Is it Monday YET?!

Y'all,

This summer?

Not going down in the history of my favorite summers.

I love all the posts on FB from parents who are sad to send their kids off to school. It just proves to me that they are, most likely, smoking crack. I always wondered and now I'm like 99.9% sure.

As for me? I sent my kids out to the bus stop this morning even though school doesn't start until next week. 

Just wait there kids, the bus will be here Monday morning. Here's a snack. Don't run in the street. Watch your brother. In case of DIRE emergency (like one of your limbs falls off) IF you feel you ABSOLUTELY need me, call your dad. I'm going to bed.

See you Monday after school.

And I know. I get it.

You look at these sweet sweet faces and you think, how can you possibly say that about these sweet little cherubs?

Here's how I can say that - this picture is a lie. We had to pay them upwards of one million dollars to look at the camera and smile. Before this picture was taken, they were trying to stab one another with swords and threatening to blow up the house.

Okay that may be a slight exaggeration but seriously, we're done. 

We've had our together time. Lots of together time. Too much together time. Yesterday as I sat through yet another cartoon movie and then got eaten alive by mosquitos who were feasting upon my flesh like it was their last meal EVER during a game of putt putt, I could literally feel my few remaining brain cells deteriorating. And I looked over at Todd and saw his glazed over expression and I thought, my God, they've taken him down too! 

So yes, we are done. We are more than ready to curse the school morning rush, pack some nutritionally questionable lunches, and send them off to torture someone else with a million questions they already know the answer to.

Sorry Teachers.

But seriously?

IS IT MONDAY YET?!

Are We There Yet?

Remember road trips back in the day? The trips our parents took us on? The trips where they packed the back of the station wagon with crayons and books and maybe a walk-man if you were lucky. Picture this: there were no DVD players in cars. Hell, there weren't even CD players in cars. There were no cell phones or ipads or kindles or tablets - just a family of five barreling down the road playing Punch Buggy or the ABC sign game or beating the crap out of each other in the back seat because one child crossed "the invisible line" that led into another child's cramped space. And if your family was anything like mine, about every 3.8 seconds, one of the kids would ask the question that I'm sure made my parents' toes curl and had them wishing their diet cokes were spiked with rum. 

(Maybe they were? I'm certainly not judging.)

"ARE WE THERE YET?!"

We asked it even though the answer was obvious. No, we weren't there yet. We weren't even close. We hadn't even made it out of our Houston neighborhood yet. What were we? Idiots? 

(Yes. Yes, we were idiots.)

And apparently I am still an idiot today. Because that is my question over and over and over and over and over again.

Are we there yet?

Can this madness end yet?

Can Owen just be a healthy "normal" kid yet?

Can my other two just have a taste of a stress-free day yet?

Can Todd and I stop taking this unbelievably high level of stress out on each other yet?

For the Love of all things Holy, ARE WE THERE YET?!

I ask and I ask and I ask.

And God quietly responds, No.

So I ask one more time, you know, just to be sure.

And His answer is still a quiet, but a firm No.

We are not there yet. In fact, it feels like we just did a U-turn. There is no approximate time of when we will arrive at our destination. The apple map icon says reroute and keep driving.

Monday's appointment was full of disappointment and poop. Literally. Not only did he not gain weight, but Owen lost almost a pound from when we were discharged from St. Josephs. SERIOUSLY?! His abdomen was "impacted with poop" on x-rays which led to a lovely colon cleanse. SERIOUSLY?! We cannot increase his volume of food yet for various reasons, and so we are back to the drawing board? SERIOUSLY?!  Where do we sneak in these extra calories? We sneak them in through milk and formula. Again! 

We try another medication. Again! 

We cross our fingers. Again! 

We hope that maybe this will be the magic formula we need to increase the weight on that scale.....Again!

So NO, we are most definitely NOT there yet.

We're not even close.

We're still circling the Houston neighborhood. 

And even though frustrations abound because we know He has the power to heal all things; we also know that He is faithful and His will is far superior to mine. His plans always exceed my expectations. In seasons like this, seasons where we get on the freeway and continue to drive in circles that feel as if they lead nowhere, I have to have faith that He is blessing me on this road trip. Because He is.

And I can choose to see the blessings of smiles, stolen hugs, puppy shenanigans, late night laughter with the hubs, impromptu dates with my daughter, or I can choose to see the frustrations, the scariness, the endlessness of a chaotic schedule.

Today?

Oh man I wish I could say I see the blessings today, but that's not real life.

Today I see the latter. I'm a ball of pent up anxiety. I'm done. I'm over it. I'm one bite of oatmeal away from screaming into a pillow. I'm just done. So so so done today.

