Just Because

Here is what we look like today....

Here is what we looked like exactly a year ago....
Still cuter than all get out in our stripped shirts!! I don't think he has aged much...but he is definitely heavier and longer!



We were asked the other day how Daniel tells us 'yes' and 'no'.

My response....watch his face...NO

YES!

Did you catch that? I am still trying to work on the head shaking but I so much like the smiles and pout-pout lip!!

That's All Folks!.......

Holidays Stress Me Out

I don't think I've ever really gotten into the holidays much as an adult.
Its not that I don't want to spend time with the family and stuff.
Its all the gifting and crap that goes along with it.
I just think it is way to "what big thing did I get", and spending way too much money.

No matter how much you get it always seems like its never enough or as good as what someone else got their child.

I am more of a simple person I think. I grew up in a large family and you got a couple things and life was good. I don't remember Christmas days too much as a child, but I also don't remember being disappointed either. When we became a certain age and were out of the house, then you graduated onto getting the homemade candy and cakes my mom would make only at the holidays. Each adult child got a slab of toffee candy, a coffee cake and a caramel candy roll. Life was good. If you were a grandchild, you got a handmade Christmas ornament made by grandma and some dollar amount. With a family the size of mine, the holiday wasn't so much about the gifts, but the time spent with people that aren't going to be around forever.

Well since my mom passed away, I have been attempting to make the homemade toffee (never to be as good as hers!) for my family.
So instead of spending time at the stores, I like the simple, hand made stuff.

Here are a couple of the cool things I just love and wish other people would get into also, and realizing so much more went into it then running to a store and grabbing something off the shelf! My house is filled with little knick-knack things that were made by someone or put together with thought.

What happened to the holidays meaning spending time with family and recognizing what the holiday meant? Now a days, its more about how much farther in debt you can get. I hope to pass along what my mom did to my children.

For the jewelery wearing girl in the house
(excuse the dry scaly hand!)

for the little guy whose afraid of monsters - the night light that keeps them away

For the winter season - Mr. Snowman

For that baby that just joined the family

For the big girl who still likes to be a little girl and wear fun hair clips!

Do you have anything special that your family does? A tradition that you hope continues to get carried on that doesn't buy into the commercialization of the holiday?

Relocating?

Ok so I need all of the people who read this blog (hopefully you're still coming to visit) that have a special needs child to comment on this post.

If I could possibly move to whatever area in the US

Here are the questions:

What is the best area to move to for a special needs child?
Which state programs are better?
Which schools are better, hospitals/doctors and therapist?
(If you can give me the program names so I can inquire)
What is the cost of living like, the job market?

Even if you have never posted a comment before, step outside the box, and speak up....I need voices here...

You can post without having a blog on your own, you can keep your name to yourself, just give me your opinion.

This is all of course just hypothetical right now, but if for some reason in the future I need to know...plus I'd like to know if people are still coming to visit here! ;)

And IF you have done this yourself, what was the experience like?

Thank you!

Doctors Appointments

From early this week I said we had a busy week. This is how is started off- I need someone who works in the medical field to explain to me, WHY does it take so frickin' long for the doctor to come into the room?!?! This week we had an appointment with our wonderful neurologist (seriously I love him), but instead of going into the hospital we visited him at one of his off site locations.
When I scheduled the appointment I got the FIRST appointment of the day. Thinking I'd be smart and we'd be outta there quicker than you can blink your eye.

Nope. Didn't happen. As luck would have it, I was unaware that they schedule you like cattle on the off site location and there were about 10 other people scheduled for the same FIRST appointment I had!. WTF?!?!Well because I like this doctor so much I didn't put up much of a hassle. But for future reference and note to self:
BRING the frickin' wheelchair...even if you think its too cramped or crowded or you think it will be easier...it will NOT be. BRING THE CHAIR.

Holding a 4 yr old on your lap who does not want to be on your lap, in an small over crowded waiting room with the heat blasting at lets just guess a warm tropical 101 degrees...makes for a very uncomfortable wait! Then he heat gets even better when they do finally call your name and the then move you to the "hot box" as I like to call it. The room where you get to sit and wait yet again but with the door closed so you have your own personal sauna!

Anyhow, onto the actual appointment. Seems because I'm not all that smart when it comes to reading the medical terminology since Daniel's diagnosis of Congential Bilateral Perisylvian Polymicrogyria, every report I've attempted to read and question, we've always come back to the easiest answer: Well he has a malformed brain and its CBPP. So I've always done my research on just that.

Well guess what I learned (and yes I feel like an ass) Daniel also has another malformation that I was unaware of but it is secondary so I guess why bother pointing it out or explaining it right, there is no changing it.

