May I have another, please........

Oh I didn't realize how much I missed days like today. It has been so long, and I mean MONTHS since I've had the house to just Daniel and I. FOR THE WHOLE DAY!
Before my daughter Alex moved home, Daniel and I would be by ourselves throughout the day.
Alex moved home and she has been with us pretty much all the time since. Don't' get me wrong, I love Alex to death and I love my grandson to pieces..................but ahhhhhhhhhhhhhh, a nice, quiet house. An uninterrupted day.

It was a Daniel and Momma Day to the Maximum!

And he knew it too! We both sucked it up! We only had one therapy session today so it was a very laid back kind of day, no work, no big time schedule. I made a few phone calls in the morning, but from then on it was just Daniel and me.

I know it sounds silly, but gosh it was nice, he was a snuggle bug today, we laid on the floor and played and he scooted himself over to me and I put him on my chest and he just laid there and cuddled for the longest time. I can't tell you when the last time was that we did this. Isn't that sad? That life gets so fast that you don't even have the time to cuddle for periods longer than 2 minutes?

Well then it came time for nap time, usually I just put him down and then run to clean or make important phone calls but instead I just laid with Daniel in my bed, him sleeping and me watching him. Just as I was starting to fall asleep next to him ......WHAM!! A fist to my forehead.....Daniel was awake and wanting my attention......what a nice way to be woken up eh?!

Here's how the conversation went: (remember Daniel is non-verbal!

Me: Well Good Afternoon Daniel......did you want something?

D: eeeem

Me: Oh really??!? (raised eyebrows) You don't say?!?!

D: eeeeeem ahhhh emm

Me: Oh, OK........are you sure?!?! (grinning)
D: (laughing) aaaaaaaaaaaaaaaaaaaaahhhhhh

Me: Here comes the tickle monster...............aaaaaaaaaaaah (proceed to tickle the crap out of Daniel!)

D: ARRRGH! (Laughing uncontrollably until he gets the hiccups!)

I Loved it! I could have stayed there all day but therapy calls, so we get up and get ready for therapy. Drive all the way to therapy and its raining and snowing.YUCK!!! I hate snow and I hate it even more when I have to drive in it.

The whole way to therapy (about a 40 minute drive) Daniel is gibber jabbering all the way.

We did our thing at therapy, and he did really well. By the time we left therapy there was some snow stuck to the ground which of course made driving oh so fun! But before we left I ran Daniel around the car and he just held his face up to the sky and the big fat snowflakes were landing on his face and eyelashes......he though this was the best. More uncontrollable giggles.

So we drove right back home and onto the big bed and played some more, wrestled on the bed, more giggles and did absolutely NOTHING that I "should" have been doing!

All in all it was a wonderful day just Daniel and I chillin'. I think he knew exactly what I needed. This was Daniel's way of taking care of his mommy. And he did an damn good job at it too......I'll take another one of those days real soon. He knew that I needed some lovin' and he knew I was close to a breakdown with everything that has been happening lately.

So thank you Daniel, for being my "little" big boy!

Here are some photos to show how nice our day went. The last one is of Daniel coming in for a big ol' kiss (we don't know how to do pucker lips yet!). I love you Daniel John-Maxwell, and I am thankful for having you.

What? Huh?? Where did this week go?!

OK, I'm getting old, or time is just flying by and I can't tell you anything that has happened.
If someone held a gun to my head and said list 10 things you did this past week, I really don't think I could, without sitting there for a while trying to figure it out. And by then he would have shoot me!
OK I know that we had the family over for Thanksgiving dinner. That was a hoot. It was difficult this year, as it was the first time without my mom. So there was no one to call and say, "hey, how long do I put the turkey in for and at what time do I start the mashed taters?!!", or no one to laugh at me when I would have been reaching INSIDE the turkey to pull out that bag of unidentified gross things. Can anyone answer me WHY do they keep that inside?!?! What is the purpose?!

Anyhow we survived it but it was missing a very important person. Here are some photos from Thanksgiving, keep in mind we are missing about 28 people from the family as they break off and have their immediate family for thanksgiving (2 brothers and 1 sister & their families) Can you imagine how long of a table we'd need then!

The first if Daniel mimicking Uncle Mike with his cool shades, the 2nd is the family getting ready for food, and the 3rd is Victoria tickling "Moose" our dogs ears as he is standing on a chair.
NO SHE IS NOT PULLING HIM UP BY HIS EARS!!
Daniel still has a bit of a cold, but he is still a happy little guy, boogers and all! Here are some additional photos of him this week. Even though he doesn't feel all that well, he is still a trooper and does all of his stretches, and work/play that he needs to do each day. Check it out. We got a new camera because I drop-kicked mine across the kitchen.....so we are still working on the focusing factor!!

Daniel Chillin' Daniel w/his touch screen
I think that about sums it up for this week. I hate the holidays.......but what am I thankful for?!
OK I'll say it.....................MY FAMILY. I AM THANKFUL FOR MY FAMILY.

