Friday, May 29, 2015

All Things Feeding Therapy!

Apparently I am not giving enough updates......sorry peeps.

If you're remotely interested in what an intensive feeding therapy program is like, please read on. If you  have a weak stomach and/or only want to see cute pictures of Owen and Cooper, please skip down to the bottom.

So Medical Mumbo Jumbo - Owen is doing well. After a really rough weekend last weekend and a rough start to the week, he seems to have turned the corner on some of the eating stuff. He even took a bite during his last two feeds without inspecting the food like a private investigator beforehand.

His body reacted to dairy and sweet potato in a majorly negative way, so those two are still out, but we've added many new foods and some of them are really starchy, so we're hoping to see some weight gain soon! None yet, but soon. Real soon. (Right?!) Please tell me I'm right!

The biggest and most exciting change is that he no longer needs bolus (tube) feeds during the day because he now drinks his formula from a cup. WOOT WOOT! That is HUGE, people. HUGE. We will still be on the night feed for awhile, but baby steps, right? Please tell me I'm right! ;) We are also weaning him off one of his major medications and we're going to watch for signs of regression in his final week here. We're praying his body responds well because nobody wants him on this heavy drug for nerve damage if he can manage without it.

Monday starts our fifth and final week! 
I felt like it would never ever get here.
 Never ever ever ever ever.

We're both more than ready to go home but I'm trying to change my attitude from homesickness to enjoying the last few days of this time with just the two of us. I'm also trying not to be scared of our schedule once we get home!

So for anybody who is like "ummmmmmm, like, what the heck is intensive feeding therapy and ummmmmm, like, what the heck do they do up there all day?" Here is a look at our rules and daily routine:

1. He gets strapped into a car seat and eats every two hours throughout the day starting at 9:00 or 9:30 and ending at 5:00 or 5:30.

2. He is not allowed any food or drinks (other than water) in between his structured meals.

3. At the end of the day, after his final feed, if he would like more food, he can have some. 
(He usually wants his hypoallergenic cookies.)
Rule numero 3 is one of the toughest. Easy to do here in this setting. But at home? That means if the older two have a snack or have something on their lunch or dinner plate that Owen wants as well, he cannot have it until the end of the day....This was difficult last weekend when they were here so I'm not really excited about that part. Well, lesbehonest, I'm not really excited about any part.......

4. Each meal lasts thirty minutes and thirty minutes only. If he doesn't finish, he doesn't finish and he doesn't get anything else until the next meal.

5. Owen has five seconds to take a bite on his own. If he doesn't, I say "take a bite" and put it to his lips. If he still refuses, I ignore him for ten seconds and then try again. 

6. He has ten minutes to eat his first thirteen bites. If he eats them in ten minutes, he is allowed to watch a video or play for one minute. He then gets ten more minutes to eat the next thirteen bites of food and allowed one more minute to play or watch something.
After those twenty minutes, he has ten minutes to eat the final three foods (no breaks in between) and then he's allowed to get down and play.

7. If Owen spits, vomits, or throws any of his bites on the floor, they get picked back up, put back on the spoon, and offered again until he accepts. Yes, that means he has eaten a lot of food off the floor and yes, he ate his vomit once. Once seemed to be enough on that one thank goodness!


(Hard at work at the hotel.) 

RULES FOR ME: I have to ignore all behaviors and pretend they don't bother me. This includes but is not limited to kicking my chair, putting his hands in front of his mouth, crying, screaming, gagging, stretching excessively, saying he has to go to the bathroom, asking how many bites over and over and over again, refusing to open his mouth, talking incessantly to avoid eating, crying, screaming, asking how many bites over and over and over again, pursing his lips, trying to get me to play with him, and saying over and over that he wants to go home.

You may be thinking what I'm often thinking.....That is HARSH! WHY would they do that to a kid who already doesn't like eating?!

They do it for one very important reason. Owen has to learn how to eat. He has to learn that food is NOT the enemy. He has 6.5 years of medical trauma and eating aversion to overcome. That's a long time of painful eating. An adult with EoE once described it as feeling like you have a golf ball stuck in your throat when you eat. I can't even imagine. Sometimes the only way to learn things is repetition: doing it over and over and over and over and over and over again until it becomes habit.

Is it all doom and gloom?

Hellz to the  NO.

