Matthew's Feeding Tube Surgery (A Success)

Here's a picture to show you how skinny Matthew is before surgery. You can see his ribs. This picture was taken a year ago and I don't have a recent pic that shows his belly but just imagine, he weight 27 lbs in the picture and was 33 inches tall. Now, before surgery he is 28 lbs and 36 inches tall.. He looks much thinner than this picture.

The day before surgery they put an IV in his arm. We went to bed and I had been getting up to roll him over several times but this time I just sat straight up in bed. I thought I had a dream or something. I reached over to turn him over and when I felt his arm I "freaked"! I flipped the light switch on because something didn't feel right when I touched his arm. I looked and it was three, maybe four times it's normal size!!! I woke mom up and told her and she's Like', yea that happens when the IV comes out of the vain... I never knew it could happen. lol It looked horrible! I called the nurse and they took it out was going to put it in another place. I told them I think they could wait for a few hours because He's probably in enough pain (but he seemed ok). Mom said it was painful for a little while. It finally went down about 8 hours later.





Here's a pic after surgery. It looks bigger in the pic. The round stopper is about the size of a quarter. The long tube will be replaced by MIKEY BUTTON IN EIGHT WEEKS.

iT LEAKS A LITTLE but I keep it clean with soap & water. The whole is only as big around as the tube.


At first it was stressfull for me to give the first feeding after we were home. "Someone" was trying to tell me how to do it when "that someone" wasn't even there when they showed me how. lol Luckily I didn't listen cuz he was
wrooooooooooooooooooonnnnnnnnnggg! lol He knows who he is. Anyway after pouring milk and tylenol all over me and matthew I stopped to "gain my composure" I was really nervous. I tried again in a few minutes with NO ONE around and did it! Now I can feed and give meds with very little light if I have to after only one week!

Aunt Grace sent Matthew Balloons from PA! Thanks aunt Grace!


Well, it's been almost a week since surger. Matthew was sore the first few days and is still picky about moving his tube but he has not cried or been in a lot of pain.
I can get his food down him and meds within 30 minutes now. If I don't think he's had enough during the day, I can sneak in his room and give him an extra feeding without even waking him up.

Even his seizures are less. He had NONe during the day unless he takes a nap and for the first time in months, he took a nap and didn't have a siezure. He has skipped on night where he didn't have a seizure before going to bed for the night.

I am confident I made the right decision and it was the HARDEST I ever made. To me it was just another confirmations that matthew will never be normal.. But when it comes to keeping him with me longer, it doesn't matter. I have learned to accept his disablities one disability at a time, one day at a time. This surgery was no worse, for Matthew, than getting tubes put in his ears. It was very easy for him. It may not be easy for every child but it was for Matthew and I am so glad! It was nothing compared to his hip surgery. (that was a rough surgery)
Well, we are going to town and just fool around alittle while.
Charlotte

Sanctity of Life Week

Pro-Life Issues
Life: a miraculous gift
By Pat Centner
AFA Journal, January, 2003 edition

Even after six years, Ginger Millermon’s voice still choked with emotion as she told radio listeners nationwide of her infant son Jarrott’s struggle for life, and of the way God had used that struggle to teach Ginger and her husband, Joel, profound lessons in surrender and faith.

The Millermons had traveled from their home in Hutchinson, Kansas, to American Family Radio’s (AFR) headquarters in Tupelo, Mississippi, to tell Jarrott’s story on Today’s Issues and to promote Ginger’s new CD, First Breath, which features many of the soul-baring songs she has written as a result of her experiences. The couple had also come to the Tupelo area to present a musical concert for Sav-A-Life, an organization devoted to the sanctity of life.

This particular day was devoted to AFR and the AFA Journal, so Ginger, a petite young woman with brilliant blue eyes, prayed with Joel, and then donned a pair of studio earphones and began to tell her story.

It all began with Ginger’s second pregnancy. She noted that she and Joel had been thrilled at the prospect of giving their 18-month-old daughter, McKenzie, a new little brother or sister. However, in Ginger’s 29th week of pregnancy, she began having contractions and was rushed to the hospital in Delta, Colorado, near their hometown of Paonia. Doctors determined the baby was in breach position, but were completely shocked when a sonogram revealed that Ginger was carrying not one, but two tiny boys in her womb.

“Those little boys wanted to come,” Ginger said, but it was dangerously early. She was immediately transferred to the hospital in Grand Junction, where desperate measures by physicians held the babies’ birth off for four days. It was still ten weeks before the actual due date. Had their birth not been delayed, Ginger said it is probable that neither of them would have lived. Instead, Jarrott and Brennan were delivered by emergency C-section on August 6, 1996, weighing in at 2 lbs. 14 oz. each. The twins’ birth marked the beginning of a time of testing and suffering that would change the Millermons’ lives forever.