Stay tune for more photos and some of Tori playing basketball too!!

Check in on the Big D!

For those of you who come to check up on Daniel and see how he is doing, I'll give you the low down!

1) Medication: We are on our last week of the wean of Zonegran. We started him on this at the beginning of the year because his nasty "monster" of seizures came back with a vengeance. But Lonnie and I never thought it did too much to help control them. So since he is seizure free (everyone reading this knock on wood, throw salt over your shoulder, or do a little jig)the doctor has decided that we can wean the Zonegran and have Daniel back on a mono treatment plan of just the Vigabatrin. For this we are very happy. The less drugs we have to put into his body the better. Dr. Chugani even stated that in a few months if his EEG's stay clear, we can start weaning him off the Vigabatrin (this scares the crap out of me!)

2) Augmentative Communication: For a little boy that a certain "out of state" doctor told us at the beginning would basically be not amount to too much, he is doing frickin' remarkable! This child (yes we're tootin' Daniel's horn right now!) tracks and has better eye contact and eye communication then most adults! Last week, through Early Intervention a consultant for communication devices came to evaluate Daniel again. This is her second time, this time she brought a "static" device for communication for Daniel to use. We get to use it at home, at school, all over. She even commented on how far he has come from our goals that we set last year for him. Wanna know why??!?!
Because Daniel is spectacular, awesome, brilliant, and absolutely adorable too boot!
The child has drive, he wants to succeed, he wants to learn so many things. You can see that he absorbs everything around him. This kid has more smarts going on in there then I care to admit. He's just stuck in a body that doesn't want to work with him. But smarts wise.........We have a regular scholar! His Augmentative therapist seems to think that Daniel will be ready for the basic computerized communication device in about 3 months. I am so very excited for that day.
We will have on loan to use in January-ish a Tango, and then shortly after that a DynaVox.

3) Equipment: We are STILL waiting on the approval of Daniel's motorized wheelchair. Here is what it looks like. Can you believe it is taking so long!?! I also can't wait until he gets this. I still hear from people, WHY do you need a wheelchair for Daniel? You have his seating system, or he is starting to walk with the posture walker. Well here is why we need the wheelchair....
a) It will give Daniel the mobility and the freedom that a 2 year old should be able to have
b) It saves his mom and dad's backs
c) When he is in school and goes on field trips he doesn't have to have someone push him
d) Daniel wants FREEDOM, he doesn't want me constantly standing behind him ready to catch him.
e) Cause he wants to be a typical boy and run people over with a 150 lbs wheelchair, and probably try to figure out how to do wheelies!

4) Physical & Occupational Therapy: AWESOME. Doing a little bit of this and a lot of that! He is doing the treadmill, he walks the hallways in the building with his posture walker, and he is building his endurance. Some things he quickly learns and can do well, and others that just take us some time, gives us things to work on. But for the most part, he is successful with both therapies.

So that my dear friends, is the low down on my little guy (who isn't so little anymore!)

Oh for Pete's Sake

Did you know its only 37 days until Christmas?!?!

WTF?!?!

Where in the heck did 2007 go??!


This is what I get for taking the time to get things organized and on schedule. I just realized....another whole year is almost gone.
Blew me away! Maybe I should stay in the dazed and confused world?!?!

Pickin' Up the Pieces and Getting on Schedule

I didn't realize how much time I've lost and the amount of confusion and unorganized I have become in the month of November. Scratch that .........in the past 2-3 years!

I don't know if its because I'm getting older and losing my mind perhaps?!
or just too many things and can't think straight. I use to be AWESOME when it came to remember things, I could quote what someone said in a conversation 6 months ago, word for word. I impressed the crap out of everyone. When I was working I could tell you what company ordered what automotive part and how to access their systems and find detailed information.
Now.......I'm lucky if I remember a doctors appoint. Or worse yet, the time of the same therapy session we have every week on Mondays.....is that 1:00 or 2:00?? no wait, maybe it's 3:00. Sheesh!

What is my deal?! Answers anyone? Ok, right now, right now in Blogger-World, I am making a New Years Resolution in November, make that mid November!

I am getting organized and I am staying on schedule! END OF STORY. Don't ask me to waiver from my schedule, don't ask me to put something away and hide it just for the sake of putting it away, it will have a designated spot.

Ahhhhh, I feel much better now! Seriously. I am up at 4:00 a.m., and I am starting off by cleaning off my desk and getting this pile of mail cleared up.

Oh yeah, and just cause I'm tired of the same ol' colors, we're going to be switching up the layout of the blog......something to look forward too!

And Our Lives Move On....

