I think we're onto something =] . . .

God has truly answered my prayers and given me insight into what has not only been causing my children’s health problems but my own as well! 29 years into my life, I now believe that I am allergic to gluten. Gluten is a protein found in wheat, barley, some oats, and rye.

Now that I am aware of this allergy (also called Celiac Disease), it is as though a giant light bulb has been turned on. In retrospect, it all makes perfect sense.

I am going through a gamete of emotions and questions as I take it all in. Why did my childhood pediatrician and all the other doctors I've had to visit as a result of all my symptoms/health concerns not realize this??? Why was this not the first test that they had given Naomi when we learned that she was not growing like she should??? (Poor baby had to go through countless blood tests, sweat tests, upper and lower GIs) Why did our last pediatrician not take me seriously when I told him that Teddy's speech and behavior changed after consuming certain things???

While I know that I cannot change the past, I am excited to know that our future holds tremendous health. I never thought I would be soooo excited to discover that my kids and I have a genetic disease!

The discovery:
I have really emphasized a lot of my prayers recently on my Naomi and her inability to gain weight. She is almost three years old and still only weighs 24 lbs. Since the time she was six months old, she would vomit at the drop of a hat. After we ruled out deadly cystic fibrosis as well as reflux, we took a Dr's suggestion that she just has an exaggerated gag causing her to vomit rather easily.

Honestly, my husband and I just got fed up with all the horrific tests and inferences that we just were not offering her enough calories. If anything, we were offering her too many calories to the point where eating became a power struggle. While she can be a finicky eater, the child eats like a horse when you give her something she loves - ask anyone who has ever eaten at Moe's with her :) I knew that I, myself, had been like that as a child. It made sense to me that if I vomited a lot as an infant and was short and skinny for the majority of my life that it would only be natural for my daughter to be the same way.

Finally, I suggested that we start introducing the Pediasure that I had seen advertised into her diet. Our pediatrician referred us to a Gastroenterologist who thought it was a good idea. Justin, Teddy, Naomi, and I got there 45 minutes early to make sure that we would not miss this important appointment with her specialist. We figured that this way we could also fill out all the necessary paper work and insurance information so that when he called us back we would be ready. The receptionist assured me that the Dr. had faxed over all the information that they needed and that we could take a seat next to the other forty people in the office. After our 45 minutes were up, I approached the front desk to see how much longer our wait would be, the receptionist assured me that it would probably only be another 30 minutes. In the meantime, she said I could go ahead and get started on the paper work. "WHAT??? Paper work? I just asked you if there was any paperwork that I could fill out?" She just smiled a weird smile and handed me a clipboard with a sheet of paper on it. I calmed down after I saw it was only one sheet. "After you are done with that I will give you the next one." "You mean there are others?" "Actually, there are eight" she said "but we only distribute them one at a time" she said shortly. Fuming by now, I returned to my seat and filled out my paper, then returned to the desk for another. After eight times of doing this, I looked at my husband and children who were a little low on patience and said "well, at least that occupied us during our next thirty minutes, they should be calling us back at anytime." A woman next to us snickered and said, "Trust me we've been coming to this office for four years for our daughter and we always expect a two hour wait." My husband turned red. "What the heck is the point of scheduling appointments then?" Another twenty minutes went by and then we heard the welcome words "Naomi Bledsoe" Relieved at the thought of actually getting to feed our children lunch at a somewhat decent hour, we ran back where they weighed her and a nurse asked us a series of questions. She then put us in a room. The doctor waved at us and said he'd be in just a moment. He was talking to another man and laughing. By this time the kids were at their melting point. No matter how many songs we sang, books we read, or toys/snacks we pulled from their bags, they were fussing. Another twenty-five minutes went by as we waited for the doctor to join us. We could still hear him in the hallway talking to the gentleman about a fishing trip. When he finally had the nerve to come into the room, he held out his hand for my husband to shake his. My husband was beyond livid and just stared down at the floor without returning the gesture. (I have never seen Justin act like that to anyone before). The specialist did a very brief physical on her. After asking a few questions, he agreed that he thought she was fine and just needed Pediasure to help catch up on all the calories she lost as a result of all the vomiting. He said that he'd like to see us back in a few weeks. Needless to say we decided against rescheduling.

It has been two years since we began her Pediasure regimen. She is still skinny as a noodle. Teddy still has behavior and speech changes as well as random episodes of diarrhea (We just thought the kids were catching bugs easily and treating them with pedialite/gatorade as our last pediatrician advised). I have been very big on eating whole wheat breads, pancakes, waffles. I have tried many different brands of syrups trying to see what ingredients might be affecting him. It never once occurred to me that it was the pancake and not the syrups that were affecting him.
The other day, while we were playing at a park, I met a mother who said her son had Celiac's Disease. I listened to her talk about her son and his symptoms (they were very different symptoms from ours). She spoke about the fact that he can't have gluten which is in most everything. I remember feeling sorry for her and thankful that we did not have to deal with something like that.

This past Thursday, we were trying some new crackers. On the side of the box, it said that they supported the Celiac Foundation. After I laid the kids down for nap, I felt myself being prompted to look up the website on the box thinking about the little boy we had met. As I read the website, my jaw dropped. Everything that they discussed was what we were experiencing. I continued to search the web for other sources of information. There are 300 some symptoms associated with Celiac's Disease which makes it so hard to diagnose. When someone has a gluten allergy it causes their villi in their small intestine to break down. This villi is what absorbs important nutrients into your body. Among other issues, we have not been absorbing these nutrients therefore we were being malnourished.

