From Surgery to Applesauce

It's been a while since we have updated anything about Nicholas medically. Honestly, we have been so frustrated we didn't want to talk about it never mind write about it. Well here is goes...I will try and wrap it up all up in a few paragraphs and hopefully common english.

Nicholas has a GJ feeding tube which means there are two ports or openings. One goes directly to his stomach while the other feeds into his intestine. Since he refluxes his food, we feed him into his intestines therefore bypassing his stomach and then no reflux. He recently had his Nissen redone, in hopes of being able to feed him by stomach, only to find out a few months ago that they think it once again has come undone. If his Nissen was intact then we could feed him by stomach and he would not throw up his food. We've tried this and he throws up therefore we know, for now, we need to stick with the J port and feed him through his intestine. Make sense so far??? (probably not!)

Okay, so his feeding tube has been clogging lately. We have had it replaced, which requires a trip to radiology, 4 times since August. It should only be replaced twice a year. NO ONE CAN FIGURE OUT WHAT KEEPS MAKING IT CLOG! So frustrating! We try feeding him, the pumps stops working because it clogs, which equals no food for Nicholas. See why we have to get this figured out! We have an AWESOME GI doctor who has been working hard to figure this out but still no solution. One of his options is a surgical j tube. I'll explain this is a minute.

Our nurse suggested a GI doctor from Chapel Hill so off we went today. He was very nice, listened to us and offered these words. 1. We can try feeding him by his stomach again to see how that works (risking pneumonia!) 2. We can get another gj tube and pray that it works this time. 3. Get a surgical j tube placed. There's those words again...surgical j tube.

SURGICAL j tube. That means surgery for Nicholas. What do you think my response was to that!?!?!? NO WAY! I don't know the exact details of the surgical j tube but the end result would be that he now has two tubes on him. One being a g tube (which feeds into his stomach) and the other would be the j tube which would be surgically put in. The surgery is very invasive and painful to recover from. Did I mention he has another hiatel hernia too? So he said once they're in there he could fix the hernia as well. This would make the surgery even worse. We could have 1. a rough surgery that comes with complications by placing the j tube. Then a year or so later have another rough surgery and fix the hernia or 2. have a even worse surgery by placing the j tube and fixing the hernia with even worse complication all at once.

Our prayer for Nicholas would be that the g tube would work and we could feed him by stomach or that the clogging would resolve for the gj tube. We do not want Nicholas to have surgery again and will do every possible in our power to prevent this. Thankfully we have an awesome medical staff that feels the same way!

Off we went to appointment number two at Brenner to the Kids Eat Program. This is a place of therapists that help kids learn to eat again by mouth. We didn't go in there too enthusiastic after that last appointment. These people are so good and knowledgeable. They get updated on everything and say "OK, let's forget about the hernia for now. That is not an issue at the moment and let's keep rolling with the gj and see whats happens." Love those people. Just the encouragement we need but.....it gets better!

They pull out the spoon and applesauce....

and I am thinking "No thanks, we're not hungry" She starts feeding Nicholas!!!!! Our mouths dropped to the floor!! She fed my baby boy APPLESAUCE!

As you can see by his face he wasn't sure what to make of it. They fed him, listened for his swallow, and then waited for gagging. He did everything perfectly. We were floored. Nicholas ate food, swallowed, and did not gag! They are now going to try and get a specialist to come to the house to work with us and Nicholas to better train him how to eat. Once we get him to two ounces of food we will then go in for a swallow study to see if he can eat more!!!! DO YOU KNOW HOW HUGE THIS IS!!?!?!?!?!?

Never give up hope...ever. There is always hope through Jesus Christ. He has done so much more in our son than we could have ever even imagined. Praising Him....

James 1:2-18

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 7 That person should not expect to receive anything from the Lord. 8 Such a person is double-minded and unstable in all they do.
9 Believers in humble circumstances ought to take pride in their high position. 10 But the rich should take pride in their humiliation—since they will pass away like a wild flower. 11 For the sun rises with scorching heat and withers the plant; its blossom falls and its beauty is destroyed. In the same way, the rich will fade away even while they go about their business.

12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

13 When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; 14 but each person is tempted when they are dragged away by their own evil desire and enticed. 15 Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death.

16 Don’t be deceived, my dear brothers and sisters. 17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. 18 He chose to give us birth through the word of truth, that we might be a kind of firstfruits of all he created.

Thank you Lord for our trials through our perfect gift, our son, Nicholas James

Funnel Cake Adventures

I know, I know, what does this have to do with Nicholas? Nothing. We have been wanting to try and make funnel cakes for years and decided today was the day!

Not bad for our first try.....Then again how bad could it be coated with sugar and chocolate!

Next adventure....sugar glazed doughnuts. And, yes, I will post pictures.

Magic Kingdom

Sorry, we took a break from our Make A Wish trip but now are on track again...

Day One...well really day two. Our first time to Magic Kingdom. The kids were bouncing out of their seats.

Me and Megs in front of Cinderella's Castle.

3 of the boys...Nicholas was too manly to take a picture in front of the castle.

"Warning, you might get wet on this ride" Wrong! I got soaked!! And it was first thing in the morning. Splash Mountain.

Gold Mountain Rush. That's Steve in the back with the grey shirt on. We laughed so hard on this ride!

It's a Small World. Not quite how I remembered it as a child at Disney Land. The family wasn't too impressed but I did hear them singing the song (even have Steve on tape!)

Back at GKTW taking pictures with Mayor Clayton.

And Mayor Clayton's wife...

We had such a great time which was good because that night brought on the stomach bug for Megan and Brandon. Day 3 we spent in the villa cleaning, sanitizing, washing clothes and then starting all over again.

MERRY CHRISTMASREMEMBER THE REASON FOR THE SEASON

HAPPY BIRTHDAY JESUS

We've Got Talent....part 2

O.....M....G!!!

GO STEVE, GO STEVE, GO STEVE!

Scarlet Fever.....

......stinks with a big STUNK!

Still trying...

I am always trying to get Nicholas smiling and laughing on video! Whenever I start recording, he's stops. I turn off the camera and then he starts up again. I don't know what Neurology was thinking when they said he had a brain injury because he knows darn well what he is doing. And....we love every second of it :)

Below is short video. It is actually at the end of his laughing moment. If you pause the video at the very beginning you can see his precious smile. Seriously, push play, then pause and go back to O and 1 seconds and there is the smile that will make your day!