Life with a G-tube has been going well for Callie since she returned from the hospital a few weeks ago. Now that she’s getting more calories we have noticed a big difference in her energy level and her attitude.
She has been talking more, and she enjoys typical 2-year-old games such as peekaboo. She also throws typical 2-year-old fits.
Callie loves preschool and she has re-started her weekly physical therapy session. We’re working to re-start her aquatic therapy within the next few weeks.
This past Tuesday Callie saw her pulmonologist and her surgeon at Duke. The pulmonologist was pleased with Callie’s lung function tests, and we’ll soon be collecting data about her oxygen levels at home.
Callie’s surgeon was also happy with how she is healing. She is having a minor skin reaction to having the feeding tube present. The surgeon prescribed a topical medication to help with that. We’ll have to take Callie back in the next 4 to 6 months so the surgeon can change her feeding tube, a routine procedure that does not require sedation. Callie will continue to need her tube changed and adjusted throughout her life as she grows.
We’re hoping to attend the annual FightSMA conference in Washington, D.C., this spring, where Callie’s pulmonologist will be on the doctors’ panel. At last year’s conference we learned a lot about SMA and ongoing research to find a treatment or a cure.
Thank you for reading our updates and for your interest in Callie’s condition.