It is the 8th annual worldwide Feeding Tube Awareness Week!
In order to raise some positive awareness, I thought I would share with you our feeding tube journey with Sayla. We get a lot of questions regarding her tube, especially from children. We hear questions like, “What is that?” “Does it hurt?” “Can she have chocolate milk in it?” “Why can’t she eat with her mouth?” We love answering questions and want to educate others as much as we can.
“Girl you my Hunny, cause you’re busy as a bee.” – P Diddy (the hubs)
January has been packed full of both exciting and scary stuff. This mama has been running nonstop. We finished off this month strong though with a day full of procedures for Sayla at Cincinnati Children’s Hospital Medical Center (CCHMC).
Sayla had three procedures done under anesthesia. We are so thankful the physicians worked together and that the scheduling department was able to organize it all on one day! Below is a lost of her procedures and outcomes:
I have heard many times “I don’t know how you do it all!” Special needs child, infant who breastfeeds, work, maintain household, organize Sayla’s healthcare…list goes on. Truth is, I don’t do it all, I have help. I didn’t always have help, but I will spare you the ugly details of my life before help existed! We do not have family that live close…not even in the same state, so finding help has not been easy. I don’t like to ask for help. Could be a pride thing, or I don’t want to bother anyone, or it could be that I’m a control freak? But I just cannot do it all on my own.
Sayla is a keto kid again! She was admitted to Cincinnati Children’s Medical Center November 14- 16 to initiate the ketogenic diet. This diet is a special high fat and low carb diet, designed to help control seizure activity in those suffering from epilepsy. Sayla was started on this diet at age 16 months for the first time at Children’s Hospital of Philadelphia for a type of epilepsy called infantile spasms. It took the diet approximately three months to stop these types of seizures. We kept Sayla on the diet for four and a half years, then decided to wean her off since she was having issues with high cholesterol. Unfortunately, Sayla developed a new seizure type this past August, that is spasm-like and causes her heart rate and breathing rate to increase for about 30-45 seconds at a time. She would have these spasms anywhere from once a day to one an hour. Instead of increasing her current seizure medication doses or adding a new one, we decided to go back on the ketogenic diet, and will continue to pray for seizure control once again.
{Wishes Spectacular – Trip to Disney World January 2016}
Day 2 may have been the Best Day Ever, but THIS day was Spectacular from start to finish. It was Mommy, Diddy, Nini, and Pappy’s last day with Sayla at the Disney parks, so we had a lot planned to see and do. Most of our photos are from Day 3 and we were able to capture so many memories. Warning: this post is mostly photos. Make-A-Wish and Give Kids the World included a Memory Maker/PhotoPass in our trip package. This allowed us access to photos online that professional photographers at Disney World would take of us and our adventures. I would highly recommend purchasing this feature if going to Disney! (https://disneyworld.disney.go.com/guest-services/photo-pass-service/)
