Saturday, February 26, 2011

a clarification

Janice's comment to my last post had me wondering if other people who read here are having questions.  I was kind of surprised by her comment, but I know that I am not very good in the communications department (just ask my hubby, who is probably laughing at that statement!).  So I thought I would clarify a few things.  Sometimes I can't remember if I wrote about something before, and I assume you all know what I am talking about.

First I want to clarify about the growth hormones.  The growth hormone issue was brought up by our family doctor, now for the second or third time.  It is not something I looked into because I was unhappy about the size of Jedidiah, as it pertains to any preconceived notions I had about how tall or big he should be.  Jedidiah is not *just* small for his age.  I could totally accept that if that where the case.  There would be nothing wrong if Jed was below the growth curve, BUT was growing along it (he should be following the pattern of the curve, but doesn't have to be on it).  The problem with Jed is that he is NOT growing.  Which is why I mentioned that he 'fell' below from where he was.  This isn't a matter of aesthetics, but a health issue.  A child his age should still be growing.  This is the very reason Jed was on a feeding tube for three years, because he wasn't growing.  I assure you all we didn't put him through all those tests and blood draws and the g-tube because we wanted our son to be a line backer (I use that comparison only because I hate football so much, it is SOOOO not my desire to see our sons look a certain way or be as big as so and so, etc.)  He went through all of that because there was/is something wrong with him.  He's not 'normal'.  It is not normal for a child to be throwing up 3 to 5 times a day, it is not normal for a child to throw up if they laugh, or cry or because you touched the inside of his lip (checking for a tooth coming in), it is not normal for a child to not be able to talk at three years old, even though he was trying to.  There is something wrong with Jed, the doctors just don't know what.  After a ton of research on our parts I am pretty sure I know what is wrong, but time will tell. So when we last saw our doctor he again brought up how he thought maybe we should take another blood draw to look at his growth hormones and look into growth hormone therapy.  Growth hormones (artificial ones) scare me!!  I've written about that before.  Which is why we haven't looked into them even though we've been asked about them a couple of time before.  It was only after I did the growth charts here at home, that I saw Jed has not been growing.  He was just touching the bottom line of the growth chart in height (which is the 5th percentile) and now he is four lines below the curve.  If I draw a line across the chart to see at what age his height falls into the 50th percentile, it makes him as tall as a child who is 2 and 3/4 years old.  And his weight, well the chart is for the ages of 2 to 20 and his weight doesn't hit the 50th percentile!  His weight is the 25th percentile for a 2 year old, which means he weighs less than the average two year old (and Jed is 4 and a half  years old).  So not only was I concerned to see he hasn't been growing, I am also concerned because we will be having a check up with his GI doctor come this summer.  If Jed continues on this path (of no growth) it will most certainly be brought up that we may have to re-insert the g-tube.  Obviously we want to avoid that for many, many reasons.  Don't get me wrong, we will do it if we have to, BUT that doesn't solve the *reason* why Jed is not growing.  If we don't fix that then when we pull the g-tube out again a few years from now we will find ourselves in the same boat.  Jed eats, and he eats just as much (at least seemingly so) as Jonah.  Jonah, well lets just say he very well could make line backer status at the rate he's going! ha, ha!  But Jed, is a whisper of a thing.  There is something not working that is preventing him from utilizing the calories/nutrients from the food he is eating.   Which is why going on the GAPS diet is not an option for us.  We need to get to the root of Jed's problem, which I believe is gut related.  Phew!  I hope that brings everyone up to par on my previous comments about growth hormones.  They are NOT what we want AT ALL.  It's hard to be a parent sometimes.  We have to make decisions all the time that effect the future of our children.  I was only 'thinking out loud' if we were making the right one....the one about NOT giving him the hormones. 

