Neurology Update

On Monday we had our EEG.
I was able to get us out of the 24 hr. Video EEG stay. We just had a prolonged EEG
(4 hrs long).

The prelimiary results of the EEG was that there was an occasional spike but no seizure activity.  His background was between 5 and 7 which is slow for his age but is expected because of the brain malformation.

Yesterday we had our 6 month recheck with Dr. C., our neurologist.
And I'll tell you again, like I do every time I see him. I love this doctor. He ALWAYS has something good to say about Daniel. He takes his time with you and will answer whatever questions you have. This guy in my eyes...is the God of neurology (for the things Daniel goes to him for). I always leave with a good feeling. He believes in Daniel like we do. He KNOWS that there is something there.

I can tell him how Daniel scoring high on the receptive language and he'll say "Well I knew he'd do that", or how he is doing something in physical therapy and he'll say "Well sure he is, did you think he wouldn't?"

Unfortunately we weren't able to see our favorite nurse "Ms. Kathy" as we visited at an off site location. But we did see our favorite resident dr. along with Dr. C.


So as of right now, we are sticking with what we are doing.  500mg of Vigabatrin 2x a day with VEP/ERG testing every 6 months (which will fall in July) and in 6 months another EEG.
According to the doctor 500 mg for Daniel size is on the low side but because its doing what it needs right now we are not looking at changing it.  I get nervous because there is the chance of vision loss with the Vigabatrin, but it is controlling the seizures.  And who knows if we'll have such luck with another anti-seizure medicine...and what are the side effects of those?

He also planted the seed of surgery for Daniel's drooling.  Although it is control with Robinul currently, he said we'd be able to get rid of the medicine and the side effects that come with it.  Another thing to think about....but sheesh, I hate surgeries.

Block Party?

I think NOT.
We'll start off with the state of the street I live on.
For the next 5-7 weeks this is what we are dealing with.



This is what sits in front of my driveway. What a beautiful thing to see out the window eh?
But from a little boys perspective, it is so very exciting.



So exciting that you are able to talk your big sister into taking you up close to the trucks!
And even walk down the middle of the once cement covered street to the other big trucks
Now can you tell who is happy about the street being torn up? Yep....the little boy who likes to watch the trucks all day long!

We obviously don't have access to our driveway, which means we have parking on other side streets and have to haul all supplies plus Daniel in one trip to the car. Its a heavy load.

You think maybe one of the big trucks can give us a ride one day?

Beautiful Weather....for most

It was a beautiful weekend wasn't it? For the most part. There were a couple thunderstorms, but I also think those are beautiful. I love nothing more than a really good storm.

The one thing that stinks is when its warm Daniel can't be outside for more than a few minutes. With the medications he is on, he can't sweat. This is dangerous if not carefully monitored. So we try to get out before it gets too hot, or if it is hot, we keep it short and sweet.
We went for bike rides this weekend. The child LOVES being outside.

Notice the pointer finger coming out to ring his bell.

Here I'm asking him if he wants me to take off the rubber duck that squeaks. He is making his sign language face for "bird" which can mean ANY type of bird with a beak! I can list off animals and every bird that I name I get the same face....cracks me up.


This is in the car, I had to bribe him into going to the store to get off the bike. It doesn't show here but his face was beet red. Looked like heat stroke was gonna happen at any minute. Air conditioner was on Arctic blast

Apps for iPad - Children's Books

Here are some books that seem to be pretty cool. They are for younger kiddos.
One that is really cool is the Story Kit. This lets you build your own stories, and you can personalize and put your children into the story.

I will be making a "Potty Story" for Daniel.

Children's Books

• ABC Dinos A dino name is read and shown on each alphabetical page

• Brave Monkey Cute story that is automatically read to you. Does not highlight
  

• Binky A story about an elephant

• Buddy #1 Story about Buddy the Bus and where he takes people.
  

• Bugs Real photos of bugs with the text that is read by touching

• Cat in the Hat Interactive book that you can read or it reads to you

• Curious George B-day Interactive book discover George's b-day surprise as you listen to the story

• Dr. Seuss's ABC's Interactive book

• Goldilocks Each word is highlighted as it is read to you

• iLook High Contrast, white on black picture book w/5 caregories (animals, food..) for young children

• Miss Spider Animated story that reads to you

• Sesame Street Playground Allows you to change some settings and record your voice

• Story Kit Easy program to create your own stories by adding in photos, text & speech. Could use for social stories and schedules.

• Trucks Simple story book that names and shows the text of the truck as they are touched.

Let me know if you know of any other cool stories to use on the iPad.

