(Topic ID: 116223)

Please help my grandson and others like him


By Bryan_Kelly

4 years ago



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  • 126 posts
  • 39 Pinsiders participating
  • Latest reply 10 months ago by jellikit
  • Topic is favorited by 1 Pinsider

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There are 126 posts in this topic. You are on page 1 of 3.
32
#1 4 years ago

My grandson Gordon was born on Christmas day two years ago. At 15 months old, he was diagnosed with type 1 diabetes. I will NEVER forget how helpless I felt when my wife and I arrived at the emergency room about 11:00 PM on a Sunday night to find my son Justin and his wife Chelsie, with little Gordon hooked up to an IV in each arm. I will also NEVER forget the helpless and confused look in Gordon's eyes as we came into the room. Funny how I can get a little teary eyed even now, when I think about it.

Today, Gordon is the love of our lives. He's such a great little kid and the way he deals with the daily diabetes rituals, amazes me. He gets tested 6 times a day, on average, and he's even gotten to the point where he tells us which finger or toe (well, he doesn't like toes anymore) he wants pricked. All of it is pretty painless, except for the insertion of his infusion set. Gordon's been on an insulin pump since he was about 18 months old ( what a God send that is) and it requires an infusion set, which involves the tubing from the pump which goes to a small adhesive disk with a needle attached, and that needle is inserted in his backside. THIS, he does not care for. Because of the adhesive and the way it reacts to his skin, it must be moved every couple of days. Some days he takes it like a champ, while other days, he needs to be held down while it's done.

Hopefully, someday doctors and researchers will find a simpler way. Maybe a cure? Maybe a bionic pancreas, which they're actually working on and would eliminate what diabetics now go through.

To help with funding the research, our family, including my 86 year old mother and 87 year old father, will be walking in the JDRF (Juvenile Diabetes Research Fund) One Walk on February 1 at The Mall of America to raise funds for research.

If you'd like to help Gordon and others like him, you can go to the following link and donate. It's my son's page and we're known as Team G!!

Thanks!!

https://www2.jdrf.org/site/Donation2;jsessionid=C092BE2DA9521B164D2F4C84679BF7E1.app333b?14306.donation=form1&idb=1240774834&df_id=14306&FR_ID=4785&PROXY_ID=9483673&PROXY_TYPE=20&s_src=boundlessfundraising&s_subsrc=bfDskFbPfMsg

16
#2 4 years ago

This was the night Gordon was diagnosed. He's a much happier kid now.

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#3 4 years ago

What beautiful eyes!!!

Oh my, Bryan! We have something in common. Think back to when I bought the "Drack-lee-er" pin from you. That was for our 5 year old little Noah. Noah had a brother born before him who was born with many problems, mostly associated with his heart and lungs. It was touch and go for 5 and 1/2 years until he finally succumbed. He died in our arms at Vanderbilt Children's Hospital just before Noah was born.

You now have a sense of what we went through, and now I have a sense of what your poor little one must endure. Our Logan had MANY needles in him through those 5 years. Let us hope and pray your gorgeous grandchild Gordon will soon have a miracle drug or device to come along and wipe out this problem. I am a Type II diabetic and while it is no fun, it is nothing compared to Type I.

It is awesome that your parents are 86 and 87 and still ambulatory! My mother will soon be 90 but she couldn't endure a walk like that. However, she does play the hell out of my pinball machines!!!

My family will pray for you and support you.

Mike Giorgio
Bowling Green, KY

#4 4 years ago
Quoted from Pintucky:

What beautiful eyes!!!
Oh my, Bryan! We have something in common. Think back to when I bought the "Drack-lee-er" pin from you. That was for our 5 year old little Noah. Noah had a brother born before him who was born with many problems, mostly associated with his heart and lungs. It was touch and go for 5 and 1/2 years until he finally succumbed. He died in our arms at Vanderbilt Children's Hospital just before Noah was born.
You now have a sense of what we went through, and now I have a sense of what your poor little one must endure. Our Logan had MANY needles in him through those 5 years. Let us hope and pray your gorgeous grandchild Gordon will soon have a miracle drug or device to come along and Wipe Out this problem. I am a Type II diabetic and while it is no fun, it is nothing compared to Type I.
My family will pray for you and support you.
Mike Giorgio
Bowling Green, KY

I can't even imagine, Mike. What Gordon's going through is a piece of cake compared to what Logan must have gone through. My heart goes out to you and his family.

