthony and I took a trip to New York City the first week in December. Our 10-year anniversary is coming up and we decided we wanted to do something big to celebrate. So we left the kids with Grandma and Grandpa and spent 5 days in NYC. It was amazing!! We are so glad we went and we're already dying to go back again.

Times Square

NYPD in Times Square

Looking down from the top of the Empire State Building...don't the buildings look like legos?

View of New Jersey

Top of the Rock (Rockefeller Center)

We had tickets to see Jimmy Fallon (aka the Funniest Man Alive) but his new baby decided to be born the day we flew in and all his shows were cancelled for the rest of the week. Huge bummer!!

Central Park

We loved looking around at all the apartment buildings. The detail and architecture is so cool.

Serendipity - home of the most amazing frozen hot chocolate!

Inside the subway... we got pretty good at navigating. I don't think we ever got lost.

The Manhattan Temple

Inside Grand Central Station

That's the Brooklyn Bridge in the background...

We took a water taxi around the southern portion of Manhattan.

The new World Trade Center building

9-11 Memorial

It was cold...

Everything was decorated for Christmas! It was awesome!

We saw a Broadway show - Mamma Mia

On the subway...our last night in New York

We also ate tons of really good food and went to a bunch of museums. I've never done so  much walking in all my life. But it was so much fun! We love New York!