My daily diary to Sam…
Today was your second day of feeding school. You are doing so well! But are one super tired boy. They work you hard, and you continue to impress them with your stubbornness (that’s not a compliment I’m afraid). As always, you have a mind of your own, and while we are thankful you are so stubborn, I don’t think you realize you’ve met your match in your therapy team 🙂
Today was a really important day for your friend P. It was his 7th day of school, and he did great! P is 6 years old, and has had a g-tube since he was 5 months old. Today… he took over 100 ounces not at just one meal, but at TWO!!! It’s the first time he has ever done that. Ever. Can you believe it?! P’s mom was bursting with pride as she told me. Mommy got a little overcome with emotion afterwards, and thought to herself, “We will get there.”
It made Mommy and Daddy so excited that we have you enrolled in this place. We love having other parents to talk to that actually GET what we’re going through. Most of the other kids are toddlers, and I can’t imagine doing this with you for years. We’re pretty lucky we get to do this program now.
Good luck tomorrow Sam! Sweet dreams!
Today was your 3rd day of feeding school! Today they worked with you on your bottle more, and also started paci training!! Guess what? You did great! You sucked a few times, and even held it in your mouth some without Kate’s help. After training, you are very, very tired and sleep super well during your nap.
Today, while watching you on the 2-way mirror, Kate was trying to feed you some food and you spit up. Even though you throw up A LOT, it was hard for Mommy to see you spit up and have Kate continue trying to feed you. I got a little teary-eyed, and realized, “Wow, this is going to be tough.” It was hard seeing you go from being in pain to trying to eat right away. Kate talked to me after because she figured I would react this way. She’s a great therapist, and explained the reasons behind it. It has been so, so interesting watching this whole process, and seeing how much data they take on one little baby- YOU!
Tomorrow is my first day back to work. Believe me Buddy, this is very hard on me. I would be with you 24 hours a day if I could. But you are going to do great, and Nanny Sarah and Jack are going to be visiting you often. Because you’re the coolest kid at the feeding clinic, naturally you will be spoiled by all the therapists and workers there.
Love you Sammy! Sweet dreams.
Today was my first day not being with you at the feeding program. It was really hard for your mom to leave you with people who still don’t really “know” you. They are so great with you, and play and sing songs to you. But they’re not me. And while I love that you’re a super happy, smiley baby, I’m still selfish and want to be your favorite 🙂
I got an email from Kate this afternoon to update me. I think she knew it was going to be hard for me to be back at work. She said you were having a great day! They are getting some good data on your pacifier sucking, so we’re all super happy with this. You continue to throw up most feeds, but… we’re working on it. Hopefully we’ll have an answer soon. I don’t blame you for not wanting to eat Buddy—if I threw up 5+ times a day, I wouldn’t want to eat either!
Your “Today I” sheet said you were a really good boy, but cranky during your nap. They don’t let you sleep on your tummy like Mommy and Daddy do (these things called “rules”). You told them what you thought about that!
Tomorrow marks Day 5 and the end of your first week of school. Perhaps we’ll have to take you out to celebrate! 🙂
Sweet dreams Buddy.
5th day of school
Can you believe it?! You’re already done with your first week. The time flew by, but the exhaustion on your face is clearly evident. Your therapists are very proud of you. Today you started to swallow some bites of food without gagging/spitting it out! In fact, you even started opening your mouth on your own, without Sarah “gently forcing” the spoon in 🙂
We haven’t started working on taking a bottle yet. Kate and Becca continue to work with you on your pacifier sucking, and today you did 3 sucks in a row several times! They told me you are starting to latch onto the paci a little better, so maybe next week they’ll start working with you on taking a bottle.
We are so proud of you Sam. You’re doing so well, and in only 5 days have gone from being entirely tube-fed to the beginning stages of accepting food. I shake my head in amazement that we are finally at this point, so thankful to so many people for getting you into this program.
Love you buddy! Rest well this weekend–you deserve it 🙂
3 Comments Add yours
Trisha, all I can say is WOW! Sorry that Sam has to be there but oh so thankful that they are there to help him. You and Adam are such amazing advocates for you precious son! I’m so glad that you were able to get him the best there is to help him be healthy! Your family’s story will continue to amaze and inspire many! Love you all! Sue
I wait to read the blog and I am so thankful that you and Adam are Sam’s parents. He is blessed to have both of you and everyone else around who love you all so much.
You are all amazing!
Love, Grandma Stibbe
Can’t wait to see you hard at work on Friday!! You are doing awesome buddy 😀