We came here eating 15 foods. So far, we've added 15 more and still have some new ones we're trying next week! That is major progress, people. MAJOR! Wednesday was a big break through for us. For the first several weeks, we were trying to get Owen to keep his hands down and chin up during chewing to help decrease gagging. This was great for the gagging but became a battle of the wills with the hands. He was constantly stretching or playing with his hands, etc. which meant I was constantly trying to restrain his hands. Wednesday the doctor said, "let's not worry about the gagging for now and ignore the hand behaviors. If he gags, he gags." Major leaf turned. He still does all of the hand behaviors, BUT I don't try to stop him and he started accepting his bites much more willingly. Owen has always played with his hands. I think it's a distraction for him and this one move has decreased our battle time significantly. Less battle time is definitely a positive thing for our relationship and I think he feels like he at least has some control over his body while basically being "force fed." We're also trying more sensory diet (heavy work, jumping, brushing, etc.) before each meal to help relax him. 

So.....this is how we are spending our time now and for a long time to come. It will be worth it. It will be worth it. It will be worth it. It will be worth it when we can come off the feeding tube and have normal family dinners one day. This is my mantra. Sometimes it works, other times I cry a lot. Depends on the day.....and my monthly cycle....... ;)

Now enough medical and feeding therapy jargon.

Here are the aforementioned adorable Cooper and Owen pics taken after our evening swim.

Cooper has been a delight for us. He is coming out of his shell and showing some of his true colors which means he may need probably needs some training, but overall, for a dog who was likely once abused and then found living on the streets, I think he's doing great! He's super sweet and trying to adjust to family life (in a hotel.) Lol. 

Owen, of course, is 125% smitten to the core!

Cooper has forced me outside more for runs and walks. This plus nightly snuggles sessions has definitely lifted my spirits. I know this makes me pathetic. I really don't care. Shit gets lonely up here in Jersey.

And I haven't even seen Snookie once.
Lifelong dream. Denied.

(Mom - I know you've never heard of her. Reality "star" of the worst sort from Jersey. Google her if you need more info.)  ;)

And that's a day in the Life.

Some of you may be reading this because you're considering feeding therapy or St. Joseph's. It is a wonderful place. They're tough on the kids but these kids need tough right now so they can hopefully go on to have a healthy relationship with food. The doctors and therapists there KNOW what they're doing, even when you the parent may not agree, and they will help your child if you follow their protocol. It may and probably will be a two steps forward one step back type of thing, but progress can be made. Feel free to comment or email me if you have any more questions.

Monday, May 25, 2015

Oops, I did it Again....


I did it again......

Apparently, if you play with fire long enough, you're going to get burned.
Or if you go in puppy stores long enough, you're going to get a puppy.

The difference? This time I had permission from the hubs......

Owen and I are still in love with the little girl puppy I posted before. Problem is, little girl puppy cost $1000. I am not even lying. So I started looking at breeders of "cockapoos" or "cavapoos" as they are supposedly great therapy and family dogs. Cheapest I could find was $800. $800!!! Are you serious?! So then I started looking at shelter animals and most of the poodle mixes were way older and "not good with kids or other dogs." Hhhhhmmmmmmmm. That's not gonna fly around here. I was looking in NC and the states between here and NC to pick him or her up on the way home.

Then this picture of a cockapoo (I know, such a manly breed) popped up on my screen:

I sent it to Todd and said, "It's Chewbacca! We have to rescue Chewbacca!" 

We both thought he was hilarious so I called first thing the next morning. No go. Chewie already had people coming to see him up that day. :(

I decided to call back a few days later just to make sure.
Still a no go. That family was picking him up on Sunday. She was taking him off the internet.

Well, I called again Monday morning just to make sure.
The Shelter lady said they never showed up but she wasn't going to let us come see him because she didn't want him to move all the way to NC. It is a family run shelter and she likes to keep the dogs close in case it's not a good fit. She wants them back instead of being abandoned to another shelter. I said I understood.

We hung up.

I thought about it for five minutes.

I called her back and told her I couldn't stop thinking about this dog. And that we are a great family. And could she just let me come see them and then she could decide?

Her exact words:
"Damn. You are persistent."

Yes, yes I am.

So Owen and I drove all the way there after we left the hospital and spent two minutes with the dog and the shelter lady wouldn't let us pet him. It was bizarre. She is bizarre and abrasive but obviously cares a lot about the animals. I called my sister and said, "that's obviously a no go. She was a wee bit crazy and wouldn't let us pet the dog and I couldn't even tell what he was like?! She made Owen stand with his hands on his shoulders the whole time and then told me that all us suburban people think adopting dogs is like the movies." My sister said, "well go back. You don't have to live with her, just the dog."

The sister can be wise sometimes.

So I called Crazy Shelter Lady back the next morning. I think she agreed to let us come back because I was pretty much stalking her at this point. ;) 

The bigs and I went back Friday.
We spent an hour with the dog.
We left with him for a trial run over the weekend.

We all fell hard.

We named him Cooper.
Cooper Chewbacca Fischer

We hope to have him trained to be an emotional therapy dog for Owen.
Don't think it's going to take much training.......

