Friday, November 5, 2010

I have a voice and I made sure it was heard.....

For over a week I have been fighting with Apria Medical Supplies, our insurance company and the Children's Hospital to get Allie approved for a new small light weight feeding pump. Now that she has to carry around her pump in a backpack the majority of the day, I figure she has every right to be comfortable doing it. She currently has the Joey pump and that along with the bag full of milk and the backpack must weigh at least 3 pounds. Seriously, that is too much for my little Allie to carry around during the day. So, after a week of making phone calls to all parties involved and never getting answers or the approval, today was the day I let it all out and now they ALL know how I feel. I was polite about it but very much to the point. I am HAPPY to say that Allie will have her new EnteralLite Inifity Pump on Monday afternoon. Apria will be bringing it to the house so I can be trained on how to use it. It's frustrating to have to fight for something so hard when it shouldn't be difficult to get the necessary medical supplies when needed.

Here is Allie with her first backpack. This is what CHW and Apria expected her to wear during the day. Seriously???? The backpack is almost to the floor.....

Allie with her first backpack & pump
Here is Allie with the smaller size backpack that I had them ship to me overnight last week.  It fits much better and it works, but it's just too heavy for her little frame.  She is very unstable on her feet with it and she doesn't like to move around much because it's uncomfortable for her.

My cheese girl
Since she doesn't like to move around much, she spends a lot of time doing this.....

Chloe & Allie watching cartoons
Here is a picture of the back of her backpack.  The pump is what you see on the bottom - it's held inside a pouch in the backpack but you can access it from the clear window so you can set the rate of feeding, etc.

Allie backpack & pump
 Since I was voicing my opinion today and getting things accomplished, I figured I would make another request.  I was on-line researching the super mini backpacks for the new pump and I noticed they offer a colorful backpack instead of just plain black.  So, I requested the red & white one for is a picture of it.  Apria said they would special order it for Allie!!!
When Apria called to let me know that they would be delivering & training me on the new pump on Monday afternoon, I asked them about the super mini backpack.  He said they don't make a "super mini".  I told him that other tubie mom's have it and it should be available.  So, he looked on-line and realized they are available - this is when he also realized you can get the backpack in other colors.  I would like to thank Amy (another tubie mom) for informing me of the super mini backpack because if I hadn't spoke to you, I would have never known it existed.  So.....THANK YOU AMY for all the great information you shared with me!

Impossible is a word to be found only in the dictionary of fools. Unknown


  1. Jodi...

    This is GREAT news!!! We have to fight for these babies...good for you!!!!

    Stephanie Kelley

  2. Jodi, you continue to amaze me! Is there any wonder why God chose you and Matt to be the parents of this precious child?

  3. Hi, my name is Jess and I saw you over on the Sears Family site. My 9 month old is NG fed now and we are preparing for our button placement between now and Christmas some time. We have the EntraLite Infinity Pump and we LOVE it! We have the bigger size black backpack, but of course Madison is to little to carry it herself. When we are at home I just hang her food from an IV pole and she pulls it behind her as she rolls on the floor, or one of her 4 siblings helps her poll stay close to her. Madison has no self driven appetite. She was starving to death before they placed the NG tube 3 months ago.

    I will be praying that Allie overcomes her feeding issues soon. Feel free to hop over to our blog to "meet" us :o)


  4. Hi Jess - I just checked out your blog and what an amazing story - Madison is a very strong & determined little girl. I did leave you a comment on your latest post but please know that if you have any questions about the g-tube surgery and what to expect, etc. please let me know. I am more than happy to share our experience with it.
    Stay strong and know you are doing an amazing job!!
    Thanks for sharing your blog - We will have to keep in touch!
    Take care ~ Jodi

  5. Jodi, I emailed you through your blogger profile. I hope it is a current email address. I would love to stay in touch and I have tons of questions about what to expect...I will start making a list of my questions ;o)