Im hungry, I promise

As a kid my grand mother used to always remind me not to let my eyes get bigger than my stomach. I had a really bad habit-especially at my mimmy's house- of seeing all of the amazing things prepared for dinner and filling my plate... and filling my plate... and filling my plate.

Claiming to be hungry enough to finish every bite never fooled my family. I am an eater. I LOVE FOOD. However, i would end up eating that plate full for dinner, midnight snack, and possibly lunch the next day. She never threw it out . She never reminded me of my choice to take on too much.

On this day i registered my 5 year old for Kindergarten. Lorelei has been counting down the days until school all summer,and today worked best for me to turn in the paper work since it was just me and Logan. My mom had the rest of the kids so it would be a quick thing... HA! Not. I ll finish up this part of the story at the end, just remember that i had plans for my morning!

This morning was Logan's follow-up GI appointment @ 7:45 am requiring he and I to leave by 6:30 from the Hill. Seriously in the waiting room for an hour and a half. While we sat there and Logan entertained the other guests, lol, i saw so many other kids that were sick. Some of them had severe birth defects, some of them were fine until something spooked them and it took every ounce of that parents physical strength to restrain and resettle them. So many of those parents just watched Logan playing peacefully, and told me how sweet he was and how blessed i was to have him. All the while in the back of my head i was thinking of the numbers i hoped for him to acheive on the scale, or the imaginary x-ray that would come back. My mind was on what we could get done today. The List of great things I was going to have to report back to you. Not on how really great i have it with my little guy. Spoon one of mashed potatoes.

Once in the room, the PA( that i have already told you is trendy, Barbie Like, and bubbly) and i discuss step by step the original treatment plan and the after effects of the plan.

                                                Day one: enema followed by miralax four times a day for two days

                                                Day Three: Enema again followed by miralax once a day everyday                                                  until we went for follow up.

That being said. We had a few days of "chunky poop" and then went back to explosive diarreah. First enema had almost no noticable movement. Then second enema had a few quick poops with in the first hour then back to the diarreah. based on the amount of blockage, it didn't seem like it had been processed thru to me. I was watching his diapers like a crack addict watches the corner! I was at a loss. Confessing to the PA and now Dr Rittmeyer, who had joined us, that i wondered if i was missing something, or was i telling them the wrong symptoms, could I have done the enema wrong, where i had i dropped the ball in figuring this out??? Both of them quickly urged me to stop asking questions until we had pictures. If i HAD missed something it would be clear in a matter of minutes after the xray came back. I agreed that fretting obvoiusly was taking us no where. Add some gravy here.

Logan and i walked to the imaging center, and during registration he stuck out his little arm to get his bracelt before she had even mentioned it. He knew after the jewels were on we walked to the xray waiting area and then he reached up and took the lady's hand, motioning to me with the other because we had business to take care of. So still on the xray table, talking all the time about what he saw around the room. This week his language has really blossomed and has been really fun for us to hear. Chatting while the lights flashed and getting redressed and then the solomn walk back to the dr was upon us. No more speculating. It was time to know what was still in there or if i was just a fruit cake!OOOOO I love green beans~ can i have a spoon full? Grab that scoop with the ham chunk in it!

We claimed our fast pass - its 11 am now- and we walked into the office to meet with Rittmeyer and The PA. Logan grabs his blanket and lays down on the floor. He is spent. They both begin to point and explain the xray and there were hints of good news but not many. Thinks DID move. It is clear that the intestines now have more gas in them than before. Keep in mind that this gas-if passed- causes pain for a good while before it vacates. The rectum is still SWOLLEN. Logan "cramps" all the time now since he is on the Miralax. That is what miralax is for and long term we want his rectum to be able to do this function naturally on its own. The problem now is that, with the amount of blocked stool, the rectum cannot contract properly. There is a noticable difference in the pictures but only because things shifted, not because they "moved". Keep in mind they call "bowel movements" when the toxins completely vacate your body... No eviction notices have been issued in this case. New plan of action.

                                               Day One: enema followed by magnesium citrate every four hours (1.5 ounces each dose)24 hours after first enema administer enema #Two. Followed by         miralax 3/4 cap full four times during that 24 hour period. 24 hours later enema # three, followed by maintanance miralax once or twice a day. After this is complete would should begine to see solid bowel movements with in a week. if this is not the case, we return to dr.