Which is why I'm here: Writing. Digging my heels in and trying to find the good.

And a friend posted this quote the other day.

"I want you to be all mine - overflowing with My Love, Joy, and Peace. Because these divine gifts leak out of you, you need Me continually for renewal. Your neediness is not a mistake or defect: It keeps you looking to Me, depending on Me, communicating with Me."

-Jesus Lives by Sarah Young.

page 198

How true it is. If my life was the "normal" I crave, would I still CRAVE Him?

I don't know the answer to that.

I really, really wouldn't mind testing the theory, but all I can do is trust.....

And hang on for the ride.

And maybe spike my diet coke with rum.

No judgement please. ;) 

OBXing it!

Continuing on with Summer Fun....

As per tradition, we spent the fourth of July celebrating with Todd's family and the kids got to spend time with their grandparents both before and after our planned trip. They of course, had a blast! 

Again, I'll let the pics speak for themselves.

Will and Isaac. Best Cousins. Best Buds.

These next two shots are me trying to get Little Lachlen to take a selfie with Aunt Rachel. Lachlen hates me. He always has. He would never let me hold him as a baby and no amount of bribery has improved our relationship. The escape artist will have none of my shenanigans.

You and Me, Lachlen. One day about sixteen years from now, I'm going to buy you a beer or two and we're going to talk it out and bury our troubled past and become the best of friends. Just you wait.

The kids stayed on with their grandparents and I got three whole days of blessed silence and peace. It was much needed. 

They had a blast on their many adventures in the water and out.

And apparently some people find them tiring.

Who Knew?

I asked for pics with Grandma in them, but she being the typical mom figure was obviously the one manning the camera. Why is this always the case? So then I started facebook stalking her and it was clear she is still the one manning the camera when it comes to the grandkids. But I did find this pic that I love of these two people who love and support us and are always up for an adventure. See? She does exist?

Thanks Grandma and Chips for hosting our kiddos and showing them a good time OBX style!! 

We love you!

All Things Texas Style

I'm a little bit behind on updating the blog, but the kids and I headed to Texas the last week in June for a week to visit my sister and her family. We had a great time and the six cousins had a blast together. 

I'll basically allow the pics to speak for themselves.

There was baseball, dairy farms, wrestling, walks, and of course, frogs in toilets.

 Isaac got to meet the number one MLB draft player, Dansby Swanson, on the airplane. Super nice guy. He gave us his autograph and a picture. Isaac was in Heaven.

One day we went out to a dairy farm, fed the cows, and bought unpasteurized milk.

In case you're ever in a similar situation, the following advice may be helpful. You're welcome.

Tips for Removing Frogs From Public Toilets at Dairy Farms in Texas:

1. Pick frog up gently from the stomach.

2. Apologize that you have to remove him, but let him know it could be worse. You could have flushed him.

3. Put him on the floor where you can see him at all times to avoid a surprise frog attack.

4. Finish your business and wash your hands with hot water and soap. Lots of soap.

5. Freak out when you realize there is no soap and you just had your hands in a public toilet.

6. Take a full arm bath using your sister's baby wipes and hand sanitizer.

7. Next time, flush the frog.

Uncle Stephen played baseball with all the boys each night.

He had more patience than I would have had so my sister and I decided to help by sitting on the sidelines drinking beer. I think the boys learned a lot from our lack of participation.

Batter Up!

Elsa.

AKA Ellie Kate.

My lovely sister and her new running partner. If she can ever get him to leave the house.

;)

Is there anything cuter than a snaggle tooth six year old?

Methinks not.

This is my sister reincarnated in both looks and spitfire sassiness:

Love me some Lainey Anne.

The current owners of the house my mother grew up in let us come by and take a tour. It was amazing to show the kids the house their great-grandaddy built and one that I have so many fond memories of visiting. They loved it.

We also wanted to visit my grandparent's graves.

That did not go so well.

In case you're ever in a similar situation? Some more advice. Again, you're welcome.

TIPS for visiting Graves in Texas:

1. (And this is probably the most important tip)

Make sure you are at the correct cemetery.

2. Don't go in the middle of the day when it is super hot outside.

3. Leave Owen at home unless you enjoy listening to screaming and watching him fall listlessly to the ground because he just can't walk anymore! ("Anymore" being the two foot radius that he walked around the car while refusing to help us look for the graves.)

We also filled our days with museums, swimming, gym classes, where I refuse to believe my sister was not trying to kill me, good food, church, and lots of play time. I abhor living so far from family, so it was such a blessing to have that time together.