The second thing I wanted to address was the intention of this blog.  It started as a way to keep our family in the know about how we were all doing.  We do not have family in the area.  Everyone wanted us to send them pictures, and wanted updates, etc.  It was too hard to do at the individual level, so I started a blog.  Then I realized how much I loved blogging because it was a cross between scrapbooking and journaling.  At least sort of :-)  I love looking back and reading posts from six years ago (I had another blog for a couple of years before I started this one).  I forget certain things that had happened along the way.  And it's fun to see how we have all grown and changed.  My intention is to be real.  Whether that means I am writing about wonderful things, or depressing things.  I write about what is happening in my life.  My life is not perfect.  And I have been more intentional about writing about the non perfect.  I once had a conversation with my sister about how it seemed I could never have it all together like it seemed that everyone else around me did.  She told me that I came across as having it all together on my blog.  You can ask her if you want, but I laughed when she said that!!  I do not, I said!  But she assured me that it was true.  I don't have it all together.  And I know there are other women out there who don't either, but like me, feel like they are failing because it seems everyone else has this thing we call 'life' all figured out.  I wanted these women to know, that they are not alone, I'm not perfect, but I am following the ONE who is perfect, and HE is what gets me through all of this.  One of the many protests about the Bible is that the people in it are all messed up.  That's the beauty of it all.  They are messed up, like you and me.  The beauty is that God so loves us that He sent His son to die for our messes.  The reality is that even though Christ paid for my messes, and He has cleansed me....we still live in a messy world.  I'm 'disatisfied' with my life because I have children who are not walking in the truth.  My heart aches for them, I have cried and cried tears of grief for them.  I have called out to the Lord to have mercy on them and draw them to Himself.  It pains me to know just how more 'messy' my children can get without Him.  I am 'disatisfied' because things get crazy around here after having a newborn.  Maybe that just happens at my house :-)  There has been a lot we haven't done due to Jed, or me just having a baby, or.....x,y,z.  There are things that need to get done.  We have some goals...sort of, that's one of our problems is we don't have a vision in mind, and so we dont' always know where we are supposed to be going or what we are supposed to be doing.  But one 'goal' is to become more self sufficient.  This comes with a learning curve.  We had one dog (at a time) growing up.  Two dogs total.  We didn't have chickens, nor knew anyone who did.  We didn't visit a farm unless it was a school field trip.  It wasn't until I was just about to graduate high school that my dad started a garden.  So I grew up, not growing things.  Most of our food came out of boxes and cans.  So the way we are trying to live is foreign to us.  Our generation has lost the "older women teaching the younger women..."  I've talked to many, many women who feel lost as they were not prepared to be homemakers, but they were prepared to be career women.  So you will see here my frustrations of knowing what I want us to be doing, but failing miserably at actually getting it done!   And although I fail, and I cry, and I doubt and I get angry and I.....on and on and on.......what I am hoping that will eventually be made known is that I don't give up, I stand back up after I fall, I call out to my Father and He answers, that I eventually find my feet again.....However, you're going to see me fall again, and cry and get mad and......because I am a sinner, in desperate need of a Savior.  And though I have taken Christ as my savior for once and for all, I still need His redeeming hand, his grace, his love to see me through each and every day.  I think that's what they call, sanctification.  I wish I could breeze through trials.  I wish I always held my head high in the deep waters.  I wish I could make it all seem easy.  But it's not.  I fail.  I get frustrated.  And then I take a deep breath and pray. 

So there you have it.  My life, my blog is a mess.  But it is being cleansed and renewed.  If only it would stay clean (kind of like my house! or the dishes, or the's always needing to be re-washed).  One day it will, one day :-)  If anyone has any questions or wonders why we do things a certain way, or why we don't do things a certain way, or whatever, please feel free to ask.


Anonymous said...

oh KJ,
this post brought me to tears! I think all good mothers constantly strive to do more for their families, question the way they handle situations and how they could have done better. I completely know how you feel and struggle with the same day-to-day hardships that you do. And I completely agree that I was unprepared to be a mom, being a career woman was so much easier! i don't know how to cook, sew, etc. I do clean very well, but that's just because I'm a neat freak. So you are not alone!! I also felt bad that you had to justify your earlier post about Jed and the hormones (but I knew the whole background story since I've known you since college and followed your blog for years). You are a great momma...and just trying to figure out what is best for your little man (like the rest of us). xoxoxo

(Kerri) said...

Oh, hugs to you!!! Thank you for taking the time to leave such a sweet comment. Yes, being a mommy is hard! Speaking of which the baby just started to cry, so I can't write more! Maybe later :-)


lusi said...

Hi Kerri! I stumbled upon your blog today (I think via suzanne's?!?!) and was really touched by this post. Just before our son was diagnosed with autism, I'd had a mum say to me, "oh sure, get him diagnosed if you feel the need to have him labeled!" Sadly, what this lady failed to see was that we were NOT desiring a 'label' as such; we were after HELP for our precious one! We were searching for the skills and tools and keys needed to help him and yes a diagnosis (to know what we were dealing with!) was a part of that! I loved what Jeremiah wrote in the last comments section about walking a mile in someones shoes before making insensitive comments. You seem like such a caring mama and I wish you Gods continued blessings in getting all the help you need for your little man.
When you are in battle and are weary, may you have helpers like Moses did, who will hold up your arms toasted heaven to continue in your journey.
May Almighty, loving and gracious YVHV bless you all!
Lusi x

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