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.
Baby Parker Gender Reveal
{Gender Reveal September 2016}
I love surprises, and my husband loathes them. I waited until Sayla’s birth to know her gender, and I could do it again with this baby! Whereas, Patrick would pay hundreds of dollars to find out gender at 10 weeks with genetic testing. We decided to compromise and both be surprised at a gender reveal party at 17 weeks gestation. My best friend Alana, offered to throw us this shindig, and it was seriously the best party anyone has ever given me. We had the gender scan 9 days before scheduled party. The results were made available for front desk pick-up by Alana, ONLY, and required ID verification. She guarded this secret with her life, and says it was the hardest secret she has ever had to keep, BUT was totally worth it when she saw our reaction. We had the reveal at our home, and invited close friends and family.
Wishes Spectacular
{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/)
Best Day Ever at Disney World
{Best Day Ever – Trip to Disney World January 2016}
They say I’m a planner. This may be an understatement when it came to planning the best day EVER! I was packing heavy with my Disney travel tip book complete with written side notes and highlighted “must do’s.” I had a general timeline, but not down to the minute…obviously needed to allow room for flexibility…but not much. The pre-planning mainly focused on attractions Sayla would be able to take part in. Disney has a very thorough list of attractions and modes of transportation access for those with mobility disabilities. (https://disneyworld.disney.go.com/guest-services/mobility-disabilities/) Some of the attractions have ride vehicles modified for a wheelchair. We were able to roll her wheelchair into the vehicle and strap her chair down, as we would typically buckle up in a seat. Some of these rides included Its A Small World, The Many Adventures of Winnie the Pooh, and Under the Sea. It was so convenient! Other rides, we would have to transfer her out of her wheelchair. This includes unstrapping 500 straps (okay just 5), and disconnecting her feeding pump and tubing. Not a huge deal, but a little time consuming. Sayla would ride these attractions sitting in our lap. Some of these included Pirates of the Caribbean, Prince Charming Regal Carrousel, and Dumbo the Flying Elephant. With our game plan and matching shirts, Mommy, Diddy, Nini, Pappy, Miss Peggy, and Sayla were ready for the best day ever.
Make A Wish
{When You Wish Upon A Star – Trip to Disney World January 2016}
On average, Make-A-Wish foundation grants a child a wish every 38 minutes. The wishes are granted to children with a life threatening illness. No one dreams of having a “wish child” one day, but if you do have a child with a life threatening illness…having their wish granted is an absolute dream come true!! Sayla is non-verbal, but it is obvious how much she enjoys her Disney Junior shows, Frozen, sing-a-longs, being around lots of people, and getting special attention. (Duh, she’s my child) Therefore, Disney World became THE wish! It was a long process of paperwork, planning, logistics, and scheduling, but our Wish Coordinator was amazing and set it all up. We decided to split the week in half between Sayla’s father and me. That way, we could have our own time with her which involved our extended family as well. Miss Peggy (Sayla’s home health nurse), Patrick (Step father a.k.a. P Diddy), Sayla, and I traveled together. Then Nini and Pappy (my parents) met us in Florida.