Feeling of ...Discombobulation??

We have recently changed Daniel's therapies around. We use to go to one or more therapies each day of the week. Now we have finally been able to coordinate to have them all shoved into a little of two days. We now have Monday, Tuesday (except one hour) and Friday's off. We have everything on Wednesday and Thursday. It was safe to say last month that I would have been more than happy to consolidate them all, but now that it is actually happening, I feel like I've lost something, a loved one you could say. I am at home, at a loss for what to do. We actually have whole days where we don't even have to shower to get ready to go anywhere! i thought I would enjoy this, but I think it is going to take some getting use to!

After almost a year and a half of full timing the therapies......its an odd, odd feeling. A feeling of Dis- com-bob-ulation (dis·com·bob·u·late)
sitting here twiddling my thumbs. I'm sure once we get into the groove of a new schedule we'll be having tons of fun! Or I just get fatter and fatter from being home and eating all the time!
I know most of you are saying, well its summer go outside and play....oh and we will but Daniel's medicines cause him not to sweat and he turns the color of a beet within minutes of going outside because he overheats. Its a vicious circle. Stay inside and eat, go outside and Daniel is a beet..inside, outside....ARHHHHHHHHHHHHHH!

Happy Father's Day

I love you for staying with me in the hospitals








I love you for letting me eat your face

I love you for flying me like an airplane

I love you for going to most of the doctors appts. with me and mom

I love you cause you make me laugh.

HAPPY FATHER'S DAY

love Daniel

Sprinkler Time!

Of our pictures today, I'd have to say this is the funniest one.

Victoria decided that Daniel needed to experience the sprinkler....

He wasn't too sure he liked it. He was all happy and screaming until he got real close to the center section......then he'd tighten up his whole body and make this face.









Reminds me of one of the munchkins from the lollipop guild...

Happy Birthday Grandma T.

Happy Birthday to you!

Happy Birthday to you!

Happy Birthday dear Grandma

Happy Birthday to you!

We love you!!

On another note, today would also have been Grandpa T's birthday too. Now how cool is that? Grandma and Grandpa T both shared the same birthday just a few years apart. Grandpa T has passed away a few years back, but we still like to wish him well in heaven. Unfortunately Daniel was never able to meet his Grandpa T., but he does have his name......and his ears, and his hair, so we'll always remember him!

Ever Get Sick to Your Stomach Just From a Single Word?

Has anyone else experienced sudden sickness just from the thought of a certain word? That was me today, for sure. I mean so bad that I would think this word and suddenly I'm running to the restroom to get sick. I know it might sound silly to some, but let me try to put this into words, and avoid the word that is making me ill. This word, this by-product of PMG (Polymicrogryia) is "seizure". With every ounce of being, I loathe this word. I loathe what it means, what it does to Daniel. I don't understand, I can't wrap my mind around WHY it is, that this "monster" has come back?

Are we doing something differently?
Am I missing something I should be catching onto?
Am I not doing what I should be doing?

My little guy had been monster free for 15 months and then we had a couple break through tiny gremlins and we adjusted his medicine of Vigabatrin...crossing our fingers hoping it would work.

Now, this week, it seems that his "monster" is paying another visit on a daily basis. And Dammit, I don't like it one bit. He only has one cluster currently (pray its not going to be more) within 30 minutes of waking up in the morning. Then, from what I can see, he doesn't have anymore during the day, even after naps. I don't understand again......baffled as to why all of a sudden the miracle medicine isn't working anymore.

We are scheduled for the Video EEG at the end of this month. But until then Dr. Chugani wants to add Zonegran to Daniel's medicines. He will no longer be considered "mono-therapy". I am dreading Daniel having more seizures (uuugh I said it!), or taking a new medicine that is going to make him a zombie. It is killing me, I don't want this monster to take our little boy away again. He has worked so hard to get back everything he lost when they first appeared. I will be damned if I will let that happen again. But I am so scared......so please......if you believe in a higher being, God, or whoever......please ask him/her to spare Daniel in this visit of the ugly seizure monster.

Youngest Daughter Graduates 8th grade!

OH MY GOODNESS! Of course I may be biased, but isn't she a cutie!?

Taken right before her final middle school dance........no longer an 8th grader!
Good bye my baby girl!

He's Going the Distance

We are trying to get Daniel approved for a motorized wheelchair. He got to take one for a spin today at therapy. Check out his video!

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