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.

4paws and the New York Times

Last week the New York Times did a big article about 4pawsforability. The really cool thing is that this article is about the very first FASD service dog and his family. It also talks about 4paws and its founder Karen Shirk. This article is really awesome so I'm posting it hear - please take the time it is well worth it.

http://www.nytimes.com/2012/02/05/magazine/wonder-dog.html

Hopefully it will bring some additional understanding of Kennan and his struggles as well as what kinds of things our service dog would help him with. Also take time to watch the video at the top of the article - it talks a little bit more about the training of these dogs and placement with kids!!! :)

Seeing the Report!

Thursday, I got to see the official report from the Geneticist for the first time. It verifies that all the general genetics test came back normal. It lists the physical findings that support a possible diagnosis of an FASD and lists confirmation of known maternal drinking during pregnancy. It stops just short of an official diagnosis of FAS/ARND. Largely because they are still waiting on the documentation from the Endocrinologist. I have a call into the Geneticist's Office to see what steps are next. We know that they will include a pediatric Dietitian, another visit to the Endocrinologist, a Pediatric Behavioral Specialist, another visit to the Geneticist, and continuation of our Occupational Therapy sessions. What other recommendation they have will be discussed when they return the call - hopefully on Monday. Each day is a new adventure! Some more exciting than others! :)

Two Minutes!!!

Two minutes - that's all it takes to go from neat and tidy to absolute chaos. From being able to see the floor to no where that you can stand with out stepping on something.

Now some of you may think this is pretty normal for a kids bedroom- and for many kids it is (think my twelve year old). But for Kennan a messy room is not. Given his sensory issues it is imperative that we keep is room clean and orderly. This kind of chaos is beyond what his senses can tolerate and we work with him to keep his room relatively clutter free. But in the middle of meltdown mode all bets are off. And that is exactly what happened today. I would not let him do something he wanted and he caved. Toy bucket and toys launched. Clothes from the drawers and the closet flung in every direction until the floor was covered and last but not least blanket, sheet and pillows yanked from the bed. And believe it or not this was minor compared to some of his rampages. As I said - two minutes - just two minutes is all it takes.

Hyper - Drive

Kennan kicked it into hyper-drive all day yesterday. Church was a real struggle. He was hyper focused on the fact that his vest had been inadvertently left at home. We explained that we could get the vest for him after our main worship services. But to no avail. He honed in on that vest and wouldn't let it drop. And just for entertainments sake he has added a new weapon to his arsenal -spitting. How pleasant is that? There are nice calm ways to stop things like hitting, kicking, pinching etc. But , I have yet to find a really effective way to deter him when he starts spitting.  But some how we survived it. He was however still in over drive when we got home. Rocketing around the house full speed, screaming at the top of his lungs, completely unable to sit still. The plus to all this is he crashed at 9:15 instead of his usual 10:30 or 11:00. :) Oh, happy days and blessed peace!!! :)

New Pages

Many of you have wondered about the different diagnoses that Kennan has been given. What are they and how do they relate. I have created several new pages: the links to each of these pages are listed at the top of the blog under Kennan's picture. If you click on each of the links you can read more about ARND; ADHD; ODD; SPD/SID; DBD; and CD. These disorders can occur individually or be co morbid(coexist) with other disorders. Many children with FASD have been diagnosed with one or more of these: either in error or because they are co morbid with the FASD. There are a number of other disorders that these children can also have. I have selected the ones that relate to Kennan.

The End-o!!!!

Thursday we took Kennan to see the pediatric endocrinologist. She told us that the two test that had come back slightly above normal were not at a level of concern. She is still waiting for a copy of the x-ray from the geneticist's office. But more or less ruled out the two syndromes that the Geneticist was still concerned about. She diagnosed Kennan with a disorder that causes his body to produce too much insulin. It is the opposite of being diabetic (although in the end he could become diabetic). Because his insulin levels are almost always raised it means he is constantly hungry. When he eats his body registers this and causes the pancreas to produce even greater levels of insulin. Thus a vicious cycle commences and the body gets far more food/nutrients than it needs or can use. So the end result is weight gain - usually quite a bit. These kids usually end up being obese at an early age. And it is nothing that is their fault or that can be completely controlled. Plus there is no cure.
She also told us that you usually don't find an exact cause - there are many different possible causes. These can include family history of diabetes, gestational diabetes, biological mother being over weight during pregnancy, diet/nutrition during pregnancy, high stress levels during pregnancy, lack of proper medical care/vitamins during pregnancy, exposure to alcohol, nicotine, cocaine (other drugs) during pregnancy, general life style, and plain old luck of the draw.  Since we have limited knowledge of family history there are several factor we can't get a good handle on. But there are also several that most likely added to his risk factors such as: high stress level during pregnancy, lack of prenatal care, diet/nutrition during pregnancy, and prenatal exposure to nicotine, alcohol, & cocaine.
The visit also means that an FASD diagnosis is very likely now. Since just about everything else has been eliminated. Which is both good and bad. Good because we know what we are dealing with (not that we didn't before) from a medical stand point and can seek appropriate helps/treatments. The bad is that there is no cure for an FASD. It's permanent. Also bad because it is 100% preventable.