We’re pleased to announce 2 exciting fundraisers for this month. A wonderful friend, Ruth Edwards, will be donating a  portion of all her Mary Kay sales to support  SMA research and Callie’s fund at our church. You can order via e-mail, internet or traditional catalog. Click here for more details.

Also, on Wednesday the 22nd, our church is hosting an event, Spaghetti Night with Callie. It will be a lovely spaghetti dinner, with a speaking  session after the meal. Callie’s pediatrician, Dr. Anderson, will share some facts about SMA and the challenges these children face. I will also be sharing our personal story about Callie. Here are some more details.

We are grateful for the love, support and time that so many people are dedicating to make these fundraisers possible.

Today Nathan, Callie and I spent the entire day at Duke. We met her neurologist, Dr. Edward Smith, for the first time. He was very kind and knowledgeable. However, I left his office feeling disappointed. I think I secretly wanted him to walk in and say, “You haven’t heard about this yet, but we’ve had a huge breakthrough and we think we can treat little Callie and see great results.” We’ll return to his office in six months for a check-up.

We then saw her pulmonologist, Dr. Richard Kravitz, who could be considered her primary specialist. Lung function is critical for children who have SMA because the chest muscles that help them breathe are weakened. Dr. Kravitz helps coordinate a lot of Callie’s care. She had lung tests that were fine and we’re working on some allergy problems she’s been having that have contributed to her increased congestion.

Callie also had an EKG (a tracing of the electricity in the heart) and an echocardiogram (an ultrasound of the heart). We got these tests because SMA impacts the autonomic nervous system, so we wanted to have a baseline test. Her EKG was normal and we haven’t heard officially about the echo, but we expect it to be normal as well.

We were also very pleased to learn that the nutritionist at Duke thinks that Callie is doing very well with her current diet. She gave me some good ideas about certain things to add to her diet, such as Pediasure. Callie has gained an appropriate amount of weight for a child with SMA since her visit to Duke in June, so we will definitely not be getting a feeding tube right now.

We saw the orthopedist on Wednesday and he said exactly what we expected him to–that it was nice to meet us and he would keep an eye on her spine. Scoliosis is inevitable but he doesn’t think we need a brace right now.

Thanks to Sandy, who took care of our 3 boys, in addition to her own 4 children.

We have 2 exciting fundraisers in the works right now and will post details about them on the site by Monday.

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.

Callie had her swallow study at Duke today and all went well. She cooperated until the end, when she finally realized that something in her pudding and drink didn’t taste right (barium). She had not eaten for several hours before the study, so she gladly took whatever they gave her at first.

SMA weakens all muscles, including those that are used in swallowing. This can lead to aspiration–when food or liquids enter the lungs. A swallow study is an X-ray with barium that highlights the inside of the mouth and throat so the doctors can see where everything goes as the patient eats or drinks.

The speech therapist and doctor feel that Callie’s current diet isn’t putting her at risk for aspiration since we feed her a lot of soft foods such as yogurt and sweet potatoes. They recommended another swallow study a year from now; sooner if she develops feeding issues. The speech therapist also recommended using a sippy cup instead of a regular cup so liquids won’t flow into her mouth too quickly.

She will be evaluated by an occupational therapist in about a week to asses how she is doing with different kinds of foods and textures. She’ll also be followed by a nutritionist, who will address all the details of her diet, such as caloric intake and weight gain/loss.

Thanks to everyone for reading and subscribing. We also want to thank Paula and Angela, who kept all 3 of our boys during our trips to Duke this week.

Sometimes I almost forget Callie has SMA. Other times, I can think of nothing else. When she takes my earrings, puts them up to her own ears and grins, I wonder if she’ll reach 13–the age I’ve arbitrarily set as being old enough to get her ears pierced.

I’ve already accepted that she won’t walk. And I don’t mind that much. Some days, I feel certain that a treatment will be developed that can at least prolong her life. Other days, I think that’s a fantasy.