Thanks for the post and thoughts. Some things are worth more than money!!

#5 4 years ago
Quoted from Pintucky:

What beautiful eyes!!!
Oh my, Bryan! We have something in common. Think back to when I bought the "Drack-lee-er" pin from you. That was for our 5 year old little Noah. Noah had a brother born before him who was born with many problems, mostly associated with his heart and lungs. It was touch and go for 5 and 1/2 years until he finally succumbed. He died in our arms at Vanderbilt Children's Hospital just before Noah was born.
You now have a sense of what we went through, and now I have a sense of what your poor little one must endure. Our Logan had MANY needles in him through those 5 years. Let us hope and pray your gorgeous grandchild Gordon will soon have a miracle drug or device to come along and Wipe Out this problem. I am a Type II diabetic and while it is no fun, it is nothing compared to Type I.
It is awesome that your parents are 86 and 87 and still ambulatory! My mother will soon be 90 but she couldn't endure a walk like that. However, she does play the hell out of my pinball machines!!!
My family will pray for you and support you.
Mike Giorgio
Bowling Green, KY

I forgot to mention, Mike. While I've got a fully restored "Drack-lee-er", Gordon's favorite is Fish Tales. It's the only one he likes to play!!

#6 4 years ago

And for those who have never met my son Justin, here's a pic of him and Gordon the following morning. He held Gordon all through the night. The only time he gave him up was when the nurses had to check him.

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#7 4 years ago

If feel you Bryan. My son was diagnosed with type 1 when he was 7. His blood sugar was so high he doesn't remeber much of that day and the following few after. You try to be strong for them but I cried like a baby that night. Tough little troopers these kids are. Keep up the fight. I firmly believe a cure is around the corner. C

#8 4 years ago

Bryan, sorry to hear about this. T1d sucks. To kick things off, I've made a small donation. But, more importantly, I'll sticky this thread on the frontpage for a while - hopefully helping you raise funds for this cause. All the best!

#9 4 years ago

Our daughter was diagnosed with Type 1 at age 2. Like you, I'll never forget what it was like going to the hospital. I tell everybody it was like being dragged to prison, with all the awful things you learned and were going to have to do to your child.

We filled a few 2-liter bottles with needles during the 1-1/2 years she was on shots. I'm so glad Gordon only had to endure that for 3 months. Why kids aren't on the pump right away is beyond me. Shots always seemed cruel and inhumane. 14 years of pumping and she's doing great!

Bryan, get Gordon some of this:
lidocaine-prilocaine.jpeg

It's not very expensive and can be purchased over the counter. If his doctor prescribes it, insurance may even cover it. Just use a little dab covered with a bandaid (we use half of a IV3000 "patch") about 20-30 minutes before you change his infusion site and his pain will be no more. This 30 gram tube lasts us over a year, changing sites every other day. BTW, we use the IV3000 patch because the set adhesive reacted to our daughter's skin too. So we clean with I.V. Prep, put down an IV3000 patch, then insert the infusion set over that. Holds up better in water too!

Good luck with the walk. So cool that your parents are walking too! Go Team G !!

#10 4 years ago
Quoted from robin:

Bryan, sorry to hear about this. T1d sucks. To kick things off, I've made a small donation. But, more importantly, I'll sticky this thread on the frontpage for a while - hopefully helping you raise funds for this cause. All the best!

Robin, if I called you an asshole at Expo, my apologies.

You're the best. Thank you!!

#11 4 years ago

Done! As a type 1 myself I am happy to help. Remembering many pinsiders sponsored seamonkey and I as we ran the Chicago marathon for the Chicago diabetes project.

#12 4 years ago

Nice work Too Bryan!

