Tuesday, October 15, 2013

One Year Ago Today...

One year ago today, Mr Boy had his 19 hour and 30 minute surgery, including 8 different procedures, 3 surgeons, and necessitating a one month ICU recovery.

I've shared most the details about the surgery on the blog before, but one thing I never shared was one of my big concerns leading up to that day: How was David going to eat while I spent every second at the hospital with Mr Boy? I knew Mr Boy could be hospitalized for about a month, so I made David one month's worth of dinners. I wasn't being an amazingly kind wife, I was being controlling and cheap. :) I know good and well that left on his own, David would just eat out, and left on his own in a kitchen full of unprepared food, David might just starve. So instead of letting him spend money eating out every night, or starving, I baked 3 huge casseroles and split them up into individual portions with various, already cooked veggie sides, tossed them in the freezer and left detailed microwave instructions. I am still surprised that he actually ate from 3 casseroles for an entire month, considering he is typically tired of leftovers after night two. What a good husband.

I still don't know how we got through that month, how Mr Boy came out of the hospital more outgoing than before, or how Mr Boy started walking again, only days after getting the external fixator bars unscrewed from his pelvic bones. I also never thought the wound that formed as his skin started sloughing off, would ever heal. But months later, with diligent care and dressings, the wound finally healed and Mr Boy's quality of life drastically improved.

I could never thank our skilled surgeons enough. I could never show our nurses just how much we appreciated them. I could never praise the Lord enough for keeping Mr Boy safe and for keeping David and me sane through it all. There were definitely moments when all I wanted to do was run screaming through the halls. I can't imagine how much more Mr Boy wanted to do that!

We are so blessed that we live in a time and place that has the kind of care that enables our son to not only live, but live well. We will always be grateful for this intense surgery but glad it's already a distant memory! Can you believe that the only lasting, negative side-effect of the surgery is that David still gets queasy at the thought of Pepperoni Casserole, Chicken Spinach Bake, or Baked Macaroni and Cheese?

Tuesday, August 6, 2013

Colorado Trip

How to successfully drive 11 hours in the car with your 2 year old:

1. Buy a cheap table for the car seat for coloring, playing with cars, eating, and movies:

2. Buy some new toys like this sweet Curious George magnet set:

3. Make your own flannel graph:

4. Plan to stop for a long time at a rest area to let your child get their wiggles out.

5. Disregard all previous plans.  -- Leave home at 3:30am, drive straight through without stopping and never play with any toys... then let your insanely calm and precious 2 year old just sit there, enjoying the scenery for hours on end. Bask in the glorious silence. OK, so our drive back wasn't as crazily calm as the drive there, but we never even played with the flannel graph. Didn't hurt to be over-prepared. I call that a success.

      Our 10-day trip to colorado, including a 3 day camping excursion was incredible. It was refreshing to be around so much family, in such a beautiful place. Mr Boy doesn't have many friends his age here in Sioux Falls and is pretty skittish around other kids. So it was a blessing to see him connect with all his cousins, two of which were born just weeks away from Mr Boy.

Tickling his new best friend, cousin Z

Grandpa time
BFF time
Camping near Longs Peak

climbing rocks with some of the many cousins

bonding with his cousin G

roasting his first marshmallow

We took many walks to enjoy the mountainous views

There were many, many, many hugs with cousin A

dirty camping faces

This camping trip would not have been possible without Dave's parents' "house on wheels." I just blended up Mr Boy's meals before we went and kept them in the fridge in the camper. Easy Peasy.

Showing his first blood drawn as a result of rugged play outdoors, instead of from doctors. 
We were so proud.

The video shows how muchMr Boy connected with the family. It doesn't really seem remarkable unless you know just how shy and defensive Mr Boy used to be around people. He used to react to people like an abused puppy. But here you can see just how he's been blossoming lately. We are so proud of him! Praise the Lord!

Monday, July 22, 2013

Trip to the Omaha Zoo

When my parents from Florida, were here in Sioux Falls, visiting a few weeks ago, we all took a weekend trip to Omaha, to visit the incredible Henry Doorly Zoo and Aquarium.

Mr Boy didn't mind the dark aquarium because it reminded him of Curious George's Cave Episode. 
He kept yelling, "cave! George! cave! flashlight!"