Where to begin.......

if you had asked me this morning what day it was or the date, I wouldn't have been able to tell you. This past couple of weeks have been a whirl wind of events. Some happy but mostly sad.
We buried my mom, my bestest mom, and my shoulder to cry on. I won't go into much detail, just that I will miss her greatly, and it saddens me even more so knowing that Daniel probably won't remember her when he grows up. He will just know her from what I tell her and the stories. I don't think it could have been more touching to me when Daniel stood beside my mom's hospital bed and patted her hand, and looked up at her to see if she was smiling down at him. It was unfortunate that at that time, Grandma was not awake, but I think she felt him there. Or when we laid Daniel in my mothers arm when she was laying in bed and he snuggled in next to her. I think she felt that too, even though she wasn't able to respond. But I think she knew.

I have a new task added onto my things for Daniel, and that is to make sure that I do everything in my power to make him remember his Grandma, to teach him all the things that she taught me. And for me, to be his strong shoulder to carry him when he is down.

What I learned about my family members??? Well, an event like this can either bring you closer together, or tear you apart. I come from a fairly large family, the youngest of 12, and found that we each have our own little niche in where we belong and what we offer to the family.
There are the family members who are the leaders, the caregivers, the good listeners, the shoulder to cry on, the hand holders, the pray-ers, the peacekeepers, the food preparer, the one who organizes everything, the anal retentive cleaner upper (tee hee hee) and the runner.......the one who maybe can't do what the other stronger ones can do, but is there to run and get whatever you might need at the moment. Everyone found there niche....and my mother passed away knowing that she had everything in place, that she raised her children who will in turn raise her 24 grandchildren who will then raise her 12 great grandchildren in the way she taught us to care for each other.

I learned that some of us think some ways and the others think differently, but in the end, we do what is right and we all agree and continue on. I have a good family, and I am proud of each and everyone of them for doing what they needed to do as we went thought this awful time. I am thankful that different qualities that my mom possessed, she passed on different ones to each of us. And I also know.......I was her favorite! :) (family joke!) She was a good woman, a saint of sorts (you have to be with a family like mine!) and we will all miss her a lot.

Now onto Daniel...while we were at the hospice house, Daniel started to walk with very little assistance, no one holding his hips or supporting his trunk, just Daniel handing onto your hand and walking, on step at a wobbly time. And the proud look on his face is priceless! I think pretty soon, I'm going to have a very confident walker! and I will be chasing close behind to make sure no butts fall or heads get knocked! I strongly believe as soon as his trunk gets a little strong and his confidence grows....he will get bolder and bolder and take the steps without anyone near.

Daniel seems to be going through a little seperation anxiety. It could be because of the past couple of weeks when I've been having to spend more time with others then with Daniel and he isn't liking it! I can't hardly walk out of a room without tears flowing. :) kinda makes me feel good to know he misses me! Hopefully this will end soon and he'll be his happy little self.

Thanks to everyone who sent their condolences by email, post or card........it was very kind of you to think of me and my family.

I'll love you forever

1927- Nov. 9, 2007

I'm going to miss you forever

My sister sent me this:

What a difference a sad event in someone's life makes:

The paradox of our time in history is that we have taller buildings but shorter tempers, wider Freeways , but narrower viewpoints. We spend more, but have less, we buy more, but enjoy less. We have bigger houses and smaller families, more conveniences, but less time. We have more degrees but less sense, more knowledge, but less judgment, more experts, yet more problems, more medicine, but less wellness. We drink too much, smoke too much, spend too recklessly, laugh too little, drive too fast, get too angry, stay up too late, get up too tired, read too little, watch TV too much, and pray too seldom. We have multiplied our possessions, but reduced our values. We talk too much, love too seldom, and hate too often. We've learned how to make a living, but not a life. We've added years to life not life to years. We've been all the w ay to the moon and back, but have trouble crossing the street to meet a new neighbor. We conquered outer space but not inner space. We've done larger things, but not better things. We've cleaned up the air, but polluted the soul. We've conquered the atom, but not our prejudice. We write more, but learn less. We plan more , but accomplish less. We've learned to rush, but not to wait. We build more computers to hold more information, to produce more copies than ever, but we communicate less and less. These are the times of fast foods and slow digestion, big men and small character, steep profits and shallow relationships. These are the days of two incomes but more divorce, fancier houses, but broken homes. These are days of quick trips, disposable diapers, throwaway morality, one night stands, overweight bodies, and pills that do everything from cheer, to quiet, to kill. It is a time when there is much in the showroom window and nothing in the stockroom. A time when the technology can bring this letter to you, and a time when you can choose either to share this insight, or to just hit delete... Remember; spend some time with your loved ones, because they are not going to be around forever.Remember, say a kind word to someone who looks up to you in awe, because that little person soon will grow up and leave your side. Remember, to give a warm hug to the one next to you, because that is the only treasure you can give with your heart and it doesn't cost a cent.Remember, to say, "I love you" to your partner and your loved ones, but most of all mean it. A kiss and an embrace will mend hurt when it comes from deep inside of you. Remember to hold hands and cherish the moment for someday that person will not be there again. Give time to love, give time to speak! And give time to share the precious thoughts in your mind.AND ALWAYS REMEMBER: Life is not measured by the number of breaths we take, but by the moments that take our breath away.