Thank you, Aunt Sarah Ellen and Uncle Stephen for housing us and putting up with our shenanigans.

And especially thank you for introducing me to Lime-a-rita beer.

Life. Changer. ;)

Come see us soon!

And so it begins.....

When your kids are toddlers, if you're anything like I was, you CANNOT wait to send them to camp. Seriously. You dream of it. The three hours of VBS in the mornings just ain't cutting it. You imagine dropping them off and coming back home to sleep and eat whatever you want and have peace and quiet and a break from the chaos of life with kids. You imagine yourself and your husband over candle lit dinners gazing lovingly into each other's eyes.....Or playing video games and watching movies together. Either/or. Sounds like Heaven, right?

And then those toddlers start getting older. And something very strange happens as they get older. It is really the weirdest thing ever, but they actually become somewhat more enjoyable to be around. Go figure? Where you once longed for time without them; now, in the midst of busy schedules, you long for some family time with them. But that's no longer their dream. They are sprouting wings and trying out independence. They are riding bikes with friends and stopping by for snacks or a bathroom. Your home is now basically an outhouse with food.

And then one day, it's time to send them off to camp. They've been begging. They are ready. They want to buy junk from the canteen and play games with their friends for a week. And suddenly you are dragging your feet. A week? Away? Won't they need me?! The answer: No. No, they won't. They may  (if I'm lucky) miss me, but no, they won't need me.

And so it begins.

The oldest child is on the East coast staying with awesome grandparents and going to an art camp.

She didn't even let me help her pack. She's got this.

The middle child is in the mountains staying in a cabin with friends and learning more about the bible. He did let me help him pack because he cannot find anything. Ever. 

The youngest child is stuck at home all week and none too happy about it.

And as I dropped my goofy nine year old off yesterday, instead of counting down the days until he comes home next weekend, I found myself counting down the years I have left with him. And it just doesn't feel like enough.  So I did what every sane mother does. I stayed in his cabin with him until he quietly said, "Bye Mom. I love you." 

HINT HINT: YOU ARE EMBARRASSING ME! NOBODY ELSE'S MOTHER IS IN THE CABIN UNPACKING THEIR KIDS CLOTHES! 

Hint taken, son.

And so I left, dragging my feet and picturing this in my mind: wondering how we got from there to here so fast?

And I'm not going to lie - I don't really want to go back there. My sister is there right now. And our conversations are often interrupted by screaming toddlers and I just laugh and laugh. (It's really funny when someone else is dealing with a two year old terrorist and you can just witness it with relief that your toddler days are behind you.....) 

But I don't necessarily want time to keep marching forward either.

Maybe if we could just stand still and stay here for a little while?

Something tells me that's not in the cards.

Home, Sweet CHAOTIC Home

We are home.

The Fischer Five (7 if you include furry kids) are reunited.

Owen and I were able to get discharged one day early and surprise the family last Thursday night. It was a great surprise and one I did not get on video, but it was oh so fun seeing their faces. 

We are so so so so so glad to be home. Life is still a hot chaotic mess of figuring out all these structured feeds and how to keep progress going, but I would much rather figure those things out from the comfort of my own home.

Our last night at the hotel, swimming with our friend that we miss:

Last day of feeding camp!

After five weeks away, we all have to adjust to being together again including the hubs and myself. We snuck off for a date the other night and it was just the kind of boring (dinner and errands) that we needed. We could have sat and chatted in these chairs all night. We got some strange looks but I think we're just past the point of caring. That's what age, perspective, and sangria will do to you.

These two definitely have some adjusting to do. It has not been a love at first sight kind of relationship. After arriving home and letting Cooper off the lead, he promptly went to my suitcase and urinated all over it to proudly proclaim, "Oh yeah. She's mine, yo." Dogs are strange, but I was oddly flattered so I urinated all over his toys to return the favor. ;)

We've been home a week and this is the closest I've seen them get voluntarily without trying to rip one another's face off......

That's progress, people.

I'm sure in a few more weeks they'll have BFF necklaces and spend their days licking one another's crotches. But until then, we'll keep pulling them apart during battles and trying to make them love one another.

The bigs are adjusting to life with Owen back home. Meal times look quite different now so that's the hardest part. We want to have family meals, but we also need very little distraction, so you can picture how well that goes with three kids. If you can't picture it, just imagine a circus, any circus act, and you're pretty close. Tightrope walker? Yup. Just imagine the tight rope walker trying to keep their balance while monkeys and apes jump on the line. 

That's us.

But we're together again.

And I wouldn't have it any other way!

My Three Clowns goofing off at bedtime:

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!

8. REPEAT FIVE TIMES A DAY.

(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.