New Wheels for Ella's Wheels...(by Michael & Lindsay)

We knew this time would come and here it is...

Ella is thriving as she deals with SMA. She enjoys many pleasures in life. She's getting stronger as she continues with her Spinraza treatments, she recently spent a week at MDA Camp and loved it,and she's growing, too.

At this point, she has outgrown her current wheelchair. We have submitted our request for a new wheelchair to the insurance company and the process has started. The only glitch in our plan is that the new wheelchair will not fit into our current car (which has a rear entry ramp and an easy lock system). So it has come upon us that we need to purchase a new van and have it modified with a side entry ramp (we can transfer the easy lock system to the new chair and van).

The purchase of the van is something that we can partially provide for ourselves by using the trade in value of our current van. But the total cost of the van with the modification will be about $75,000...this van has to last us at least 10 years as it will continue to support new wheelchairs she gets in the future. 

To this end we have created a GoFund me account for people to donate funds (if able)...the link is as follows:

https://www.gofundme.com/new-wheels-for-ella039s-wheels

We greatly appreciate any and all donations to this chapter is Ella's life...it means so much to us that she has a network of family and friends willing to help in any way they can.

(Please feel free to share this blog post and/or the GoFundMe page as you see fit)

Turning Ella's Corner...(by Michael)

A corner has been turned and Ella's on the "straight" path to recovery. Her posture looks incredible as she sits in her wheelchair.

Before this post goes any further it's important to us to send out a thank you to all of you who prayed for, thought of, and supported Ella throughout the past month...there is truly power there.

Since we  have been home the progression of her healing has been astonishing to watch. Upon arrival in Naperville every movement of hers was filled with pain from some part of her frail body. Sleeping, moving, changing diapers, and bathing took 3-4 times as long as they usually would have had there not been a surgery. Keeping up with the medication regiment was imperative yet came at a price...constipation...which of course has its own remedy; this remedy was fully implemented. 

Each day we saw gains and losses in terms of how she felt and her pain level...two steps forward and one step back seemed to be the call. Amidst a lot of screaming and crying we managed to get through our days in time to prepare for the nights. Toleration of overnight liquid feeds, turning for optimum positioning, and changing soiled diapers became the protocol each night. Not to mention being woken by an alarm to administer overnight meds. 

The corner she turned was never really in sight; the one that got the ball rolling for a smoother recovery...a predictable recovery---a recovery that took one step forward and had no steps back. Toileting became easier, underwear as opposed to diapers entered the scene; toleration of overnight feeds brought much needed nutrition to her body and her fight. Sleeping through the night gave her body a chance to heal and supplied her with the energy for the next day in order to participate in family fun. 

She enjoyed spending time with family over the holidays. She beamed with pride when family members commented on her physical stature--namely straight! She loved the presents she got and always kept the real meaning of Christmas close to her heart. 

I truly believe it was the time she had with family and friends, alongside the pouring out of thoughts, prayers and support that is responsible for a recovery such as this...

Thank you for turning Ella's corner with us...

Ella...23 days after spine surgery