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.

The Norm

For most everyone, it's the norm to spoon-feed your infant; to relish that moment; to take a picture; to write about it. 

Today, I spoon-fed my son for the first time. 

I spoon-fed my son ice cream.

He closed his mouth around the spoon.

He was happy.

He did not push me away.

He did not choke.

He did not yell and scream.

He did not shed a tear.

I spoon-fed my son.

I smiled.

I praised.

I shed a tear.

I've dreamt of this moment for five-and-a-half years. 

I feel at peace. 

Flip Flops for Functionality

I cannot even begin to explain how excited I am to share that we now have an accessible house and van...oh my goodness! We're all so excited! Through an amazing network of people, it has happened!

Our current Chrysler Town & Country now has a manual ramp and wheelchair tie downs. Funding came from Illinois Elks Children's Care Corporation. The installation was completed by United Access. Illinois Elks Children's Care Corporation is a wonderful charity that assists in funding medical services, treatment, and equipment for children with medical problems. If it wasn't for the Elks, we would not have a ramp for the van. We would be lifting Jack numerous times every day, in and out of the van. We were able to keep our current van by having the tie downs and ramp installed without having the floor lowered. This is a huge blessing as wheelchair accessible vans are extremely expensive.

Our house now has a beautiful wheelchair ramp, built by volunteers of Piatt County Faith in Action. Four men drove 90 minutes to volunteer their time and knowledge to build a ramp specific to ADA standards. This group of volunteers were amazing and we are so blessed to have had them enter our lives and construct this ramp. I truly don't know what we would have done if it wasn't for Piatt County Faith in Action, specifically, Stan S., the leader on this project. In fact, the entire project began because of Jack's knowledgeable Physical Therapist. We cannot say thank you enough!

Here are the pictures! I will have better pictures when the weather isn't terribly hot and humid and Jack can play around on the ramp without risking his health!

Growing up

Our boy is growing! Not in weight. No news to report on that front. Still struggling with feeding, etc. I'll write about that another time. 

I'm talking about growing up! Jack is 5 1/2 years old. He lost his first tooth in May. He lost his second tooth tonight. Jason pulled it out. It was just hanging there. And... Jack's bottom 6-year molars came in! He's so tiny and he doesn't act or look like a Kindergartener. I guess his mouth is telling us otherwise!

Here's some silly pics from tonight. 

Jack pulled out a bag of big marshmallows from the snack cabinet. He tried to bite the bag open so I helped and this is what he did!

The Shirt Says, "I Pooped Today"

So I haven't written anything since May. I know...what's been going on? I don't even know where to start.

Jack was admitted at St. Louis Children's Hospital back in March for vomiting. Remember? Well, he's been on a medication called Cyproheptadine, or Periactin, to slow the Cyclic Vomiting episodes. It's worked wonders! Jack's been on the verge of an episode (vomiting that can't be stopped) a couple of times but he never made it to the messy stage! Wahoooo!

However, on a more serious note, he hasn't fully recovered from the episode back in March. We've battled constipation and gas most of the time. We stopped pushing the blended diet into Jack's belly with large syringes because of some serious leakage and stoma (site where feeding tube enters the stomach) infection after infection. We switched g-button brands to get a better fit and the blend went through the pump for about a week. All was well! Slower flow of food=happy belly. The leaking stopped and the infections were cleared up. Then it happened.

THIS IS WERE TO SKIP TO THE NEXT SECTION IF YOU CAN'T STOMACH WHAT I'M GOING TO SHARE.


Are you still with me? Jack wasn't pooping and was on the verge of vomiting from being backed-up. I had a feeling that he was impacted because his poop was coming out as only liquid. TMI?! Haha! Not in this blog! We gave him a liquid suppository. Tons of liquid stool and gas. Nothing to help the poop was given the next day and no poop came out. Another liquid suppository the day after that. A small amount of liquid stool came out. At this point I called the GI doctor at St. Louis Children's Hospital to let her know that Jack was impacted and I wasn't getting a good result from the suppositories. We got an abdominal X-Ray. Jack's intestines were filled with stool. We continued with a liquid suppository every night and even gave one enema. Still all liquid stool and gas. At one point there was a blow-out! Love you honey! (I wasn't home. I left 10 minutes before Jack exploded and Jason had the joy of cleaning it up). I checked in with GI every Monday and Thursday. At one point we were giving Miralax twice a day and a liquid suppository each night. The goal was to clean Jack out! Results were good but Jack wasn't accepting his blended diet anymore. We had to switch to formula and he could only handle 2/3 of his usual calories. So now we have tons of liquid poops and minimal food.

