Saturday, April 30, 2011

365

I am so proud of this girl!


I am normally not a person who anticipates a date but  I have been excitedly waiting for today to come for weeks. 365 days ago I broke Makenzie's last J tube button while taking her out of her wheelchair. 365 days ago Makenzie began to eat through a G tube again for the first time in two years. 365 days ago most of her doctors believed we would be back into the Interventional Radiology department sooner then later for a new J tube placement. 365 days ago my God and Princess Makenzie had different plans.

As many of you know feeding Makenzie has been one of the most difficult parts of her recovery. From April of 2007 until February 2008, Makenzie spent most of her day puking any food I put into her. She did not gain any weight in those nine months and was considered Failure to Thrive (FTT). So in February 2008 we decided to bi pass her stomach and go straight into her intestine using a GJ tube. Makenzie was fed this way for over two years and began to gain weight. In fact at times she gained too much weight.

However, there were many downsides to feeding Makenzie through a J tube. The first was the amount of time it took to get all of her calories in. In the beginning it took 20 hours a day leaving her only four hours off the pump to have therapy. Lugging that pump and tubing around all day was not fun. The second was the amount of radiation and anesthesia Makenzie was exposed to in order to thread the line into the right place every 3 months. Also not fun nor healthy.  

(if you have no clue what a g tube or a j tube is you are not alone! Check out the video I put in this post 365 days ago to help explain the differences)

365 days ago Makenzie and I set out to show the world again that miracles do happen.

The day when I put the G tube back in and let food enter Makenzie's little stomach for the first time in 2 years, I had no clue what I was in for. I had no clue I would be accused of not feeding my child right. I had no clue I would be asked to question my ability to know what was right for my daughter. I had no clue what it would be like to be told I was exploiting or hurting the little girl I had been fighting so hard for with every single breath for almost 3 years. I had no clue how many tears I would shed.

You see though, I guess that makes this day even more sweet! Today marks one whole year Makenzie has been G tube fed. In this year  Makenzie has gained weight on a blended whole food diet, learned how to control her gagging, is fed three times a day for a total of 3 hours instead of 20, she has not been exposed to any radiation, she had a complete blood panel drawn which showed no nutrient deficiencies, and has not had any constipation issues!

 Makenzie still has reflux but it is under control. Meals are now just that ...... meals. They are not puke feasts or panic attacks. Making her formula is now a science and it feels so good to know Makenzie's body is being nourished by real food.

This has been quite a journey. I am sure there will be more bumps but I am saying goodbye to FTT and adios to a life that revolves around a feeding tube.  God is soooooo good! What a miracle!

Happy 365 day anniversary baby girl!

Believe.... Prayer Works!

1 comments:

Jenna said...

Hi Makenzie and family
My name is Jenna and I came across your site. Makenzie is an amazing brave courageous fighter and has a bright smile. She is a hero.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com

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