Dear Little Buddy,
You have been so strong over these past couple of weeks and I am so proud of you. All of your caring nurses have fallen in love with your sweet eyes, joyful smile and infectious giggle. Even though it has been hard on both of us to be away from Daddy, Gianna and Leo, as well as the comforts of home, I have loved being able to devote one-on-one time to you and your needs. I can't describe with words how it warms my heart that you have been constantly wanting to hold my hand or have me lay with you. We will have some time adjusting to having to share our attention again when we leave the hospital (but I know we are both so ready to go home!)
In about 30 minutes time you will be going to the OR to have a procedure done that has been talked about for a couple of years now. You are going to have a feeding tube (called a PEG tube) placed in your stomach. You have always been under weight and your weight gain has been slow and difficult. You have always made such great and consistent progress and I am so proud of that (proud of you and me and Daddy as well!)
The past couple of months you have been having a hard time eating enough and you often refuse much of anything at all. Since your seizures 2 weeks ago and the time we've spent in the hospital you have lost another 2 pounds, pounds you can't afford to lose. Also, at the beginning of the week you failed a swallow study that showed you are aspirating liquids, so you can only safety swallow puréed foods or thicker. You will likely be able to swallow liquids again, it will just take some time. You will still be able to eat by mouth, we will just be able to put any extra calories you need through the tube. I also have big plans for juicing and giving you all kinds of other healthy things you would have never let me give you before! And the part you'll probably like the best: You won't have to taste all those yucky medicines we have to give you anymore...they can all just go right in your tummy through the tube!
This new journey we are embarking on will be such a positive for you. We will no longer need to worry that you are getting the nutrition you need or gaining the
weight you should. We will be able to confidently stick to a dairy-free diet that has evidence to improve your syndrome. You will be stronger and healthier!! Mealtime wont be stressful, you can enjoy what you eat, and form a good and healthy relationship with food.
It will be a bit of a lifestyle change for us all but like everything else, we will adapt and eventually thrive! We will do whatever it takes to do the right thing for and by you and together we can overcome anything.
I love you my sweet child. I'm so glad you're mine and I'm so proud to be your mom!
