He W A N T S to eat

Oh my goodness!

Last week I took Jack to St. Louis Children's Hospital for a Feeding Team Evaluation. We met with a Speech-Language Therapist, Occupational Therapist, and Behavior Therapist. The Dietitian had to cancel all appointments on that day and we are still awaiting that appointment. Any who, Jack allowed the Speech-Language Therapist, or SLP, to touch his mouth, stick things in his mouth, and he even ate for her. It was decided that Jack was most definitely ready to work hard on feeding therapy. Jeannie, the Feeding Therapist, wants Jack to see her for weekly visits. Today was our first official visit.

Jack was SUPER EXCITED for feeding therapy. He was so excited, he wheeled himself to Therapy Services and sat in the hallway leading to the room where his therapy would take place. I attempted to move him many times, or at least get him to the side. Nope! He put those breaks on and wouldn't let his chair move! He was ready!

This is our picture story.

Jack allowed Jeannie to massage all of his facial muscles, including his cheeks, lips, and everything inside of his mouth. She's awakening his muscles and making him aware of all the different parts of his mouth.

Jeannie is massaging the inside of Jack's cheek. This is HUGE!

Jack is working on biting a Slim Jim. Jeannie places the stick on his molars and he bites down.

Jack has a small piece of Slim Jim in his mouth and he's moving it on and off of his molars by himself. He's biting it in this picture.

Jack is tasting a blend of vegetables and cooked pasta for the first time that I brought from home. To our surprise, he liked it!

I can't believe he didn't push it away!

With each taste, he got more and more interested. Jeannie rotated between pudding and vegetable noodles. Jack had to take 21 bites of the veggie noodles before he could have the pudding. He only had to take 3 bites, but Jack decided that 21 was a better number.

Jeannie mashed up some Veggie Straws snacks and mixed them with the pudding. Jack took the mix from the spoon but removed each small chunk and placed it on the table. He kept saying, "no, thank you."

After 1 1/2 hours of intense feeding therapy and alternating between chocolate pudding and veggie noodles. Jack ate enough calories to replace one meal! I doubt it's nutritionally solid, but OH MY GOODNESS!!!!!

Kindergarten Rocks!

Way back in August, Jack started Kindergarten! I can't believe I haven't shared any pictures. Life has been crazy around Chateau Waddell. Jack's gut is still causing problems. I'll get to that later! First, we need some pictures, all thanks to an amazing woman named Lisa.

Lisa is a nurse, a mother to Evelyn's classmate, and Jack's aide. She's taken to Jack and his ways (speech, total care needs, feeding tube, and fits). Without ranting, I will simply share some amazing pictures.

Lisa and Jack in Melton's class, as Jack calls it. This is his Special Ed. Class. 

All pictures with a bunch of kids are in J's class. The kindergarten class.

I had to sneak this in. The kids saw Sesame Street Live. 

Working hard during Physical Therapy. 

Grandma Lucile helping Jack eat a Popsicle. 

Jack was the line leader. I can imagine the fun had with the megaphone!

This is Jack's corner. He can sit on the floor, scoot around, yell, play instruments, and just be loud!

I snuck this one in too. We took the kids to a pumpkin patch.

Jack visited a mobile petting zoo and touches a bunny.

Evelyn's friends like to play with Jack during recess.

Jack is no longer changed on the floor in a closet. He has a special changing table with pads that is low enough to have him work on transferring. He has privacy and comfort.

Now, to discuss Jack's continuous GI issues. So, back in August Jack had the IgE Allergy blood test. The results showed allergies to dairy, egg, almond, wheat, cat, and dog. We stopped giving Jack regular chocolate pudding that is made with cow's milk and he hasn't had anything with egg in it since then as well. The skin prick test was done in September.

This is nasty looking and you can see the areas where the results were bad.

According to this test, Jack is allergic to dairy, eggs, corn, chicken, beef, pork, turkey, most tree nuts, grapes, and strawberries. Yah...so he should drink water and eat the formula that he loses weight with. No thanks. I'm continuing my log of Jack's daily diet, reactions to the diet, specifics about the food he is fed, and his poop. While awaiting many appointments and discussions with allergy, GI and a dietitian, I'm experimenting with Jack's diet. His belly does not like most meats and most grains, as well as dairy and egg. This is difficult but I will find a way to help Jack thrive without relying on that formula.