September Update

To all Sloan’s supporters,

We have received such an amazing outpouring of kind words & encouragement, prayers, meals and financial support. Willie and I don’t have the words to express our gratitude. I can’t imagine where we’d be right now without you all holding us up. It means the world to us, especially on the rough days when we need extra strength in this fight. And the days have been extra rough lately.

Physically & neurologically, Sloan's disease symptoms have been progressing. Essential functions like breathing and eating are a constant struggle for her, and it breaks our hearts trying to manage her daily "episodes" where she goes into a laryngospasm with stridor and she has desaturation of her blood oxygen levels. We have to constantly put her on oxygen support, suction out her secretions to keep her from choking or aspirating, and it's a roller coaster tracking her daily feedings and considering alternative feeding options because she’s not gaining enough weight or hitting physical milestones. It's a dual effort every day from both Willie and me to just keep her calm and comfortable so we can stay out of the hospital.

Sloan has continued to have dozens of appointments, which can really weaken her every time we go because she has to have so much blood drawn, not to mention she's running out of veins for them to stick. Each visit seems to cause terrible episodes, bad feeding days and the doctors usually don’t even give us any answers that will help her. Plus traveling to and from these appointments is a nightmare. Sloan used to love to nap in her car seat, but now she can’t get comfortable and the position is just primed for her to choke on her secretions. Trying to manage these episodes in the backseat of a moving car with travel oxygen, a nose frida and not being able to hold Sloan to comfort her is the absolute worst. 

This is all even trickier since I've had to return to work from maternity leave and Willie is now leading daddy daycare. Fortunately, my work has been really supportive and flexible, but still high stress and long hours. Willie’s job has also been supportive, but all of his paternity leave is unpaid. That was a very hard decision for us to have to lose his income for the time being, but because Sloan is immunocompromised and the COVID surges, we felt it was the best option for her care. So here is my shameless plug to please call your local politicians and urge them to pass mandatory paid parental leave legislation!

Sloan has been such a champ and continues to dazzle us with her smile and snuggles in the face of such adversity, especially because we can tell how crummy she feels all the time. We had some really encouraging news about her enzyme levels since her gene therapy in July and beginning her biweekly enzyme infusions. We just pray that her treatments will help her to grow, get stronger and reduce her symptoms!

Thank you all for your continued love, support and prayers!