The Preemie Growth Project

Sharing Vital Information About Nutritional Issues for Premature Babies & Special Needs Children


The Importance of the LUCKY Diagnosis

Tracking 50 Children, As of September 3, 2012

It appears the word is starting to spread; on Friday morning we were tracking 29 children, and now we are tracking 50.

I am receiving many kind words on the videos (thank you McKinney Video!), and find myself praying for both the families who find us, and the ones who haven’t yet. The mothers I speak with sound like educated health professionals, and throw complicated diagnostic terms around with an ease that stuns me. These women humble me with words of gratitude, while I am reminded of the blessings I have been given, all undeserved….

Before I go off on a religious tangent, I have been noticing (and I updated the “Children Being Tracked” page, so it is fresh on my mind) that boys with sensory processing issues seem to be “resolving” those particular issues; I am wondering if the “micronutrient deficiency” issues identified with the preemie/neuromuscular issues will also tie into helping children with autism. I think it may be a multiple issue, with the ability to absorb the nutrients (tied in with the micronutrients) possibly impacting things. It is something that needs to be investigated, but right now, I don’t have the resources. Put it on the list of things to get to “really soon!”

Our press release is supposed to hit the wires in the morning, and my children are also starting their first day of kindergarten. It is late. I need to get some rest. I think Tuesday is going to be a long day!

My Opinion, As of August 10, 2012

It happened again today. I got a fairly condescending email from someone suggesting that a real researcher should investigate what I am saying.

In the words of my grandfather, What a Bloody Good Idea! Seriously, who would have thought of THAT? It has only been three years I have been trying to get the attention of someone who makes a living looking after the health and well-being of children to see if they could do some kind of investigation – I do not know why I did not think of that myself!

I am Annoyed. In the real world, I am a very well paid computer geek, and the amount of effort I have expended, including neglecting my own family, so other people could also be diagnosed as LUCKY occasionally makes me cringe, especially when my husband starts adding up the money we have spent.

Yes, I am whining a little. You LUCKY people who come after me, please remember these moments: if your child gains healthy muscular weight, it is because You Are Lucky. If your child starts walking and talking and playing like a normal child, it is because You Are Lucky. If the child who needed help climbing stairs is now playing on the monkey bars, or the child who could not walk without pain due to hyper-spasticity runs giggling across your living room, or the child ground his teeth uncontrollably STOPS, remember that FIXING THE DEFICIENCY ISSUES had nothing to do with it.

You Got Lucky.

Enough with my aggrieved insulted self-pity. Apparently we need researchers to validate medical text book findings. Several years from now, and probably millions of dollars in specialized funding and grants, perhaps water will be found to be wet.

In the meantime, I need to make sure as many parents as possible find out what they need so their children can get the coveted diagnosis of LUCKY.

UPDATE: Just got a very inspiring message from MH – The most difficult change happens in the mind, especially in those with a closed one. Be not discouraged for those in the darkness will fight the light. Thank you, Mike. I needed that!