Friday, February 8, 2008

A Little Bit of This and A Little Bit of That

So Daniel is recovering wonderfully from his surgeries.

We only had to give him some pain medicine twice, which is good because we hate giving him any more meds that necessary. And I am happy to report that there was no seizures from the surgery. no seizures period!

Daniel is doing really well with his power wheelchair and his drivers training is good. When you put him in the chair he immediately puts his hand up on the joystick because he knows that is how he gets "speed". We are still working on the directions...left, right, backwards......he knows forward very well and he understands stopping. From what I understanding learning to stop and getting the joystick right to the center is some was difficult. We are playing computer games at therapy with a joy stick to get him use to a joystick and also to learn that if you move it to the left you're going to go left. Daniel being as social as he is, does have some difficulty with watching the road. He is a typical boy, when a girl walks by he forgets what he is doing, and watches her.....which leads to running into the wall or turning his arm and makign the chair follow the girl. Thats a daddy's boy for ya eh?!?

Next week during his Augmentative Therapy (Speech) we will have someone comign with a piece of equipment for Daniel to test out. Because Daniel's eye gaze is so great, someone is coming out with a device that will have a laser that will read Daniel's eye gaze and select the options on the computer that he wants. I am excited by this and just fasinated that they can do this type of thing, but then scared that this might be his option. That he can't get his hands to work well enough for the fine motor of selecting the icons on the DynaVox. Anyways.....I am always willing to test out things to see what is going to be the best for Daniel. I might not like them......but if it will make Daniel's journey through communication better and easier, I'm all for it. I just don't want to give up on him using his hands also, nor will I give up on the fact that I will continue to get Daniel to say "his words" and not rely completely on an augmentative device. Like I said he is awesome with the eye gaze and his facial expressions. The kid can raise his eyebrows for "yes" like no other child I have ever met! Those eyebrows are very expressive and sometimes have a mind of their own! I love it when he is interested in something and up goes the eyebrows! SO next week I will update you on how that eye gaze equipment works. Then at the end of February we are going to have the Tango to try out. I am excited about this also as it is smaller and lighter weight than the DynaVox but I don't think its been around as much. There is another one that his therapist learned about that says looks pretty cool, called a Tellus. The graphics are suppose to be brighter and quicker on this one. So if anyone knows anything about this device please leave a comment or send me an email I'd love to hear about the Tellus or the Tango.

Lets see, where to begin..........Caitlin is doing really well at her home, still getting her house to exactly the way she wants. Alex is doing awesome with her baby Zachary (or as I call him Stumpy!) will almost be 4 months old. Brittany is doing good at college and has some really good job opportunities lined up for the summer. Those kinds that you always wish you could at amusement parks and stuff. So she just h as to decide what she wants to do. Victoria, as usual....our brainiac child. Loves school and is doing so well as a freshman in many AP (advance placement classes) and still getting a wonderful grade point average. And then there is the little one (who isnt' so little anymore) Daniel......and well you know how he is doing.
Lonnie is doing well also.......he has been dieting and has lost almost 20 lbs. YEA for Lonnie. His birthday is also coming up this next week......the big 38!

As you might remember from a couple months ago, Lonnie reminded everyone of the all important...BACK UP YOUR COMPUTER. We just now got our hard drive back from being repaired. Now mind you normally when someone tells me its going to be 100's and 100's of the precious greenbacks to save data I would have told them to fly a kite..............but this time we had no choice....that hard drive had 1000's of pictures of family and also documented all of Daniel's life up until it how could we say no? Just sucks the amount of money that we had to pay, but we have pictures.

Well, I think I am coming to grips with the fact that Daniel will be attending preschool next year. Now, it might not be full-time. (LOL I'm typing this and Lonnie stands over my shoulder says "He's not going to school" and walks away!) We think Daniel is very capable of going to school, and being as social as he is I think he'd love it........its Lonnie and I that are having the problems with him being away from us. So, here is some of the criteria that I have for Daniel going to school,. It will NOT be full time. I will be able to volunteer at the school/classroom. I will be able to visit at any time. I also would like Daniel to be able to use his wheelchair and his Nimbo Walker fairly well. I would also like him to have use of his AAC Device. I would love for him to be potty trained too. We have kind of gotten off schedule on that.