One thing I have noticed with Daniel. He is vocalizing more when using the iPad. He "answers" and touches at the same time. Pretty cool if you ask me!

Apps for iPad

Here are some of the apps that Daniel is using on his iPad.
Some were free or we are using the "lite" version and some obviously were more, but not horribly bad.

Early Academics

• ABC & Me Works on learning ABC's and basic words through various games
• Dad's Gift Colors, shapes, numbers and early math
• In The Zoo Alphabet learning using sing a long and flashcards
• PreK Safari Letters, numbers, colors & shapes with flashcards or touching the items asked
• Preschool Adventure Includes 8 simple activities you can do with young toddlers and preschoolers
• 123 Animals Counting Touch 40 different animals with sounds to see and hear numbers counted
• Five Little Monkeys Musical Counting game with toys that react to touch. Can sing in rock, country or pop modes
• 300+ Sight Words Sight words for Level 1 to 5 and Nouns 1 & 2 with text only that can be read to you
• ABC Animals Interactive animal flashcards with audio that provide the letter name, associated animal name and the phonetics
• Alphabet Animals All 26 letters in interactive flashcards that make sounds and animations when touched

Mind you all apps are right for all kids. I find the ones that Daniel can see cause and effect with are good. Anything with music and such. So these are just some suggestions...

I will post more as I find some. Let me know if there are any cool ones you like too! And Free ones are sometimes better that the purchased ones!

There are also a ton of YouTube videos out there for children's read along stories and songs. I suggest you watch the whole thing before you download it for the child...sometimes some buttmunches like to throw something in the middle that isn't appropriate!

Enjoy!

iPad for Special Needs

Hey there!

I'm sure you guys are probably sick of hearing about the iPad but I gotta do this.
We got one for Daniel. The minute I heard about it way back when I said I wanted one. Daniel has limited movement of his hands and arms, so has difficulty with the iTouch. So we needed something with the bigger screen. He has his PRC augmentative device which is very nice, but I wanted something smaller and lighter for him to be able to use quickly and on the go. Plus, I like to give him as many options for speech as possibly.

So for Mother's Day I asked for the iPad for Daniel. :)
Let me tell you, the kid is amazing me every chance he gets.See that pointer finger popping out? We've had Daniel using it in many different positions. In his stander, sitting on the sofa, while in his walker. He LOVES this thing. It gives him a voice, it gives him a feeling of success. He is able to make his choices ALONE.

He is able to change between the apps. He knows what "games" he likes and which ones aren't his favorite. He has even set up a play list in i-tunes (I don't know how he did it but he did!)

Here's a little snippet of a video - we had to stop because he realized I was taping him and then well....he started to ham it up! Now mind you he doesn't do alot in the video but the fact that his pointer finger is out and that he put the first three letters in the correct spot to spell CANOE is BIG BIG BIG to me.



If anyone is thinking that they might possibly want one of these who has a child with special needs...or not...I recommend it. (there is my free advertising for Apple - not that they need it!)

In the next couple days I will be putting up a list of Educational Apps that I have. We have only purchased a couple apps and the rest have been free ones.

Talk about overwhelming

Ever have a few weeks where things just seem to be spiraling out of control?
Feels like a tornado hit your life?Yeah? Me too! And I just got smacked upside the head with flying debris


Sometimes it feels more like a roller coaster ride. Has its ups and downs
Just a brief recap for you and then we'll move on and hopefully pick up the pieces

Read the following quickly, without stopping and as you'll notice its a complete run on of a sentence(so Lonnie don't edit it, its meant to be like that!)....you get my drift.

Daniel went back to school, got sick, got better, sleep habits for him are horrible - up hours though the night- misses school, I get sick, go into the hospital, now I have weekly treatments, Daniel gets sick again, Lonnie hates work, keeping up on house is the last thing on the list - you can only imagine what it looks like, Daniel got an iPad - and he rocks at it, my little business is thriving, doing a huge craft show in September getting ready for that Therapies, doctor appointments, new therapy consultations, missing school (oh wait I said that already) but we just can't stay healthy, or awake Daniel saying a lot of new sounds and words Brittany home from college, Victoria prom going to be a senior next year, Caitlin new job and Alexandra new job two flat tires in one day dusting off resume and updating for September when Daniel does go to kindergarten full time and I will go to work (OUTSIDE) the house, cause I work in the house currently as a therapist, driver, nurse, scheduler,cook, bookkeeper and oh yeah housekeeper (which I think I might get fired from soon considering the state of my house currently)



Do you feel like you're caught up in a tornado too, been on a really big roller coaster? yes? Welcome to our life!
Duck, tuck, and roll with the punches and come along for the journey!