Friday, June 29, 2007

Prepping for the Glue

In preparation for Daniels Video EEG, we decided he needed a haircut because of the horrible glue that is used to put the electrodes on. Getting the electrodes on involves strapping him to a table, and attaching electrodes all over his head. This doesn't work well with long curly hair so we have opted to get Daniel's hair cut. I figure it will grow back quickly like it always does. But boy what a difference! Here is the before and after shot. When its curly he looks like a little guy. When its shaved he looks so old! And he doesn't look happy after either!

So I shaved my little boys cute little curly locks off for no reason! They use a different glue at the hospital now so its very easy to get out of the hair after the fact. This new glue is water soluble, so there isn't any after residue left in his hair. Go figure! This time the whole experience was wonderful. Normally they will swaddle the child up and tape them to the table. Check out how it was done before and how it got done this time (THANK YOU JOANNE L. in the EEG department at Children's Hospital)

Notice the marked difference in methods of getting Daniel hooked up. The "Sad" picture is from a previous EEG. The other picture he is engrossed in watching the Elmo video and doesn't even realize that she is sticking things to his head!

Daniel did very well through the whole procedure. In fact, he even got a special breakfast with a teddy bear waffle(Dad ate it!). When I asked Daniel if he was having fun.....this is the response I got.

The little bugger stuck out his tongue at me! and he did it PURPOSEFULLY and thought it was funny!

Tuesday, June 26, 2007

Rainbow Connection - Non-Profit Michigan Charity

Well a few weeks back I received a call from this place called Rainbow Connection. Never heard of it before, actually I thought it was a show on television with Lamar Burton (the name of the show is actually Reading Rainbow!) HA HA HA, two totally different things! That was my duh! moment!

Anyways, this very nice lady named Ingrid, asked us if Daniel had ever been granted a wish. Odd question I thought but I answered. She then explained the organization to me and said that there was some people that had asked that Daniel get a wish granted. You can imagine the tears that came. That someone would be so kind as to 1) remember Daniel 2) take time to contact this organization 3) explain what was wrong with Daniel and forward his website to Rainbow Connection 4) to actively follow up with Ingrid to see that Daniel was taken care of.

Well we answered a few questions and she took down some information and said she get back in touch with us. Well Ingrid came to visit today, and Daniel will be awarded his wish. What does a two year old wish for?! It is not something we have to do right away, we have time to think about it, and see what would be best for Daniel. A lot of children pick the trip to Disney or to meet someone famous. I don't' think that Daniel would be very interested in that stuff right now. Now mind you a trip sounds awesome, but this is for Daniel and I want to make sure he enjoys what he gets. So some thinking will have to be done.

It is my understanding that Daniel received his sponsorship from The Great Lakes Southeast Michigan Chapter of the Harley Owners Group. It was someone from this group that came to Daniels first fund raiser in February of this year. Whoever that individual is, and to the whole group, if any of you are reading this.....Thank you from the bottom of our hearts. If you'd like to read more about them here is their site.

Monday, June 25, 2007

Crankiness........Is It Out Of Frustration?

I am not sure if it is the side effects from the new medicine, the fact that Daniel is getting to close to being 2 years old, or side effects from having seizures, teething, just not feeling well, for the heck of it, or he is feeling the frustration that he is having a difficult time communicating to us and he isn't happy about it. He just seems to be extra cranky as of lately, and that makes me very sad.

It is so hard for me, (and I imagine for him also) that he can't communicate to me. I know some people will read this and say, well how much can a two year old be saying at this time? well according to the "records" the average two year old should be saying anywhere from 200-300 words, be able to start putting together 3 sentence words, "me want ball". And stuff like that. Most 2 year olds can point and name body parts, Daniel will look at your nose when you ask him where it is, will he point to it? no but does it know it? I think so.

Most 2 year olds can tell someone their name, Daniel can't. Does he know his name? I think so, he will turn and look at you when you call his name. He knows he is Daniel, he knows who mama, dada, and his sisters are.

It saddens me greatly that Daniel isn't able to do these 200+ words, or that he can't tell someone his name. I get teary when I think that he can't communicate the "normal" way. We have our times when I'm not sure what he wants and I am sure there will be plenty more to come in the future. Some are probably thinking its just like when you have a baby...well Daniel isn't' a baby, and Daniel knows what he is feeling and he wants to tell you but he can't. To me there is a difference.

