We decided to get a Sea World Fun Pass since we are here for almost a month and will <hopefully> be coming back in December because it allows us to go as many times as we want to thru the end of the year. We had so much fun looking at the animals and exploring Sea World and it was so nice to not feel like we had to see everything in one day! Here are some of our highlights from Stella's first time at Sea World...
Stella petting the alligator at the Animal Encounters...she wasn't so sure about it
She liked to look at it more than touch it
Flamingos
Up-close with the Macaw
Mama Stella's Kitchen...
In front of the Sea Lions
Beautiful scenery
Stella had a great day at Sea World...she didn't throw up at all while we were there , she also didn't take a nap all day either (she was too excited and didn't want to miss anything!) We saw the penguins, the sharks, the sea lions, the dolphins, and the aquariums. Her favorite was a huge fish in one of the aquariums that swam right in front of her - it made her so excited! We went to the Sea Lions Live show and the Cirque de la Mer show and Stella loved listening to the music. We plan on going back a couple times while we are here on this trip for a few hours to enjoy the rest of the park :)
As we were at the park today, I realized some of the challenges about having a special needs child and some of the challenges people with disabilities face during outings. During our time at Sea World, Stella had two tube feedings...we set up her pump on her stroller and it is easiest to have her in the stroller during the feedings. At Sea World they want us to leave our stroller outside of most exhibits and all shows...we constantly had to explain that she was connected to her feeding pump so we needed to bring the stroller in with us. They were more than willing to accommodate our request but this required us to go in the handicapped areas...the handicapped seating area for the shows is not very large (about 8 "spaces" available at each show) and the walking area in the exhibits with wheelchair access was not always "prime viewing." Thankfully for us this was only 2 hours of our day there that we were limited in what we could see or where we could sit...but it made me realize how frustrating it could be for someone in a wheelchair. They would not be able to sit with their family during the shows (that is if they got there soon enough to get a space) and they don't get the same experience in many of the exhibits. I'm sure that this is something that is not just limited to Sea World but it was definitely eye-opening to experience the limits that are placed on something that is considered a "disability."
When we were sent home from the hospital in August, Stella was getting fed from her feeding pump at a slow, constant drip for 20 hours a day. We could choose any 4 hours each day to be free from the tube and the pump but the other 20 hours our lives revolved around the dreaded "Kangaroo Joey" (the feeding pump that we have not-so-lovingly named Uncle Joey) Over the past 11 months we have SLOWLY worked our way from an ng tube to a gtube (no more pinning her down to shove a tube down her nose into her stomach at least once a week), from continuous feeds to small bolus feeds during the day and 10 hours of continuous feeds at night to 5 bolus feeds during the day where she is fed for 2 hours and off for 1 and finally to 5 large bolus feeds during the day that only last an hour and NO FEEDS AT NIGHT!
David and I still have a love-hate relationship with Uncle Joey but it is nice to only have him take up 1/5 of our day instead of 4/5 of our day.
Stella is still vomiting daily but it has reduced quite a bit and we haven't had a 12x vomit day for awhile. It seems that the Alimentum formula is what she tolerates best but our ultimate goal is still to get her off of formula and onto a blended tube diet and eventually off the tube altogether.
Stella definitely understands the concept of putting food in her mouth and tasting/swallowing and we have made a lot of strides with introducing food. This past week she has loved sucking on watermelon, drinking water from a straw, licking a spoon of ice cream, tasting pizza sauce, and eating baby food.
Prevoiusly when we have given her baby food we would do tiny tastes on a spoon just to get her used to eating from a spoon and to having food in her mouth. Last night we decided that we would try giving her actual spoonfuls that a child her age would eat and see how she tolerated it...
She did great! There was no gagging or vomiting and she ate over 10 spoonfuls of apples and bananas.
Today I received another phone call from Marsha Dunn Klein herself to set up our consult in Tucson. We will see her on Tuesday August 14th for our initial consult and she will help us figure out how to best introduce a blended diet and how to overcome our hurdles to get her to eat more by mouth! We would love to be able to say goodbye forever to Uncle Joey by the end of this year!!