Little Lamb.

Welcome to the fam, Coop.
Hope you like crazy.

Wednesday, May 13, 2015

Week Two - I'm over you.....

Not gonna lie people,
this has not been my favorite week, although it got off to a good start since my parents came to visit, which was awesome.

Here we are happily awaiting their arrival:

They got here and we went into NYC on Saturday which was also awesome and not so awesome. I had a great time with my parents but some people didn't so much love the crowds and those people did a lot of whining before they finally shut down and crashed, leaving me to actually stroll in peace.......but I won't name any names.

The unfortunate part of my parents coming was the part when they had to leave.
What the Heck?! 
WHY do people keep leaving us up here by ourselves with these crazy Northern Drivers and such?! ;)

Once we survive (and I do mean SURVIVE) the drive to the hospital, Owen has been doing really really well with therapies. Apparently, based on questions I've been getting, I need to explain a little bit more about the purpose of our trip. Feel free to skim the medical update and get to the crazy if you want to shake your head and judge me...... We are here for two main reasons: 1. We really need Owen to gain weight because of food rather than formula and 2. Owen's last set of allergy testing came back negative for everything.......which is pretty cool but also can mean absolutely nothing with his disease. Basically, in a nutshell, the tomato, wheat, egg, soy, dairy, peanut, avocado, etc that all came back positive four years ago was no longer positive which means we can start reintroducing those foods in his diet. But even though the blood work came back negative, his esophagus and intestines can still swell up and go cray cray on the inside with no outward physical signs. Was that clear as mud for ya? So even with negative results, after being told that certain foods will make you sick for four years, you can't just hand a kid a peanut butter sandwich and expect him to not have any fears about ingesting it. Hence, we have been introducing things slowly, in a controlled environment, and under the watchful eyes of expert doctors in all things feeding, swallowing, and GI. IE - that's why we're at St. Joseph's.

Things are going very very well. And by "well," I mean Owen is working his ass off trying to please his therapists, doctors, and myself. He gets strapped in a car seat five times a day and is forced to eat things he has never tried before. In between those sessions, he works hard in PT to build up his upper body and work on his posture because he still hunches over to try to protect his abdomen. So the boy? He's working hard. As for the food? We have mostly had success. He's finally up to ten bites of eggs. He's up to eight bites of oatmeal and he only gagged twice today. He's up to six bites of pasta and that one he actually likes! Yay! 

But the one we've all been crossing our fingers and hoping and praying's not gonna happen.

Dairy, the queen of all things fattening, sucker punched my kid in the gut today. He had 5 mL's at his first feed. That is only a teaspoon. One TEASPOON and he started hurting soon after. We decided to push through at his next feed because his rash was very light and he got 5 more mL's.

He cried and fussed through that meal but he did still eat.

And then he got really sick about an hour after. Puking. (And the other end sick.)
 I felt so so so bad for him. He was in so much pain and there was nothing I could do except wait it out. 2 teaspoons of dairy and his body said "Oh hellz to the no." It made me so sad. We wanted dairy. We needed dairy. Cheese and milk and ice cream and yogurt? Those things help me gain weight so I was hoping they would help him too. Why should I be the only one in the family to enjoy a squishy muffin top?! We left the hospital early and disappointed since it was clear that therapy was not going to happen with him in that much pain.

After leaving, thankfully, and through no fault of his own, he pooped his pants on the way back to the hotel. Why on earth am I thankful for that?

Because it prevented me from stopping to buy a puppy.

Yes, you read that correctly because I am certifiable.
And lonely.

And to pass the time in the evenings, we've been going to various pet stores and playing with dogs because my boy LOVES dogs. (His mom kind of likes them too.) And of course we fell in love with this one. This is a breed that is often used for therapy dogs because they are smaller and very friendly and cuddly. And yes, the doctor can write a note saying Owen needs a therapy dog and we can get tags and take her wherever we go. And yes, the doctor and another mom in the waiting room talked to us all about this. And yes, this boy who often gets anxious in crowds and anxious at night could have someone to snuggle, but here's the thing people, we ALREADY HAVE A DOG! 

We have a slightly crazy but lovable dog that I already brought home pretty much without permission.

I don't think I can do that to Todd twice! Although.....I'm not making any promises. And he promises not to judge me because this situation sucks and he understands my weaknesses. In sickness and in health, people. We vowed. The vows did not clarify between physical or psychological sickness, thank the Lord, because Todd is still with me. Well as far as I know, he is. Actually, he could be in Canada for all I know since I haven't seen him in weeks. But I think he's still at home.......shaking his head at his crazy wife.

And I am CRAZY for even thinking about this, but when he was in so much pain today, I thought, screw it, I'm getting the kid that puppy.