A fragmented life
“When they’re born, premature babies’ lungs are usually very hard,” said Joel, “and both our boys were having severe breathing problems shortly after birth. They were given surfactant, a drug that lubricates the lungs, and Brennan responded within 24 hours. Jarrott didn’t. As a result, when he was four days old, Jarrott was flown to Children’s Hospital in Denver.

“I literally thought I would never see him again,” Ginger explained. “I couldn’t go to Denver because I’d had the C-section and was still very sore. So before they left, I went and stood over Jarrott’s bed. I literally couldn’t touch him because it would over-stimulate him and send him into respiratory distress. So I stood there and cried, and said ‘Bye, I love you.’”

After that, life was challenging, Joel said. Ginger returned to Paonia, but frequently had to take Brennan to Grand Junction with reflux and other problems. “With Jarrott in Denver and Brennan in Grand Junction, sometimes we wouldn’t see McKenzie for three weeks at a time,” mused Ginger. “She would go to my Mom’s in Kansas. She was a real trooper.”

Jarrott’s fight
From the beginning, doctors diagnosed Jarrott with a preemie lung disease, bronchial pulmonary dysplasia. “But it took quite a while for them to discover that he also had tracheal bronchial malacia – a disease in which the airways in the trachea and bronchi collapse,” commented Joel. A normal person’s trachea has ring-shaped cartilage that holds the airways open, but Jarrott’s did not. He continued to struggle.

“When he was about four months old, the doctors began to hint that Jarrott probably would not survive,” said Ginger. “But they just pulled out all the stops; it was kind of their last ditch effort to save his life.

“Shortly after, they called us into a care conference that I will never forget. We went into this room, and all the doctors and specialists were there. Everyone had tears in their eyes. The head doctor over the preemies shook her head and said through tears, ‘We have fought so hard for him, and there’s just nothing left to do.’”

Joel asked about a heart/lung transplant or other options, and was told, “It will take a miracle for Jarrott to survive.” The pulmonologist said, “There is no way this child can live with these lungs. And if he should happen to live by some miracle, he will have no quality of life. He will never walk or talk; he will never run and play. He will have cerebral palsy and be on a ventilator the rest of his life.”

Joel and Ginger were given the option of taking Jarrott off the ventilator and letting him go right then. The doctor said, “He’s going to die anyway, and it will be over for you guys. You’ve been under so much stress; and it’ll be over for him too.”

The other doctors also encouraged them to do this, but Joel and Ginger could not find peace. Since Jarrott still had active brain waves, the couple told the doctors they were going to continue to pray for a miracle.

“And we knew God could do that,” Ginger explained. “We also knew that God is sovereign, and after five months, we had finally come to a peace about letting Him take Jarrott if that was what He chose to do. The verse God used in my life at that time was one I’d known since high school – Psalm 46:10: ‘Be still and know that I am God.’ And that’s where Joel and I were. We needed to be still and allow God to do what was best for all our lives.”

From that experience, God led Ginger to write Be Still, one of the songs on her CD. Here are partial lyrics:

There are times in my life when I ask You “Why?”
When my sorrow runs deep and I start to weep,
When I’m lost and confused and I can’t find You,
And I wonder if You’re there.>
But if I’ll be still, and know You are my God,
Your love will never fail, and Your faithfulness is true,
And if I’ll only be still, and seek You once again,
Your strength will be my own when I am at my end,
If I will be still, just be still.



“After that conference, we literally were waiting for Jarrott’s last breath,” continued Ginger. “Then God reminded us of James 5 where it says, ‘If any among you is sick, have the elders come and pray over him.’ My dad, Joel’s dad and Joel were elders, so they prayed over Jarrott, and we waited….

The answer
“It’s a complicated story, but after spending more than a year in the hospital, God did miraculously heal Jarrott,” said Ginger. “Today he’s six years old and runs and plays like all the other kids. He has no lung disease or cerebral palsy, and he can say his ABC’s forward and backwards. He’s an amazing little guy.”

Last year when Jarrott went for therapy at Johns Hopkins Hospital, one doctor looked at his chart and said, “This was God. There’s no other explanation. Jarrott should not have lived; it’s nothing that men did.”

A commitment to life
The Millermons are completely committed to the pro-life cause as a result of their own struggles surrounding Jarrott’s life. Ginger explained: “I think the whole issue of the doctors confronting us and telling us Jarrott would have no quality of life and that we should let him go, and then watching God heal him, is the same issue we’re confronting in the pro-life arena, and that is, every life is to be cherished, from the moment of conception on. Life is a precious, miraculous gift from God.”