So lets add to the diagnosis: Cortical Dysplasia
So is the epilepsy from the cortical dysplasia or the CBPP? or does it really matter at this point?

Then another little tidbit of information I got from this appointment by the resident that comes in with the doctor. That a high percentage of children with CBPP (Now mind you CBPP is very, very rare and when Daniel was diagnosed there were only about 60 known cases in the US). Anyways as I was saying a high percentage of those children end up with the diagnosis of Autism.

Now I don't know squat about Autism expect that it is a broad spectrum and that generally the kids aren't sociable, and there are different levels of severity just like cerebral palsy.
Thats the extent that I know of it. But still I was like GREAT, another thing to add to the endless list. Well he followed up the study with he strongly believes Daniel does not fit into that category because he is indeed very social, outgoing and has awesome eye contact. But regardless of that....you know what two things I'm research now right?!?! Just to make sure?!?!?

Even with all that, it was a nice visit and I always leave there feeling uplifted. He always goes on and on about how well Daniel is doing. How high functioning he is comparatively speaking of other children he sees with PMG.

He said they recently did a study of 8 children with the same brain malformation that Daniel has. All 8 children had MRI's to see if a certain area of the brain was developed (this arc for speech).
Daniel was part of the study. Of the 8 children five of them had none of the arc present in the brain. The other three had particle or full arc. Daniel having had the least of the three with arc.
He said Daniel is the only one with the most "talk/babble", he was considered the highest functioning of all 8 children cognitively and with speech.

This is a good thing. I am happy with that.....

BUT this cerebral palsy crap sucks!
so I always ask....What else can I do to help him with the CP?
I dont know why I ask because I always get the same answer....continue doing the therapies, Daniel has the desire you can see that, and he wants to walk, we just have to get his upper body talking to his lower body!

Oh btw-totally off subject but I'd like to win :)


April Showers Blog Design is having a HUGE giveaway and celebrating her OPEN waiting list that starts January 1st! April not only does blogs - but also invitations, announcements, calendars, cards, business cards, custom illustrations, and so much more! Just by pasting this paragraph on my blog I'm a winner! www.aprilshowersblogdesign.com

The Mags Winners....

Well I was hoping for more of a turn out for people wanting the magazine subscriptions! But I suppose because I haven't been the best blogger as of late, people aren't checking in as much, or we have just become boring!

But thankfully we had a few people sign up and Daniel randomly picked two numbers with his stars that we were counting this week and here are the winners.

I just need for each winner to send me their address via email with the subject MAGAZINE WINNER to mspranger(at)wowway(dot)com
so I can get that started for you!!

The winner of Family Fun magazine-
Kristina said...

I love to take the girls to the museum on rainy days! We usually go to the natural history museum as it's just the right size and age for them!

The winner of Kiwi-

Anonymous said...

I would love to win a subscription to Kiwi magazine. My 12 year old daughter is very socially conscious of what she eats and has helped us be aware, too. She found out about the way animals are treated that are grown for food, so we now only eat organic or "happy" meat! We love to cook and bake together.
Lori with the sbcglobal addy

Thanks again for posting your comment and I am sure you will enjoy the magazines, I know I do~

All I Want...

All I want for Christmas (or sooner would be wonderful)
Just in case anyone was wanting to get me anything special ;)

Two days away by myself
A quiet hotel room with a huge big bed & room darkening window treatments
A fan (for background noise...I need something)
A nice bathtub with endless supply of hot water
A big vat of ice cubes (not the homemade kind)
And once each day to get a full body massage-the works, lasting at least an hour
(IN THE ROOM - I don't want to have to leave)

Something like this but not mind you it doesn't have to be exact....these are just examples.

and if not asking too much....a manicure and pedicure?

SERIOUSLY!! Thats it? Now simple is that?!

Week Two Lesson Plan

Well better late than not at all! Here is Daniel's lesson plan this week.

We've had an interesting week, but no time right now to post about it. I just read that last sentence and giggle because its only Tuesday and I say its been an interesting week! Well it has indeed....and there is more to come! Busy- busy week!

Wanted to say thanks to everyone who sent me ideas or posted ideas on how to improve Daniel's lesson plans. I am taking those into account. We do incorporate more things into the day besides what is written above, but the chart above just gives me ideas when I'm standing there going "Duh?!"

Daniel is really making some strides in certain areas. Happy Happy Joy Joy! I'll post more later, now I'm going to try to go to bed at a reasonable hour!

Twinkle, Twinkle Little Star

Twinkle, twinkle little star,

How I wonder what you are.

Up above the world so high,

Like a diamond in the sky.

Twinkle, twinkle little star,

How I wonder what you are.