#14 4 years ago

I think diabetes is something that is curable. I do question weather they are trying as hard as they could to do it. There is so much money being made of of diabetics. From test strips and meters to insulin and drugs..It's like they are finding more ways to manage, rather then end it.
Diabetes is always on the rise. It has to stop.
Yes, they can keep us going..and that is a good thing. But, we need a cure.
I believe there is a cure within stem cells...it's what they are allowed to research.
Yes, I am one also.
I will pray for Gordon tonight.

#15 4 years ago

I agree with that. Diabetes is on the rise both types. The two types are also very blurred now. Some doctors just say diabetic now because it's so blurred. I depend so much in my insulin pump and my Glocose monitor. Gets me thru every day.

#16 4 years ago

One of my family's closest friends lost the fight a few years ago after keeping it in check for 40 years. I hope your efforts go a long way towards getting this beat so no kids have to endure what little Gordan does. Go Team-G!!!

#17 4 years ago

I'm sorry to hear about this Bryan. I just made a donation at the link you provided, and I'm happy to help support Team G!

#18 4 years ago
Quoted from dothedoo:

We filled a few 2-liter bottles with needles during the 1-1/2 years she was on shots. I'm so glad Gordon only had to endure that for 3 months. Why kids aren't on the pump right away is beyond me. Shots always seemed cruel and inhumane.

A lot of it has to do with the cost of the pump. Gordon's cost $6000 and I have no idea what his monitor cost. While it's easy to be concerned with the welfare of the diabetic, most people have no idea of the costs and many, without good insurance, simply can't afford it.

#19 4 years ago

That's true, it's very expensive, but I'm actually referring to doctors. We had good insurance and could afford a pump, but our doctor would not allow it. Much has changed since then, but I still hear of doctors refusing to allow the young ones to be on pumps. Sad.

What's also sad (and scary!) is the number of doctors and other health care professionals who DON'T KNOW ANYTHING ABOUT DIABETES.

#20 4 years ago

Glad to help. It's great that the extended family is available to rally round.

#21 4 years ago

I honestly can't thank you guys and this community enough. Thank you from the bottom of my heart. And just a correction, the walk is February 21st. Not the 1st. The old man is getting senile!

I should have guessed that this community would be so awesome with this. Our family and the JDRF community truly appreciates all the generosity!

Thanks again and GO TEAM G!

#22 4 years ago

You have posted a very moving and concerning account Bryan of the birth of your grandson. On the other hand you have provided an equally moving & inspirational account of how Gordon, his parents and the broader family are not only coping with this insidious health issue but how you are providing a positive mindset & environment for Gordons' future. You are to be lauded & applauded. Your story also puts into perspective what we as individuals often regard as adversity. Take care friend.

#23 4 years ago

He's precious! He must favor his mothers side of the family.

#24 4 years ago

Bryan, a couple of years ago, you graciously offered to install rivets on a new High Speed ramp that I had purchased. I mailed you the ramp and you had it back in the mail to me the same day that you received it. In addition to the rivets, you polished the metal pieces and realligned one of the switches. Everytime I play my HS, I remember what you did for me. So, when I read your story about Gordon, it brought a tear to my eye. I will be praying for the entire Kelly family and for a cure for JD. As a way of saying thanks for what you did for me, I have made a donation to Team G. Have fun at the walk and God Bless!

#25 4 years ago

Way to go everyone. Spread the word!

#26 4 years ago

Bryan,

First off, JDRF is a great organization. Thanks for sharing Gordon's story, treatment has come a long way since I was diagnosed in 1995 at 21 years old. For a Type-I was old and initially misdiagnosed as a Type-II as my pancreas hadn't completely failed yet. I have been using insulin pumps now for 10 years, in order to get that initial prescription they wanted to see I had already established an ability to control my Diabetes. In addition, I had to attend a 2 or 3-day training to understand exactly what the pump could and couldn't do, some of that was likely due to responsibility and liability. After all these years, a recent addition has become one of the most valuable, a Dexcom G4:

http://www.dexcom.com/dexcom-g4-platinum

The detailed reporting is simply awesome, as I can see exactly at what time(s) I am running high or low, get total numbers of each for a given period of time, etc. I've always subscribed to the idea that knowledge is power, the information I now have is great. I have faith that in Gordon's lifetime, likely sooner rather than later, he will have some form of artificial pancreas. I look forward to that day for him as well as all other Diabetics who require one.

