Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

[kellyw8863]

She's got a Zevex! And a backpack! And a Mic-Key! I am going to have to show this to Aidan. He hasn't ever met another kid with a G-Tube. I mean, his doll has one, but not a real kid. Thanks for posting these!

We're so fortunate in that we have several friends whose children have g-tubes. It certainly helped when we were planning to have it placed. We love the Zevex. When Maya was little, she had an NG tube for a while and had the Kangaroo. It was marketed as portable, but there was no way she could have lugged that thing around. This we just throw in the backpack and Ali goes about her business. We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

It's truly a blessing and a curse. Some days I hate it, and I definitely hate changing out the button, but most days I love it. I love not having to fight over medications, and I love being able to give her what she needs when she needs it. How long has Aidan had his for?

 

[Thumper321]

We're so fortunate in that we have several friends whose children have g-tubes. It certainly helped when we were planning to have it placed. We love the Zevex. When Maya was little, she had an NG tube for a while and had the Kangaroo. It was marketed as portable, but there was no way she could have lugged that thing around. This we just throw in the backpack and Ali goes about her business. We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

It's truly a blessing and a curse. Some days I hate it, and I definitely hate changing out the button, but most days I love it. I love not having to fight over medications, and I love being able to give her what she needs when she needs it. How long has Aidan had his for?

We love our Zevex, too! Aidan had an NG tube to start also, and got his G-tube when he was a year old. He started with the Kangaroo, and it worked okay until he became more mobile. But when he started walking at two years, he couldn't carry the Kangaroo. That's when I insisted on the Zevex. The difference in weights is tremendous! When Aidan first started walking, he was 18 pounds. The Kangaroo weighed over 5 pounds, and the Zevex weighed less than 3 pounds with his formula. Of course, he takes more formula now, but it is still a manageable weight. And we love the backpack. He can flip, hang, and do normal kid stuff with it.

Aidan has learned to change out his own button now, and I think that makes it a lot easier. I mean, he doesn't inflate/deflate the balloon, but he pulls it out and puts the new one in. I think it gives him a little control over the situation, and that makes it easier on him, which in turn makes it easier on me.

I know what you mean about the love/hate relationship. It's so much easier than the NG tubes, and it makes getting Aidan what he needs a lot easier. But there are also times when I want to curse the darn thing. Like when the balloon bursts and it falls out or when the reflux valve quits working and formula goes everywhere, or when the med port accidentally gets opened in the middle of the night and I spend the whole day cleaning Aidan, the linens, and the mattress. Aidan will have had his for 5 years in June. I hope the day comes where he might not need it anymore, but I'm so glad that he has it now.

Going to look up the AMT now. . .

 

[Thumper321]

We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

Now that I look closer, is that the AMT in the pictures? I thought Mic-Key from first glance, but the Mic-Key doesn't have the green inside the balloon fill port.

 

[Wee Annie]

We're so fortunate in that we have several friends whose children have g-tubes. It certainly helped when we were planning to have it placed. We love the Zevex. When Maya was little, she had an NG tube for a while and had the Kangaroo. It was marketed as portable, but there was no way she could have lugged that thing around. This we just throw in the backpack and Ali goes about her business. We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

It's truly a blessing and a curse. Some days I hate it, and I definitely hate changing out the button, but most days I love it. I love not having to fight over medications, and I love being able to give her what she needs when she needs it. How long has Aidan had his for?

Wow. Definitely learning things from this discussion -- thanks!! Elke has a Mic-Key button, and we have used the Kangaroo pump -- really a pain to lug around!!!! I will have to look into the AMT Mini-one if it seems like her g-tube days will be prolonged. Right now, I'm just so thankful for the Mic-Key button! So much better than the NG tube!

Btw, thanks SO much for posting the pics of Ali and her button/tubing! I just called Elke to the computer to look at them, and Elke was absolutely enthralled! Wanted to see more! She has never met another child with a g-tube (most the ped. oncology patients don't end up needing them). So thanks -- it was truly nice for her to see. And now I'll be telling her that we can see Ali at GKTW too (we're arriving 4/17).

I've been quiet for a while on these boards, and will probably never be the most active, but am looking forward to planning those April days ahead of us, and seeing what all you have planned!

 

[Wee Annie]

Forgot to mention that I had the ubiquitous Dorothy Hamill haircut in 4th and 5th grades, which puts me in between you two re age....

 

[kellyw8863]

It is the AMT, and we love, love, love it. The anti-reflux valve is much more durable than the Mic-Key (at least in my opinion), and it has a significantly lower profile. The kits are better, too. They come complete with lube, a 10ml syringe, a 60ml syringe, gauze, two extensions, and an introducer that you insert into the button so that the "stem" doesn't keep flopping all over the place when you're trying to push it through the stoma. I also like the extensions better, though the AMT is completely compatible with the Mic-Key feed sets. I use the AMT extensions primarily when we run fluids at night because they have a "catch" on them so the med port doesn't pop open on accident. Otherwise, we just use the Mic-Key extensions.

