Teach me your ways, OH LORD, and I will walk in your truth; give me an undivided heart, that I will fear your name.

Psalm 86:11

I will be your God throughout your lifetime until your hair is white in age. I made you, and I will care for you. I willI will be your God throughout your lifetime until your hair carry you along and save you.

Isaiah 46:4




Blessed is the man whose quiver is full.... Psalm 127:5


Trust in the Lord with all your heart, and lean not on your own understanding. In all thy ways acknowledge Him and He shall direct thy paths.


Proverbs 3:5-6




Friday, June 29, 2012

Simple, Really

7:00 Wednesday morning i drag out of bed, get dressed and mope to the kitchen for breakfast. Decide there is no worth in opening my eyes at this hour much less eating. I scoop logan out of his bed, grab his clothes and the diaper bag and get into the car. Just he and I. When i was pregnant with him i wanted to be sure that i made time for times like these just the two of us-- didn't want him to get lost in the shuffle.

We arrived at the drs office at 8:50, our appointment was at 9, if you know me at all this is HUGE!So we sit and sit in the waiting room. The waiting room happened to be filled with VERY sick kids, that day, i thought i am so grateful we are just here for a consult-- it could be so much worse.

We get into the room, get an accurate weight--ounces less than he wieghed just last week :( i had filled out all of the patient paper work before i arrived(they mailed it to me) so my boy and I just sat on the floor and played with his cars. Really just enjoying our time together.then in walks the dr...

He starts right into the chart asking, asking, asking... then stops and says "I am so sorry! Im Dr Rittmeyer and you are..." I answer with a "deer-in-the-headlights" stare. I had waited for this appointment for a few weeks! I was so excited! Then he came in and i was instantly so over-whelmed! We discussed the symptoms the baby is consistantly presenting and we talk about weight gain or the lack there of and how he is very disappointed i havent seen him sooner. Moving on in our discussion, he begins to almost mumble to himself but directs the comments to me and or logan. Then he says "well after wieghing the pros and cons of scoping him i think we go ahead...is that okay with you?" i say "um okay i just had one personally and they didn't gain any insight from it... can you tell me more?" "I can scope him tomorrow! I feel like i would end up scoping him in the end, so i would rather do it now!" Let me go set that up for you!

The Dr returns explaining that he is concerned about "celiac Disease" and wonders if Logans body has reacted to a point that his "villi" are blunted. Meaning the "villi" located in the small intestine from what i understand are not doing their job i.e. absorbing nutrition. Which can explain the weight issue. I was just in shock. Not that we could possibly be finding a solution-- but that they were going to sedate my child and begin biopsying him--TOMORROW!

FAST FORWARD... Today at 4:30 i wake up paniced that i had over slept, i pray and lay there trying to rest  few more minutes. 5:30 i get out of bed, put on what i realized later was a shirt that i had worn to build a VBS set a few years ago and has appoxy on it and bum flip flops. Everything looks more glorious in the dark! I scoop up my sleeping toddler and put him in the car. i have a sippy cup that he cant drink because he is fasting--GReat job, right-- i guiltfully drive thru mcdonalds to get Diet Coke, hoping to just survive the day. Arriving at the GIDU there are clear signs posted all around reading
                           "Due to respect for patients fasting for procedures   
                             we ask that NO FOOD OR DRINK be brought into
                             this waiting room"

Seriously!!! I dont go ANYWHERE without a coke in my hand! I sleathly sneak it into the waiting room and set it right on the counter while i check in-- smooth right?! Very gratefully no one says a word about my lifeline at the time. Logan and i sit quietly in the waiting area, register, pay the co-pay... then we just sit. I sit quietly praying over him and quoting scripture. Then we get called back.

Two busted blood vessels from yesterday, and a blood draw wound made IV instertion difficult. So after busting two more today they put it in his foot. In general he doesnt mind getting blood drawn or the IV thing-- but the foot option... well he screamed and screamed. It was horrible.

Then we snuggled a few minutes before they decided it was time to go.

As we began to walk along side the gurney it hit me. one step at a time the tears began to fall. Walking into the room with the ultrasound machine on and the bright lights on high, i began to shiver a bit. Dr rittmeyer reassured me telling me it was Simple, really. They all were great about the whole thing. Patiently he said ... I think it is time for Mom to go. I walked out and lost it. Wandered back into the prep room where a nurse helped me gather my things, and i just sobbed. Finding a place in the waiting room where i could just fall into MY Father. I cried out to Him and just asked for him to hold me. Not answers. Not healing . Just to hold me. To lay His mighty hands on my sweet boy and keep him safe. I just wanted it to be over.

Wallowing, texting updates and trying to untanlge my headphones werent complete before i saw Dr Rittmeyer round the corner. It was Over. It was Simple, REALLY! He asked if Logan had consumed any ibuprofen in the last week. When my answer was No and he shook his head. i was a little spooked. We stepped into the recovery room and he began to list the biopsies he completed. Esophogus, small intestine, stomach, (the part of the stomach that processes sugars because that too could be an issue) and errosions. He then explains this to me..

There are two spots in the base of Logans stomach that are "erroded". Typically this is caused by too much ibuprofen or motrin-- but it would to have been given in the last week-which it hasnt. The other cause could be a few things: an allergic reaction to something he has eaten, or the stress of the food resistance has worn on his body to the point an ulcer is forming...well two ulcers are forming. None of this will be clear or definate until the biopsies arrive next week.

