I am happy to share some positive things that have been happening with Faith since my last post! Faith is still struggling with the chorea and her tone but we recently started her on a new medication called Onfi that is calming and slowing her down a bit and seems to be helping her be more comfortable. So far it is promising!
Faith is continuing to enjoy horse therapy! We are wrapping up the last few weeks of the session and then she will have a break over the winter months. Faith has definitely made progress since we first started last March. She is so happy on her pony, Merrywood and the movement is so calming to her.
Faith is doing really well with lifting up her head for longer periods of time. So exciting to watch her do this!
Faith’s trunk is getting stronger and she is doing better in a sitting position. She still needs a lot of support but every little bit of progress is exciting! Here is a pic of Faith working on sitting at school:
Faith has been vocalizing much more lately. It is so great to hear her communicating! We have gone through periods of time where Faith has done this but it has been awhile since she has been doing it this much. Lately, it has been quite impressive and frequent. Hoping to hear lots more! Hear Faith for yourself below! Click the link then click it again.
We are so thankful that we recently got funding approved to get a wheelchair ramp at our house for Faith. It was just put up this week and has already been very helpful. It is a huge help getting Faith on and off the bus and will make transporting Faith much safer for all of us.
We have recently made some changes in Faith’s daily diet. Faith has been getting 100% of her nutrition through her g-tube for the most part since she was about 3 months old. It has always been a challenge for Faith to tolerate her feedings and maintain weight so our options have been pretty limited. I did my research on blended food diets and talked with others who have children on blended food diets. I finally felt that we were at the point that trying something new was worth a try as long as we took things very slow and payed close attention to the nutrition composition of the food and total calories that Faith needs. I love the idea of giving Faith higher quality food and cutting down on the amount of processed food she is getting with the formula. Already we have seem improvements with reflux and constipation which were both additional reasons we wanted to try blended food with Faith. We have a long road ahead to get Faith completely on a blended diet but I am so glad we are experimenting with this and making progress. Right now, Faith gets three bolus feeds during the day of blended food which consist of grains, fruits, veggies, protein sources such as beans or meat, and then a type of fat or oil such as avocado, coconut or oil olive. So far, so good! Faith is tolerating the blended food great! No reflux and her bowels are moving very well as an added bonus! She refluxes mostly just with formula and sometimes water flushes. The thickness of the blended food seems to be helpful. I am very excited about improving the quality of the food Faith is getting and so thankful that she is tolerating it so well! We are continuing to keep a close watch on her weight and have to carefully plan, measure, and calculate her blended “meals.” Faith is still on a continuous overnight feeding that consists of formula. We are slowly decreasing the amount of formula she gets overnight as we increase the amount of blended food she is getting during the day. We are hopeful that at some point she can be on a complete blended diet. Baby steps for now!
Faith had a swallow study a few weeks back that was pretty consistent with her last swallow study that was done about 2 years ago. The results indicated that Faith still struggles greatly with swallowing and the possibility of Faith ever being able to eat by mouth for nutrition isn’t very promising at all. The muscles involved in swallowing are very weak. No matter how many times I hear this, it is still hard to hear. I remind myself that Faith can still be happy and healthy without eating on her own and I try to keep focused on just that. I feel that even if Faith is not able to eat on her own right now, I can give her the best nutrition possible with a blended diet. It makes me feel a little better too that I am doing something to help her! The odds aren’t in Faith’s favor to do many things but I am trusting in God’s plan for Faith’s life whatever that may be and keeping the faith along this journey. I am trying to focus on all the great things Faith is doing and am so thankful for her progress. Whether or not Faith ever walks, talks, or eats on her own, she will always be my incredible daughter that has blessed my life more than I ever could have imagined!
Wishing everyone a very happy and healthy holiday season!
Keeping the faith,