I began to dismiss all the symptoms that I was experiencing as being associated with something else.

Growing up, I too was small like Naomi. One of the key factors is that we both had tummies that poked out. My sister and I have often laughed that I looked like an Ethiopian as a child since my tummy did this. My mother said she just assumed that since my father and his family had this "trait" that it was just the "Gardom" in us. I was always very short (4'10") until after I graduated middle school. (5'5"-now). I was late to develop etc . . . In college, I was foolish and really began to drink a lot of alcohol (barley, barley, barley). I had a lot of health issues at this point in time. When my husband and I were in the domestic peace corps (A*NCCC), I experienced a lot of cramping & migraines. Drs thought it might have to do with endometriosis but never did an endoscopy. I then got on Depo Provera and had issues with an enlarged prolactin gland. After the Lord prompted us to get off of birth control and begin trying for a family. We got pregnant with Teddy (Endometriosis is usually resolved after having a baby - so I never gave it much thought again). After Teddy, I lost a tremendous amount of weight and just assumed it was because I was nursing, eating "healthy", and staying active. After Naomi I lost a great deal of weight also. My hair began to fall out easily (normal for new moms right??? so I had heard) My right arm frequently began to tingle (probably a result from Naomi always being on my sciatic nerve during pregnancy ???) Then I had a tooth break (have always had a problem with my teeth enamel - due to all the lemons I loved as a kid right?) I had the miscarriage after Naomi and really blamed myself for "doing too much" - I had been changing out the kids winter clothes to summer clothes and was moving around heavy bags of clothing [even after my husband told me to let him know when I was ready and he would do it - I got up real early one morning while he was sleeping to get some more work out of the way and ended up deciding that I was capable of moving them around myself] – not long after, at a prenatal visit, we discovered that I had lost the baby. A month later, I was expecting again only to have my body go into preterm labor 16 weeks early. Praise God, Levi is perfect and will be having his 1st birthday this October! Shortly after Levi's birth, I began to experience joint and bone pain. Again, I just associated it with having four pregnancies in a four year period. For some reason, I have been unable to loose my "pooch" on my belly and have often thought that some days it looks much bigger than others. I have been pumping/nursing since Levi was born - surely my uterus has gone back to its normal size by now . . . Again, I tell myself that it must just be from all the comfort foods I ate to survive 15 weeks of having my baby in Intensive Care. (I have experienced many other not so fun symptoms that I don't even care to discuss with my husband let alone with the rest of the world =])
Thursday afternoon, Levi woke up with a runny nose - 1st time since the PICU in Feb. Teddy was complaining of left ear pain. I called the Pediatrician right away and got an appt. He said that Levi looks and sounds great (gave him a prescription for a baby dose of Afrin). Teddy's ear has a little fluid from congestion but is not infected - just gave him some D allergy. Dr. said his wife has Celiac Disease so he is well aware of it (God put us in great hands =] ). So we are going to be following up with them and doing the necessary tests - he said these unfortunately are not always accurate. In the meantime, we have emptied our pantries and done some online research to discover that there are a ton of great foods available for people who must remain gluten free (That is the beauty of it all - no medicines - no surgeries - just good wholesome food). We need to eat better anyway (who doesn't?)

So that is where we are at. We'll keep you updated as we learn more. Until then you can expect to hear a lot of praise reports as all of our health improves.

Levi update . . .

Summer Fun . . .

We have already had a full summer and are so thankful that we still have another month left of it to enjoy. Then again, SC summers seem to last a little longer anyway :) Papa and Nana were able to fly out for the first time since Levi was discharged from the hospital. He currently weighs 16 pounds and 2 ounces and is such a SWEETHEART!!! He is so smart (as a matter of fact, he is trying to help me push the keys as I type =] ) A week ago he was seen for his well visit and was told that he is up to date on all of his immunizations until his 1st birthday in October - Levi was so thankful to leave the office painfree. He has a follow up with the pulmonologist scheduled for the 11th. We will find out when they will begin to give him the monthly synogis shots that will help to prevent another case of RSV. RSV season will "resume" in September and last through April. While we know that we are to walk by Faith rather than fear, we must be wise and continue to do our best to keep the kids away from other children (in an indoor setting during this season). We did allow the children to attend a VBS this summer and were even brave enough to allow Levi to stay in hotels during our fabulous beach trip with Papa & Nana as well as an overnight trip to Charlotte to watch my cousins,12 yr. old triplets, compete in track and field at a National event (They too got to experience the NICU and are obviously doing amazing.) Levi had so much fun getting to visit the zoo for the very 1st time. He was not as sure about the crashing waves that he recently experienced. He loves to hear his own voice and deep belly laugh. Teddy and Naomi are thrilled that he has taken not only such an interest in them but in his books and toys as well. He has started rolling onto his stomach to sleep at night - for several nights we battled with him to no avail . . . finally, we called his Dr. for suggestions - he assured us that once they can roll themselves over they are no longer considered at risk for SIDS. Levi is quickly outgrowing his infant carrier that we once wondered if he would be big enough to ride in and is just barely fitting into his nine month outfits. He still has NO desire to wear shoes or sandals. It is so wonderful to watch the kids interact. If Levi gets the least bit fussy, Teddy and Naomi run to comfort him.