A new way of life!

Yesterday at breakfast Logan screamed the entire meal.

I made him a special waffle and a banana. Usually he would love these foods, but the rest of us (6) were having pancakes. Sigh it was horrible, knowing all he wanted was a pancake. I felt like I was getting a grip on it just the night before, now I felt defeated.

I have gotten such amazing response from my Facebook friends and family! Thank you!

Okay I started that post a few days ago and it never got finished. Sorry.I feel like I spend the majority of my time preparing meals. When I'm not in the kitchen I'm probably working to pay for this new crazy expensive diet. I sit here in the drs office -blogging on my phone!loving it-- waiting for answers....

now sitting at home after what seemed to be a very busy few hours. At the top of our day we were putting gluten free pancakes in a zip lock bag and filling a cup with soy milk to take with us to the dr. Logan hadn't slept well last night and well neither had we. So at 6 when we were trying to quietly get ready and he began to scream it was odd. He just laid on the bathroom floor watching us buzz around. It was particularly odd to me because i have noticed a distinct different in him the last few days. He is eager to eat and seems happier and more playful. Those feelings aside, we packed up in two cars and were off. Thankfully mom stayed the night(and walked with Logan quite a bit last night) so she would wake up and care for the other kids while we were away. Joel and I were both on edge. We were snippy, he was focused on what was going on at work while we were at the dr and my stomach was in knots. 7:30 appointments are great because you get right in! although the dr asked me, post procedure, to come in today at 7:30 he failed to notify his office staff- what i learned was that it really doesn't matter because no one else in the world picks 7:30 appointments so there was room for us lol.

we go back and they place in a room then the moment of truth.... He weighed 20.12 pounds!!!! DO you remember what he weighed last week?? 20.2!! very exciting folks!!! So i am just beside myself, while my husband wonders if i have smoked the happy pipe on my way to the dr! WE try to get Logan to eat a few different things that i have packed and he just isn't interested. I'm thinking GGGRRRREEAAAATTT here we go again. just as I'm struggling to keep this little boy entertained in the office this Nurse Practitioner that looked like she was cut out of a magazine walks in, introduces herself and hops on the table.

side note: i had waited 2 months to see my GI doctor and last Monday i saw a P.A. and NOT my dr because they were over booked, so this could have gone either way for this lady. I had half a mind to say "um may we see the dr??"

Turns out-- SHE WAS AWESOME! She had read thru our chart and was familiar with what we were doing/dealing with. We discussed the changes in him that i had noticed, first. I was kinda glad it happened this way because she knew the numbers i did and what we had recently changed in his diet as well. Then the bomb comes. He is NOT positive for Celiac DISEASE. HE has very good indicators, but the DISEASE was not evident. WAIT!! WHAT??

she went on to say that he has places on his esophagus that almost look burnt. The "erosion's" on his tummy appear to be from acid reflux caused by something else. However... they are something we must tackle. The weight gain was probably due to the gluten free diet. Just because he doesn't have to DISEASE doesn't mean his body knows how to process gluten correctly. So for now we remain gluten free. 12 ounces in a week could translate into 2 pounds in a month-- i am seriously barely containing my excitement!!

next step. when we hear negative test results but remain gluten free we are both grappling for the "then what is its". i didn't say i liked last weeks proposed fix, but it was supposed to be just that-- a fix. The nurse practitioner with the Drs blessing suggests we walk over to the place we had the procedures done Friday and get an x-ray done because they have a theory. I am not going to lie and say that i wasn't thinking "do you understand how expensive your theory last week was" but those thoughts were quickly quieted by... you guessed it 12 OUNCES!

So we nodded, took the paper work and headed across the street. Meanwhile Joel suggests that i see this great Dr Rittmeyer because of how quickly he has declared war on Logan's condition! We arrive, register and get the x-ray done. Then i ask the lady if there is something i can take with me to give to the dr since we were headed back there right away. She says "oh, its digital! It was there immediately after i took it!" Wow! this technology stuff is spiffy!

The Nurse Practitioner told us that returning for dr ordered x-rays was like having a Disney world fast pass-- it was! i know several of you are Disney addicts so i thought i would share our Disney like adventure today :) We walked in and the lady behind the little glass door that is normally not friendly poked her head out and said"WHITE? Returning from x-ray? come on back!"

Just then i smell the most horrifying odor... nothing like standing in a drs office trying to listen to explanation with a kid that smells like dog poop. The Dr and Nurse Practitioner both stand eagerly with a few more lab results that have just arrived and the x-rays. 

ALL TEST RESULTS ARE NEGATIVE! PRAISE GOD! still remain diary free until our next visit and gluten free until further notice. Don't change anything in the process of elimination.

The xray however was far from clear. Logan's rectum, small intestine and beyond are FULL. i am going to post a photo and tell you that in the top of the photo are his lungs, that are black. Black in this case signifies air. His intestines, rectum and colon should have all presented as black to my understanding... they are white. meaning (again to my understanding) they are full of poop.

Can you see how distended his belly is? Now my first thought was how can someone who has had diarrhea for 9 months have clogged intestines?! Well this is how. We are not sure to the WHY yet but they were as informative as one can be about the how. If you hold in a bowel movement too long your colon stretches a little bit to make room for more, and then it can happen and happen. Then the more full it gets the less it can contract to push food out. she was making motions with her hands that helped me to grasp and it looked similar to a uterus in labor. Then when the colon isn't pushing things out and it eventually gets to the rectum-which is supposed to always be empty because of the sensations in the rectum- it isn't moving very quickly either. Now things aren't moving because it is too solid to flow properly,AND the exit is blocked! Any one in this position quits wanting to even go because it would be uncomfortable!! now a situation is created that only LIQUID can get around these blockages.... hence creating diarrhea. she explained it like white rapids. water with no rocks moves slowly, water running over jagged rocks moves quickly and can be abrasive! so that explains his "blow outs". When looking at the xray you can see those black funny lines in his tummy--- she guessed those are very probably gas :(  Gas trapped there would be incredibly painful for someone his size with these blockages. So although we don't know why it happened, we fix it now. Tomorrow morning i will begin the "cleansing". One enema tomorrow then mucilax for two days 4 times a day, then another enema on Monday, followed by fiber everyday until my next drs visit in three weeks.

3 weeks from now, we hope that things will be better. Obviously we hope for weight gain( i understand shedding all of this stuff inside will lighten him up temporarily), but then we hope for consistency in bowel texture and for less bloating. WE continue gluten free until further notice in case that did indeed fail to be processed normally causing the blockages to form. The kicker is however that Soy milk increases the risks of these things forming, so we may reintroduce dairy in three weeks. Slowly of course, but Joel will be very pleased. Joel is a huge milk drinker and he is a firm "does your body good" believer. I think he can handle gluten free, but milk free forever would have made Joel really sad for Logan!

"As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him" John 9: 1-3

after a long morning!

a few from the fourth