“Our job is not to save her, but to keep her alive until they find a cure.” Those words were spoken between me and Lindsay on the night we found out Ella had SMA. We were in a place that no parent wants to be...knowing that your innocent child has a terminal illness with no cure or treatment. If you go back onto our blog pages and look at the historical entries you can see the journey we have taken is one of harsh realities around many corners. We watched as our daughter, our “Squishy”, lost more and more abilities. We watched as she struggled through her days and her nights. We watched as the delicate fabric of life came undone before our eyes. As time passed we got Ella on an Amino Acid Diet, got her into therapies, and took a proactive approach to her care; only then did we see a plateau effect in her skills and abilities. She didn’t seem to be losing skills nor gaining them either. And things always got worse when she had her surgeries. The surgery recovery came at a ...

The day was a cold and dreary Sunday. Clouds hovered overhead all day long threatening rain. The wind blew little white flowers off the tree in our neighbor's back yard. Lindsay and I decided to go out on our back stoop to sit and talk, like we've done a million times before. The stoop leads to a pea gravel area surrounded by a fence (to keep the dogs in).  Lindsay has a pair of forearm crutches and she decided to use them because they left her arms free to do things. We sat with each other and talked about our life, what's coming next, and how we're going to handle everything. A few sprinkles found their way to us and we decided to go inside before it started really raining. Lindsay started to get up on her one foot and grabbed the crutches and put them on. She lifted herself onto the stoop and reached one hand toward the house for support. One of the crutches slipped on the wet pavement and her body twisted in an attempt to right herself, the crutches, still attach...

We have six wheelchairs in our house, two walkers, three pairs of crutches, a cane, a knee scooter, and an iWalk2.0! Four wheelchairs belong to Ella, one of the pair of crutches belongs to Henry and the rest are Lindsay's. Lindsay came home from the Marionjoy Rehabilitation Hospital today (5-18-19)...and brought all of her necessities with her. When I arrived at the Rehab Hospital Lindsay was sitting in her wheelchair finishing up her last bit of packing. When our eyes met we both broke into smiles and I went forward to give her a hug. I started to straddle the footplates of the wheelchair when Lindsay said, "Uh uh, I'm standing up for this." She placed her arms on the arms of the wheelchair and got herself up on her one leg. She wrapped her arms around me and we hugged like we've hugged many times before. Just then a nurse entered the room and found herself a seat. I sat down as well and we proceeded to go over the discharge instructions with her. She talked...

Sorry for not updating sooner...I've been super busy with different doctors in and out almost constantly, PT/OT work, finally getting some decent sleep, and having lots of visitors (thank you - I LOVE seeing people! ❤️ ). I've finally turned the corner managing the crazy pain after the surgery (not even needing IV pain meds anymore!), and have become a lot more active...practicing getting dressed, walking around the unit using a walker, etc. Also, I just received the patholo gy report from the amputation, and the incision site showed NO sign of infection, so it has been eliminated!!! (I cried tears of joy  ☺️ ) This morning I was approved to go to Marianjoy Rehabilitation Hospital (part of Northwestern Medicine) in Wheaton for the next two weeks. I will most likely be transferring there tomorrow afternoon (Wednesday). I've met with a couple doctors/team members from Marianjoy, and they will be working me hard (good!!) for "pre-prosthetic" training (they sai...

Ava is 11 years young. A strikingly beautiful girl with hair long past her shoulders and wide brown eyes seen through her glasses. She has a laugh that spreads joy and always tries to find the humor in everything. She's confident, strong, and resilient. She's much like a flower, though...she's fragile. Ever since Lindsay went into the hospital to have her right lower leg amputated Ava's been tight-lipped. She is intolerant of her brother and sister  (more than usual)  and recoils when family time is mentioned (which is unlike her). She eats less than usual and that beautiful smile has been replaced by a frown. On Mother's Day, I took the kids to Dunkin' Donuts. Henry and Ella ate their donuts and sandwiches without missing a beat. Ava let hers sit in front of her as she gazed out the window. This is not like her at all as she loves sweets! She didn't want to participate in the conversation at hand. She didn't want a hug or even my hand rubbing on he...

Six of us (me, the three kids, and two grandparents) sit anxiously in the surgical waiting room. Lindsay had her lower right leg amputated due to a four year battle with a foot infection. The surgery is finished and I had already talked with the doctor...we're just waiting for her to come out of the recovery room. Ella sits at a table coloring a picture for her mother. Henry is doing a puzzle book, and Ava is on her iPad. I talk with Grandma and Grandpa. We wait. The call for Lindsay's family rings out over the people sitting in the waiting room. We gather our things and follow a staff member through the winding halls of the huge hospital. We finally get to Lindsay's room and brace ourselves for what comes next. Ava, Henry and Ella are excited to see their mother but they're unsure of what to expect in terms of what her leg will look like...they have no reference point with this, no experience. As we enter the room Lindsay is lying almost flat with her eyes cl...

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...