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




Sunday, May 19, 2013

Where's my copy of the map?

I have always promised to be open about exactly what God is doing in my life. Whether it be pretty or abstract, work is work.

Words like "no progress", "malnourished" and "at some point we start moving backwards". We met with the endocrinologist last week.  I heard things that I wasn't prepared to hear, but that somehow didn't shake me like I anticipated they would. Logan isn't just not gaining weight; he isn't making any physical change at all. After showing me "plots" on charts from 9 months, 12 months and 18 months ending in charts from that day... L had steadily been making growth in height. Now lets be real, when I say growth in height I mean like millimeters. Just enough that it was able to be noticed on an exact measurement chart.

They weighed him twice. They measured his height three times. Wrapped a tape measure around his head three times as well.  There it was in front of my face on four different "curve' charts. >3

I was told that for a child to grow, well anyone really, you have to have a base. Logan's age bracket should have 5 mm of fat. I am not a Dr so I am not professing to have this exactly correct, but this is what I understood. Logan measures 3.6mm. this means that he isn't even maintaining, much less growing. The Dr suggested that Logan is not absorbing anything, that it is quite possible he is burning to stay functioning but is not able to absorb calories at any point.

He mentioned elevated liver enzymes, which I gathered meant that Logan's body is "trying" to grow. Apparently your liver enzymes elevate when you sleep at night, because your best growing is done during these hours. Because Logan's test high all the time, it indicates his body is pushing non stop.

We tested so many possibilities to confirm all of this I cant even put it all into print. I wrote feverishly as the Dr talked but I still need to read about what I thought I heard and what it means to us. The Dr was very patient with us and spent a great deal of time just looking over every inch of my sweet boy. He noticed a few things that were slightly off and we are going to adjust our tests accordingly. The tests were categorized as "tests from a gastro angle" several times. This Dr doesn't believe that Endo is our answer, however  he says because doctors look from different angles that maybe he can find what Dr Rittmeyer has over looked.  This man was gentle and made sure to speak plainly to both boys in conversation, but was slightly "einstein-ish". I could tell that his thoughts were racing and his mouth couldn't quite catch up.

There are very obvious tests that will come back an easy fix- like thyroid-, but I'm not sure if he isn't absorbing how we will get him the meds to fix this but the dr made it sound fairly easy to remedy.  We also had additional abdominal ultrasounds to look for a tumor. I know. I know. How in the world can the kid have been under so may cameras and this been missed?! The answer he gave me was this: because Logan's intestines and colon/bowel are consistently swollen it would be hard to see around them. So now hoping we have figured out a better "stay clean" regimen there is a possibility we could see better. the Dr said out loud " this shouldn't be here" , "this could be swelling... but its not right either way", "are we feeding the tumor or the boy".

NOTHING shook me that day. I took notes, I splashed in a public bathroom for twenty minutes with my naked toddler trying to get  a urine sample, I had to discipline my 4 year old who lost his mind in the hospital... all before ten am.

Somehow I left with a perfect peace.

It wasn't until the night before at midnight when I began to let my family in on the purpose of the ultrasound and ask for prayer that it hit me. Satan then set the bats free. Ideas began to hit the walls of my empty mind and stir my emotions. I prayed and exchanged scripture with my supporters. Then the same scripture came from two different people. Two different states. Two different translations. One GOD SCREAMING AT ME. 

"When you call on me, when you come and pray to me, I'll listen Jeremiah 29:12 MSG." flew across cell phone towers from Austin, Texas, while I was texting Jeremiah 29:11 to my dad, he fired back Jeremiah 29:12-13. ALL with in moments, God grabbed me in the middle of what felt like the loneliest place I had ever been.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come to pray to me and I will listen to you. You will seek me and find me when you seek with all your heart. " Jeremiah 29:11-13

When we started this journey I knew that God was going to heal Logan. It was that simple. I had no idea how God would work in my life . Nor did I know that Lexi's night time prayers would include a soft spoken "God please help us figure out how to make my brother well". 

I don't know what Gods plan for our boy is. I have absolutely no idea. What I know is that each time I write about how God is working through him in me that people all over the world read it. People that in some cases have admitted having no belief in what I believe in, but are so grateful I have something to cling too.

I read a book that described a child a couple lost as "having weight". The Drs prepared the family for the worst, but the moments they had with their child "weighed' in on the entire medical staff, and everyone who later read the book and follows their story now. That is truly all I can imagine.

Whatever comes of all of this, I know that it was part of a grander plan. Clearly I am not telling you we are done fighting and we are on the backwards slope. But right now we are making zero progress and are beginning to back pedal. Investing in a new formula that is twice as expensive as the one we are already on is crazy, if there are no nutrients being absorbed, but those aren't the thoughts you have as you click away and drop it into your shopping cart.

My mind wonders often. When I see him doubled over on my bed complaining, I ask God "why?". I would not be honest if I told you HE replied instantly with comforting words. What does HE do? my little boy asks me to snuggle him to he "peels" better. When I kiss his head that one year ago didn't have hair, God subtly reminds me that things are happening. 

Though they may not be "Chartable" , there are big things happening. I may never see them, but the ways that God is working through my boy are immeasurable.