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...

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...

Overnight (Wednesday -Thursday) : A night filled with some rest, times of turning from side to side, and complaints of pain in the tummy as well as the back. Finding a comfortable position was challenging, but throughout the night we managed to find positions that worked for a short while so Ella could sleep. Thursday, 12-14-17 : Today was moving day. Ella was transferred from the PICU to the Neurology Floor. With all of her machines and me following behind with her wheelchair, we made the trek from the 16th floor to the 19th. We were no more than in the room and hooked up when the Orthotics Team came to make a casting from her in order to make her specialized TLSO (body brace). The team slipped a cloth onto her like one might slip a cloth onto a rolling pin. The cloth encased Ella from the neck down right past her hips. Then they applied casting gauze; manipulating her body and pushing on the bed as they rolled it under her back. We waited a few minutes as the cast hardened and...

12-13-17 @ 1:00 pm: No position is comfortable. No words are reassuring. No relief has been reached. We traverse on the first 24 hours after surgery and pain management has taken a downward spiral.   Ella will remain in the PICU for another 24 hours. New meds and an increase in current med doses, change in rates, and tweaks of frequencies have been ordered by her pain management team. They are paying close attention to her hemoglobin as those numbers have dropped while at the same time monitoring her tachycardia (she has an increased heart rate alongside low blood pressure). With all the increases in meds and new ones introduced her respiration has slowed down a bit so we watch that as well. She has gotten very little sleep, has eaten nothing, and is allowed only small amounts of water.   This has been, without a doubt, a very trying time for us. It's difficult, to say the least, not to be able to provide comfort for her especially because she is asking ...

Through the generosity, encouragement, and support of so many people we were able to purchase Ella her new wheelchair that will stay with her for many years to come. Currently she is in the practice stage of this wheelchair but she is doing great! We are so very grateful that we have such a great community of friends and family surrounding Ella.  Thank you all... Take a peek---

As Ella grows older her needs change, mature, and expand. She’s at an age where she wants desperately to explore her world yet access to that world is hindered by SMA. Her power wheelchair gets her around most places but also confines her to certain places. She very rarely, if ever, goes to a friend’s house to play because of her power wheelchair. Just getting it into a house can be an ordeal. Even when friends come over to our house they have to stay on the first floor. Ella has a small manual wheelchair but she has outgrown it and she also cannot move it over carpeted areas (like our basement).  Just recently we discovered a lightweight, collapsible manual wheelchair called the "Zippee Zone" with a separate device with a power wheel that can attach to the back of the wheelchair to move the wheelchair along (called a “Smart Drive”). Unfortunately, insurance will not help pay for this chair, as they pay for her power wheelchair. If we purchased this manual wheelchair and dev...

Two weeks sounds like an eternity. Two weeks seems so far off.  Two weeks seems untouchable. Ella's first Spinraza dose is scheduled for two weeks from now!! YES--insurance gave her their final approval!! A treatment, that in our minds was far from our grasp; yet we sit in the kitchen talking about what that first injection will be like; we talk about what to expect, how to handle any pain, and ways to be realistic about waiting to see what happens next. In the art of writing there is always the author's intention to lead to a climax, a heightened awareness of what the story is all about.  You would think that this news would be the climax of the "Ella Story"---but dare we say,  dare we venture to ascertain,  dare we challenge the notion...that this is not the climax? This is not the high point for Ella? That this is just the beginning of new and exhilarating chapters in her life?  We hold hope for her---hope for wonderful things yet to come.   ...