A couple weeks ago, Allie finally received her new pump and her new backpack. Back in December 2009, when Allie got her feeding tube, we were sent home from the Children's Hospital with the Kangaroo Joey feeding pump. We never really had any problems with the pump besides the endless beeping during the night indicating a clogged line or no flow. Of course we also fed the bed instead of Allie many nights because the tube connections became dislocated and the pump didn't sense a different flow. But in general, the pump served us well.....until the day came when Allie needed to start getting continuous feeds during the day instead of bolus feeds. This change in her feeding schedule meant that Allie would have to start carrying her pump in a backpack. Now that Allie is 2 1/2, we figured she could do this no problem. Not quite, the Kangaroo Joey pump was just too heavy for our little Allie. In talking with another tubie mom, she told me about the Enteralite Infinity Enteral feeding pump. I called our medical supplier right away and asked if we could get it. From there, it was a whirlwind of phone calls to Apria and our insurance to get Allie approved for the new pump and a new backpack to accompany it. You can see one of my previous posts to get the whole story on that.
Anyway, a couple weeks ago, Allie received her new pump and backpack. She now has the Enteralite Infinity pump and the red and white super mini backpack. It's the perfect size for her and she can carry it around with no problems. Of course she hates it and screams, "no backpack" every time we have to hook her up. Her anxiety about being fed is continually getting worse and every day it's more and more difficult to feed her. I'm in the process of trying to get professional (in-home) help to give me some tips and tricks to ease her anxiety about it. I'm scared that before long she's not going to not let me feed her - that's a whole other post one day.
So today, I would like to show off Allie's new pump and backpack. If you have a toddler that is required to carry a pump and backpack throughout the day, I highly recommend this. My biggest gripe about the pump is that there is no auto prime button - you have to hold down the prime key the whole time. However, a big advantage is the pump runs much quieter than the Joey and it's easier to load the feeding bags. This pump works great for Allie and the backpack is adorable. Here are a couple pictures.
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| Allie saying goodbye to her Kangaroo Joey pump (you would think she would be happier - lol) |
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| Look mom, I'm wearing my new pump & backpack |
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| I think I can rock this light weight pump and super styling backpack |
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| Mom - check it out, it's the perfect size for me. |
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| The backpack has a nice little zipper part which allows you to access the pump easily |
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| Chloe & Allie chilling while watching a movie |
Dang she's cute!!!!
ReplyDeleteSteph
Very cute, I am glad you were able to find a better option for Allie.
ReplyDeleteKylie has the same outfit and we just found a matching outfit for a baby doll at Target. We have never used another pump but we love the infinity pump. Also a faster way to prime is to squeeze the bag while pushing on the green part of the tube (the part that hooks into the pump) with the tear drop on it. Good luck with the new pump, we always tell Kylie that she is like Dora when she doesn't want to wear it.
ReplyDeleteI am so happy you got the Infinity! We love it, and I have some tips for you! I am going to email you sometime today pics of how we use it and how we protect the tube. I hope you don't mind? No one gave us any tips and after 20 months we finally have worked out the best way to make the backpack last and to protect Mason's tube from getting caught on something or pulled out. Congrats! I am so happy she gets to wonder around. Have you been to Genetics? Does Allie have behaviour issues?Ok, lots of questions..LOL
ReplyDeleteEmail soon!
Dana
Dana - that would be great, I cannot wait to get your email with the information. We were very used to the Joey pump so starting over with the Infinity is something new to us. I welcome all tips or ideas - thanks so much!
ReplyDeleteYour questions about Allie - yes she has been to Genetics and they have run a lot of tests and everything so far has come up normal. She had the micro-array genetic test looking for additional or missing links in her DNA - this test was done about 8 months ago. Behavior issues - she is at the top of the charts for that. I have a very hard time dealing with all of her behavior problems - she is stubborn and needs to be in control 24/7. Her therapist said she most likely has post traumatic stress from all of her medical procedures done (in hopes of finding a diagnosis) and that is compiling on top of her behavior. At first I didn't know if it was just the terrible two's but we have medical professionals telling us it's much more than that. I'm currently looking for a professional to come into the home to work with me on her behavior. I need someone here to actually see what she does and why she tantrums, etc. If you have any tips on behavior, send them my way!!!!
I will continue to pray for your sweet Mason. I know getting a diagnosis is sometimes hard but just think now you can get him all the help he needs. He seems like such a sweet little guy and such a trooper. I check your blog everyday to follow his progress. Keep up the great work - you are doing such a wonderful job for Mason!!
Heather - thanks for the tip on priming the bag. That's a great idea and it will be faster than the pump priming it. I also like the idea of telling Allie she's like Dora when wearing her backpack. That just might work for her - she's obsessed with Dora (even her bedroom is Dora). Also, I'll have to look for the matching doll outfit - Allie would love dressing her doll like her. Ahhhh....it's so nice when people leave tips on how to make life easier - thank you so much!
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