Tuesday, March 01, 2011

Think Heavy & Remembering the Beginning.

Ellie has been doing really well lately. She is eating like a horse and we have been able to keep better control over her bouts of overgrowth. From what we learned in the last Maximize Health webinar, protein is key for Ellie. Protein is digested in your Jejunum and the only small bowel that Ellie has is her Jejunum. So we have kicked it up a notch in the protein department. We have started offering, low fat ground turkey, low fat ground beef, poached chicken and some vegetarian options. Eggs apparently at a perfect protein and Ellie is loving her eggs right now. She has been very happy with our diet modifications.

So, we are keeping our fingers crossed that at our TPN clinic tomorrow we will hear good news. We always tell Ellie to think heavy thoughts before she steps on the scale at clinic. And tomorrow she better be thinking HEAVY. We are only on 3 nights of TPN and we want OFFFFFFFFFFFFFF!

Ellie has already come off of TPN once. When she was 2 and half years old she was off for 6 months. Then we did the reconnection surgery and now almost 2 years later we are hoping to get off again. Keep your fingers crossed for us!!

Getting this close to getting off of TPN has made us think about when we went on. I have also been talking to some parents that are right at the beginning of this roller coaster ride. I have forgotten how scary and uncertain things were after Ellie was born. William has been very easy and it has only pointed out to us how hard things really were. When Ellie was born there was very little information out there about Short Bowel, TPN or Omegaven. Many times we felt like we were flying blind. We did get hope when Ellie was a month old, a family that used to live in AZ send us a picture of their son that was short bowel. He looked fantastic. It made us realize that how things were now was not how they were going to end up.

Now there are many resources out there for parents and adults with short bowel. Over the next few weeks I am going to update the links we post on this blog to make sure that all the resources are listed. I also want to update our blog list. Most of the kidos listed are around Ellie's age, give or take a year. I would love to add some blogs/caringbridge sites for more kids and even some for adults. If you have any suggestions for resources or would like your blog added please either leave a comment on here or email me abbybrogan@hotmail.com.

The next topic for Maximize Health is fats in the short bowel diet and how to avoid fatty acid deficiency. This will be very important if we get off of TPN!!


Anonymous said...

YEAH! Go Ellie!!!!
it is so, so important for families starting on TPN to see positive outcomes (or something resembling it...)
you can include a link to Rafi's site: www.caringbridge.org/visit/rafael
thinking heavy, well-hydrated thoughts,
Jackie K and family

mini and brother said...

I feel like a celebrity!! Thanks for mentioning our little short gut guy. Ellie and your family have such a special place in my heart. You are sincerely wonder parents and a total blessing to the short gut community!
What do you think of arranged marriages?

Gib and Abby Brogan said...

Usually I am against arranged marriages but your little man (and his good pedigree) may make me change my mind.

Positive Impact said...

I have enjoyed reading your blog about your experiences with TPN. I work in a Home Health Staffing Agency in Georgia, where I send Nurse's out to help parents care for children that are medically fragile. Your blog has helped me understand parents fustrations with TPN.
I will pass your site information to them.
Thank You for sharing.