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.
The only practical thing I can think of doing is offering for Margaret and me to come take care of the boys when you need to drive Callie somewhere. Do NOT hesitate to call and ask! Our credentials are five years of grandparenting.
You are a dear family whom everyone at FUMC HP loves.
Thank you for sharing your story about Callie! What a beautiful little girl you have and what a honor God has given you and Callie to be her Mom! Our children are special wonderful gifts straight from Him. You now have the opportunity to experience God and His grace and love in a way few of us ever will. Take every moment and drink it in and love like you never thought possible! You and your family are in our prayers!
Love you!!
Dede Reid and family!
The photo of Callie is precious, but we know she is even 1,000 times more precious than we can see with our eyes! We thank God she has two loving and special parents to help address her needs. It is good to read Callie is cooperating as her treatments are administered. You know you have our prayers and best wishes. Please let us know if there is anything else we can do here in WS to lend our support!
Our love….Dan & Faye
Although our church has been praying for Callie for quite some time, it is so wonderful to be able to receive updates on her this way. When I first looked at her, I gasped at how much she looks like her Aunt Alicia! Her beauty is as stunning as her story. Thank you for sharing your story. It seems God takes our greatest misery and turns it into our greatest ministry when we tell our stories. God bless you and all your precious family!