Big Wheels Keep on Turning!

Today Daniel got to get measured and tried out the "Standing Dani". This is such a cool piece of equipment. I really liked it alot, and Daniel had fun standing in it. There is a handle that can also be hooked onto the front so you can pull him around.

My the giggles and screechs that came out of his mouth when that happened! As you can see from the picture he was enjoying it. Now mind you the posture isn't that great in the photo, but these standers are custom built for each child.

Upped Meds

This week has been kind of chaotic. Seems when one thing happens everything happens, all gets a bit overwhelming at times.

We upped Daniel's night time dose of seizure medicine so he is now getting 750mg at night and 500 in the am. Unfortunately for his weight we are maxed out on the Vigabatrin, so if seizures continue then we will have to add or change meds. Not looking forward to that experience. Just the first night of upping his meds he was very irritable and didn't sleep well. Sigh!! He seems to have gotten use to it now. Just cross your fingers that we don't see any more seizures.

I swear with the bulges that I see on his gum lines (3 on the upper right and 1 on the lower bottom) I wouldn't be too surprised if those seizures aren't just from teething! And I'm not talking small teeth either! Those are some big'uns!

Seizures....AGAIN!

Well again Daniel has had some more seizures. Not sure why, could be the additional weight gain, or it could be his seizures are getting stronger, or the medication just isn't working anymore. All a bunch of "COULD BE's" and the not knowing, absolutely drives me bonkers.

I am not a patient person to begin with, when soemthing is going to happen I want to know all the details, don't leave anything out. I plan things way in advance, there are lists of what to do and when to do it. When I want something done, it is done NOW, when I say. I am not a person who can accept, "well we'll just have to wait and see". Pardon me? Do you know who you're talking to?? This must be some sort of cruel torture that someone is punishing me with. No I understand that no one has a crystal ball, but please dont' tell me again, "well we'll just have to wait and see".

On another note...being a bit cranky this morning because I was worried about Daniel's seizures, we are sitting in a waiting room waiting for Brittany to get done with her test. Daniel was tired and hungry so I was giving him his bottle (yes he is almost two and still takes a bottle but that is because he CAN'T drink from a cup or a straw yet), so he is laying across my lap and I am holding his bottle. This old woman is bold enough to say (after staring for about 5 minutes off and on) "He's a little big to be drinking from a bottle.", imagine....deep breath, eyes shut, trying to gain my composure.....stay calm Mel, "he has special needs" END OF STORY right? You'd think any decent person would then shut up......but NOOOOOOOOOOOOOOOO, not this old bitty! "Well at least he could hold his own bottle." I swear to God, it took everything in me not to put Daniel down and get up and whoop this lady's a$$ right there in front of everyone. Another deep sigh, its OK Mel, she's an ignorant A$$, "Well, Not that its any of your "beeping" business, but he has Cerebral Palsy......and that means, he can't control his arms and his legs, so I do it for him. Now, (snide look) anymore remarks?" In return I get a big huff. She's lucky that Daniel had fallen asleep by this time.......cause I wanted to rip her frickin' head off. Mind your own business witch!

OK I'm done! Have a nice day! :)

Who are you!?!?

Hello everyone that comes to our site to visit us and find out how Daniel and the rest of the family is doing.

We know from our little map that we have plenty of hits from all over the US, but we'd like to be able to place a name with the location and how you heard about us! If you can please take a few minutes and post a comment to this blog that would be wonderful..

We look forward to sharing all of this stuff with Daniel so he knows that people out there care about him and are checking to see how he is doing. Even if you've signed the guestbook before please sign here again! Thanks :)

SURPRISE!!!

The Birthday Girl!

Today, 57 people of our family got together at Frankenmuth to "SURPRISE" my mother (Daniel's grandma) for her 80th birthday. I would hate to be the ones to drive back with her after the surprise........she was sure to be ticked off! Grandma doesn't like for people to do things for her, she doesn't like people to go out of their way for her. She is bull headed, but we all still love her......but we are scared of her! LOL Here are a few of the photos.

Grandma and my kids.

Here are most of the Grandchildren......minus 7 that live out of state or weren't able to make it. Yes.......just the grandchildren....we haven't started counting the great grandchildren!

Way To Go Brittany!

Well she did it! Brittany graduated from High School! Yeah Brittany!

Busy Busy!

Well I was going to say this was our first full week back in the groove, but we didn't have therapy on Monday because of the holiday!

But Boy o Boy Tuesday was a doosie! We had OT, then Speech, and after a power nap we went onto PT. Now that's the way to get back into the groove of things! Jump feet first! He is doing really well in therapies most of the time! Sorry Karen he was cranky for you!

On Wednesday we had our last day of Early Intervention (school) this year. But on a happy note, we got to play in the pool outside! next week we are having our EI picnic. Hope the weather is good.

We also had to go to Daniel's new pediatrician on Wednesday because we had noticed that Daniel wasn't bearing any weight on his right leg when we went to stand him up. (this is his strong leg). He wasn't crying that it was sore or anything and we could do his stretches and exercises. but just wouldn't step down on it. Odd you say? Yep I thought so too, so off we are to the see Dr. Elton (awesome doctor by the way!) This was the FIRST time in Daniel's 22 months that he did NOT cry at the pediatrician's office. This Doctor was so nice, and she played with him. This practice treats a lot of special needs kids, and they obviously do it very well. Anyhoo, there were no tears even when we laid him on his back on the crinkle paper. He normally will flip out when this is done, but not a peep of protesting, just giggling and flirting with the nurse and the doctor. She sent us down to get x-rays of his right leg, so I was preparing myself again for the crying that was sure to come. But again, another pleasant surprise......Daniel on his back on the x-ray table taking about 6 different x-rays and he is just ooh'ing and ah'ing! Not a peep! So he got a well deserved sticker with a hippo on it! No breaks showed up so obviously it was just a pulled muscle. Ouch!

Today I am proud to announce that yet again Daniel is doing what people thought he would never do! He went potty 4 times today in the potty (come on sing the song with me!)
Bravo, Bravo, Bra-vis-e-mo,
Bravo, Bravo, Bra-vis-e-mo,
Bravo, Bravo, Bra-vis-e-mo Daniel went Potty-O!!!!!!!
He gets so excited when he does it!

He also went to his dietitian and since his last visit approximately 1 month ago he has gained 1 lb. 11 oz. making him a WHOPPING 26 lbs 11 oz., and 34 inches long!
We're thinking abut legally changing his name from Daniel to Green Giant. Any objections??