But this morning when Daniel's nurse asked me if Daniel was doing OK on his new medicine I could only guess. When you have a non-verbal child, how are you to know? Does he have a tummy ache from the medicine? Does he have a head ache from his meds? Does he seem off balance? How the hell (excuse me) am I to know? He isn't eating great but that is one of the side effects...lack of appetite. Do you see where the frustration comes in? How can I tell if he seems off balance? He can't stand on his own? Its all a guessing game, and what if I guess wrong? What if I say everything seems fine, and it really isn't?

Daniel is going on two years old and he needs to communicate, be with pictures, an augmentative device, or some modified sign language. He needs to be able to communicate more than just grunts and crying. I know he wants to do more and I know he CAN do more, he just hasn't been taught yet. AND I AM KICKING MYSELF FOR NOT STARTING SOONER AND LETTING PEOPLE TELL ME IT WAS TOO SOON. My own fault, no one elses.

Thursday, June 21, 2007

HAPPY BIRTHDAY ALEXANDRA



Well as much as I want her to celebrate her 20th birthday, I hate saying I have another child who is 20+. Do you know how old that makes one feel?

But I will do it anyways

Happy 20th Birthday Alexandra, may you have a delightful year. (tee hee hee) Welcome to adulthood!





Wednesday, June 20, 2007

'Piders and Beetles.....OH MY!

Well, for those who are squeamish and sensitive to the bug world, don't read any further.

OK, I thought that my spider experience from last night was the worst; I was wrong. After telling my sister about it she began to tell me her story of sitting on her porch the other night, enjoying the weather, eating a chocolate ice cream sundae. As she was eating her ice cream, watching her little dog play in the grass, she looked down and saw that she had inadvertently dropped a blob of chocolate on her chest. So, not having a napkin readily available, she took her spoon to clean it off...........(OK are you ready for this?) It was a JUNE BUG!!!! OH MY GOD!!!!!! OK do you have the heebie jeebies yet?? Needless to say, she IMMEDIATELY flung it off her chest and went inside the house. UUUUGH one of those things I dislike about summer....the bugs.

Tuesday, June 19, 2007

Whoa! That'll wake you up real quick

So, I wake up during the night, want to grab a drink of water and WAHHHHHHH!

What the heck was that? (those were not my exact words....but close enough). thank goodness I had just visited the bathroom or else there could have been another issue to deal with!

WAH! there it is again, (doing the dance of grossness and "ooooooooooooooh sick!!" shivers running all over, crap I can't wake Lonnie up he'll be ticked off beyond belief. I call Tori and her friend to come assist, but of course Tori is a big baby and won't do it!! Elizsa offers but I can't let her do it, what if her parents find out I put her at risk!?

OK, screw the drink of water I think I'm going to barf.......looking around for anything to catch it with. It is WAY, WAY to big to even think about squishing, I'd need a whole roll of paper towel. I could beat it with a broom I suppose. I could let the dog eat it? Nope. I can't do it. He (the 'pider) is staring at me I swear it. UUUUUUGH. Its one of those things where you have your toes curled, your hands to your face and can't even think about looking at but can't tear your eyes off it for fear it will come charging at you.

OK suck it up Melanie, you have to save your children, they are in danger! OK I can't deal with this right now, I'm tired and now wide awake thank you to the worlds largest 'pider.

So here is my solution until Lonnie wakes up in the morning.

Just in case you can't see him, which I can't believe you can't! eeeeeeeeewwwwwwwwwww



eeeeeeEEEEEEEEEEEEWWWWWW!!!!

And YES Lonnie, we are going to throw that glass away!

Just thought this was cute and wanted to share

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!

Sunday, June 17, 2007

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

Saturday, June 16, 2007

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...







Friday, June 15, 2007

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!


Thursday, June 14, 2007

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.

Tuesday, June 12, 2007

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!

Thursday, June 7, 2007

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!

Tuesday, June 5, 2007

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!

Monday, June 4, 2007

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! :)

Sunday, June 3, 2007

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!

Saturday, June 2, 2007

Friday, June 1, 2007

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??