Let me start off my letting you know that I have a sensory issue......I don't like the feel of makes me cringe, I can't seem to get the feeling off my hands once I have flour on it. That being said...........this is what my whole house feels liek right now and I can't stand it. From the reconstruction of the house and the floor getting put in.......OH MY GOD!!!
Then, I also have the issue of having an "I hate clutter phobia" I can't stand things being out of place, or sitting where it doesn't belong. I don't like knick knacks, I don't like piles, I don't like things not to be in their rightful places.............I can't begin to tell you that we have three large rooms that were full of stuff shoveled into a smaller room(s) and stuff that should be in a living room in now in a bedroom........OH MY GOD!!!!


Anonymous said...

you will eventually have to except daniel going to school. whether he goes to school at an exclusive program or one with regular ed. he will be going to school. it is vital that he attends preschool and it is important that you do let other people spend time with him- without you by his side.
i know it is hard to imagine it that your not there to protect him and take care of him, but it is also a hinderance to have you doing it all for him. he can communicate and he lets people know what he needs. any teacher will understand that exspecially a teacher that you commnicate with. give them a chance and see what happens. you should try walking away a little bit. believe me there are some wonderful teachers out there. :)

Melanie said...

You don't have to try and talk us into it. We have every intention of sending Daniel to school when we feel it is right. We are just expressing how difficult it will be for us. One day, when you have kids of your own, you will understand. Then multiply that feeling by a thousand because Daniel has special needs. I for one hardly think I am hindering Daniel in anyway. In fact I push him to do things, otherwise he would not be doing some of the things that he does do today. No doubt there are some wonderful teachers out there..and I will make damn sure I find teh best ones for Daniel. As for others spending time with him...he is the social butterfly at therapies which he goes to multiple times a week so he is probably more social than most 2 1/2 yr old children.
A parent over a "typical" child wants to protect that child with everything they have in them. A parent of a "special needs" child is a thousand times more, because that child can't communicate when someone is doing them wrong, or they can't sommunicate or run from someone that is making them uncomfortable or something that scares them. Again, we as Daniel's parents are only looking out for the best for him, and I would not and I have not to this day done anything to hinder Daniel or anything that would hurt him in the long fact I have done things I haven't wanted to do (wheelchair, surgeries, tests, therapies) to help him get as far as he can get.

Anonymous said...

Yea mom.

Hindering Daniel would be not letting him go and be that social butterfly and not taking or giving him the oppertunities that you have. Hindering him i would say would be doing what the doctors orignally said to do, and not even give him the chance to do all that he can.

in fact if i remember right, dont bother, he will be a noodle... Thats hindering him

Your doing perfectly fine Lonnie and Mom, your being parents... Congrats.

love B

Justinich Family said...

I agree, you are doing awesome and it is so much harder when your child cannot communicate. I always ask Evan how his day was at school but I really truly do not know how he feels about school. Oh, I am sure he loves it and has fun but he cannot tell me if he has a bad day or if someone was mean to him or if something really great happened. That is hard. But I think he has blossomed since starting school, he is making more sounds and seems to be having some imaginative play. I think having his Dynavox will help but it is still not exactly what is in Evan's mind. I think out of all of the stuff that we have gone through the speech and communication issues are the hardest for me. I totally understand melanie. You guys are awesome. I am so glad to hear daniel is getting used to using his power chair and glad that he will be able to test out different AAC devices. Take care
Stacy from CP moms

Justinich Family said...
This comment has been removed by the author.
ummmhello said...

Yay for Daniel! Sounds like things are progressing really well for him. Double yay for you, for not expecting these new helpful gadgets to replace what YOU know he'll be bale to do down the road :) And school... whoa! He'll probably LOVE it, and you'll be thrilled that he's there :)

Anonymous said...

I was wondering - how did the laser augmentative communication device go? I would like to try the same thing for my son as I think this would be the fastest way for him to communicate. ...Amy