THIS IS WHERE YOU CAN JOIN BACK IN IF YOU COULDN'T STOMACH THE PREVIOUS SECTION.

Today, I had the pleasure of taking Jack (and the girls) to St. Louis Children's Hospital for an Eye Center follow-up. GI wanted another abdominal X-Ray to compare to the original. Since I was already heading to the hospital, we had the the imaging done as well as a visit with GI. It was a long day but a lot was addressed.

Jack's intestines were empty. They were filled with gas but no stool. His rectum was stretched larger than it should be, which tells that the impaction was down low. So why isn't he accepting his usual rate of feed? Why is he so uncomfortable? Why isn't gas coming out of his bottom and only from his g-tube and mouth? Why is all stool liquid with massive amounts of gas?

I THINK I FIBBED. I'M STILL TALKING ABOUT POOP!

 
Jack was 29.14 lbs on June 11. He was 29.8 lbs on June 26 when we went to the pediatrician for the first X-Ray when we were sure Jack was impacted. Today he was only 27.7 lbs. It was a different scale at a different hospital this last time but Jack is weighed in St. Louis at almost every clinic and the log said that Jack lost a little more than 2 lbs. This isn't good. We've been put on a 24 hour continuous feed with breaks (give water, take a bath, etc...) only when necessary. I have to call GI the next two mornings to update on Jack's status. If this extremely slow rate works, Jack will pass gas through his bottom and poop hopefully more than just liquid and bubbles. We'll slowly increase the rate of the feeding pump to allow for scheduled breaks, etc. If this doesn't work, or he can't handle the slow rate, we'll have to do an admit. Jack would be hooked to TPN to give him the nutrition he's missing, while the doctors try to figure out why his gut isn't working.

I'll leave it at that for now. I've already had to stop the pump once for 30 minutes because Jack started to get uncomfortable. He only had 100ml of formula and it was over 2hr 10min. 30ml is 1oz.

Energy

So...everyone knows that I have been making Jack's food for his feeding tube (blended diet of chicken breast, peas or carrots, applesauce, formula, vegetable oil for fat, sugar for calories, his medicine, and a vitamin) instead of feeding him formula all of the time. He usually eats a blended lunch and dinner and formula overnight.  Well, with summer school starting soon, we had to alter when Jack eats and switched to 3 blended meals a day and formula overnight when calories aren't met. 

OMG He has SO MUCH ENERGY!!!! I can't imagine what would happen if I used fresh ingredients...

Jack's skills are growing!

Well...
I purchased the iPad apps Jackson's OT recommended and this evening I was shown some amazing skills I wasn't quite prepared for...
Jack on the iPad

So cool!

Mother's Day

Lots of good things...

Well...do I have some news. 

First and foremost, Jack will officially be entering Kindergarten this fall. I am still nervous about the curriculum, but I'm  feeling more comfortable about everything since we had the IEP re-evaluation. 

I thought resource (special Ed class for learning) didn't start until 1st grade, but Jack will get to attend daily. This means that he will spend half of his time with his peers in Kindergarten and half of his time in resource working on therapies and curriculum. The work and test taking skills will be adapted to Jack's needs. Verbal answers instead of writing. Board books instead of paper books (I'm worried he'll tear the pages). Touch answers instead of writing (he's still learning to hold a pencil and draw). 

I've requested some sort of homework each night so we can work as much as possible on his emerging skills. He is already using a weighted pencil and stencil paper to work on line drawing. Apparently, he attempted to draw a circle when prompted. The straight line was slightly curved. The boy understands AB patterns! He has a special chair at school and can stand up from the chair and get into his walker all by himself! He can even maneuver the walker, finally. Did you know that he can spell his name with letter manipulatives? Wow! 