Originally we were going to wait to address the celiac thing until the biopsies were back.... today we went gluten free per Drs orders. "No confirmations but almost postitive from what i saw today" Living Dairy free and Gluten free are going to pose a list of new challenges, and are going to require entire family lifestyle changes. But my boy is totally worth it! coming out of the sedation took quite a while for him-- his weight was apparently a problem with dosage because he is soo tiny. So they were never auditably concered(In front of his mother) but when different nurses begin to show up in your recovery room and the Dr returns... you kinda figure it out. After much prodding, tape ripping and toe pulling his eyes opened. Hesitantly he grunted a few times and they filed out of the room, mission accomplished. Shorty thereafter we were released on our new journey.

living gluten free and dairy free with be a huge change for us. WE are a food loving family!

Its simple though, really. God gave me sweet Logan to care for. No mountain too high, no valley too low. No ulcer to hard to diagnose. I(WE) will continue to explore his best plan of action until we discover what is best. I will order new things to keep my pantry(his food needs to be seperate from the other stuff-so seperate the kids can understand it) safe, i will educate my kids on what is safe, label things for the nursey situations so that i am sure he is watched carefully, and so on.

Dont Panic. I am with you. There is no need to fear for i'm your God. Ill give you strength. Ill help you. Ill hold you steady, keep a firm grip on you. Isaiah 41:10

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Phillipians 4:6

it is simple, really.... He loves Logan more than i can fathom. He loved him first. He is in control. He wipes my tears and comforts my soul. He heals all wounds and is creator of all things.... it IS simple. Really.



7 comments:

  1. As a mom of a child diagnosed with cancer...I walked that road you walked today many, many times. The Lord gives us strength that is just supernatural just when we need it. I'm sure you felt it today. I'll be praying for wisdom for the doctors and answers about how to go on from here with whatever issues Logan has. He is the ultimate physician and that's a wonderful thing!

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  2. Oh, Nickie. I'm so sorry you're dealing with this. I'm praying for little Logan and KNOW that God put him in the right family.....you can do these lifestyle changes and Logan will soon be thriving.
    Sending you much love,
    Robin

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  3. Sweet momma...you can do this. Although I am not dairy-free, I've been gluten-free for almost 6 years now. And you can do this. I was tearing up while I read what you went through with your little one. :( I can't even imagine. If you need any help wading through the new world of gluten-free...or if you ever just need to cry b/c you want it to be easy for him...I get it. Please let me know if I can help. Praying it will be a smooth transition.

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  4. Nickie, I have walked the road you walked today more than once. I, like you and your family, believe in the power of prayer! As I shared this story with my girls my sweet Lauren Elizabeth who lived this same story said, "Mommy, can we pray right now?" and we did and we will continue to do so! I will continue to follow your updates.
    Wendy

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  5. Praying for you kiddo. My heart breaks for you and Logan. How much more so our Heavenly Father? Like Wendy, I have been there too. And God is able as you (and I) have seen and experienced.

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  6. I have a 14 year old son with Autism Spectrum Disorder. You feel so alone at first and then you feel God's presence and sweet, sweet love and He reminds us He is there. Mom's can do anything! Logan can do anything b/c of mom! Praying your journey is not rocky. God is beside you and holding Logan while rubbing your back. God Bless you and your family through this.

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  7. Hi, Elise told me a little about your story and directed me to your site in hopes that I might be able to give you some helpful info. My son had a lot of these same issues, but was gaining weight okay so they weren't too concerned at first. Then right before his third birthday he started having seizures. We had already gone gluten and dairy free at this point. Any ways to make a long and scary story short we started out by putting him on the Modified Atkins for Seizures diet and he has been seizure free for two years with no medicine. When we were going through all this {muscle biopsy, extended hospital stays, MRI's, various tests, more blood draws then I want to remember, etc...} I started researching food and how it can heal the gut. I read an amazing book called Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride which in turn lead me to the book Breaking the Vicious Cycle by Elaine Gottschall which is specifically for celiac and healing through that diet. My son Atticus, before he went on his special diets {he's now on the GAPS diet and it works for him as well} had non-stop diarrhea that got so bad that there was copious amounts of mucus in it, he had eczema covering his body and major behavioral issues as well as a constantly runny nose and seemed to get sick a lot more then my other kids. He also had a reaction to his two month vaccines that landed him in the ER with a diagnosis of non-specific post vaccination arthritis. At two months old! Looking back I realize now that he had a weak gut from the very beginning, and the changes we made in his diet {gluten free/dairy free} just weren't enough for him. Plus we made them too slowly, so a lot of damage was done. I believe the seizures started because his gut was so leaky that it was releasing toxins. Once we removed the foods that were damaging his gut it gave it a chance to heal and the seizures went away, as did everything else. No more eczema, etc... The GAPS diet is based off of the select carbohydrates diet from Elaine's book. I strongly recommend reading both books they were an eye opener and such help for me and my son. I have a blog about his story if you want to check it out. http://seizurefreeme.blogspot.com/ I feel for you and what you are going through, it is so overwhelming and super scary. It can feel very lonely putting your kid on a special diet too, but there actually are lots of families out there going through similar things and ways to connect with them. If you have any questions at all feel free to email me at~ the_rivers {at} frontier {dot} com
    After witnessing my son healing before my eyes through diet alone I strive to spread the word and hopefully help other mom's out there that desperately want to see healing for their child. :) You will be in my prayers.

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