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 Allie.....here 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


Thursday, November 4, 2010

The Day After

As always, the day after Allie's appointment with the doctor, I continually run everything through my head trying to see if we missed anything or if anything we discussed was extremely significant.  The day after the appointment, I spend hours on the computer researching all the things we discussed and the tests they would like to run on Allie.  I try to figure out how much extra radiation she will be receiving with the tests since Matt and I are very hesitant to expose her to more radiation since she's already had her fair share this past year.  After all she has been through, we don't want to increase her chances of cancer by exposing her to unnecessary radiation. 

I was able to bring Allie's stool sample in this morning and all I can say is STINKY!!!!  There is no doubt that her poop has been abnormal lately.  I'm happy that Dr. Brown trusted us and and felt it was a good thing to check it all out.  I of course looked up all the things they are checking her stool for and it's a wide range of things which is great.  From what I found, it looks like her stool results can even show if there are intestinal problems - amazing!  We all like tests that are non-invasive!!!

For the first time ever, the day after (our appointment), I am satisfied with how the appointment went.  I didn't feel rushed to fit Allie's 2 year medical information into a 10 minute time frame.  And the best thing is, Dr. Brown requested that our next appointment be scheduled into 2 slots so that he can take even more time with us to discuss Allie's issues.  Wouldn't it be amazing if he actually diagnoses Allie after we have been traveling to several locations far from home.  I know, I shouldn't get my hopes up but I can dream!

As for Allie, she is doing pretty well with her feedings.  She still doesn't like to wear the backpack but we are hoping that with time, she will get used to it.  Her oral intake is still very limited and she is only consuming approximately 50 calories a day.  Just another reminder that her feeding tube is saving her life.

It's hard to believe another Halloween has come and gone.  It was a blast and the girls enjoyed it so much this year.  I will end with a couple pictures - Chloe was a kitty (again this year) and Allie was the itsy bitsy spider. 

Chloe & Allie on front porch with their carved pumpkins
Chloe as a kitty cat (meowwwww)


Allie as the itsy bitsy spider


Us - Matt, Jodi, Chloe & Allie Berndt