Wednesday, May 6, 2009

A call from Lillies allergy doctor !

Lillie's allergy doctor called to let me know that the blood work results that were taken 3 weeks ago showed that Lillie is still allergic to all 14 of the same foods that came up positive when she was 13 months old!Lillie's doctor also looked at the test results from when she got the upper GI biopsy(took tissue from her esophagus)to see if her eosinophils have went down from her Eosinophilic esophagitis and it showed that nothing has changed from the first time she was tested for the EE her eosinophils have not gone down and are the same as they were when she was 12 months.Lillie's doctor said that if her EE is not treated with medicine then she will start developing scar tissue in her esaphagus which is not good for Lillie.So the doctor put her on a steroid medicine along with prevacid for her acid reflux.
I'am confused because the doctor said that the EE we have to treat separate from her food allergies!I always thought they went together!I will have to look up on both the food allergies and the EE a bit more so I can understand.I guess everyone I have talk to said that doctors don't know much about it because they are still learning about it because its new?

So for Lillie this means She still can not have milk or soy which I was hoping she would have lost one of the allergy for one of the milks so we can take her off the pregestimil formula and take her G-tube out!If you remember I was telling you that our insurance will not cover Lillie's formula if the G-tube comes out and so we cant take her tube out as of now!The doctor said it will not hurt her to keep it in. So we just have to trust in Gods plan for Lillie and if that is to be still where he has her then we will be joyful in happy in knowing we trust Gods plan.Although I never have a clear answer!At least that's what it seems alot of the time!I sometimes wounder if Gods going to make it all clear one day here on earth?I do know if I don't have a clear answer here on earth I will get a clear answer when I get to heaven :)lol :)

I do look back at Lillie's journey and all the hospital stays and all the test they took and how small she was and although we didn't get many answers to why Lillie was not growing and even though we still have no answers!I thank God for allowing her to come off the night feeds I thank God she has grown and that she looks a little chunky!I thank God that her speech and walking have improved and she is able to communicate with me and everyone around her!Even though we don't have a exact diagnoses God has shown himself to be great all the time no matter what we are going through.Its like the post before this one!you may not see the good and the outcome of what the Lord is doing when you are in the middle of a trial but its amazing when you can see it a little and how thankful you become to the Lord.

This picture is of Lillie's back at the doctors after she was tested for allergy to foods! Some were mod. and some were high.

Corn, peanut, chicken, lamb, turkey, beef, milk, soy, oat , rice ,sunflower, egg, wheat, sesame


The Pichura Family said...

Wow, Crystal!!!!! I am sorry that she still has the same allergies but thank you for your testimony with your upbeat, Godward focus...and, I guess at least you know what path you are supposed to be on with Lillie...the same one you are already on!!!
Love you!!!
Is the EE ever somthing she will outgrow?

For His Glory said...

Happy Mother's Day to a mommy I truly admire:) YOu are such a testimony of God's grace through trial dear sister. I pray that Lillie's situation will continue to keep you ever so dependant upon Christ!