Brad

#27 4 years ago

My son Tyler was diagnosed at age 4. He 6 now and been on the pump for a year. He checks his own sugar 1/2 the time and the biggest complaint we get is (why do I have to wash my hands)
The pump is great and the infusion set are not as bad as it looks like. My son mines them less then the pins. It get easier as you learn the routine. Word of advice ,never deny them a food because of to many carb. tell them ( yes you can have it we just need to plan for it )

#28 4 years ago
Quoted from jellikit:

Bryan,
First off, JDRF is a great organization. Thanks for sharing Gordon's story, treatment has come a long way since I was diagnosed in 1995 at 21 years old. For a Type-I was old and initially misdiagnosed as a Type-II as my pancreas hadn't completely failed yet. I have been using insulin pumps now for 10 years, in order to get that initial prescription they wanted to see I had already established an ability to control my Diabetes. In addition, I had to attend a 2 or 3-day training to understand exactly what the pump could and couldn't do, some of that was likely due to responsibility and liability. After all these years, a recent addition has become one of the most valuable, a Dexcom G4:
http://www.dexcom.com/dexcom-g4-platinum
The detailed reporting is simply awesome, as I can see exactly at what time(s) I am running high or low, get total numbers of each for a given period of time, etc. I've always subscribed to the idea that knowledge is power, the information I now have is great. I have faith that in Gordon's lifetime, likely sooner rather than later, he will have some form of artificial pancreas. I look forward to that day for him as well as all other Diabetics who require one.
Brad

Wow! Nearly the exact story of my journey.

#29 4 years ago
Quoted from coasterguy:

Wow! Nearly the exact story of my journey.

That is interesting, as it is rare that I meet any Type-I's diagnosed after 16.

Brad

#30 4 years ago

Not rare in my life at all. I know many. They thought I was a 2 as my pancreas also died slowly. C-peptide test tells the story.

#31 4 years ago
Quoted from coasterguy:

Not rare in my life at all. I know many. They thought I was a 2 as my pancreas also died slowly. C-peptide test tells the story.

I guess I tend to see more younger Diabetics where I go and have been, I know it was definitely an anomaly at the time I was diagnosed. My original diagnosis was discredited after I ended up in Hinsdale Hospital with Diabetic ketoacidosis and they told me I would learn to give myself shots before I could leave... And as others have noted, it definitely depends where you go and who you see in regards to evaluation as well as treatment.

Brad

#32 4 years ago
Quoted from Caviar:

Word of advice ,never deny them a food because of to many carb. tell them ( yes you can have it we just need to plan for it )

Agreed. The last thing you want is for them to sneak food and hide the fact that they ate it. They know you keep track of the pump data and the only way to prevent you from seeing large amounts of carbs and insulin dosages it is to simply not enter the carbs into the pump and therefore, not dose insulin for the food they sneak. Bad, bad situation.

#33 4 years ago

hmm, stay strong. I've been Type 1 since I was 12. I'm 35 now and am still going strong. There is a lot of great stuff now that was not available in 1992 when I was diagnosed. Lows are really the worst for me. I've been in a few auto accidents where I blacked out. I am very fortunate that I have not had that happen in over 10 years now. Endocrinology is changing rapidly with new insulin being developed and much better equipment with each passing year.

I have some critical advice. If you don't like the endocrinologist you have, find a different one. Look for one until you find one that can help you, not just "treat" the disease. I had three different ones in the last 15 years and you should be aware that some are a LOT better than others at what they do!