Inside the largest indoor desert in the world

Some penguins are barely visible behind us.

Eating out with the grandparents at Famous Dave's

Playing in the sprinkler in our yard as the grandparents slave away picking weeds.

Today we drove 11 hours to Denver to visit Dave's family.  We woke at 3:30am and drove like crazy till we got here at 1:30 (1 hour time difference).  I prepared for weeks for this trip, thinking of all the ways we could keep Mr Boy entertained and happy for the long drive. I brought all kinds of things just in case and planned on letting him out to run around for an hour... but in the end, he just sat in his car seat, chatting and holding his monkey for most of the trip, content to keep on driving. We were very impressed with his car-trip skills. We will be here 10 days, hanging out with family and friends, and even go camping with the whole family while here. We've been watching a "Curious George goes Camping" video to get Mr Boy pumped up. If Curious George can do it, he can to. :) Will update when we get back!

Friday, July 19, 2013

What "eating" with a G-tube looks like

I am a very curious person. I am not curious in the same way Curious George is curious - I know this because I have been a frequent student of his cartoons recently, thanks to Mr Boy.  Curious George goes after all possible ways to satisfy his curiosity, whereas I often choose to keep my questions to myself. Well, if I were you, I'd be wondering what it looks like to feed Mr Boy through his feeding tube. I'd also choose not to ask me such a thing for fear of offending me (which is silly, because you would not offend me, but lets be honest, sometimes we are silly). So, in order to satisfy any of your lingering curiosities, and since I figure this is something he wouldn't mind you seeing, I'll show you.  Whether you care of not, here it is. :) 

Mr Boy licks all the salt off his crackers before placing them in his discard pile, during his "snack"
The boy can lick through a sleeve of crackers in minutes.

Licking the flavor off cheetos, crackers, and cookies during "lunch"

I lay him down to push the food I blended up, into his G-tube.

Using a syringe to push the blended meal directly into Mr Boy's stomach. 
I give him one of these 20 times a day on average, to give both water and food.
He is typically very patient with me as it only takes a few seconds. 

Sometimes if I make certain meltable foods into small enough peices (such as a mini 3Musketeer bar), Mr Boy will actually swallow them, but there's about a 75% chance it's coming back out of his mouth. Mr Boy is chewing some things now, which is a great improvement the past few months since he used to just hold things in his mouth without actually moving his teeth. Now he chews things up before gently taking them out and putting them back on the table.

Mr Boy's Blended Diet Recipe:
I pick one item from each bold category, depending on what I have on hand

 -Veggies-1 jar baby veggie, or 1/2 cup of veggie blend, or 1/4-1/2 cup sautéed zucchini, or 1 cup 
         broccoli, or 1/4-1/2 cup peas, or handful fresh carrots, or 1/4 cup cooked sweet potato, or 1/4 cup corn
-Fruit -1 cup berries or fruit mix, or 1 apple, or 1 pear, etc
-Meat/protein- 1 jar of baby meat, or 1/2 cup tofu, or 1/4 cup canned tuna, or 1/4 cup canned salmon, or 1/4      
         cup canned chicken, or 1/4 cup cooked chicken/meat
-Milk -9oz of 2% milk 
-Additional Dairy- 3/4 cup flavored yogurt, or 1/4 cup 2% cottage cheese, or 1/4 cup whole milk ricotta cheese
-Oils/Calories -1 TBSP canola oil, or olive oil, or flax oil, or coconut oil
-Additional Oil/Calories -1/4 avocado
-Additional Protein -1 heaping TBSP peanut butter, or 1/4 cup peanuts, or 1/4 cup almonds, or 1/4 cup walnuts, or 1/8 cup sunflower seeds
-Grain -1/4 cup baby rice cereal, or 1/4 cup brown rice, or 1/4 cup cooked barley, or 1/2 
         cup oat meal, or 1/2 packet cream of wheat, or 3 TBSP wheat germ 
-Juice -3 oz - prune juice 
-Extra calories -1 packet carnation instant breakfast essentials. 
-Children's Vitamin D supplement - (1ml of D-Visol)
-Spices- to help with digestion- ginger, cloves, allspice, cinnamon, nutmeg
-Optional add-ins when they are on hand: 
-1 hard boiled egg 
-leafy vegetables -spinach, kale, salad mix

