Monday, December 23, 2013

A Little Christmas Feel Good

Every year Gwen's school offers its families tickets to The Polar Express in Williams, Arizona (roughly a three hour drive north of Phoenix).  For our family, traveling so many hours with a multiply disabled child for a two hour train ride just isn't on my "to-do list" at this moment in our lives.  So, last Spring at a parent meeting I presented the idea of recreating "The Polar Express" locally at Gwen's school.

My idea was accepted and I was now in charge of putting together this magnificent event I had conjured up in my brain so many months ago!!

Among the visually impaired family friendly activities:

My Happy Photography Company provided a photo booth set-up for families to dress up in silly winter accessories!
Tom Hanks...I mean my AWESOME and AMAZING husband played the part of narrator and dressed up as a train conductor!
        
A barbershop quartet (including Gwen's Aunt Diana) from Chandler High School's, The Treblemakers,  entertained us and each family was sent home with a brailed copy of "The Polar Express" book!
Thank you to all of my family, friends, parents, and staff that helped pull this off!  We had a great turnout, lots of positive feedback, and I'm hoping we can do it again next year, only bigger and better!

HAVE A VERY MERRY CHRISTMAS!!!
Love, 
Jesse, Emily, Gwen, and Quinten

Friday, December 13, 2013

Time to Catch Up, Part II

MOMMY THERAPY
One day back in May, I noticed a neighbor had placed an upright piano outside for trash pick-up.  I let a few days go by before I went over and tinkered on it.  "She" (the piano) was in need of some serious TLC, but I decided I was going to take on my very first renovation project!  From May until September, I (and some assistance from Jesse) worked on "her" while Quinten napped and Gwen was at school as well as some late nights when I needed some quiet alone time!
Before
Stripped and Sanded
Re-Stained
After
NEW BED
To this day we still struggle with bedtime.  Though we give Gwen Ativan to help her brain wind down and to relax, she has ALWAYS fought us at bedtime.  We have tried EVERYTHING! Melatonin, hard drugs, blue lights, sound machines, heartbeat simulation, rocking, massage, essential oils, aromatherapy, elevating her bed to help with reflux....this list could go on and on and on!

I was given a "phone book" size catalog of medical equipment and as I was filtering through it PAGE BY PAGE, I came across The Comfylift Bed by Positional Therapy Pillows, LLC.   There is a section entitled, "Does your child suffer from...." I must have checked off 90% of the items: Cerebral Palsy, choking/gagging, congestion, aspiration pneumonia, suctioning, G-tube feeds, etc!  Needless to say, we were sold just based off the description and the testimonials!


After talking with the creator himself, Mr. Horacio C. Rubio, I knew we had to have this bed!  The only downsides are that it is a stationary mattress (61 lbs!) so it does not aid us in lifting Gwen, it is non-refundable (for health and sanitary purposes), and it is roughly $1,500.00 out of pocket (I could have attempted to get this bed through insurance since it is considered Durable Medical Equipment, but if you have ever dealt with insurance, it wasn't even worth the fight!  We'd probably still be waiting!).

We didn't care how we would come up with the funds, we had to try something before Jesse and I ended up in the crazy house!!

HALLELUJAH!  The Comfylift Bed has been a LIFESAVER!   We have had The Comfylift Bed since September.  It has not resolved the issue entirely, but it has made a huge improvement in our lives!  We are all much happier and getting more sleep!

SPECIAL VISITORS
My grandmother from Michigan and dear family friend from the Netherlands came for a nice visit.  I'm so grateful we were able to spend a lot of time together.  We went to Butterfly Wonderland, English Rose Tea Room, out to dinner, and some good old r and r!

HALLOWEEN
Since I love all things DIY (Do It Yourself), this year the kids had two costumes!
By Day:
Quinten was Ace Ventura Pet Detective and Gwen was her teacher (inside joke), Ms. Jean, with glasses and hair to match!
         

By Night:
Elliot and E.T. Complete with light up heart!

