Wednesday, May 26, 2010


Once again I am sitting here in shock.

I received a call back from the social worker today. She was very kind and patient with me. Which was much needed. I told her how the GI appointment went and then took it a step further to ask her what was going on at this point and what the concerns where after talking to Makenzie's doctors.

Her answer was jaw dropping for me and both of her therapists that where here at the time.

She concluded that I take very good care of Makenzie because this was conveyed through conversation with all of Makenzie's doctors. Then she went on to tell me the original complaint was medical neglect and EXPLOITATION over the video I posted of the GJ tube change.

Please pick your jaw up now... you are drooling.

She told me that even after I explained my desire to put the information out there as a resource for other parents and for those who had asked many questions about the G tube and how it worked, she still felt that I was using Makenzie, (exploiting her) and to top it off..... hurting her.

The term "exploitation" may carry two distinct meanings:

-The act of using something for any purpose. In this case, exploit is a synonym for use.

-The act of using something in an unjust or cruel manner.

I began to think about that and here is what I realized....

When a child scraps their knee you clean it. Usually this involves some type of solution that HURTS but because you do not want your child to have an infection you clean it even though you know for a brief moment it will give additional pain to your child. This is not done unjustly. This is not done with cruel intentions. It is done to protect your child and keep them safe from infection. The same stand true for changing a g tube.

Before I pulled out Makenzie's tube I made 2 calls to the hospital. I had clearance from the IR department to pull the tube. I left a message with the GI department for advise on feeding Makenzie over the weekend which was not returned until a second call was made by me on Monday morning. I did what they told me I could do. Not to mention changing a tube is something that is acceptable to do at home, without a doctor. Something that parents of tube fed children do everyday all around the world. Something we were trained to do before we took Makenzie home from the hospital 3 years ago.

So does changing a G button hurt? I can't imagine it hurts half as bad as getting your child's ears periced. Which is not considered "hurting" your child but I don't know... I don't have one. Yes, sometimes when Makenzie has her tube changed she does cry. She also cries when she doesn't want to go to bed, when she does ROM, when she does therapy, when she wants to be picked up, when I walk out of the room, when she wants a toy..... that is how my non verbal child communicates with her world.

As far as exploiting my child.... I really don't have anything to say to that. I don't get paid to write this blog. Other then to chronologe Makenzie's life and help others in the process, I don't get anything out of it. I started Makenzie's Miracle to keep my family and friends in the loop on Makenzie;s life. This platform is an amazing way to do that both for people who love my daughter near and far.If I have ever gotten anything out of this blog has been some wonderful friends who walk similar roads as my family and support and prayers from people all around the world for healing for Princess Makenzie. These friends and prayer warriors have blessed and forever changed my families life in many ways. That is social networking... not exploitation.


So here are a few videos I found online of PARENTS changing their child G tube at HOME. Some of the kids cry and others don't. Are they hurting their kids as well?...or.... Maybe they are just exploiting them and their medical condition. This is just crazy.

I don't really expect you to watch all of these but this first one is of a dad changing a GJ tube out for a G tube because his daughter tube was clogged.

In this one the child crys and tells his mom that it HURTS.

Little Emma crys when her button is taken out and again when it is replaced.

I sure wish that all the money that was being used to "investigate" this craziness would be spent to really fix what is broken. I realize that there are children out there who need to be protected and because of this fact the CPS system is necessary. However when you can say that you know my child is being taken care of very well per her doctors.... and you understand that replacing the button at home is acceptable why is that not the enough? Can you really sit and read this blog and walk away thinking I am using my child for some kind of ulterior motive?

If you can.... I will just stop blogging because that is not what this is about at all.


Alicia said...

Oh my gosh. I am thoroughly disgusted. I can't believe someone would have the gall to accuse you of exploiting Makenzie because of posting a video of a g tube change. WHAT????? Did the social worker say that CPS thinks you are exploiting Makenzie or that is what the charge is right now? Has there been a final decision or is it still being investigated?

The department of Child Protective Services had better be real careful on this one. Thanks to YouTube, there are plenty of videos one can use as evidence of "exploitation" that are far worse than documenting a g tube change that might have caused Makenzie some discomfort. I found videos of INFANTS getting their ears pierced! Video taping something someone has done to their child, which is NOT medically necessary, is ONLY for cosmetic purposes, and which DOES cause pain vs posting a video of a medically necessary procedure and calling the latter "exploitation"??? Not right at all. CPS better not pursue this one any further lest they want to open up a HUGE can of worms. I agree, the time and resources being spent on your case could and SHOULD be better spent on someone who really IS abusing, neglecting, and exploiting their child. You, clearly are not.

And the person who reported you should be ashamed of themselves. Period.

I am so sorry you are having to deal with this right now. I am praying this whole CPS mess gets flushed down the toilet, where it belongs!

Marcia McCoy said...

I have been reading your blog for several months now and really enjoy reading it. I have never commented before but felt I had to tell you how sorry I am that you are having to go through this. I so admire how well it seems you take care of Makenzie. I am one of your prayer warriors and will continue to lift you up in prayer. I hope you are able to continue blogging but will certainly understand if you feel you can't. Thanks for sharing. My name is Marcia and I live in Jefferson City, MO.

Anonymous said...

Hi, We don't know each other, but I came upon your daughter's site because of a friend on caringbridge who was linked to a friend of yours. First, I pray for you and your beautiful family each and every day. My background is working with children with special needs. I admire your courage, strength, and love that it takes to share your amazing family and its trials and tribulations. Your site is very informative and gives all the "prayer warriors" out there a glimpse of how you live day to day. Kudos, and continue to advocate for your daughter and stand your ground. People are naturally curious and want factual information. PS I don't know if your school system has one, but we have a parent advocate who is part of our special services department. She helps mediate and enusure that our children get exactly what they need and also helps teachers/paras/etc learn about each child's needs (such as feeding tubes, etc.) As I shared, I teach students with special needs and I think the teachers that are working with your daughter are missing one thing. A parent hugged me the last day of school and said thank you for opening your heart and loving my child as much as I do.

Nicole said...

I don't think I've ever commented on your blog before but I've been following your blog in my reader for several months. I just wanted to say that I never, never, NEVER would have thought of you as exploiting your child. I know I don't know you in real life, but everything I've read on this blog shows that you LOVE your daughter so much and want nothing more than her health and happiness. I'm sorry you are going through all of this. It is nothing short of ridiculous. You have done nothing to deserve this. I wish they would get busy investigating some of the real abuse stories out there. There are so many children out there that need help from abuse and neglect but Makenzie isn't one of them! I hope things get straightened out soon!

Shari said...! I came over from Jaxson's blog. I don't know what to say other than made me disgusted! Out of everything I have read on this blog you are a Momma to a child with a g-tube. How can they misconstrue all this? I don't get it.

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