#34 4 years ago
Quoted from Bryan_Kelly:

My grandson Gordon was born on Christmas day two years ago. At 15 months old, he was diagnosed with type 1 diabetes. I will NEVER forget how helpless I felt when my wife and I arrived at the emergency room about 11:00 PM on a Sunday night to find my son Justin and his wife Chelsie, with little Gordon hooked up to an IV in each arm. I will also NEVER forget the helpless and confused look in Gordon's eyes as we came into the room. Funny how I can get a little teary eyed even now, when I think about it.
Today, Gordon is the love of our lives. He's such a great little kid and the way he deals with the daily diabetes rituals, amazes me. He gets tested 6 times a day, on average, and he's even gotten to the point where he tells us which finger or toe (well, he doesn't like toes anymore) he wants pricked. All of it is pretty painless, except for the insertion of his infusion set. Gordon's been on an insulin pump since he was about 18 months old ( what a God send that is) and it requires an infusion set, which involves the tubing from the pump which goes to a small adhesive disk with a needle attached, and that needle is inserted in his backside. THIS, he does not care for. Because of the adhesive and the way it reacts to his skin, it must be moved every couple of days. Some days he takes it like a champ, while other days, he needs to be held down while it's done.
Hopefully, someday doctors and researchers will find a simpler way. Maybe a cure? Maybe a bionic pancreas, which they're actually working on and would eliminate what diabetics now go through.
To help with funding the research, our family, including my 86 year old mother and 87 year old father, will be walking in the JDRF (Juvenile Diabetes Research Fund) One Walk on February 1 at The Mall of America to raise funds for research.
If you'd like to help Gordon and others like him, you can go to the following link and donate. It's my son's page and we're known as Team G!!
Thanks!!
https://www2.jdrf.org/site/Donation2;jsessionid=C092BE2DA9521B164D2F4C84679BF7E1.app333b?14306.donation=form1&idb=1240774834&df_id=14306&FR_ID=4785&PROXY_ID=9483673&PROXY_TYPE=20&s_src=boundlessfundraising&s_subsrc=bfDskFbPfMsg

I posted this in the Mortimer's Monthly Facebook Group so it can help get the word out locally. With two little kids at home right now, plus our daughter who died after she was born, stories like this really hit home. Best of luck with this!

#35 4 years ago
Quoted from Nevus:

He's precious! He must favor his mothers side of the family.

I heard that, asshole.

#36 4 years ago

Feel free to shoot me a pm for Rosalie's email, here brother almost died when he was diagnosed As a small baby. Her family got a lot of help from the junior diabetes orginazation as well as the university of mn. Sending money and good energy his way.

#37 4 years ago

If anyone out there on this forum has a giving heart its you bud, hope everyone helps out. Bryan....ya'll hang in there. I have quite a few patients at the pharmacy with little ones that have been diagnosed around Gordon's age. The management seems to get easier as they get older. Prayers going out to your family!

#38 4 years ago
Quoted from idtattoo:

Feel free to shoot me a pm for Rosalie's email, here brother almost died when he was diagnosed As a small baby. Her family got a lot of help from the junior diabetes orginazation as well as the university of mn. Sending money and good energy his way.

Can't thank you enough for the offer, Todd, but we're good. The kids are in good control of this and have fantastic family support. And that includes the son in law who insists on getting more tattoos. It also helps that my sister and Gordon's mom, Chelsie, are nurses.

For those who've PM'ed about personal financial help for Gordon and his family, thank you, but it's not necessary. This fund raiser is to raise money to help ALL people with this f'ing thing called diabetes.

#39 4 years ago
Quoted from ulmpharmd:

If anyone out there on this forum has a giving heart its you bud, hope everyone helps out. Bryan....ya'll hang in there. I have quite a few patients at the pharmacy with little ones that have been diagnosed around Gordon's age. The management seems to get easier as they get older. Prayers going out to your family!

Thanks, Aaron. I only wish my pharmacist was into pinball.

#40 4 years ago

Bryan, with a young son near the same age as he was when diagnosed and I am sure others might be curious as well, how was it found that he had diabetes, is there signs to look for or just routine checks that are done and happened to get lucky catching it? I have never had our pediatrician indicate there were tests for anything done through the first two years. Always being a concerned parent you hope nothing ever is wrong but you also worry maybe I am not doing something or seeing signs of something that might be a larger issue?

