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:

A Good Reminder

My mom gets daily devotionals emailed to her every day by Aletha Hinthorn, who leads 'Come To The Fire' Christian Conferences around the country. They also happen to be friends and my mom has shared with Aletha over the years, about our family and what it was like when we first found out about Mr Boy's condition. Today's devotional from Aletha shared a little about our story from my mom's perspective. It is such a wonderful reminder of the Lord's sovereignty and mercy, even in times of great darkness. It was hard for us to see it then, and even sometimes our vision gets clouded when things get tough, but it truly is an incredible honor and blessing to be Mr Boys parents... an honor of which we are greatly unworthy.

What God Said to a Hurting Friend by Aletha Hinthorn The night a friend in Florida was expecting to hear if her first grandbaby was a boy or girl, her daughter called to tell her that the ultrasound showed the baby is not a healthy baby. She wrote, "Don and I cried and prayed with the kids and then we had our usual prayer time. We both were struggling not to lose it. I then walked down the hall to go to a bedroom where I go to pray. As I walked down the hall I was planning on bawling as soon as I shut the door! "I walked through the door and before I could even sit down, the Lord said, 'You are seeing this all wrong. I am giving them an honor by sending them this baby.' With those words He also gave me such a great joy as I saw that it was true. I began praising and thanking Him instead of crying! I was amazed! It was definitely not what I was expecting! I have had some crying moments since then but that deep trust that He is really sending this for good is still there." God can share His thoughts with those He knows will accept His will as perfect. Thank You, Jesus, for the peace and joy that come when we acknowledge Your will to be good and perfect. "Let God transform you into a new person by changing the way you think. Then you will know what God wants you to do, and you will know how good and pleasing and perfect his will really is" (Romans 12:2).

Successful Surgery

Leaving Mr Boy on the operating table yesterday morning was so hard, but the fact that he received some drugs to keep him calm in the waiting room, helped my nerves as well.  Just seeing him so calm and knowing he wouldn't remember it, gave us some peace. He was only a little scared when his mommy had to suit up in her sterile 'space suit,' hair net and mask in order to carry him into the operating room, but by the time we entered the O.R., he was quacking like a duck and happily pointing to the Surgeon and yelling, "Marco!" (Dr. Demarco).

After the first hour of surgery, we hear upsetting news: that the surgery couldn't go exactly the way we had been hoping it would.  But 3 hours of surgery later, the alternative outcome was looking possibly better than the first. We still got what we wanted, which was to eliminate the nightly procedure which caused Mr Boy fear and pain, and we think this was mostly accomplished. Mr Boy had a stitch coming out of his pelvic bone from the last surgery, which was meant to be permanent, but was inching it's way to the surface... which was causing his tissue to inflame and become irritated... which was partially blocking the main exit for his urine to drain out of his bladder... which was probably the cause of his intensely painful bladder spasms he was feeling every night this past week. Since his bones are healed, it was ok for them to remove the stitch and now we can allow the tissue to reduce in size.

In the hospital after surgery. 

The funny thing is that there was a large plus side to the fact that his bladder couldn't drain quickly, causing the painful spasms... it enabled his bladder to stretch out quite a bit and become more flexible. Normal bladders are very flexible so they can fill and void, but since Mr Boy's was inside out and not functioning for his first 2 years, it was very rigid, so when they tried to close it and create a vesicostomy in October, it was not able to be a "traditional" vesicostomy, and it has caused us headaches as it tries to close on us, ever since. Now that it the bladder is more flexible, they were able to make the vesicostomy more traditional and larger, so hopefully this one will not close up on Mr Boy or at least it will give us more time.

Smiling after a little nap, a new little car, and a little morphine.

It was so hard to see Mr Boy in pain this past week with the intense bladder spams. We felt helpless and in the dark. But it's incredible to see the Lord use Mr Boy's suffering for good, to make his bladder more functional. The Lord knew what was happening even when we didn't and had a plan all along.

Romans 8:28

²⁸ And we know that in all things God works for the good of those who love him, who have been called

according to his purpose. 

 

Riding home this morning and SO excited about it!

Unexpected Surgery This Coming Monday

Psalm 46:1-3, 7

"God is our refuge and strength, and ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though it's waters roar and foam and the mountains quake with their surging. ... The Lord Almighty is with us; The God of Jacob is our fortress."

Mr Boy's Easter Egg Hunt

We have been having continual trouble with Mr Boy's vesicostomy ever since surgery in November and have been in to see the urologist regarding this issue a few times, but it just seems to be getting worse.  Yesterday, we decided to take Mr Boy in to see his urologist because of this issue, as well as horrible pain Mr Boy has had the past few nights. He screams and writhes in pain, pointing to his abdomen and yelling, "mommy, daddy, hurt!" We were very close to taking him to the ER at midnight Monday night due to the intensity and duration of the pain. We felt quite helpless, but believe the pain is due to bladder spasms. We have also noticed something prolapsing out of one of his abdominal holes, intentionally left open after his surgery in November.

I was extremely nervous about taking him in, especially since I knew the Dr would cause him pain during the visit.  We prayed a LOT and then I gave him the anti-anxiety medication, (which was prescribed for Mr Boy to take for Dr visits and procedures) for the first time, which made me more nervous, since I didn't know how it would affect Mr Boy and if it would be enough to keep him calm and out of pain, but it worked perfectly!! It kicked in right away and made him hilarious. He was very outgoing, giggly, silly and drowsy the whole time. He even didn't mind being laid on the bed and examined by the doctor. When the doctor caused him discomfort, he would say, "owwww," and then continue pointing out the fun characters and colors painted on the ceiling. It was absolutely wonderful compared to the typical, horrible fear and screaming during visits.  Just knowing that Mr Boy would not be negatively affected emotionally, by this Dr visit, made a load come off my shoulders. Mr Boy was so funny and happy during the visit, I was still giggling and happy even when I heard the surprise that Mr Boy would need surgery.

The surgery is going to be on Monday at noon and they blocked out 4 hours for it, but it may not take that long, it all depends on what they find when they go in and what they decide to do about it. We have a very specific prayer request for the surgery, for an outcome we think will make life so much better for Mr Boy and eliminate the need for the painful things we have to do to him each evening, which make him fearful and anxious about bedtime. If we didn't have to do those things, it would be amazing. We don't want to go into details on the blog due to the private nature of the surgery, so we just ask that you pray that the Lord's will be done and that Mr Boy's quality of life and health be improved.

Introducing his new Sally car to McQueen