Touching video

I accept that Jack is Jack and that is that. Sometimes I forget how quickly things can change with him. Sometimes I forget to celebrate the good days. Sometimes I need this reminder of what Jack has but not who he is. 

Beautiful children. 

https://vimeo.com/6433816

Is it really already June?!

Ok. So I know I am soooooooooo behind on my blogging. Life has truly gotten in the way. 

I've missed a ton of important events and I guess I can't backtrack to every single happening. I can share pictures with little stories. I'll do that. At least this will get posted today instead of in about three weeks! The pictures will NOT be in chronological order. 

June 2015. Jack and mom in the pool.

May, 2015. Jack and his wonderful aide, Lisa, at the Kindergarten Tea.

May, 2015. Mrs. J (Jack's Kindergarten teacher) and Lisa (Jack's wonderful aide) pose with Jack. Jack won the Character award for courage.

May, 2015. First Christian Church of Springfield, IL hosted LLCC Big Band for an end of the year concert and CFC International Fundraiser.

May, 2015. Jack and mom at the concert.

April 17-May 2, 2015. Jack getting some fresh air in the rooftop garden at St Louis Children's Hospital. Jack was admitted for failure to gain weight. We worked on finding a different formula and different way to feed Jack. He did get quite sick in the beginning of the trials but in the end he is doing ok.  We switched from a G-button to a GJ-button. We now feed formula directly into Jack's intestines. He eats 20 hours a day and gets small breaks from the tubes throughout the day. We are still working on calories and formula. Jack still isn't gaining weight. Go figure. No surprise to me. He's happy. That's most important!

April, 2015. Grandpa Steve and Grandma Barb visited Jack at the hospital.

April, 2015.  Evelyn and Katie visited Jack at the hospital.

March, 2015. Jack's spring Kindergarten picture. 

 

March, 2015. Jack and Mrs Melton (special Ed teacher) working hard. 

March, 2015. Jack has  groupies everywhere her goes!

March, 2015. Working hard in Mrs. Melton's class. 

March, 2015. Helping dad baby proof by hanging the tv on the wall. 

March, 2015. Acting like he's eating an apple. Those really are his bites! He spit out each piece. Silly boy!

February, 2015. Jack participated in the Pawnee Youth Basketball League. He had fun throwing in the ball and even got to make a couple of aided shots. 

January, 2015. Silly boy!

January, 2015. Celebrating Jack's 6th birthday at school with his Kindergarten classmates. Pudding!

January, 2015. Working for Ms. Carolyn during Physical Therapy. 

January, 2015. Fun times at the mall!

January, 2015. Lost both front teeth!

December, 2015. Pawnee Grade School's Christmas Program.

January, 2015. 

Trying to play his cake!

Sorry for the rant...and any possible errors...

It never fails. Two steps forward, one step back. The poor kid just needs a break. He has so much potential and way too many doctors and diagnosis. 

We have another new term to memorize. I seriously don't know how I do it anymore. It's like I've started to ignore the multiple issues and only focus on the now. Reality doesn't sink in often but when it does it's another slap in the face. How can one kid have so many health problems? Why can't we just enjoy life without all of the medical stuff?

Rant over. 

So the two steps forward?

Step 1: Jack is doing AMAZING in feeding therapy. He's eating all sorts of foods, all thin to thick liquid consistency. Today in therapy he ate pudding, stage 2 baby carrots, and stage 2 baby green beans! He also sipped "pudding shake" and "green bean juice" (just his foods thinned out with water) from a cup! Last night Jack ate his pudding while I fed him some baby carrots! It's such a wonderful feeling to feed my Jack!

Last week, eating "Smarties" after inhaling his foods!

Today, drinking "green bean juice." Look at that mess!

Step 2: Jack had his annual orthopedic appointment today. He was so excited to get his hip and spine X-rays, he hung out behind reception awaiting his turn! 

Jack is graduating from AFOs to SMOs!!! The new braces only wrap around the back of the foot/ankle for minimal support instead of the entire foot, ankle, and calf. 

The step back: Jack has a condition of the spine called Kyphosis. He lumbar spine, or lower back, should curve inward but Jack's curves out. He had it last year but I think they thought it was the position of the spine during the xray. We always watched for scholiosis, which is very minor with Jack. So, what does that mean? He's too young for surgery. Thank goodness. A back brace should be worn to help with positioning but I don't want to do that yet and the doctor said it can wait. The kicker? Jack has to go back in 6 months instead of a year. Clinic appointments are supposed stretch out in time...

For the purpose of entertainment and I just need to vent and I don't want any sympathy...and for those that are new to the blog and everything Jack...

*Neurosurgery- arachnoid cyst and thinned Corpus Callusum observed through annual MRIs

*Neurology- possible mitochondrial disease, hypotonic CP, CoQ10 deficiency, seizures observed through clinic, EKGs, EMGs, and Muscle Biopsies

*Orthopedics- Kyphosis of the lumbar spine observed through clinic and X-ray

*Eyes- three eye muscles surgeries, one tear duct surgery because they were too narrow, eye ointment due to lack of eye lubricant, and clinic every 6 months

*Nose- tonsillectomy and adnoidectomy as well as out fracture of turbinates (broke his nose to open it up more because the nasal canal was extremely narrow).

*Mouth- uncoordinated swallow. Very high arched pallet. 

*Genetics- Cardiofaciocutaneous Syndrome, BRAF mutation, Q257R

*Endocrinology- IGF-1 Deficiency, Osteopenia, history of Vitamin D2 deficiency, observed by lab work and annual clinics

*Cardiology- closed PFO (hole in heart), aortic stenosis, murmur, at risk for thickening of the heart muscle because of CFC. Observed through annual echocardiogram sand clinics

*Nephrology- hypercalcemia, at risk for kidney stones. Observed through annual renal ultrasounds and clinics

*Urology- UPJ obstruction (right ureter was shaped like a corkscrew), pyeloplasty (right kidney was cleaned out and part of the kidney was removed with laser because it was dilated too much), thickened bladder walls. Observed through annual renal ultrasounds and clinics. 

*Gastroenterology- Eosinophilic Esophagitis, delayed gastric emptying, feeding tube, short and inverted duodenum, intestinal dysmotility, lots of poopy problems, cyclic vomiting syndrome, past ileus, past pseudo obstruction. Observed through lab work, X-rays, upper endoscopy, upper GI, lower GI.  Many clinic appointments. 

*Allergist- apparently, Jack is allergic to most foods. Dairy, egg, corn, most tree nuts, chicken, turkey, beef, brown rice, quinoa, bananas, grapes, strawberries...

*Registered Dietician- discuss all food related issues. What works. What doesn't. What he can and cannot eat. The RD works closely with GI. 

* Therapy- Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy. 

That.Is.All

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.