My only complaint is that when we first change the button to a new one, it can be really tough to get the extensions to snap in. Sometimes it takes a little extra finagling, but it seems to loosen up after a week or so. I imagine it's this same tightness that means they don't "blow" as quickly as the Mic-Key. FWIW, Ali has never complained that it can be hard to push the extension in except for when my hands are cold, which is most of the time.

I'll see if I can find an old Mic-Key and take a picture of it side-by-side with the AMT.

 

[kellyw8863]

Ok, I'm known to be pretty good at math......................I've got a pretty good idea

And thanx for trying to make me feel good . While I'm not exactly sure how old I do 'look' I do know that I seem to defy many's expectation of the 'almost 50 year old' mother of young children. You know.............."those poor kids, being raised by such an 'old' woman, no fun, no energy, old enough to be their grandma etc. etc. etc........................."


btw. No age is one thing. No px???? Where are the px of Miss Ali's momma???? Huh? Huh? Huh?



Hey.....didn't you say you lived in Princeton???? We were going to go to Wachusett today but got up too late. Maybe next week. Do you guys ski?

I HATE pictures of myself. I am basically the antithesis of photogenic. Not to mention that I am one of those woman who holds on to every. single. calorie. (and then some) while breastfeeding in the rare event that the world experience some type of holocaust so that I could not eat for a week yet still continue to feed my child. So while I'm no longer breastfeeding (though I nursed Ali for almost 2 years - can't beat free hospital food for breastfeeding mothers), I am still hanging on to that damn baby weight (my fault). That's a really long way of me saying here's a picture, as terrible as it may be.

We live about 15 - 20 minutes northwest of Princeton, and no, we don't ski. Well, I should clarify that. I did at one time, as did my husband. Ali can't do cold and we just haven't gotten around to it with Maya. I do drink a mean hot toddy though while sitting by the fire!

 

[pipersmom]

Yanno...it would be easier to see ya if the piccie was bigger than 1x2!! LOL! So crafty you are If I can post pics of myself, anyone here can!

 

[erika412]

If I can post pics of myself, anyone here can!

I'll ditto that- about myself of course!

 

[kellyw8863]

Wow. Definitely learning things from this discussion -- thanks!! Elke has a Mic-Key button, and we have used the Kangaroo pump -- really a pain to lug around!!!! I will have to look into the AMT Mini-one if it seems like her g-tube days will be prolonged. Right now, I'm just so thankful for the Mic-Key button! So much better than the NG tube!

Btw, thanks SO much for posting the pics of Ali and her button/tubing! I just called Elke to the computer to look at them, and Elke was absolutely enthralled! Wanted to see more! She has never met another child with a g-tube (most the ped. oncology patients don't end up needing them). So thanks -- it was truly nice for her to see. And now I'll be telling her that we can see Ali at GKTW too (we're arriving 4/17).

I've been quiet for a while on these boards, and will probably never be the most active, but am looking forward to planning those April days ahead of us, and seeing what all you have planned!

I don't know how I missed your post! In a couple of weeks, or so, you'll see why I posted the tubing pics - I'm so excited! Maya had an NG tube for a while when she was an infant, but we never had to switch it out to a GT. Ali was the exact opposite - never had the NG and went right to the GT. Because of her difficulty with swallowing, we really didn't have a choice, and since mito is progressive, we know that it's a permanent thing for her. I am hopeful that we can meet up at GKTW - I think that would be neat! I know Ali would like to see another little one her age with the same hook-ups she has. She knows of older boys with them, but no little girls.

Yanno...it would be easier to see ya if the piccie was bigger than 1x2!! LOL! So crafty you are If I can post pics of myself, anyone here can!

I'll ditto that- about myself of course!

I know, I know. We were really rushed during the meet and greet, so even cropping/enlarging won't really help. It's just a bad picture. We are going to take advantage of the Photopass while we're there, though, and I'm determined to have some family pics. I've been doing South Beach in preparation, and while I will not be throwing on a two-piece, I'm hopeful that I won't at least be mortified having my pic taken (typed as the timer goes off for the peanut butter cookies in the oven - oops!).

 

[Momofwishkid]

Kelly I agree with the other girls if my picture can be on here anyone's can. I think the pic you posted is good though.

 

[kellyw8863]

Since some of you seem interested, I thought I'd post some side-by-side pics. The AMT Mini One is a 12fr 1.5cm and the Mic-Key is actually a 14fr 2.5cm (given to us by a friend to make a bear for Ali before her surgery). I left the pictures big so they'd be easier to see.

