Tuesday, April 26, 2011

Exciting Day...

I woke up this morning to Nathan standing in his crib staring at me with a long yellow NG tube hanging down from his cheek to his belly.... it finally happened, Nathan pulled his feeding tube out. Luckily, we already had an 11:30am follow up appointment with Dr. Williams today, Nathan's GI doctor. Dr. Williams was so pleased with Nathan's weight gain (he's up to 23lbs!)that he felt we could leave the tube out and re-assess his weight in 4 weeks to see whether or not he would need the NG tube again. We are praying for good news when we go back! Also, Dr. Williams said that when we see him in 4 weeks, he wants to go ahead and schedule Nathan's next endoscopy and biopsy for early June. Now that I know that, I am scared at the thought of Nathan being under anesthesia again but anxious to learn what his little esophagus looks like since we have been treating his EE.

Today was somewhat discouraging as Nathan only had 23 ounces of his EleCare and one jar of pears. So tonight I am wishing he still had it in so that we could give him 9 more ounces. As much as Mark and I hated him having a feeding tube, it gave us peace of mind on days like today, knowing that no matter how little he took on his own, we had the ability to give him the rest while he slept. It's hard going to sleep at night knowing your child hasn't eaten enough food/calories for the day and there is no way to get them in them. I hate obsessing over each and every little drop of EleCare. I look forward to the day that I don't feel like I have to do that anymore.

Tomorrow we have an appointment with Dr. Irani, Nathan's allergist. We will finally be able to get his allergy testing done! I am anxious to see the results even though I know it's not going to unlock many answers in helping treat Nathan's EE. It will be able to tell us definite things to stay away from, but it wont really help with what to try next. From what I've researched it sometimes comes back with no positive allergies, and you are right back to square one. As the allergies related to EE tend to be delayed over day, weeks, or months, and the test checks for immediate reactions. Food trails seem to be the best bet when finding foods that are safe for EE sufferers, yet they are time consuming and frustrating when something turns up to be an allergy. We are praying for patience as we continue with the food trials.

Here is our sweet boy and his sweet cheeks free from his feeding tube:

I was so happy to see his entire sweet face today, that I decided to do a random photshoot at the lake near our house with him.

Here are a few of my favorites:


  1. He is ridiculously cute! Oh, my!! Have you thought of getting him patch tested? We've had good results with the patch test. Food trials stink. The other option that we've had really good luck with is a rotation diet. Big yahoo! for the weight gain!!

  2. Thanks!! It's crossed my mind, but our allergist talks about how un-standarized it is, and doesn't believe it it right now... she is involved in all sorts of research about EE, and I have faith in her reasoning right now, but I may push for it at some point. I am willing to try just about anything to help Nathan out! Haven't heard about the rotation diet, can you explain?

  3. I've heard the same thing about the patch testing. It's really frustrating that the doctors won't set up some sort of standardization! A rotation diet is a menu based on the food families. You only eat one food from a family every three or four days. So he would eat millet(grain) on Day 1 but not again until Day 4. He can eat first cousins(foods from the same family but not the same food) on Day 3. Day 1 he eats millet(grain) on Day 3, he eats rice(grain). The Allergy Self-Help Cookbook has a great explanation of rotation diets. The theory is that by rotating the foods you don't allow their immune systems to develop their attack response to the foods. Thus allowing their systems to heal, and ultimately stop reacting at all. We switched to this diet because L started developing allergies to anything he ate regularly. It worked wonders. We did a 3 day rotation mainly because I was exhausted and overwhelmed at the time. There's a label on my blog outlining some menus. Let me know if you want some help designing one for Nathan.