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.

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!

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

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!

Mr Boy on the News

Mr Boy was featured on the news for his almost 20 hour-long surgery.

KELOLAND.com | A 20 Hour Surgery

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.

New Milestones

Summer is finallllllly here in South Dakota. So that means we get to go to parks everyday! This week has been chocked full of visits to parks. Mr Boy has a mild obsession with them as of late, and I am loving it. This week Mr Boy started crawling up the steps and going down the slides at parks all by himself! You're probably thinking, "Who cares?" And I don't blame you! But I'll put it into perspective: For a long time now, we watch babies pass Mr Boy on the playset, crawling up the stairs, going down the slides, while their moms nonchalantly watch from the sidelines. When you see multiple 1 year olds fly past your 2 year old on the playset, over and over, it gets a little disheartening. He couldn't accomplish any one part of the playground by himself, and was the only kid who still needed his mommy's help... and not just because of his more limited muscles and bone structure, but a big part due to his fears.  So it was especially moving and incredible to see our lil boy conquer the entire playground by himself!

Mr Boy was being a ham and wouldn't open his eyes for the camera.

Honestly, he is really not all that far behind his peers, but it's just amazing to see him finally so close to moving and playing like them, when he had so many obstacles and setbacks. It's easy for us to forget that not only was Mr Boy born 2.5 months early, but he has spent nearly 5 months out of his short 2 and 1/2 year life, in the hospital. And during those 5 months spend in the hospital, he was surviving, not developing, so it would be natural for him to be at least 5 months behind developmentally. Then add to that, his physical challenges and top it off with a strong fear of everything, and you've got a mess! :)

Yet Mr Boy continues to amaze us just when we are starting to get discouraged and sad about how fearful he is, by doing something brave. We've had a hard few months ever since Mr Boy's panic attacks started, but he really hasn't had an intense attack in several weeks. Just a few panicky moments every week and a lingering, heightened sense of fear. There have been many sad moments this past month as we have tried to partake in fun activities with Mr Boy, only to be shot down by his tearful, panic stricken screams, even when approaching our own neighborhood park. We just never know what we are going to get with him, or what will trigger fear. One day it's a fun time at the park, another it's screaming in fear and this is not the usual terrible twos... this is panic. I know this because he has also started throwing the typical "terrible twos" tantrums and they are so cute and manageable in comparison. Anyhow, this week has been a good week, free of his usual fears, and because of that, he has grown so much in just one week!

Mr Boy even played at a park full of other kids and didn't scream in the face of any of them! Crazy, I know. He's growing up. I think he was calm enough to let his guard down a little and actually watch the kids playing and realized that none of them were paying any attention to him, and that made him happy and comfortable. Usually in his life, when the attention is on him, something bad is about to happen, so no attention is good attention!

I think the further we get from his pain, the more Mr Boy will blossom. Since his surgery, we have not had to do his nightly painful routine, so he no longer has to endure a forced painful procedure every night, at the hands of his parents. Praise the Lord! And now that we give him "happy medicine" for every Doctor visit, we have been able to eliminate the main place where all his fear originated. We are excited for this coming summer of limitless possibilities! 

Some milestones and silly moments caught on video:

Super Hero Cape!

Last week we got a special package in the mail from my amazing friends with whom I grew up, in Florida: Manika Chuon, Colby Roberts, and her wonderful husband, Joe!! We got 3 hand-made, personalized capes!!! 

Philippians 4:13
I can do all things through him who strengthens me.

Romans 8:31, 37-39
If God is for us, who can be against us? 
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. 

We were shocked and humbled by the capes and so excited to put them on and run around! Living so far away from our families and all the friends with whom we grew up, can make us feel a bit isolated and lonely at times. But these gifts made us feel so incredibly loved and supported!! Thank you Manika, Joe and Colby, for your loving and inspirational capes!!! We can't wait for the weather to finally get nice so we can run around outside with them on! I am sure Mr Boy will be wearing his cape to all future Doctor appointments.

Superhero faces: