Saturday, July 26, 2008

BEWARE OF THE DANIEL

You would think that the animal above is what attacked me and so violently bit me. But noooooooooooooo....... (prepare yourselves..) below is the animal that did the damage. The dreaded "Daniel".


WARNING: When your child does not have proper control of his chompers, and does not know how to release his jaw and tends to panic when there is something solid in his mouth, DO NOT, I repeat, DO NOT attempt to use your finger to remove a large piece of food from his mouth!


Daniel was eating and he bit off just a little too big of a bite. Because Daniel has oral/feeding issues, this is where I generally am able to get him to spit it out. I could see the panic set in that "Oh crap, there is something in my mouth" so I immediately asked him to spit and he didn't. I couldn't have him swallow it because he would choke and I'd totally freak out. SO, I put my finger in to dislodge the food and he clamped down. There was no scream, there was just the fake calm of...

"Daniel sweetie....open your mouth please" and of course he is freakin' a tad so he locks his jaw.

"Daniel, pleaseeeeeeeeeeeee open your mouth, oh god, please can I see in your mouth sweetie?"

Now I am using my other hand to try to pry his mouth open, plug his nose, and now I'm starting to panic!! After what seemed like forever, he finally let loose. No I did not reprimand him. He did not know he was hurting me and he didn't do it intentionally. Its not like he thought, oooh there is mom's finger stuck in my mouth. So, when he let loose my response was, "Oh thank you punkin, that was good that you opened your mouth!" and he was so happy to be such a good listener! :)

I did think for a brief few second or two thought I would need stitches because of the amount of blood that was pouring out of the wound. The photo was taken about 5 hours after the incident so doesn't look as bad as it previously did. But I will say, it still hurts like a s.o.b.

Wednesday, July 23, 2008

Flashlight Tag....well sort of!

Talk about being overwhelmed and just caught up in everything! I don't know where the time has gone but I could got for passing a new rule that the day should have more than 24 hours in it!
Below are just a few pictures of a new game we created at home. After playing it I thought "wow! what a cool game to get Daniel to really understand his eye gaze". We have been working with Daniel on his eye gaze with his augmentative device (its our back up to touching the screen. the one we are getting have the laser for eye selection). Here is what you would see if you walk into a room at our house at night time! Its kind of like flashlight tag, but not really!

If you can't figure out what the photo is above, that is Daniel with his flashlight. Photo taken without a flash on.
Daniel with his flashlight (headlight) taken with flash on the camera
Daniel thinking he's the top notch winner with the cool head gear! the idea is that with the lights out, Daniel is the only one with the headlight. When he turns his head and the light stops on you......you get to move and make funny faces! Or we sit there and I ask him to look for his mickey mouse, Elmo, daddy, etc. Then when he stops his light on it we all clap and shout for joy. Its a fun little game and like I said he thinks he's really cool. Anyways a little pat on the back to mom and dad for coming up with a cool game what works as therapy too! ;)

Below are just a few pictures from therapies this past week or so.

Daniel listening intently to Ms. Carol's directions using the lite gait walker that we want to get. If someone would like to donate one to us.........what would be just swell!

Daniel writing on the Water Doodle. (He hasn't decided yet if he is left or right handed, it switches from day to day!)

Daniel continues to do the VitalStim at therapy with Ms. Pat. It is going so well. His swallows have gotten notably better, louder, quicker and stronger. This makes me a very happy mama. We will continue with this type of therapy. We are also back to doing the TES therapy at night, where Daniel wears his electrodes while he sleeps to stim the muscles of his truck. This is a long time therapy and will take many many many months, but it is while he sleeps and he doesn't seem to mind. We are also in the middle of his weaning of the anti-seizure meds. Makes me very nervous because I am terrified the seizures will come back and we wont' be able to control them. Anyways, (everyone knock on wood please) all is going well. Actually since starting the wean, I think he is becoming more alert. His processing time is getting quicker. You ask him to do something and he is able to do it much much quicker. This is a very good thing.

Thursday, July 10, 2008

Mulholland, Rifton, Pony...OH MY!

So our little boy isn't so little anymore and he is outgrowing much of his equipment that we have purchased in the last couple of years. We were attempting to see if there was a different piece of equipment that might work better for Daniel, give him more freedom to get around and interact with family and friends then the walker we have currently - The Pony size 0.

Our first attempt, the Mulholland. While the Mulholland is a neat piece of equipment, we tried Daniel in it and he did OK in it, but .....it just didn't seem to give him the support he needed, and it rolled so well that it sometimes went quicker than his little feet could handle. But he did indeed have fun trying it out. So unfortunately it didn't work well for Daniel, but it seems to be working good for Hannah over on The Younes Blog.


video

Next we had the Rifton Pacer. Again, another sturdy piece of equipment and gives a lot of support and can be changed to give very little support. We've had this one for a while, but again...I guess I'm kind of picky when it comes to gait trainers...I like for Daniel to be able to get up close to things and grab at items. With the frame built the way it is, Daniel wasn't able to do this too much. It works great outside, and keeps from tipping' if Daniel is half on the sidewalk and half on the grass. Still, when he goes to school in a couple months, I want him to be able to get up close to the work tables, and up close to his friends. Again, don't get me wrong, it did what it needed to do, but I wanted something more streamlined. So we will not be getting the Rifton Pacer in a larger size.


Now...it is with much sadness and reluctance that we have to pass one Daniel's beloved yellow Snugseat Pony Walker. (boo hoo hoo) This walker has been our godsend for the last year. This piece of equipment, is Daniel's legs...he can run, hop and walk. He can pull things out of the pantry, pull open cupboard doors, slide down the ramp to the family room. Because of a resent growth spurt, he is way too tall for it. It isn't doing what it needs to do. So frantically after his therapist said it could no longer be adjusted higher, we began our search. Daniel can't go without a walker, its his Independence. It would be like telling someone who walks that they can no longer walker or move, they could no longer explore their world. We weren't going to let that happen! So, until we get insurance approval (which could take at least 4 months...AT LEAST!) we have located one that we will use until we can get one with insurance. My only complaint about the Pony...the next size only comes in Fushia! Daniel and fushia...just doesn't seem right!

So farewell little yellow Pony...I hope you bring someone else as much joy as you have brought to Daniel and his family.

We haven't tried this one yet, but I would love to be able to try out the Leckey Discovery gait trainer. If anyone has tried this out or knows anything about it please let me know!