Thursday, May 7, 2009

What is Eosinophilic Esophagitis?



I had found this information on EE and wanted to share it with you so that you can maybe understand what Lillie has a bit when I talk about it!Its crazy because when I was reading it I was thinking WOW!!they should just have put Lillies name at the top of the article!Lillie is allergic to all of the foods they listed and she is on the meds for acid reflux and the Flovent for the(EE).All the test they mention have been done on her as well ext.I actually was excited because reading this article answered a few of the questions I had in my mind.

What is Eosinophilic Esophagitis (EE)?Eosinophilic esophagitis (EE) is a disease characterized by swelling of the esophagus (the part of the body connecting the throat and the stomach) caused by an allergic white blood cell, the eosinophil. Symptoms of EE can range from severe heartburn, difficulty swallowing, food impaction in the esophagus, nausea, vomiting and weight loss. There appears to be some age-related differences in symptoms, with younger children having more symptoms of weight loss, and older children and adults having food impaction and difficulty swallowing.
It is not exactly clear what causes EE, although this disease may be related to other allergic diseases, particularly asthma. People with EE frequently have a personal or family history of other allergic diseases such as hay fever, food allergy and asthma. Recently, there have been studies showing an association between food and environmental allergies and EE.
What Allergic Triggers Commonly Cause EE?Various studies have shown that patients with EE have positive allergy tests to various foods, and that avoidance of these foods led to the resolution of EE symptoms. Foods reported to be the cause of EE have included milk, eggs, peanuts, shellfish, peas, beef, chicken, fish, rye, corn, soy, potatoes, oats, tomatoes and wheat. Of these, the most common food triggers are milk, egg, wheat, rye and beef.
Environmental allergens, such as pollens, molds, cat, dog and dust mite allergens may also be involved in the development of EE.
How is EE Diagnosed?The diagnosis of EE is generally made by performing a biopsy of the esophagus, with evidence of eosinophils infiltrating the esophageal tissue. A biopsy is performed via endoscopy (a camera inserted into the esophagus), usually by a gastroenterologist. There are many other diseases that can cause eosinophils in the tissue of the esophagus, including gastroesopheal reflux disease (GERD), parasitic infections, fungal infections, inflammatory bowel disease, certain cancers, recurrent vomiting, and others. These diseases need to be ruled out before EE can be diagnosed.
Once EE is diagnosed, an allergist will typically perform extensive allergy testing, including looking for food allergies and environmental allergies, such as those listed above.
How is EE Treated?A trial of avoidance of the foods to which the person has positive allergy tests is the initial form of treatment for EE. If a person has numerous positive allergy tests, however, it may be important to change to a diet consisting only of an elemental formula (proteins broken down into the most basic building blocks, called amino acids).
Corticosteroids are frequently used to treat EE when avoidance of allergic triggers unsuccessfully relieves symptoms. Steroids may be used as pills, such as prednisone, or as a topical therapy, such as using inhaled steroids (Flovent, for example) typically used for asthma, except that the medication is swallowed, not inhaled. This results in the delivery of the medication directly to the esophagus. Typically, medications for GERD are also given to patients with EE.

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

Saturday, May 2, 2009

Surgery !!

I wanted to say I love you all and I know that alot of us have been going through some trials and God had put it on my heart to encourage you with something a mother had written after her daughter had died 2 days prior to her writting what she had wrote!It was given to me when I was in the hospital with Lillie!So I wanted to share it back to encourage any of you who need to be encouraged!
P.S= Sorry dad its not the greatest picture but since your heart surgery The Lord has Changed my heart in a way that Iam thankful to God for!Its amazing how God does use what we may think or feel is not Good for us to change our hearts in way that only can be done by Him!I praise him for all he has done in my life and those around me through trials!

Thoughts from mom,

My dear sweet Destiny died 2 days ago.It's amazing how much you could love someone who did so little so much.I marveled in anything that she could do.We were excited every time she went "poopoo'' on her own or turned her eyes to look at something. Her body was perfect. I marveled at her little toes and fingers and beautiful hair.She was mine,especially designed by God for me for a time such as this, and I loved her.
Destiny was a lot of work.She required medicine to make each part of her work-A medicine to sleep-A medicine not to seize- a medicine to move her bowels, A medicine to help keep food in her stomach....I cried many nights since she was born-saddened by what her future held and fearful of when her last day would come.The doctors and hospital visits were getting exhausting. I felt like I was in the 3rd watch (as it says in the bible).I was weary-yet at the same time, I was confident that the Lord would not give me more then I could handle.