DENVER
Jesse, Diana (Jesse's baby sister) and I made a trip to Denver to surprise Jesse's brother Jon (Gwen's Godfather) at his powerlifting tournament! He's a GIANT breaking records, lifting some 700-800 pounds! 

  
                                        

SISTER-IN-LAWS
After almost nine years, I am no longer the only In-Law!  In the past few months Merle and Linda gained two daughter-in-laws and one on the way!  Congrats to everyone!
             
David and Tiffany
Hawaii
Cody and Lauren
Seattle
Kevin and Jessie Leigh

Tuesday, August 13, 2013

The Best Summer of Gwen's Life (so far)!


ADAPTIVE BICYCLE
This past spring I began searching for a fun activity the whole family can participate in.  Lucky for us Gwen's school received a brand new Rifton Adaptive Bicycle.  Gwen's school's physical therapist brought the bicycle over to our house for us to see and Gwen to test.  There is no chain, only cables that easily propel the bike forward and backward as Gwen pedals.  If Gwen is having a hard time pedaling, there is a pull bar for us to pull her.She had a blast, but I felt like this activity would be short term since her head and trunk control are minimal.

WIKE
After weeks of online research, testing out a Weehoo, and visiting local bike shops, I came across the Wike (manufactured in Canada).  It is a bike trailer, jogger, and stroller all-in-one! It is the perfect activity for our whole family!  Since the Wike is meant for older children, we used Gwen's Special Tomato (the chair we purchased from Gwen's 3rd birthday donations) for more support.  Luckily, it arrived just in time before it got too hot! 
   

VACATION
We headed up north to Pinetop to get out of the heat and spend time with Jesse's family.  We did a little nature walking with the Wike and took Quinten and Gwen on their first boat/fishing excursion!
  

BALLET
Gwen participated in ballet lessons through Ballet Academy of Arizona.  The teacher, Ms. Caroline,  was so gentle, so patient, so sweet, so delicate, and so kind.  We danced to music, we trotted around the room, we stretched all kinds of muscles, and we played with new textures!  It truly was one of the funnest activities I have been able to experience with Gwen. 
(Shout out to Ms. Amanda (Gwen's Classroom Aide) for the tutu!)

Aunt Diana even joined in on the fun! 

SUMMER SCHOOL
Gwen attended Summer School "Camp" at Foundation for Blind Children.  

SWIM LESSONS
Gwen took swim lessons at a local indoor swim school (until she got pneumonia from aspirating water).

MISS CAT 
We hired Miss Cathleen (Miss Cat) as Gwen's Habilitation Specialist for the summer.  Miss Cat came over 15 hours a week and did EVERYTHING with Gwen; therapies, social interaction activities, swimming, art projects, bathing, cooking, feeding, etc.!  It has been wonderful having an extra set of hands to work with Gwen especially when Quinten demands so much of my attention! 

Miss Cat and I spent a lot of time together this summer and I feel like I have gained a little sister and Gwen has another Auntie! Miss Cat has to leave us to go back to college, but it is so important for her to know that she is an amazing person and she was such a good fit for our family!  Jesse and I thank Miss Cat from the bottom of our hearts for being so incredible from start to finish (hopefully this isn't the end)!

Monday, August 5, 2013

In the Blink of an Eye

1 Month
2 Months 
3 Months


4 Months
5 Months
6 Months
7 Months
8 Months
9 Months
10 Months
11 Months
12 Months

While I was pregnant, I prayed constantly, "Hey God, how about you go easy on us this time?!" Joking aside, my prayers were answered because this little guy is as easy as they come!   After coming to terms with Gwen's brain injury, Jesse and I felt gypped and robbed of the joys parents are supposed to experience their child's first year.  However, to watch Quinten evolve over the last 12 months has been a wonderful healing gift for us.  

Quinten has truly brought peace to our home.  He is an incredible little brother and an amazing son!

Happy 1st Birthday Q-Ball!