Tuesday, July 9, 2013

Plays well with others

Kassy's parents visiting Sioux Falls

Mr Boy has always been nervous around other kids, but lately he has been blossoming and been getting more and more comfortable. Last weekend we had a lovely dinner with our friends Scott and Marie Aseltine, and their 1 1/5 year old niece Camilla. They have been together on other occasions, but Mr Boy always gives her the stink eye and steers clear of her. This time was totally different. He played near her happily, like it was no big deal.  But this was a HUGE deal. We were so encouraged by their shenanigans. He let Camilla tickle him and shortly after the scene in this video, she was practically tackling him with tickles while he lay on the floor. It was fabulous craziness. Praise the Lord!

Saturday, June 1, 2013

Blending our own Homemade 'Formula' - The Blenderized diet

In our seemingly endless quest to find a solution to Mr Boy's digestive/eating issues, we have finally settled with the best possible solution till Mr Boy gains the ability to eat food on his own. And that is called the Homemade Blenderized diet. 

Mr Boy is physically able to eat, but because of vomiting 10 times a day his first year and about 5 times a day ever since, he is just afraid to swallow anything other than creamy things. He plays well with food and will try anything and hold it in his mouth for a period of time, but everything gets taken back out and handed back to me after the flavor is gone. He just will not swallow hard foods. It's basically like learning to swallow a pill and just not getting the nerve. Every time solid food gets too close to his throat, his gag reflex kicks in and won't let it pass. 

We have tried endless brands of the specialty formula through the feeding tube to stop the vomiting and we have tried everything to get him to just eat... weekly therapy, fun tools, junk food, but nothing has worked quite yet. So while we wait for Mr Boy to grow, mature, and finally take the big step toward eating, we want to make him the most comfortable possible, by eliminating his daily vomiting, creating a safer environment to swallow.

Dave's Parents came to visit!
While trying to find just the right formula to feed Mr Boy through the feeding tube, we found that lo and behold, you can actually blend up your own food and put it through the feeding tube. It's called the Blenderized Diet. Sounds pretty obvious, but we've been too focused on what the doctors' prescribe and tell us to do, which typically doesn't involve trying something 'natural.' Thankfully we got the tip from a seasoned G-tube mommy, and the nutritionist at the hospital helped us with some recipes to ensure Mr Boy gets all the proper nutrition. We blend up nuts, beans, grains, yogurt, milk, avocado, meats, fruits and veggies, etc. And put it through the tube. Thanks to Dave's parents, we have a professional grade blender so we can literally pulverize anything into liquid, so it fits through the tube. 

The mighty Vitamix
It would probably grind wood into mulch if need be. 

There are several medical reasons as to why this is much, much better for Mr Boy, whole foods are always going to be better for you than commercial formula.  A 'normal' two year old shouldn't be only drinking formula, and neither should Mr Boy. Formula was just the only option we thought we had, but we can just take what a 'normal' two year old would eat, (except even more healthy, because he can't refuse all the veggies!) and grind it up to fit through his tube. We started this diet for Mr Boy about 3 months ago and Mr Boy seems to feel better all-round. There have also been a lot of better changes to his stools, but you don't want to hear about that! :) He also only vomits about twice a day, so that's an improvement! It just feels better knowing we are giving him whole foods, and that his tummy is tolerating it and thriving. If he is vomiting less, his stomach must be feeling better. Since his tummy feels better, he is more interested in food!

We were also able to put his backpack and feeding pump into storage because we no longer have to pump the food into his tube slowly, over hours at a time and through the night to keep him from puking. Now, we just squirt the food into his G-tube port with a 2 oz syringe, 16 times a day (4 times for breakfast spread out over an hour, 4 for lunch, 4 for dinner, and 4 late in the evening). Seems like a lot, but it is honestly a lot easier than dealing with tubing, backpacks, pumps and formula. And since we no longer keep him hooked up to the pump at night, I have been able to actually sleep through the night! And Mr Boy sleeps better since he isn't getting tangled up in his tubing all night long. We both agree: sleep is good.

Thank the Lord, we were able to find out about the Blenderized Diet and get Mr Boy a few steps closer to healing.

Matthew 6:25-27, 31-34
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?
31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well.34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.