Today, a vital part of Ginger’s music ministry is serving pro-life organizations across the country. She wrote First Breath for the Open Door Pregnancy Care Center in Hutchinson, Kansas. The song’s lyrics reflect the cry of the unborn child:



Mommy, give me a chance to say I love you,
To hear you singing a lullaby,
Holding me close when I need
to cry.
Mommy, give me a chance to hear your laughter,
Watching me as I giggle and coo,
Taking my first steps to Daddy or you,
There are so many things that I want to do.
Give me my first breath.

For I am fearfully and wonderfully made, fashioned by God’s hand.
My days were written in His book long before time began…
Give me my first breath.

More Links to check out:http://www.nevadalife.org/sanctity_of_human_life_week.htm


The Millermons present their concert ministry for churches, banquets and other venues. For information, or to obtain a copy of First Breath, call them at 620-665-3015; write them at Anothen Music, P.O. Box 624, Hutchinson, KS 67504; go online at gingermillermon.com; or email info@gingermillermon.com.

Stephen's Homecoming Video

My Sunday School kids and I have been writing a fellow church member letters while he was in Iraq for the past six months. He came home last monday. I felt like I needed to arrange something for his Homecoming. Our church and his family gave him a "going away" party but I thought we should surprise him with a big "Welcome Home" party. We made banners (one was about twelve feet long" and put it at the beginning of our drive. HE lives across the street from us. We had a Sheriff's deputy pull them over on the highway before you get to our drive. He was very surprised. He got out to see what was up with the Deputy, then he saw all the kids from our church and his family running toward him with flags! We had ballooons down the drive with the posters. I just wanted him to know how much we appreciate him "almost' sacrafising his life for our freedom and for our protection from terrorist! I also had our local newspaper stop by. They were happy to take some pics and put him on the front page of our local paper..
It didn't seem like a lot but hopefully he knows how much we appreciate him putting his life on the line. He was willing to die, no questions asked. Some people may not understand but if you have a someone close to you in the Military, you understand.

Can't Afford a Gait Trainer? Here's an Idea

Can't afford a light gait trainer??We can't either!










If you have a walker that just happens to fit on the edges of treadmill, then you are in business!
A neighbor gave us a small, very lightweight treadmill. It folds up when we are finished using it.
I lock all the wheels first. The sides of his walker are clamped down with a two big clamps. Bought at walmart.
Sometimes he wants to just sit on the bar and be lazy but I fixed that by taking the sitting bar out of his walker.

You also need this to keep from injuring your back.
This is just an old computer desk chair with the back off of it.

Sometimes Matthew will walk on his own, sometimes he needs help getting his legs going. I just push behind his need one then the other. Even if your child doesn't do the walking simulation on his own, it's a good way to make new brain waves even if you have to sit there and push his legs and do the walking for him. Matthew is so funny on it. Some days he will just sit and be "lifeless". Somedays, I can turn the treadmill on high and you should see him run.. He'll have his eyes wide open, his head bobbing and his facial expression is like he's working really really hard!

If you don't have a walker, you can try to a MERRY MUSCLE JUMPER This and just hand it over the treadmill.

They will special order one for your childs size. http://kidalog.net

I wouldn't suggest leaving them in there unattended for even a second.!

I don't know what type of walkers you have but if you are planning to purchase on, I would keep in mind that you may want to use it on a treadmill.

You got Something to SAY? Say it on a TSHIRT!

Here are some samples of some T Shirts I made for Matthew. I think Matthew likes his USMC T shirt the best!








I get so irritated when people say "Oh, He's sooooo sleepy!!! (Especially when he's WIDE AWAKE!) I think this T shirt will fix that! I even added his web site address on his T Shirt!












And Finally a T Shirt to get back at all the people that STARE at Matthew. It's one thing to STARE and smile,, that's okay but To STARE AND wrinkle you nose or to STARE and STARE without speaking to him... Here's one for you..

If you have something to Say and a pic to go with it, I'll be glad to make you a Tshirt.
Black and White print is 15.00 and Color is 25.00 That includes a white Fruit of the Loom TSHirt and shipping (if you live in the US) If I get a lot of orders, Ink is very expensive!!! It also includes your website address if you have one.

Here are some other things I plan to put on a tshirt for Matthew.

WHATS WRONG WITH YOU????

I can HEAR better than YOU!

Don't Stare Long... Grandma's Watching you!

Normal people SCARE me!

What Happened to YOU?

I'm Perfect, You're NOT

God's Not Finished With Me Yet.

Grandma's Heart

My blonde hair and Blue eyes are REAL! Are Yours?

Just email me if you want a tshirt!

Charlotte

Another Angel Flying Too Close to the Ground Needs Prayers.

The song you are hearing is Just for "Angel" and his family.