Sorry about the glare -

From the top -

And hooked up. Notice how flat it lies against her belly -

 

[MaryAz]

Joining in, sorry to be late! I am sorry that Gabe had a hard time with the rules. Sounds like he is happy where he is now. Congrats on being picked for the Big Give!!

 

[*Toadstool*]

following this thread now. I'm amazed by Ali's strength.

 

[Wee Annie]

Since some of you seem interested, I thought I'd post some side-by-side pics. The AMT Mini One is a 12fr 1.5cm and the Mic-Key is actually a 14fr 2.5cm (given to us by a friend to make a bear for Ali before her surgery). I left the pictures big so they'd be easier to see.

Sorry about the glare -

Yup, that one on the right looks like Elke's (hers is 14 fr 1.7 cm -- does that mean she's huge? She kinda is....)

Thanks for the tutorial -- seriously. We weren't given a choice -- just the Mic-Key. And since Elke's is hopefully shorter term, perhaps we may just stick with it. But it's nice to know there are other options out there.

As for your aversion to photos being taken, I suffer the same problem (as I mentioned on Ali's CB page). My husband gets upset with me because he says that, after I'm gone, my children will have nothing to remind them of what I looked like, it's that bad.

 

[yinyanggirls]

I admire you guys for dealing with this stuff all day, every day. (I know it's weird to say that because it's not like you choose to deal with it, you do what you have to, but still). I thought it was a pain to put Phoebe's AFOs on every day and to have to find shoes roomy enough to fit over them.

 

[pacrosby]

I HATE pictures of myself. I am basically the antithesis of photogenic. Not to mention that I am one of those woman who holds on to every. single. calorie. (and then some) while breastfeeding in the rare event that the world experience some type of holocaust so that I could not eat for a week yet still continue to feed my child. So while I'm no longer breastfeeding (though I nursed Ali for almost 2 years - can't beat free hospital food for breastfeeding mothers), I am still hanging on to that damn baby weight (my fault). That's a really long way of me saying here's a picture, as terrible as it may be.

I do understand your aversion to the camera as I don't find myself to be all that photogenic either. I 'run' when the camera comes out. But as far as your picture......................


I'm with Amanda..................how clever of you to include such a tiny picture for my middle aged eyes. I must say however, I do so like your red dress!!!!!!

 

[pipersmom]

I love it Pam!!!

 

[Thumper321]

Thanks for posting the pictures! The AMT Mini-One actually sounds like it might be better for Aidan. I'm going to talk to his ostomy nurse about it. But in the last several months, we've had anti-reflux valve failure on all but one, we've had 1 pulled out, we've had one balloon failure, and lots of middle of the night accidental med port openings. Heck, the "catch" for the med port probably would've been enough to convince me to talk to his nurse. Add the lower profile and better reflux valves, and I'm almost sold. AMT should have you on their payroll.

No, seriously, I didn't really see where we had options, other than the Bard Button, but it's a non-balloon and that scares me a little. I think the AMT Mini-One would probably work great for us.

I showed Aidan the pictures last night and he said, "Hey, she's getting a tubey snack!" We've always called his feeds tubey snacks since he was little. You know, instead of Scooby snacks. But he thought that was the coolest thing! Thanks for posting the pictures. I don't know what you've got up your sleeve that prompted the picture post, but thanks for posting them, whatever your reason.

 

[pnutallergymom]

Thanks for posting the pictures! The AMT Mini-One actually sounds like it might be better for Aidan. I'm going to talk to his ostomy nurse about it. But in the last several months, we've had anti-reflux valve failure on all but one, we've had 1 pulled out, we've had one balloon failure, and lots of middle of the night accidental med port openings. Heck, the "catch" for the med port probably would've been enough to convince me to talk to his nurse. Add the lower profile and better reflux valves, and I'm almost sold. AMT should have you on their payroll.

No, seriously, I didn't really see where we had options, other than the Bard Button, but it's a non-balloon and that scares me a little. I think the AMT Mini-One would probably work great for us.

I showed Aidan the pictures last night and he said, "Hey, she's getting a tubey snack!" We've always called his feeds tubey snacks since he was little. You know, instead of Scooby snacks. But he thought that was the coolest thing! Thanks for posting the pictures. I don't know what you've got up your sleeve that prompted the picture post, but thanks for posting them, whatever your reason.

I love that!! Tubey Snacks!! So cute!!!

I have to say, our kids are pretty amazing. Brigitte knows how to do her meds herself!!

Kelly, can you insert a 5cc syringe right into the "hole" on the AMT?? We tried the AMT at one point, but Brigge's stoma wouldn't co-operate. The stem seemed to be a bit thicker than the Mic-Key and we were literally trying to force the AMT in and got no where. It is a great little button though. Glad its working out so well for you!!