Tuesday, November 29, 2011

Gray Matter Heterotopia

Yeap that is what I said.... Does any of you know the meaning??
Yesterday I took Tayson down to good ol' PCMC to see the neurologist. We were talking about possibly tappering him off his seizure medication. At which time she suggested an EEG of his brain to see if there was any change in his seizure activity.. Well she called today and said in fact he shows EXTREME seizure activity one the right side of his brain, which explains why when he did seize it was on the Left side of his body. That night 2 years ago was HORRIBLE to watch his little body seize and we we do NOT want that again!!!! So we are keeping him on the current dose. But while we were there Dr. Neilson explained that when he had his MRI a while ago it showed that he has GRAY-MATTER HETEROTOPIA. It is were when the brain develops that not all of the cells develop correctly and cause a gray look to them, where Tayson's is located on his brain is on the Right side where the seizure activity is prone too. It is also on the part of the brain that controls speech and motor skills. So we will continue treating the EPILEPSY part of it and as progression takes place on his brain we will go from there. Of course this is also promptly a "BOY" disorder,, it is also seen in girls BUT not a severely. So I will continue to research a NEW clinical term and see what I can find out and when I do I will continue to share with you.
I am thinking I should find a new career in NEUROLOGY!!!-LOL

Otherwise everything in WYOMING is busy, busy, busy.. Lots of School Christmas Programs coming up!!!:O)

Saturday, November 26, 2011


Today as I reflect on the last year I am thankful for so many things.
Some are small and some are big, but non the less I am thankful.
I am thankful for my little family and the trials that we face each day without them I would be lost.
I am thankful that at this time I am able to stay home and just be a MOM!!
I am thankful that I live close to my Family and for their support.
I am thankful for my husband and what a hard worker he is (sh.. dont tell him)
I am thankful that my Dad and Brother in laws are the family entertainment so often.
I am thankful for all of my sisters in their own special ways I love each of them so much.
I am thankful for my Mom for teaching me patients and love and for being so wonderful.
I am thankful for Toree and her love for life and they way she smiles and rolls her eyes at me when I try to kiss her. And for the fact that she and I have gotten so close, she is a GREAT kid.
I am thankful for Tanner for all that he has thought me and continues to teach me each day, and for his hugs ( they well knock you right over if you are not ready for them).
I am thankful for Tayson, for the fact that he doesnt ever leave my side. For the way he loves his brother and sister unconditoinally.

There is so much more that I am thankful for, but I think you get the idea.. Each one of us have so much to give thanks for at this time of year.. It is a GREAT way to start the Holiday Season!!!

Tuesday, November 22, 2011

It is a new day !

On Sunday I was able to go with Paul and Tanner to Tanner's Priesthood Preview. I can not believe next year at this time he will be able to pass the sacrament at church. (where did that 12 years go). Anyways as I was watching the other boys do 12 year old things it made my heart sad. Sad for the things that Tanner just doesnt get at his age that he should. It mad me sad for the things he may never get to do or understand. It made me sad, SAD for me NOT him I think.
I almost feel guilty writing this blog. Maybe I only felt sorry for me because I saw what Tanner WAS NOT doing instead of what he was doing. I feel selfish now writing that I felt that way.
I wonder often sometimes TOO often if you ask Paul. What will happen if Im not here. Well they know that he cant tie his shoes, button his suit shirt, wipe is own ( well you know where I am going with this). So I ask myself lately do I feel sorry for ME ?? No mother is suppose to feel that way. But I wonder will he ever go to prom, get a drivers license, kiss a girl, go on a date. These kind of things NEVER crossed my mind before, but he is getting older and NOW this is the questions that I have to look forward too..

Tuesday, November 15, 2011

A day with AUTISM in OUR house.

PLEASE forgive the lengthy post.. I just had to get some information out there!!! I thought this was the best way to share my feelings for the day and the last few weeks.. BE prepared it a long post!
Sometimes it is so hard to explain PDD/NOS. This is what Tanner has OFFICALLY been diagnosised with from a number of Doctors, so it MUST be true... RIGHT?????
PDD/NOS is one of the 5 main diagnosises on the AUTISM SPECTRUM!! And believe me I have fought some pretty good fights with professionals- We will call them teachers (just for fun)-
Well last night I was reading and came across this GREAT explanation of what exactly PDD/NOS is so here you go..... READY!!!!
PDD/NOS is...
just a way of SUGARCOATING a diagnosis of AUTISM.
You can call it what you want, but your son has AUTISM!!!!
There you have it.. Straight from the Doctors mouth.
Now if I could just get the rest of the world to understand.
NO Two Children are the same. Everyone with the diagnosises of AUTISM is different!
I personally know of 5 different children that are all diagnosised with PDD/NOS and everyone of them have differnet traits of the spectrum.
As hard as it was for me to come to the grasp of this with Tanner as it is with all parents I think the hardest part for me was when the Specialist told me he also had MENTAL RETARDATION!
That has not ever been an issue. But to actually have that as a diagnosis made everything so REAL. I had always wanted to be a SPECIAL ED. teacher. STILL DO!!But to have those needs in my house everyday 24/7 was really a shocker.
I watch my boys as they are getiing ready for bed. Tanner is 11 and Tayson is 4.The steps in which it takes to get tanner ready for bed TRIPLE what it takes to get Tayson ready. Everything with him is a process. A process of setting every thing out to actually physically doing it for him. The difference MANY people would never have known had I not shared it with them. Tanner functions at a 2-3 year old with his daily living skills in an 11 year old body. He reads at a beginning preschool level. Math, writing, speech are very well controlled with teachers and people watching out for him. Helping him solve the simplest of problem can cause a meltdown.
I wonder if he will ever be able to care for himself?? I wonder if when I am no longer able to help him--WHO WILL?? I wonder if when he is at school do they know he is unable to wash his face without verbal and sometimes physcial prompts... Do they know these things?? Who will tell them, he can't he doesn't understand....