This is the Last message our group Received from a little boys mom on our Polymicrogyria Support Group. I didn't want to post their names because I have not heard from her to get permission. So we don't know if He's gotten his wings yet. Just keep him and family in prayers. We'll Just call him Angel for now.

I have sad news; Angel has deteriorated and our goal now is to keep him comfortable until the end. I will sign his DNR as soon as it's ready and we are making arrangements to have him home for one last Christmas. After Christmas, we will be going to a wonderful pallitive care facility to settle him and the we go home for the last time. I promised him he would die in my arms at home and I am keeping that promise.
I will try to keep you updated, thanks;
His Mom
Thank you for your thoughts on Angel. Tomorrow we are going to the pallitive care place to get everything arranged to take Angel home to pass away peacefully in my arms as I promised him. Wednesday, I had them remove the TPN feeding and within an hour, he was sleeping peacefully. We are better able to controll his pain now and he will be with the angels in less than a month. My heart is breaking, but Angel's needs are topmost in my heart and mind. I will not allow him to suffer a minute longer than necessary, that is my gift to him.

G Tube Surgery Journal

January 6, 2006

We saw the doctor yesterday and Surgery is scheduled for the 24th. We have to be in on the 23rd for a PH probe to see how much if any acid reflux he has. If he has it he'll have to get his stomach wrapped to prevent acid reflux. The doctor didn't tell us one thing we didn't already know about the surgery. Me and mom just looked at eachother like yea, we knew that. lol The good thing is the surgery is done laproscopically. Only one tiny incision if he only needs the tube but 4 tiny incisions if he needs the reflux procedure. He still gets to eat by mouth if he want's too! I will continue to feed him a little by mouth every day if he's not sick, coughing or gagging. Hopefully he'll keep the ability to swallow but the doctor says that gets worse as they get older. I gotta go, got lots of stuff to do!
CHarlotte

Hey,
I decided to start on My book. lol I mean, at least I got my 'Book Cover" ready. So here it is.
I will be starting on the inside really soon!

Doctor's Appt. Is tomorrow!

Our Appt. is tomorrow at 10 with a gtube surgeon. I may have done too much research on this feeding tube. I feel like it's a good thing and will add more years to Matthew's life. But of course, I want them to tell me the Matthew NEEDS a feeding tube. I don't want to get it just to make things easier on me. I know the surgery is not going to be easy. I found out that most gtube surgeons do another procedure during the surgery. It's where they wrap the stomach... I forget what's it's called but it prevents reflux or gerd. I've heard a lot on the loop about kids with gerd and reflux but didn't realize that it was caused from the tube. Anyway.. I am going to try to get me a list of questions together for the doctor tomorrow. If I have ONE bad "feeling" about the doctor, we will definately find another one. I don't believe I HAVE to use whatever doctor I am referred too. I don't have to let them treat me like I am an idiot. Matthew's life will be in God's hands and the doctors hands but if the doctor doesn't "fit my expectations" we'll move on. I usually get these "feelings" about things and know if I am doing the right thing or not.

What really stinks is that I have been using up most of our days for the last few weeks trying to get enough food and drink down Matthew that he doesn't lose weight. This evening, he decides to eat a half of stage three baby food like a pro. I thought that this was great!!! Maybe he's getting his swallowing ability back.. But when I tried to give him the juice with his phenylbarb, he breathes funny and chokes. I guess I'm just looking for an excuse to change my mind. It actually will be up to me whether or not he gets a feeding tube.
Yea, I'm nervous already.
I was also wondering how I would go through with a surgery and take my online classes that start the 16 of this month? I guess I'll cross that road when I get to it. I can always withdraw and start again next semester. I'll post tomorow about the doctors visit.
Charlotte

Songs of Love

Songs of Love

I decided to upload Matthew's personalized Song made by the Song's of Love organization. They did a wonderful job on the song. If you want to get your child their own personalized song please visit their site!

The Songs of Love Foundation, the only nonprofit organization of its kind, and to date has recruited a group of over 350 talented artists nationwide. Collaborating with over 300 hospitals, private health-care institutions, and with various individual families, they have produced intimate musical portraits(which are never duplicated) for thousands of children and teens.
Thanks Again, Songs of Love!
Charlotte

Happy New YEAR

Happy New Years from The Kapplers!

May your Troubles in 2006 last as Long as
Your New Years Resolution!



I read that on the church bulletin board today. Anyway, Matthew is doing wonderful. He's very vocal lately. We have our appointment on Thursday with Doctor Islam. He's the one that does the gtube surgery.
I'm scared of the surgery but not of Matthew having the actual tube.
I know it's what's best for him. I am thankful for another year with my little Matthew. He brings joy and sunshine into our lives every day that he is here. Even when he's sick! He wakes up smiling and goes to bed smiling and laughing.. What more could I ask for?
Ganny and Matthew

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