According to all of the teachers: Jack knows a lot more than he's leading us to believe. His medical background is deceiving. The boy is bright and we just need to figure out how to get those smarts out!

He will attend summer school for 4 weeks over the summer. He'll receive therapy and more classroom instruction. 

And here's the other news!

Our 5 year 4 month old boy lost his first tooth!

Look at me!

Bright boy...

Our little man is a bright little thing! He has been surprising us lately. 

Jack came home from school with a picture. Jack was sitting in his wheelchair at a table and there were three boys around him. The were showing off their flowers they planted. I asked Jack if he knew any names. He pointed to two of the boys and said Toby for one and Tyler for the other. I asked his aide the next day if he was correct.  He was!!! 

This morning I had on a shirt with the word USA. Jack was playing with the letters. I asked him what the letters were before saying them myself. He pointed to each letter and said: S sun, A apple, U umbrella.

I'm so proud of our little man. 

Jazzin' it Up with Jack and Friends

Ok...so I forgot to share that Jack came home on Saturday, March 29. He's doing well and finally back to himself.
I'm writing to share the newspaper article written about Jason's music department at Lincoln Land Community College.

Lincoln Land Community College hosted Jazzin' it Up with Jack and Friends: and interactive concert for special needs children and their families.

The concert was a success and fun was had by all! Jack wheeled himself all over the place for the instrument petting zoo and the children (and some adults) had fun playing and dancing during the concert!

http://m.sj-r.com/article/20140405/NEWS/140409580?template=mobileArticle&sect=Lifestyle&map=2002

And though he be but little he is FIERCE

I have to think back to where I left you... It was Tuesday... Yes?

Jack never tried any Pedialyte that night. He spent half of the night (starting at 10:30pm) in discomfort and eventually we had to intervene with Zofran and Tylenol. He quickly calmed and eventually slept...at 4am.

Wednesday morning Jack awoke at 7am to vitals and then labs and then doctors... Boy was he mad! I would be too! Wednesday was a good day in terms of how Jack is feeling. Isolation was lifted. We ventured out into the hallway a couple of times. The first trip took us to the playroom. Lots of stuff to do there. We only stayed for a couple of minutes, long enough to get a puzzle. Jack wheeled himself back to his "hospital bedroom." The second trip took us to a small library. We found four books to bring back and read.

Pedialtye was started back up that afternoon. This time we started extremely slow. So slow, he only received 1 tsp per hour for two hours and then took a two hour break, repeat. 

We upped to 2 tsp per hour Wednesday night but had to stop due to discomfort. Then... The feed stopped completely at midnight. No, not for belly trouble. Jack was NPO (no food by mouth) for an upper GI in the morning. 

Why the upper GI series? Jack's GI doctor finally came by. She's been out of town. Boy am I glad that she's back. She is on the same page as me. Dr. Utterson ordered a new medication for Jack's face. His cheek is all burned from stomach acid from the vomiting episode and hasn't been healing with the current medications. She is also concerned that Jack's belly isn't recovering as quickly as it usually does. She mentioned something called an intestinal pseudo-obstruction. She discussed the possible need for a G-J tube (gastrostomy-jujunostomy) where the feeding tube bypasses the stomach and feeds the intestine directly. We are especially hopeful that we can start nutrition soon because Jack hasn't eaten since Friday. If we run into too many problems we might need TPN (total parenteral nutrition fed through IV) while we figure this out. 

So it's Thursday. Day 6. Jack had the upper GI series this morning. I am awaiting word on the results. We've started the pedialye at 2 tsp (10ml) per hour for two hours then a two hour break. We'll go to 15ml the next time if he does well. 

Jack is sucking all flavor from some bacon. It's absolutely disgusting and he is happy. He has a ton of gas. 

Next time you hear from me I plan to share good news. 

Chop chop chop chop chop chop...

Well... Jack is in the hospital... Again.

Same story. Vomit. More vomit. And more that doesn't stop. It started Friday night. Ok. Actually, Jack vomited once a day since the Sunday before and a few times the week before that. He tested positive two weeks ago for Strep, only because Evelyn came up positive and the pediatrician wanted all siblings tested. We didn't even know he was sick. No signs. Ok. Well, vomit and a nap before the positive strep test. Yep. Jack napped! The day the episode started Jack napped again. Yah. A nap! 

