Sunday, June 14, 2015

A lot to look back on…and thank you for being a part of it!

On our family morning walk today,  Lindsey and I discussed how far we have come with Bexley within the past year.  A year ago today was our first full day home with Bex after she had been discharged from the hospital.  We were learning to give her ACTH injections on our own at home and trying to educate ourselves on Infantile Spasms and what this would mean for Bexley’s future.  You may remember this based on our first blog post.

Of course, we didn’t know what the next year would hold (and we don’t know what’s in store for the next 100 years).  However, a recent family vacation helped sum it up for us.  This past week was our annual beach trip with Lindsey’s family.  This is always a great time, but this year it was an especially GREAT trip…and that was because our baby girl loved it! 

Bex's beach chair
You see, two years ago (Beach Week 2013), when Lindsey was pregnant we all talked about how much Baby Rios would love it the following year (2014 or last year’s trip).  Our baby would be roughly 9 months old and that would be a fun age to have him/her at the beach for the first time.  Our baby would be sitting and playing in the sand, splashing in the water, and potentially walking around looking at shells.  Well, as you know, our trip last year was nothing like what we had envisioned.  Bex was developmentally delayed, so she couldn’t really do any of that stuff.  Not to mention, she was a month into her ACTH treatment, which resulted in a very fussy and uncomfortable Bex (side effects of the medicine).  Don’t get us wrong, it was still a fun trip and great to hang out with family; however, it was a week that reminded us how different our reality was from the future that we had dreamed about the previous year.

Clapping for the tide coming in!
This year’s beach week was a whole different story.  Our girl LOVES the beach and pool!  She sat in the sand and played with it.  She loved having the tide come in while sitting in her little beach chair out in the water.  She had a blast in the beach house’s pool and her grandpa (Pappy) taught her how to kick kick kick – video below!  All in all, she had a blast....and we had a blast watching her enjoy everything!

The beach week trip is very similar to the Learning to Live in Holland story Lindsey wrote about last August.  Last year, we had just landed in Holland on our journey with Bex and it was hard not to feel sad about how differently things had turned out from how we had planned.  This year we experienced the activities Bexley could partake in, watched our little girl enjoy herself, and celebrated how far she has come without thinking about "what could have been."

Just Taking It All In

Not only did she enjoy the beach activities, but during this week, she started pulling herself forward on the floor…a tremendous feat for her!  This epitomizes her physical therapy accomplishments over the past year.  It may have taken a while to get here and she may not be covering a lot of ground, but she’s doing it on her own! We can hardly wait to show her Physical Therapist this accomplishment on Friday because it is something we have all been working hard on with Bex for awhile!

We want to thank you for following our blog and becoming a part of our lives.  Mostly, we are grateful for you rooting for our baby girl, Bexley.  I’ve described before how her situation is not filled with challenges, but opportunities…and I truly believe that.  Please know your support helps Bexley take advantage of every opportunity.  So once again, we thank you for helping Bex as she strives to move mountains!!!

-Chris and Lindsey

Thank You from the Rios Family!

Monday, June 1, 2015

Bex is a Big Sister...and a Little Otter!

Bexley is proud to announce that on Wednesday, May 27t,h she became a big sister!  Her brother Everett (Rhett) Tucker Rios was born.  While Lindsey and I are on cloud 9, we are also EXHAUSTED!!!  We are very interested to see how Bex will interact with Rhett as they continue to bond and we hope that he will help motivate her with her developmental goals.  Most importantly, we are thrilled Bex has someone to share her love with and we know they will grow to be great siblings.

"Hmmm...I wonder what this tastes like"

 Bex had her first swim class today!  The place we go to is called Little Otters (hence the title) and it’s an introductory swim program for kids.  Bex’s Physical Therapist recommended swim lessons as a great way for her to get PT in a different environment, as well as grow her social skills in a group setting.  Lindsey and I really didn’t know what to expect as Bexley has only been in pools on several occasions.  Sometimes she enjoyed it, but other times she did not.

Bex is a Little Otter...get it?

Once I took her into the pool she LOVED IT!  She had the biggest smile on her face and really enjoyed watching the other kids.  The toddler next to us started splashing and Bex mimicked him and thought it was the best thing ever.  The instructor was great and understood when I informed her about Bex’s low muscle tone.  She advised me that we could work on the things Bex feels comfortable with and just enjoy the experience.  It was a great time!

I was so proud of Bexley and how she did that I got a little choked up.  Lindsey told me the same thing when she was watching us.  Like any parent out there, you just want your child to be happy and enjoy life.  There have been times recently that Bex has been frustrated because of her limitations.  For example, she wants a toy across the room and all she can do is reach for it and start to get fussy and cry.  That hurts me every time and I know she is working hard on mobility and I am confident one day she will get there.  But throughout the day, she is reminded (as are we) that she can’t necessarily share the same experiences as children her age.

However, during this swim lesson, she was able to share an experience with other children.  Sure, she wasn’t kicking like they were or sitting up on the paddle board, but she was loving every minute of it. Her smile could have lit up the place!  It will certainly be a great opportunity for her to continue to work on other areas for PT…but even just as important, it is a great way for her to be a kid and enjoy the pool!

All Smiles!!!