We can now accept tax-deductible donations to Callie’s fund, thanks to our church. The church will keep donations to Callie’s fund in a designated account and will use it to pay her medical expenses and other associated costs such as materials to build a ramp. The church will also send you a receipt for tax purposes. Please visit our Donate page for more details.
We’ve also established a PayPal link to make it more convenient for those who wish to give. Please note that the PayPal link will go to our personal account for Callie, which is not tax-deductible. Our Donate page has the PayPal link.
Our church and preschool are organizing a fundraiser in September for Callie and the Gwendolyn Strong Foundation’s “200K for SMA” campaign. I’ll post details about the event soon.
Yesterday, a friend brought a Panthera wheelchair for Callie to try. Weighing about 8 lbs, the Panthera is one of the lightest manual chairs in the world. We put Callie in it and she immediately grabbed the wheels and propelled herself forward. It was very exciting.
Since we now know Callie is strong enough to use a manual chair, we’ll be looking for the model that’s best for her. A manual chair is very important because it will help with maintaining strength. We are still in the process of getting a power chair for outside and community activities.
Speaking of wheelchairs, we now have a new concrete pad in our backyard, the first step in building a wheelchair ramp for Callie. This was made possible by Steve Stewart who shared his time and expertise to make this happen.
This coming week, Callie has three appointments at Duke. She’ll be seeing an orthopedist for the first time and a neurologist who knows a lot about SMA. Callie will also have some lung-function tests and see her pulmonologist again.
The pulmonologist is aware of Callie’s feeding problems, and he’s determined to help figure out what the problem is: She could be eating less because she’s not hungry, or she could be hungry but unable to eat much because eating takes a lot of energy and she could be getting tired. We hope that by the end of the week we’ll have some good guidance about her diet.
We’ve mentioned in a previous post that Callie is underweight for her age. She’s so light that she can no longer be plotted on a growth chart and she’s still losing weight. An occupational therapist has recommended a high-calorie, high-fat diet to help her gain a few pounds.
After thinking about this for several days, we’ve decided not to implement her advice right away, but to keep an open mind as we learn more about other alternatives that aren’t as dangerous to her heart, circulation and digestion.
One alternative that seems drastic but that we’re considering is a feeding tube. We know that many children with SMA have a feeding tube surgically placed in their stomachs to help with nutrition or safety if they have swallowing problems.
We’ve talked with many SMA parents, and most of them have recommended that we not wait until Callie is sick to get the tube, since her health would already be compromised. Even a teenage girl with SMA told us that getting a feeding tube was one of the best decisions her parents made for her.
We’ve known for awhile that getting a tube was a possibility. We always want to stay ahead of problems and are hoping that this might be a solution to Callie’s nutritional needs. We will post more as we learn more.
We again want to thank everyone for their heartfelt concern and prayers.
When we first knew Callie had Spinal Muscular Atrophy, it bothered me that there was nothing to blame for her condition–no toxic chemicals during pregnancy, no pre-term birth complications. There was only God to blame, and I couldn’t fathom how He could have made her with this condition. And I still don’t know if He did.
But I’ve come to think that it doesn’t matter if God gave Callie SMA. What does matter is that God takes our tragedies and allows purpose to flow from them.
That doesn’t change the fact that I wish this wasn’t happening. I wish we had a cure so Callie could have the life I imagined for her: playing sports with her brothers, learning to put on makeup, walking down the aisle. But I also hope those dreams I had for her life will fade so that I will not hinder her purpose, whatever it may be.
I may never understand how losing her muscles and possibly her life has a purpose, but I will always believe that it does.