Back to where I was...

This time, I was able to get it a little more under control before taking Jack to the hospital with some dissolvable Zofran (anti-nausea) tablets. The cycle of vomit was every 30 minutes. When I administered the second dose 6 hours later, the cycle quickened to every couple of minutes. It was time. We headed to the Emergency Room on Saturday morning. I brought the lab orders from GI with and they were drawn before IV fluids were started.

The fluids were then started, Jack's belly was hooked to a bag to collect the stomach fluid, a call was made to GI in St. Louis, plans to admit in Springfield were made and then next thing I know, plans change. "This time," the hospital decided to transfer Jackson to St Louis Children's Hospital...by helicopter!

I don't think that was necessary but then again, I'm at the point where I don't think of Jackson's medical history as serious, when apparently it is, according to the many doctors I've seen since Saturday. The plus to being at SLCH: Jack's GI doctor is here. I do to want to knock the care we receive at smaller hospitals, but the care at SLCH is great and I feel very comfortable here.

I arrived at SLCH about an hour after Jack. By this time a second IV was placed, labs were drawn, as well as the same orders from that morning (probably a good idea), and he was resting as much as his body would let him. I could tell that he knew I was there. He opened his eyes slightly and his heart rate slowed a bit.

We spent the first 24 hours in the PICU (pediatric intensive care unit). Jack had a nurse watching him and only one other patient. The nurse's station was right outside of his door and there was a window for her/him to watch constantly. Jack spent most of the time in the PICU in pain. He fussed, cried, and retched quite often. The medicine, Zofran, that we've used many times before, wasn't helping the nausea. Jack also had a fever and tested positive for Rhinovirus, a viral infection. Of course, there isn't any medicine for that. his chest xray came back clear as well as the abdominal xray. I'm going to play doctor here: I really do believe that Jack is suffering from another Cyclic Vomiting Syndrome episode as well as Abdominal Migraines. The abdominal migraines would explain the continuous discomfort that Jack has been experiencing (You'll have to look those terms up since I'm writing this from my phone an can't place hyperlinks right now). His nausea and pain seems to be slowing from 30 minute cycles, to an hour, an hour and a half, two hours, three hours...

Jack moved to a regular floor Sunday afternoon. His room is private. Everything has been going well but we've had some setbacks. The IV in his foot, used for the Zofran for the vomiting, kinked and had to be removed. Within 5 minutes, the same thing happened to the IV in his hand ( fluids). IV therapy came and placed a new line in Jack's other foot. Yippe! Jack seems happy to be able to use both of his hands. They have spent most of the time in his pants. "Typical Jack! Typical boy!"

Monday was going smoothly. Jack sat up. He asked to play. He asked to eat chips. We cuddled on the couch for a few minutes. He talked a bit...

Monday afternoon, the decision was made to try a small amount of Pedilyte. The Dr. Wanted to do a faster rate and a larger volume than we've done in the past. I let him know. He backed his theory up. I understood and agreed and figured if it doesn't work, maybe next time they'll listen to me. Well... It didn't work. Jack started having discomfort during the 30 minute feed and vomited as soon as it was over. And then again an hour later. We gave Zofran again. And then again an hour later. By that time, Jack was showing more exhaustion and as very weak. We hooked his belly up to gravity and started draining the fluid again. Lots of fluid. Bile. Nasty.  Jack slept hard Monday night.

So now it's Tuesday. The morning went well. Jack hung out on the couch and tasted Froot Loops. He spent a long time playing with toys brought by Child Life. 

He tasted more chips and pretzels. We discussed trying to feed a small blend of Pedialyte and baby applesauce. We checked Jack's stomach fluids and gave him one of his medicines. He's been in bed for about an hour and a half. He's acting like he doesn't feel good. He looks like he doesn't feel good. Guess it's good we didn't try any food yet. We're about to give a dose of Zofran to see if it helps before he try some blended food. 

I'm hoping when I write again, we're home!