I havent told you yet, but We are losing weight again. So in four weeks assuming this cleanse works, the job now is to determine actually what caused such a blockage to form, whether we maintain the current diet restrictions and how we can help him catch up and turn the loss into gain. I want two thighs and a leg please... extra crispy with that special cajun seasoning!

Finally leaving, i call my mom and ask if i have exhausted her yet or if i can still swing by the school. She says to continue on my plan and so I stop and the school. The school that because it is a little after noon is closed for lunch. SERIOUSLY??!! Head hung in frustration from waking up the sleeping baby and walking to the door to discover a closed sign, i decide to just head home. I get home and remember that after our picnic i shattered the jelly jar in my lunch bag and we dont have enough lunch meat for 7 of us.SOOOO, i make the peanut butter sandwich call... the complaining begins... and then my mom says LETS JUST GO TO MCDONALDS! PEACE! I JUST NEED PEACE FOR A MINUTE! Lol as if the Mcdonalds play place is going to provide this for her i pack up and we head that way. She suggests while she lets the kids burn off their energy i take another stab at the primary school. This time i take Luke, because he has just about worn NANA out today.  Paper work neatly in my envelope and feeling prepared i push lukes stroller in the office and begin to fill out the form that has to be signed in front of a witness. She makes copies, i submit my forms and documents, then she says Lorelei's shots arent up to date. Wait, yes they are... UGH but her shot record doesnt reflect said shots. I made sure to get the E.E.D. form but didnt request a current shot record. So we pick mom and the troops up and drive back into Savannah to obtain this peice of paper. The school closes at 3:30, i arrive in at Dr Stones at 3:20. Thankfully since the majority of the paperwork was there Lorelei is being accounted for. My littlest girl is counted in the Kinder group for next year...  Pie??!! Where? what kind? There is room!

I worked tonight. Joel had dinner with a customer. Mom kept the kids.

Driving to work i had a good cry. Im not sure where it came from or what exactly i was crying about, but it felt good. I realized that althought my plate is Full, and right now i dont feel the slightest bit hungry its ok. I dont have to eat it all.

 I just need to find the hunger.

No one ever said that being a mom was going to be easy. Gut wrenching probably wouldnt be websters definition, but neither is ALONE. If i sit down at the table and eat this meal for the next few weeks, He will never remind me how much i am juggling right now. He will never tell me that i cant finish it by myself. My eyes wont end up being bigger than my stomach because i will begin to CRAVE HIM. The more i devour HIM and the words before me, the smaller and smaller my plateful looks. Even if He is lifting my fork due to my absolute exhaustion, it will all get done. It will all be purposed in His name.

"in spite of all we have done, if we only believe...

who am i that you are mindful of me, that you hear me when i call

is it true that you are thinking of me, how you love me

its amazing!"

(I am a friend of God,lyrics)

"I am finding myself at a loss for words, and the funny thing is, its okay. the last thing i need is too be heard, but to hear what You would say. Word of God speak! Pour down like rain, washing my eyes to see Your majesty. to be still and know that You are in this place. Please let me stay at rest in Your Holiness

im finding myself in the midst of you. Behind the music behind the noise. all that i need is to be with you and in the quiet hear your voice. Word of God speak....

--MercyMe

I have read books about the incredible journies that women have been on while carrying children knowing they are fighting extreme odds. I have met women that have burried children that never beat those odds. I have nothing that extreme to carry. The women that God has made them along their journies however is a woman i can only aspire to be.

I never will be able to watch my kid suffer with out suffering with him. But the woman i will become in the process i hope is indescribable.

in the end i am not the only one that has had to watch my son suffer, knowing the agony, knowing the outcome was most likely not pleasant. He DID. HE WATCHED FOR ME. HE wept as His son suffered. Just like me. He too understands the parents perspective, yet still finds strength to carry me.

all of a sudden my plate doesnt seem so full.

can you see how it has shifted? the "triangle" shaped part closest to his legs is his rectom. can you see that it is darker in todays photo? do you see the gas(any black spots in the abdomen)? he is still pretty full, and his rectom is too swollen and packed to do its "job". Please pray for my little man.

  "if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, 'Go, throw yourself into the sea', and it will be done"? Matthew 21:21

"Not by might nor by power, but by My Spirit" says the Lord of Hosts. What are you, O great mountain? Before Zerubbabel  you will turn into a plain.  And He will bring forth the Corner Stone to the shouts of "grace, grace be upon it!"
Zechariah 4:6-7



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