Tuesday, April 24, 2012

What is FAE?

When we took Kennan to see the behavioral specialist he told us that we were devefinently seeing some FAE. Now in the grand scheme of FASD the acronym FAE is becoming obsolete and being used less and less. In newer terms these children will often be listed as having ARND. Just a new way of saying that the child is living with the consequence of being prenatally exposed to alcohol. However, there are people out there who still use it. So what is FAE?

Definition: Fetal Alcohol Effects (FAE) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAE are not as obviously impaired as children diagnosed with Fetal Alcohol Syndrome (FAS) -- they usually lack the distinctive FAS facial features and have normal IQs -- and so FAE is sometimes described as less serious. Sadly, however, children with FAE are in fact more likely to have negative outcomes such as trouble with school, trouble with the law and teen pregnancy; the fact that they look "normal" but can't behave that way due to brain damage causes them to face unrealistic expectations without appropriate support, which can have serious repercussions for these children and their families. The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."

Definition: Alcohol-Related Neurodevelopmental Disorder (ARND) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb.
Also Known As: Fetal Alcohol Spectrum Disorder, Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Delays, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure

Definition: Fetal Alcohol Syndrome (FAS) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAS have distinctive facial features that identify them as having alcohol-related damage, including a small head, flat philtrum, droopy eyelids, flat nose, and a face that looks a little bit too big for the head. Children with FAS may also have low IQs, but not always. Individuals who have been exposed to alcohol prenatally and have fetal-alcohol-related behaviors but not the facial features may be described as having Fetal Alcohol Effects (FAE) or Alcohol-Related Neurodevelopmental Disorder (ARND). The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."

Definition: Fetal Alcohol Spectrum Disorder (FASD) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb. A number of factors, including how much the mother drank and at what point during the pregnancy, can influence the severity of the impairments and what functions they most affect. Children with FASD can display symptoms of ADHD, autism, Asperger syndrome, Tourette's syndrome, epilepsy, mental retardation and various psychiatric disorders, but will often not respond to traditional treatments for those disabilities.
 FASD was formerly referred to as Fetal Alcohol Syndrome and Fetal Alcohol Effects, but the new designation better indicates the range of abilities and disabilities experienced by individuals exposed to alcohol in utero.

Also Known As: Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Disorder, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure.

Alternate Spellings: Foetal Alcohol Syndrome, Foetal Alcohol Effects, Foetal Alcohol Spectrum Disorder.

So at this point the Geneticist is saying most likely FAS and the behavioral specialist is saying FAE. Who's right - they both are.

 Either way he has disabilities caused by the prenatal exposure to acohol. On a practical note we would like to see the diagnosis of FAS because it is the one that will allow him to have access to greater services.

Monday, April 23, 2012

Bissell Centre FASD Music Video

I realize that for many people this isn't your style of music. But for Kennan and hundreds like him I want to spread the message their is no safe level of alcohol when you are pregnant!!

Thursday, April 19, 2012

Thank - You !!!!

We just wanted to send out a great big Thank- You to all our friends and family in Utah that participated in the Chick-fil-a fundraiser on behalf Kennan. We appreciate all your support and hope you will pass along our thanks to all of those who you know (that we don't) who came to support our efforts to get Kennan his service dog. I don't have a complete total yet - but with the numbers we do know you added ~ $225.00 towards Kennan's dog. Which puts our total at about $2,187.00. We are moving those numbers up!! Thank - you to all of you once again. :)

Wednesday, March 28, 2012

Happy Birthday Kennan!!

Eight years ago today! Kennan was born. We are so Happy that he is a part of our family. He has taught us so much. And we are blessed to have him!!!



Happy 8th Birthday !!!!

Wednesday, March 21, 2012

Layton, Utah Fundraising Event !!!

For those of our family and friends that live in or near Layton, Utah my sisters and brother-in-law have organized our first fundraising event - here is the info from one of their facebook pages. If you live in this area or know some who does please pass the word along and stop by Chick-Fil-A in Layton to help us in our fundraising efforts for Kennan's dog. Remember - everyone has to eat!! :)  Every dollar counts and we appreciate all who have contributed to this point.

"We are starting the fundraising... April 16 we will be at Chick-fil-a in Layton on Antelope Dr. from 5 to 8. Anyone who stops in and mentions Kennan or Spirit night when they order will be giving 20% of their order to Kennan for his service dog. You must mention SPIRIT NIGHT OR KENNAN's name in order for Chick-fil-a to give 20% to him. Please come in and support us in this effort." 

We especially want to thank my sisters and brother-in-law as well as Chick-Fil-A in Layton for organizing  this fundraiser on Kennan's behalf!!

Wednesday, February 22, 2012

Updates!!!

It has been awhile since I posted. We have been crazy busy here. We finally received a call from the children's hospital and in the middle of March, Kennan will be seeing the pediatric behavioral specialist there for the first time. We understand that this hospital has a really good program for alcohol/drug exposed children. So at long last we hope we will be able to  get him some appropriate helps. We will also be seeing the pediatric dietitian that day and hope to get a better idea on how to help him successfully manage his weight. And last but not least we will see the pediatric endocrinologist again to monitor his growth and make sure his body does not release all of his growth hormones to soon, causing him to be shorter than he should be for the rest of his life. It will be a long day but we are hoping that we have finally turned a corner on some of his health care needs.
As for working towards our fundraising goal we have made it to $1,610.85. A big thank-you to all of you who have donated so far. To all of you who I know have contributed hopefully a thank-you card will be in the mail soon. And to those that have contributed but I don't have your name - a big thank you also.
As we get a fundraiser put together we will keep you posted - and thanks again for spreading the word.