I would have never chosen this trial or any trial at that matter. The pain of losing a child is at times unbearable.Yet, by Gods grace, I was able to press into God and try to see what purpose He had in bringing Destiny into my life-because I have no doubt that God doesn't allow anything without a specific purpose. He had everything calculated down to the minutest detail including the perfect number of her days to accomplish the purpose that He had in mind for us. He knew the exact amount of pain and emotional energy that I could handle to keep me pressing into Him-that it wouldn't be to much that I would grow weary or bitter.I always knew and still continue to rest on the fact that He is good all the time and not only is He -but all things that He allows into our lives are for our good.We can't always see how a circumstance like this could be good-yet our confidence is not in how we feel or how we see things-but in who God is.

We often think that all pain is bad and that it's our goal to avoid it at all costs.It all hurts right now in an emotional way as a surgery to remove a large cancerous tumor would hurt physically.If we didn't know what we were being saved from, surgery would feel like trouble upon trouble...the incision,the bills,the recovery process... yet, what benefit the surgery would be: it would keep one from death;it would remove future pain;it would allow one to live life to the fullest. What's going on in our lives at this time could be God's way of doing surgery on our souls- we just can't see what the pain is sparing us from or preparing us to do or how it will be used for the future. It's all a matter of faith in a God who is faithful. A God who doesn't allow pain for sake of pain- but has a plan even for the pain that seems unnecssary.We just can't see the work that He is inevitably doing beneath the surface. He's allowing circumstances that if we could see the outcome of his plan-we would say, "Cut deeper." May we not miss what he intends!

I pray that what ever you may be going through this week,that you will be encouraged in knowing you can trust God with your life and what it holds!!

Monday, April 27, 2009

A Update On Addison,Anthony And Lillie !!


Hi everyone I have Had a lot of people ask how Addison and Lillie are doing so I thought I would just give a quick update!Addison and Anthony have been doing good with the Asthma department!For those of you who do not know both Anthony and Addison have both had asthma attacks!Anthony had one last year in May and Addison this year in April (must I remind you we never knew theses children had asthma until they had these attacks and they were put in the hospital for 3 days each.! We are so thankful to the Lord for our new pediatrician Dr. Garcia who has put both of them on a action plan before allergy season came (well for Anthony and now Addison is on one as well)they still have been having allergies but We have 3 meds we give them each day to keep there Asthma and allergies under control.
Lillie on the other hand has been diagnosed with eczema along with the other diagnoses given to her!we thank God because Addison has had eczema since birth and still has it at age 5 1/2! SO basically we know how to treat it!it is tuff to control though!We have a good feeling this is from Lillie's eosiniphilic esophagus (allergies to food & enviorment ) we have no idea why the eczema decided to show up out of now where!we are wondering if she has NEW allergies to foods along with the others!hmm.........The Lord knows:)So we are waiting on Lillie's test results to come back from the allergist.The results will let us know all these questions to what she is allergic to and will let us know if her feeding tube can be removed from her tummy and also if we can take her off the formula she is still on and give her regular milk!So until then we will WAIT ON THE LORD!!to reveal what is going on with this little mystery child:)

Saturday, April 25, 2009

Addisons 1st lost tooth !!

Addison lost her first tooth today!O boy was she excited in fact she pulled it out her self! We went to show auntie,papa and Nana!In fact we lost her tooth it flew out of the car when we went to show Auntie! so we had to call to ask her to look for it in the baggy and sure enough the little tooth had got thrown into the trash by Kory's brother who was cleaning out his truck in front of the house!!So this little tooth has been on a journey as well :) in fact I don't know if I was more excited about this lost tooth or what but its so much fun to see my children grow in each new stage of there growing!God sure does have a way of blessing my heart ! I know it sounds silly to be blessed my a lost tooth but to me it is so much fun to watch her grow up. Both Addison and Anthony will be starting kindergarten next year!Its so amazing to see them Grow so fast and I just thank God for there little lives!!all 3 of them!God is good. I thought I would share her little video of pulling her tooth out!Anthony was not to sure about it!

Sunday, April 19, 2009

Spring Fun With Friends!!


So our family was invited to go boating after church and how could we say no to that much fun! so we packed a cooler and some snacks,slapped on Sun screen and we were off to the river for some fun with friends! We went tubing,boarding, and swimming and played in the sand!we were blessed and were very thankful for inviting us to have fun with there family.














Addison on the tube for the very first time with daddy and she kept saying "Faster"
We stopped to see this seal who was sun bathin! he was cute!

Lillie and Daddy!

Addison and Anthony havin fun on the boards


Wednesday, April 15, 2009

MY BEST FRIENDS !!


I Just wanted to say I love you both!I thank God for giving me such a blessing as you two! I cant say thank you enough for all the encouragement and love you have Gaven me!All the little things you do that tickle my heart and bring the greatest joy to my heart to know that Iam loved by you!To know that my burdens are not carried alone but are carried by others in the little things with a helping hand of cleaning my house with me,or watching one of my children so that I take my other children to the doctors!or just listening to me and understanding !I love you guys and God couldn't have picked out better best friends for me:)I do believe that he knows me all to well!!(maybe cause he created me)thank you! citha and Winnie:)