I look at Callie and can’t imagine life without her–the way she dances by nodding her head or by wiggling like a worm if she’s lying down; the way she shakes her head and says “No!” when she sees Peter coming to take her toys; her rendition of “Wheels on the Bus.”

Early in her diagnosis, I wondered to a friend why we couldn’t be a regular family–the people whose idea of a catastrophe is spilling coffee on their best suit. To which my friend replied, “But are they really the lucky ones?”

Not long after that, I was in the grocery store and saw a little girl about Callie’s age. She had some of Callie’s features and even had 3 older brothers like Callie does. I stood there, mesmerized. It was like visualizing a parallel universe in which everything that mattered in my life was fine. I watched her eat a cookie, turning this way and that.

I thought of Callie, who rides in a baby seat at the store because she can’t sit up in the cart for more than a few minutes. I noticed the girl’s sandals; I knew she walked. I thought of Callie, unable to move her legs. I watched the girl and her family walk out of the store. I thought of Callie. And thought it was possible that I was the lucky one.

Callie went to Duke today and we met with genetic counselors, a physical therapist and a genetic and metabolic doctor. We learned that genetics are pretty complex, so we’re unsure about whether to have our boys tested to see if they’re carriers for SMA. Also, the company who did Callie’s genetic test does not test minors who have no symptoms of SMA. There’s possibly one other company that may do the testing; we’re still waiting to hear from them.

We’ve learned that there can be a lot of overlap in the different types of SMA. Some are clearly Type 1, 2 or 3. You also find a lot of parents referring to their children as Type 1/2 or Type 2/3. The team at Duke thinks that Callie falls  in the 1/2 category. This is based on the fact that her genetic test would indicate that she would be a Type 1 as well as the fact that she developed symptoms very early for a Type 2. But more importantly, they stressed that Callie is Callie. And we’re going to base her care on her condition as opposed to what “should” be happening. As one SMA mom told me, “Callie and her body will call the shots.”

The physical therapist was very skilled and encouraging. She told us that Callie is ready for power mobility. She’d like us to look into a wheelchair where she can actually lower herself to the floor while remaining in the seat. Callie also tried something called a Standing Dani–a motorized stander. And she loved it even though the battery was dead. The therapist pushed her around and Callie grabbed the joystick, thinking that would make her go faster.

One of our next big steps is getting Callie’s feeding evaluated. She’s having a swallow study this Friday to help determine if any of her food or drink is trying to get down into her lungs. The team also wants her to be seen by speech and occupational therapy. Callie has been known to hold food in her mouth and it could be because she’s weak or fatigued from eating. Or it could be that the consistency of some foods could be the problem. There’s also the fact that she hasn’t gained any weight, and has actually started losing some, for the last 6 months. I think that the possibility of her needing a feeding tube, at some point in time, is very real.

Another thing I addressed with the doctor is Callie’s temperature. She gets hot very easily, even when the room is cool. I’ve learned that SMA  affects the autonomic nervous system, so that she has more trouble controlling her temp. This has especially been a problem this summer and Nathan and I are facing the fact that we may need a newer vehicle sooner than we thought. (Anyone who’s been in our van during the summer knows why 🙂 A higher temperature just makes her work even harder to breathe, which isn’t something we want. Her circulation is also impacted, meaning that it’s not all that great in her legs. I’m not quite sure what we can do about this, if anything.

And last but not least, Callie is also being referred to an orthopedic surgeon. Spinal surgery is inevitable and it’s important to establish a relationship early on so she can be monitored.

Our trip brought some slight sadness–it was a reminder of how serious and fragile her condition is. But at the same time, it was very encouraging. The doctor was very impressed with Callie’s overall health. The key is to stay on top of everything and try to prevent problems before they start. The entire team at Duke was very compassionate and knowledgeable and I feel confident about the care Callie will receive as one of their patients.

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