I FINALLY FOUND IT AGAIN!!!

Remember a few weeks back I was telling you how much I dislike the holidays and that I was reading another persons blog? Click here and I'll refresh your memory....HERE. Read about half way down and you'll see what I was referring too.

Well, I found it again! I search for it every time I get a few moment (OK which isn't very often, but when I do....I really look hard!) Anyway, here is the post that kept me looking. I remember just laughing my a$$ off.

Anyways, just thought I'd share. "It's funny in some language". I find her writing to be a hoot!

The Funk Continues......

We won't get into the "I Hate the Holidays" because its only a few more days and we'll be done with them........so I am trying to refrain from bursting anyones bubble and getting on a roll because I don't think I'll be able to stop. I am sure there will be tears and frustration written all over this blog.
And Melissa- NO, we haven't fixed it yet!! By the way, we are still without my computer so that is more of the frustration!!! UUUGH
For the past few weeks I have been trying to get things for the holiday done. I managed to teach myself how to quilt on my new sewing machine and made 14 quilts since the day after Thanksgiving. A huge feat for me.


Ok, so I won't get started I will just upload some new photos that we took in the past few weeks and give a brief description of each.

Here is Daniel with his present he got from his Secret Santa. A mother from a Yahoo support group that I belong to (Cerebral Palsy Moms) organized it. Daniel's present was from Ashton. He gave Daniel a really cool book, with sounds and his favorite character in it. ELMO!!! What a hit this was at our house. I've lost count to how many times we've read it so far! Thanks Ashton!!



Brittany reading Daniel his book for the 100th time!

Here Daniel is helping Mommy mix up things in the mixing bowls while I was trying to reproduce a recipe my mother use to make every holiday.........English Toffee Candy covered in Chocolate with sliced almonds.


Daniel trying to get me into the holiday spirit....


Daniel on one of his not so happy therapy days.........He didn't want to do what Ms. Carol was suggesting, hense the furrowed brow.

Brittany and Tori INSISTED on taking Daniel out into the snow.
20 minutes of getting the boots, snowsuit, gloves, hat, scarf, thermal undie.......for 10 minutes of playing out in the snow. But it was worth it, he loved it.

Daniel's 1st visit with Santa this year. Last year he liked it.

This year he's trying to figure out how the he!! to get off his lap!

Our 2nd attempt at Santa on a different day...

Nope, still doesn't like him!!!

And this is my favorite picture of all from the past couple of weeks. I'm sure I'll get yelled at from Dad or someone for putting this one on here. But isn't he such a big boy.......and the expression on his face..........PRICELESS!!

Pretty much sums up what I think of the holidays...........

Ramblings from a stressed out Mom

Hello-

It seems to have been a while and for those of you who look here frequently for updates on Daniel and the family, I apologize. I (Melanie) have been in kind of a funk lately and can't seem to shake it off.

I would have to say I dislike the holidays. It always seems to get me down, but more so this year, as my mother has just recently passed away. There were many things my mother did for the holidays, that made it special. And this year, it just isn't the same. Obviously, she is gone.

I am sure that people who are depressed know that once one thing in your life seems to suck it just snow balls and then it seems like everything sucks and its not going to get better. I could make a huge list of all the things that are not going right in my life right now, and the things that are bothering me greatly and I just can't seem to get past it. I know suck it up, shake it off, don't be such a downer, SNAP OUT OF IT!! I wish it were that easy.

I do have a lot of things to be thankful for, I truly do and I need to learn to look at things in a different way. I will still stick by the thoughts that I dislike the holidays. I read another blog recently that just kind of hit home, and I was going to reference it just now, but remembered..duh! your hard drive took a dump so you have no more favorites and I have no clue now to find it again. If I do I will post it then as it really hit how I feel about the holidays and it was funny to boot!

Daniel is doing very well, 'cept currently he has a cold and a frickin' sty that I can't get to go away for the life of me. And I believe an ear infection. We have gone to the eye doctor for his normal check up (because of the Vigabatrin medicine) and questioned WHY Daniel is always having boogery eyes, and sty's. He said that before we can do a tear duct probe (OUCH!) that he wants us to see an ENT first to make sure its not something wrong with his sinus area. Which is another trouble area, the child always, and I will stress ALWAYS has tons of hard crusty boogers in his nose, and most of the time they require a "boogerectomy" as we call it at our house.

We have also given our "verbal" word and signed in blood that if the insurance company won't pay for Daniel's motorized wheelchair that we have been waiting on approval for the past 8 months, that we will pay for it. If we didn't sign in blood they weren't' going to order it. So it has officially been ordered on December 5th and we should be getting it in the next month or so.
Now comes the home modifications that will be necessary for Daniel to utilize his motorized wheelchair. Then comes the fact that we will need a new vehicle that will be able to transport a wheelchair. Can anyone else see why I'm down in the dumps and stressed?!?! All these things that are needed and it is very hard to supply when you're a single income family. I know you are saying, so go get a job. Well it is not that easy. I am sure form reading of the blog one might come to the conclusion that life is all grand and peaches and cream....getting a job is not as easy as it sounds when you have a special needs child. This would include finding and being able to pay for a daycare that accepts handicapped children. This would also mean that we would have to stop taking Daniel out of all of his therapies. Oh we could get a nanny that would come into our home and take Daniel to all of his things, but then......why work? My whole income would go towards paying this person. I could get a job at night, but by the time Lonnie get homes from work, I am physically and mentally exhausted. AND when would we have family time. I guess I will eventually have to give up the sleep or the family time....but right now I am not ready for that. So I do work out of the house on the computer and the phone......but again.......remember my computer took a nose dive and doesn't work, which means I can't work. Perfect timing don't you agree for the wondrous holidays that are rapidly approaching.

I wish I could find a job that I could work out of home and make good money, and still be able to take Daniel to his therapy sessions (approximately 9 a week), do his feeds (3x a day plus snack - which take approximately 30-45 minutes each), getting him his electro-stim therapy at home, getting him in his walker and stander, creepster crawler, morning stretches, and naps. So that while his is napping I can "work". By the way the booger butt is only doing one nap a day these days.

But I will list one thing I am thankful for and one thing that is good. I have a wonderful family.
My husband, my children, my brothers and sisters.........we are an awesome family and you'd be hard pressed to find a more supportive one.

Back-Up Your Hard Drive!!

For those of you who believe that YOUR hard drive will never fail, do yourself a favor and back-up your data every so often.

As you know, Melanie is usually the one writing most of the posts. Me you ask? Well, you see, I am in charge of making sure all the computers are functioning the way they should. Well, let me rephrase....at least functioning. So, when something stops functioning, I am usually the one saying things like...

"WHY did you do that!?"
"You should have done THIS!"
and who can forget, "Why didn't you save!?"

Well, guess who's hard drive took a dump today? Yep. Oh let's see, all documents and hundreds of pictures from the past, ohh...two years or so....gone. Why? Because genius here hasn't been backing up his data. PLEASE do yourselves a favor and do so!

I am getting a well deserved beating.

Here's to an early Christmas miracle and me finding someone to recover my files.

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!)