Atlanta

I will catch everyone up on whats been going on the past year:

Evangeline has a rare metabolic disorder known as LCHAD. She cannot process long chain fatty acids. In short, she eats a very low fat diet and must eat every 3 hrs so that her blood sugar does not drop. The reason she must maintain a strict diet, is that #1, if she does eat the wrong kinds of fats, it will cause her to become really sick to her stomach, and the fat could eventually build up around her heart/eyes, since it has no where else to go(she can't process it to use as energy, like most of us.) #2 since she can't use her fat stores as energy, she eats every 3 hrs and uses the sugar from those feeds as energy.

Evangeline has been vomiting lately. So much so, that she lost 8 ounces this past week. When an LCHAD baby vomits, there is a tendency for the blood sugar to drop. If it drops, she can become hypoglycemic: lose muscle tone,lose alertness and, among many other symptoms, it can eventually lead to loss of brain cells.

Currently, we feed her every 3 hrs during the day, and have her on a continuous slow drip of formula via G-tube at night. Our fear, is that she will vomit during the night and inhale her own vomit(this is known as aspiration). So, a few weeks ago, when she began vomiting again, we placed a call to her current GI, and his recommendation was to place a GJ-Tube, where she would get continuous feeds throughout the day. 24 hrs a day, Evie would be hooked up to feeding pump. This would stop the vomiting, because her tube would not only be moved from her stomach to the lower intestines, but she would get a very slow drip all day. This would also keep her blood sugar high, as she would be "eating" constantly.

HOWEVER, while these things are good, there are some definite complications to this procedure: She would eat nothing by mouth, it would impede her mobility, and it would hinder us from being able to take her out, anywhere.

In short, I am not ready to make this big of a decision.

So, after I learned what her GI wanted to do, we decided to make some calls to hospitals, clinics, etc. to find the best solution for her. We called Children's Houston, Children's Little Rock, Baylor, and finally, Children's Center for Digestive Health Care located in Atlanta, GA. Of all these places, only the CCDH would answer our questions.

Before making those phone calls, I asked God to show me a clear path. Not having any of my questions answered by the others, CCDH was the clear choice. One that God had chosen for us.

We are very blessed to have been able to find, through a good friend, that there are 2 Ronald McDonald houses in Atlanta. Praise God that they have the space for us, at the one closest to the CCDH. WE are also very blessed to have found out about Angel Flights and Pilots for Patients. They, if weather permits, are flying us to Atlanta, at no charge to us. I am so very thankful to the men and women who run these organizations. Without them, we would be stuck driving a very long drive, with a 1 year old who has special needs. This has all be orchestrated by God,and I want to give him all the glory! Everything seemed to fall into place.

I hope that we get the answers here that we need. Patrick and I have been fighting for Evie for a very long time, and are ready to see a Dr is willing to do the same.IF we don't find them here, I have full confidence that God will guide our steps in the right direction.

Thank you all for reading. I hope to update again tomorrow, in celebration of making it ONE WHOLE YEAR!!