Tuesday, July 10, 2012

hail to the mighty waterfall and updates

This layout was created for Memorable Seasons using the wonderful Macho Nacho Soup collection from Jillibean Soup. I created it for the Member of the Month spotlight and used a card from the chosen member as my inspiration.


Ashlyn had a gastric emptying study done on Friday. The tech pushed triple the amount of formula she would have on an hour down her ng tube to fill her stomach, and then he pulled the tube which was challenging for her- we really thought she was going to bring it back up, but she really focued and managed to keep it down. *whew* She had to lie under this x-ray/CT scanner for over an hour, which was not easy for her but she did well. She watched 'The Lion King' and managed to make it through without falling apart.

The test did show that she has a slight delay with the amount of time it takes for her stomach to empty, but nothing that will require the need of medication. Thank goodness, because she takes 14 pills a day as is. She's just going to have to live with it and eat less more often. Which is pretty much what we have been doing by running her tube feeds 24/7.
She's going to have a few more tests done this Summer to see why she cannot grow without tube feeding as well as if it is the Crohns that is causing her body to not absorb nutrients from food. We are really hoping to start re-feeding her again, which is a HUGE process. People think that it is as easy as just giving her food, but it is so much more involved. She's allergic to peanuts/nuts, peas, and white beans (there are a lot of products that are made on a line that uses nuts, so we have to read lables religously). Then there's the whole avoiding milk because she is lactose intolerant, and cannot even handle traces of milk product in her food. Oh, then there is the fact that she needs to eat a low-residue diet which is quite strict. We have to count calories meticulously and log everything she eats/drinks, and will still have to continue to suppliment the majority of her calories via tube feeds. This will take months... and we have to make sure she doesn't gain or drop weight too quickly because that is deadly for her as well. We've done it before and I can't even count the number of times I have left the grocery store in tears because it is all so overwhelming to me. I tell you, if I could have someone just to prepare her meals for me I would be in heaven! That would be a huge blessing. But that is not going to happen (can you imagine the cost??!!)

And wouldn't you know it, our refrigerator decided to die. Seriously? Had it happened in the cool of winter I would not have been so stressed, but it just had to do it when we have had nothing but high 90's. The food I had to throw away- yikes! It makes me sick. Thankfully I found one today that was super cheap and will be delivered tomorrow. It's the barest of the barest bone models, but it is so not a good time for this to happen and it is just going to have to do for now. I cannot beleive the prices on some of the models out there! They sure were pretty though....

Thanks for stopping by! :) Many blessings to you.

1 comment:

  1. Thanks so much for welcoming me to the SWAT team, I came by to check out your pages (which are so beautiful, love how you mix colours and patterns so effectively!) and found this story. I cannot imagine the journey you are on with this, I have tried some minor changes with my kids but nothing like what you have to deal with. Sending you positive thoughts and wishing you strength for the future.


I thank you so much for your kind comments! :) Have a beautiful day.