Family Update

Oh just a little fun!  Both our kids love to be silly!

Family Photos

We just got family photos taken and they were the first professional photos we've done as a family of four.  It was important to me to get photos that show who we really are.  I wanted photos that were so beautiful that the first thing you see is smiles and warm hearts and not machines and tubing and how Ellie is "different".  I love the photo of the kids upside down because this depicts the happiness in our life.  I feel like photos like this allow me to visualize the beauty in our journey and see past the stress and add load we have in taking care of a medically needy child.  You can see more of our photos and read our photographer's beautful depiction of our family in her blog post.

It's a rare occasion Mom get's in front of the camera since she's usually the family photographer.

Ellie's dad is pretty cool!

Nathan, Ellie's big brother, already knew his dad was pretty talented but now Ellie knows it too.  Thanks to Bill from atmakers.org, Ellie now has several switch adapted toys.  Jeff has been working hard soldering and rewiring many toys.  Because Ellie has reduced strength and a lighter grip she's unable to push the buttons on most of her toys.  She misses out on the cause & effect that is so excited for most babies and toddlers... until now.  Ellie LOVES that she can make Violet her pal from LeapFrog work all on her own.

Somehow Violet is missing from the photo but you can see the switchboard.

Ellie is really enjoying the ipad

We've been trialing some communication apps on the ipad.  Along with the apps Ellie has been playing a few games.  She's getting pretty good at matching shapes but her favorite are the Sago Mini games.  I'm pretty sure she's addicted.  She knows how to figure all the games out and she talks to the little animals.  It's sooo soo sooooo cute!  I love that technology has allowed Ellie to do so much on her own that she wouldn't be able to do had she been born 10 years ago.

I don't know why this photo is sideways.  You get the point.

Ellie's first hospital admission

Ellie recently spent 9 days split between two back to back admissions in the PICU.  We had a very scary night that lead to bagging her for almost 5 hours straight and a ride in the ambulance.  When we arrived at the ED there were about 15 people waiting for us in the emergency room.  It was scary.  Lots of people were asking me questions.  I'd had two hours of sleep.  I was exhausted.  I cannot even explain how difficult it was to hand over my child to the professionals because her needs were outside of my abilities and scope of practice.  I know everything about Ellie.  i know what she needs when.  This time I didn't know what she needed but I knew what I would be doing had I been in charge.  I wasn't in charge anymore and it as very scary and so hard to sit back and watch and accept that the professionals know what they are doing.  I'm so thankful for all the nurses and techs and doctors and respiratory therapists who helped save Ellie and get her stable quickly.  

Ellie ended up being admitted due to pneumonia and atelectasis.  Ellie had a partially collapsed lung.  Cultures later revealed she had rhinoenterovirus.  Later cultures for pseudamonas showed up, two types.  On the next admission Ellie's cultures grew klebsiella.  It's not surprising Ellie needed a little extra support from the hospital.  That's a lot for any person's lungs to recover from.

After the second admission, Ellie came home with a shaker vest.  It's made a world of difference for her.  Her care is more streamlined and it's so much more efficient.  It's so nice to not be beating her with percussors all day long anymore.  We're so thankful for the shaker vest.  I know she'll stay healthier longer now.  I'm so glad I pushed hard to get her the vest and that her clinical outcomes proved what I'd been saying, Ellie needed the shaker vest!

Wash your hands frequently and stay home if you're sick.  Keep your kids home if they are sick.  Your kids get a runny nose when they are sick.  My kid ends up in the hospital if she gets sick!

Accessible Home Build

So if you haven't heard, we're building a house.  Our current house is a bi-level and our main living level is upstairs.  It's very frustrating that to go anywhere even to the backyard we have to haul Ellie and all her equipment and her wheelchair up and down the stairs.  It takes a lot of time not to mention strength.  Ellie's dad recently threw his back out lifting her wheelchair and he's now also in physical therapy.  Our new home is designed with wider hallways, wider doorways and an open floor plan.  I am so excited about how much easier it's going to be to wheel Ellie around the house so she can join in all the family activities like cook dinner or going outside.  Instead of stairs outside we'll have ramps so Ellie can get around.  At some point if Ellie isn't walking yet she'll be in a motorized wheelchair.  Her independence is so important for her mental and emotional health.  Because of this, we're also doing a fundraiser to put an elevator (Ellievator) in our new home.  At first we had planned the layout of our home in a way so that Ellie wouldn't NEED to go downstairs.  While this is true (unless there is a tornado warning) we've realized over time that she's not going to remain a baby or toddler.  Ellie is going to keep growing.  As she gets older she's going to want to be mobile and independent and she will want to join her family or her brother to the basement.  After learning more about kids with needs like Ellie we also realized we needed to build an area for Ellie dedicated to her therapy and therapeutic play.  A safe space for her to work on her exercises (which are assisted as of now).  We want to provide Ellie with the best life we can.  She deserves everything she can to be as normal as possible.  Ellie deserves to enjoy life and she deserves the close attention and proper tools to grow stronger.  If you're already donated to the elevator fund, thank you!  We truly appreciate your help and support!

Thank you for your love, prayers, and support!

Love,
​Team Ellie