We just got our Zevex Enteralite Infinity (http://www.zevex.com/therapeutics/pumps/infinity.cfm), and so far I love it. Lunch went great, though I definitely need to check out the manual again, and it came with a tiny backpack so D can carry it around easily. I posted pictures of him with it at http://gerdlingmoms.org/becky_blog/index.php.)

That is awesome...it's so tiny! :D

He looks so cute with his backpack on....I bet it will help with mealtimes, (making them shorter), and make him not feel so "tied down" during feeds. Can he play/move around while the pump is going?

Sorry...just curious. :oops:

Yes, we are definitely hoping he'll be happier with this new pump since it's faster and allows him to be more mobile. D isn't actually wearing the backpack (even though he wore an adult-sized one the other day with keys, a wallet, a cellphone, and a liter of water in it :shock: ) but I'm hoping he'll get used to it. Probably we'll still do meals as usual -- starting the pump (attached to the IV pole) while D sits in his booster, then, when he's "all done," moving the whole works into the living room to watch Sesame Street. But hopefully he'll be able to sit and "eat" long enough so that he'll really be done when he's finished at the table.

How cute, Becky! Daniel looks like he's ready to head off to school with his little backpack!

So sad that he needs to carry it around, but boy does he look adorable and all grown up!! I'm glad you like the pump, hopefully it will make your life a lot easier!

Glad to hear that the new pump is working out well.


Melanie

Is he able to carry it himself? He doesn't find it too heavy? Shae still can't really carry hers very far. It's still a little too heavy for her so everyone around her usually helps out. I tried a backpack and the first time she fell backwards it was so heavy, now she can stand up but gets tired fast and can't stand walking around for very long with it on her back. Are you using 500ml bags? I'd love to know what this thing weighs with the food bag full in the backpack. It doesn't really look much smaller than the enteralite but he doesn't seem to be having any trouble carrying it so it must be? Shae's has to weigh several pounds, and considering she is still just barely 30 pounds, that's a lot for her to lug around all day (or well, us I should say...LOL).

Congrats on the new pump by the way!! Can you tell I'm just as excited about it as you are, with my 20 questions!?! :lol: :lol: :lol: :lol:

Actually, D was carrying an empty backpack in the picture. But, let's see.... the pump is 14.4 ounces, the 500ml bag hardly weighs anything, but for rounding purposes, let's say the bag and pump together are one pound. Then I add six ounces of formula = 22 ounces, plus the weight of the backpack, so, at most, 28 ounces or so? I still haven't gotten him to wear the backpack properly, so I think that'll take some getting used to. But he's really strong. He picked up a bowling ball once. I've got to teach him to lift with his legs so he doesn't throw out his back! :lol:

But he's really strong. He picked up a bowling ball once. I've got to teach him to lift with his legs so he doesn't throw out his back! :lol:

:shock: Wow, I guess so!

very cool! hope he can get the hang of carrying it in the backpack.

Just wanted to let you all know that Daniel wore his backpack (with the pump, bag, and formula) while we were at a party last night. Now I know how he'll look on his first day of school! :cry:

Ah - Becky - he is adorable with his little backpack!! It is just his size. Glad to hear that it is working better for you!

Only a mom on this site could understand!

Glad you are happy with the pump.

Only a mom on this site could understand!

So true, Jean! Who else would think medical equipment was cute or be so proud of their child for using it successfully? Did I mention that D attached his own decompression tube the other day? Of course, he forgot to clamp it (silly boy), so we had a bit of a mess.

Oh Becky...He's so cute with that little back pack! I'm glad to hear that the new pump is working so well for you...even if D forgot to clamp it. :wink:

When Shae-Lynne's beeps she goes over to hit the buttons! Pretty smart, huh!

I remember when she was visiting and we play 'hide-'n-seek' she would go in the closet to hide and leave the tube, bag, battery and pump sticking out of the door. So cute and then I would have to pretend I COULD NOT find her! LOL

LOL Jean! Kids can be so funny. :lol:

Becky,
I'm glad to hear the pump is working out so well! :D

When Shae-Lynne's beeps she goes over to hit the buttons! Pretty smart, huh!

I remember when she was visiting and we play 'hide-'n-seek' she would go in the closet to hide and leave the tube, bag, battery and pump sticking out of the door. So cute and then I would have to pretend I COULD NOT find her! LOL

VERY smart and so cute!

Oh Becky, I got all choked up reading your notes in this thread...we've got an enteralite pump too though it looks bigger than yours. Right now we have to follow Max around with it when he's feeding. He can really motor with his little bunny/frog hop. We're hoping when he's walking things will be easier if he can carry the backpack himself.

But I got choked up with your comment re: starting school...you know I think we always want to be positive and think things will settle or Max will soon stop puking or he'll start eating but we have to be realistic too..part of the reflux rollercoaster I guess. I remember when we finally brought Max home from the hospital when he was 7 weeks old with the NG and we thought, Oh just give him a few weeks in the calm environment at home (as opposed to the chaotic special care nursery) and he'll start feeding in no time...it didn't pan out like that though. Now we have to get our heads around the idea that he may likely be starting school and still have the tube feeds....which just seemed so crazy at first...do you know what I mean?

Anyway, I'm so glad you got the new pump. After we got the Gtube last Dec, we had a kangaroo style for a few weeks - it was supposed to be portable but it was HUGE and HEAVY...not really portable. We were just over the moon when we got our enteralite pump. Especially when we were feeding Max bolus-ly (is that a word?) and he could only tolerate a feed if we held him over our shoulder and walked around bouncing him...

Love the backpack yours comes with, ours is a really boring all black one!

Vicky.
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I know what you mean, Vicky! We managed to bottle feed Daniel when we brought him home from the hospital in January, but it was with great difficulty. And rather than getting easier, it only got harder. We struggled all spring and summer, but I thought he would do well after his cleft palate surgery in September -- when he would finally be able to create a suction. D's first birthday was one month away, and I really thought he'd eat a little birthday cake. Well, now he's refused to eat his second birthday cake as well, though he did touch the icing this year, and my optimistic goal is having him eat by the time he is in preschool. Can we really do it in the next two years, or will it take longer? I really don't know. One of our NICU nurses (and, as it turned out neighbor, so now she's a close friend) told me that one of her G tube babies called the other day to tell her that her button was removed. She is six. It is possible. We WILL get there, too.

Shae started school with hers in September, and she's on continuous feeds all day long so if she can do it, they can too. :) She is doing great, is having no problems with the pump etc in school and neither are the other kids. They even carry it for her!!! Every week they pick a child to be star of the week and all the kids in the class say things to describe the child that was picked. I was expecting them to say something about Shae's tube and barfing when it was her turn but nothing. They mentioned her glasses but nothing else, they don't notice or question it. Kids are so great sometimes. Hopefully your kids will have similar, positive experiences with school when they start. Although, hopefully they won't be tube fed by then :wink: .

This whole thread has had me in tears..... :cry:
You ladies are so strong, optimistic and true advocates for your kids.... there is absolutely no doubt that you were hand picked to raise these wonderfully special children!!
Becky, Daniel looks great with his backpack! I'm amazed at how great the technology is that it can be so small and portable.
You know Roni.. you're right.. kids can be cruel but they can also be absolutle gems!