Hope all continues to go well and glad to help out a great cause.

#41 4 years ago
Quoted from bemmett:

Bryan, with a young son near the same age as he was when diagnosed and I am sure others might be curious as well, how was it found that he had diabetes, is there signs to look for or just routine checks that are done and happened to get lucky catching it? I have never had our pediatrician indicate there were tests for anything done through the first two years. Always being a concerned parent you hope nothing ever is wrong but you also worry maybe I am not doing something or seeing signs of something that might be a larger issue?
Hope all continues to go well and glad to help out a great cause.

If you Google diabetes symptoms, you'll find what they are and they are pretty much the same for type 1 or type 2. Type 1 normally happens to those younger while type 2 happens to those older.

With the lack of insulin production, glucose will be elevated. With increased glucose in a person's system, urine output will increase, which leads to dehydration, which leads to thirst and water consumption. There are others, but this is the main one.

In Gordon's case, we all feel pretty foolish for not seeing the signs, but we didn't know anything about diabetes and the symptoms. For about a week or so, when the kids would change Gordon's diaper, it would be soaked. Sometimes so bad his clothes would also be soaked. He also drank water like a fish. You could give him a sippy cup and he would literally drink the entire thing in no time. The last two nights, before going to the hospital, the kids would wake him in the middle of the night and change him, so it wouldn't be so bad in the morning. The morning he went to the hospital, he woke up and his breathing was rather shallow. That's when the kids knew something was wrong. By the time they figured out what it was, which didn't take long, his glucose levels were over 600. Normal is between 100 and 125 or so.

FWIW, my older brother is a type 2 diabetic and had the same symptoms as Gordon.

In laymen's terms, if you piss like a raise horse and drink water like a fish, you may want to have it checked out.

#42 4 years ago

I should also mention, type 1 diabetes isn't something that happens overnight, so don't expect to wake up one morning knowing something is terribly wrong. Basically, your pancreas produces beta cells which produce insulin. With type 1, the body attacks and kills the beta cells, but this happens over a period of a few months until all beta cells are gone. Because of this, symptoms show up, but they do so gradually.

Doctors do also have tests for diabetes, but I don't think they administer them unless there seems to be an issue.

#43 4 years ago

To keep this pinball related, Gordon's favorite pinball is by far, Fish Tales. It's the only one of the nine he likes to play when he comes to visit. The first pic is the one he plays but that one belongs to my buddy Brian. It's the one with the "revolutionary" cabinet that looks like a WOZ cabinet. He can't have that one.

But lucky for him, he's got a very special grandpa who bought one for him and plans on restoring it. Should be done about the time the kids find that new house this spring. Every kid should have his very own pinball in his bedroom.....and a special grandpa.

#44 4 years ago

Shit. Forgot the pics.

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#45 4 years ago

Best Grandpa EVER!

#46 4 years ago

BUMP for Gordon! And Bryan, let me apologize if it appeared that I had hijacked the thread earlier. I get excited when discussing Diabetes and like to provide information to others.

Brad

#47 4 years ago
Quoted from Bryan_Kelly:

Shit. Forgot the pics.

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Isn't it sacrilegious to have a pin in your game room on sliders and not pin footies?

#48 4 years ago

So sorry to hear Bryan. Prayers going out to Gordon and family. Sounds like he has a fantastic support team behind him. My son is just a bit younger than him, and I would be devastated to get that news. Donation made. Go team G!

Todd

#49 4 years ago

Bryan ... God bless Gordon, Justin, Chelsie, you and the whole crew !

Gordon's not lucky to have T1D but he sure is lucky to have a great family supporting him.

Prayers and positive vibes sent your way, and of course a donation to support TEAM G!!!

Mike Geib
West Chester, PA

#50 4 years ago
Quoted from jellikit:

BUMP for Gordon! And Bryan, let me apologize if it appeared that I had hijacked the thread earlier. I get excited when discussing Diabetes and like to provide information to others.
Brad

No worries at all, Brad. The more information, general or personal, the better.

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