And then dairy and poop saved my family from my shenanigans for at least one more day. I never thought I would be so thankful to clean out crappy underwear. I'm literally praying someone else adopts her before I lose all my willpower.

I can't even stand that much cuteness.

Hoping my boy feels much better tomorrow! And I'm also hoping another family finds this dog absolutely adorable and adopts her. And I hope that family is named Todd. ;)

Just kidding babe.

"Go sell crazy somewhere else, we're all stocked up here."
-As Good as it Gets

Tuesday, May 5, 2015

Swimming and Fake Salons

Day Two was a bit harder than day one so we ended it with the only thing that makes sense when you've moved houses, finished a semester, lost your dog, and you're stuck in a hospital watching your kid work harder than he should have to work.....

We ended it with swimming and hair dye.

The pool makes my boy so so happy at the end of the day.

Sarah Ellen and I don't mind the pool too much either since we sit in lounge chairs and drink free beer while he swims.....

And just for the heck of it, I've always wanted to try being a brunette. I mean why not change my hair when everything around me is changing as well? 
So thanks to my free hair dresser and a box from Target.......

Not sure if I'll stick with it, but at least it's not green which was an actual fear I had. I was armed with a hat and the name of a salon should this end poorly. (I mean, not that I doubted my sister, who once tried to cut my ponytail off while I was brushing my teeth......but that's neither here nor there....)

So there you have it.
Day Two:
Hard Work,
Pool Time,
And a new Hair Do.

Monday, May 4, 2015

The Good, The Bad, and The Sister.

I know the title says we're starting with the good, but let's not do that. 
Let's start with crappy and end with happy.
Just because we can.

The Bad:
After 14 years with this amazing chocolate lab in our lives, we had to put her down last Wednesday. She lived a long, hopefully mostly happy life, but it was time. And it was hard. Our animals are so much more than just pets. My dad says that dogs are the only thing that love us more than themselves and I agree. 100%. Well Jesus does too. Dogs and Jesus. Not that I'm comparing Jesus to dogs. Just the love. Oh goodness. You know what I mean.......

Anywho - I want to tell you just one cool story about our sweet Kaia and then we'll move onto the good. I promise.

When we moved into our previous previous home two years into married life, the first thing our elderly neighbors said was, "we hope you don't have any dogs. We hate dogs." Oops. Um about that....we happen to have a one year old chocolate lab who loves to run and chase things and occasionally a lot of the time bark at a passerby.

And then she wormed her way into their hearts in the endearing way that she loved on everyone. We would come home and find out they had been giving her treats and throwing a stick with her. We had an invisible fence that she never crossed because she was a wuss but they would come over to play with her.

Fast forward about seven years....

We came home one day and found out Murray was in the hospital. When Todd went to visit him a few days later, he kept trying to tell Todd something but he couldn't talk well after the stroke. He finally got it out.
"Kaia. My best friend.
Kaia. Best Friend."

Come to find out, Murray had a stroke in his back yard.
Kaia ran through the invisible fence (shocking herself) and stood over his body barking continuously until Helen came out to see what was wrong?

That's Love, people.
That's a dog for you.

She had occasional moments where I wanted to kill her like when she ate all my students papers, our remote control, and gobs of toilet paper....or when she made me chase her in the pouring down rain while I was nine months pregnant with Owen, but I wouldn't change a thing. 

She was our first baby and she is MISSED!

RIP sweet girl. You made life much more enjoyable. You will not be forgotten.

And now for the good?

We just finished our first day at St. Josephs. Day one out of 25 and it's good? Really?


We got over the mental hurdle of leaving the family. And believe me, it was a hurdle.

But we're here; we're adjusting, and Owen had a great first day. He ate all of his bites at every meal and warmed up to his therapists. His weight was good and we're already discussing all of our options for foods to introduce, etc. It is going to be hard work, but I am hopeful. And hope is good. I will try to update more after our big team meeting Thursday morning, but for now, here's a few things you can pray for if you get bored:

1. They're going to start challenging him towards the end of the week with more volume, textures, and new foods.

2. He has to have his g-tube replaced back to the correct size for his stoma. I'm scared. He's scared. Pray this goes smoothly.

3. Weight Gain. Weight Gain. Weight Gain. They will weigh him three times a week. This is serious business here. We need to see progress on FOOD so we can slow down on the g-tube. This is my NUMBER ONE goal for being here. I want to see this boy gain weight from FOOD. Not formula.

And now for the even better news?
Aunt Sarah Ellen is here. All the way from TX.
And we love us some Aunt Sarah Ellen. She's great with Owen and she makes me laugh. What more could you want? 

Oh wait.......
And then there's this too:

While you soak up that cuteness, I'm off to bed.

Bring it, Day Two.