What an amazing and rewarding three months it’s been. We wondered if medications would be an issue because she takes several medications and they don’t taste great. Right on that very first day, we realized that meds were not going to be an issue. Very quickly and very easily Ali learned to take her medication orally from small syringes. It was messy for a few days but within the first week she had mastered it. We carefully tracked calories and fluids for the first two months to get a feel for what she was eating and to make sure she was eating enough and getting enough to drink. Over those two months Ali slowly increased her fluid intake and she slowly learned to tolerate new textures and tastes.

I took another huge step and I stopped counting calories and fluid volumes. It was tough to just let it go after 4 years of calorie counting and worrying about Ali’s fluid intake. I’ve written here before what a huge part of our lives it was to count everything that Ali ate either via tube or orally.  It was an absolute necessity and it was how we kept her alive. I hated counting and it was stressful to try to meet her goal every day and the day I stopped was like a huge cloud lifted off my shoulders.

In the past months Ali has made more progress then we every could have imagined. In 7 months Ali went from being %100 tube dependent to not using her tube any more. We had recently been told that we had a very long road ahead of us in regards to oral feeding. I was devastated that day and that was less than a year ago. She still doesn’t chew or bite but she manages great with all purees and small pieces. She eats meat (cut small enough that she doesn’t need to chew), pasta (cut small), cottage cheese, fork mashed veggies, small pieces of fruit, cheese and small pieces of bread. She devours yogurt, apple sauce and other purees. Her favourite two meals are tomato soup with crushed gold fish and small pieces of cheese and fork masked Mac and Cheese. She also drinks from a straw and from a cup and can now drink an entire juice box in one sitting.

So, where do we go from here? We keep working on chewing and biting but in the meantime we can go ahead and look into removing Ali’s G-tube.  We are planning to talk to her doctor about it next week. The feeding team wanted her to go three months without needing it and she did. I honestly never thought we would see this day. Throughout the past four years, the eating has always been the big battle in my eyes. Aside from the cancer risks, the G-tube has always been the hardest part of having a child with Costello Syndrome to me. I know that having a G-tube was a necessity. Never once have I regretted putting it in. It kept her alive and because it was “permanent” it was a lot easier than living with some of the less permanent options. Ali would certainly not be where she is today without having had her G-tube. But to think that soon, she won’t have it anymore is almost unbelievable to me. It proves that the best things in life are worth really fighting for. I am so proud of my steak eating, cake loving, juice box devouring little girl. She did something that I honestly thought she might never do and she did it faster than I ever thought was possible. So, hopefully we have a big day coming up soon and that would be the day we go tube free! I’ll keep you posted!