O'where O'where can my little Daniel be......

Well, you know that you're not exciting anymore and you are not "HIP" when at 9:45 p.m. your spouse is sleeping in bed cause he fell asleep when he was putting the littlest one down to sleep.

AND, the baby is still awake sitting on your lap. (I would post the picture that I took of said husband sleeping, but I would get killed, and that is a bad way to start off the new year!)

You also know your not "hip" anymore when you are playing hide and seek with your 14 year old daughter who is helping my 2 year old son hide in the "best est" spot ever at 10:00 p.m.

See if you can find Daniel....

.

Do you see Daniel hiding in all of my left over fabric from quilting?!? Now this is the only time that Daniel can't contain his excitement and its very easy to find him. All I have to do is say "O'Where, O'Where is Daniel??? Daniel where are you???" and instant giggles.........leads me right to where he is hiding!

Oh the excitement of New Years Eve!

Here is another photo we took today..........Father and Son.........can you tell?!?!

Well, I hope everyone had a Safe and Happy New Year.

Our Visit with the ENT and Our Run Around...

So we had our first visit with the ENT earlier this week, needless to say, I didn't leave with a "happy happy joy joy" feeling.

Basically I feel we are getting the run around. Lets go back a couple months ago.
We went to the pediatrician because Daniel kept getting styes in his eye.
Obviously he didn't complain much about it, but they were driving me nuts. It would be there, the next day gone, the next day its back but BIGGER. Then he started to get one on his eyelid, a huge looking bump UNDER the eyelid. I wanted some medicine to get rid of them. She simply said put a warm compress on his eye and it would work itself out, but perhaps we needed to see the eye doctor because maybe he needed his tear ducts probed.

So step two, we get a new eye doctor, as our original eye doctor is older and I didn't feel comfortable with shaky hands probing anything on Daniel. (Read more about that here) So we get a new eye doctor, the eye appointment went fine (besides a few screams), his vision is OK and not affected by the Vigabatrin. When we asked about the styes (they were big at the time), he said well before I would go in and get the probing of the tear ducts, and the removal of the sty (cyst), I would like an ENT to see him to make sure that its not his sinus that is blocking anything and up into the eyes. Cause he felt that if that were the case that once that was cleared up the eyes would clear up. FOR THE LOVE OF GOD.........WILL SOMEONE PLEASE JUST HELP ME FIGURE OUT WHAT IS WRONG WITH MY CHILD'S EYES AND WHY IS HE GETTING THESE FLIPPIN' STYES SO MUCH.

So, next step we find a pediatric ENT. She was very nice and after our 3 hour appointment and getting x-rays and asking a bunch of questions, Daniel's adenoids are large and need to get removed. This is causing all the boogerectomies that we have written about. From the picture of the x-ray, she said that Daniel's airway and drainage isn't really happening because there is a very very very small (Did I tell you it was small) passage. And with all the boogers he is getting, it is apparent that there can be no drainage like the average person. Apparently he also has fluid behind his one ear (although he has never cried or complained of an ear hurting. In fact he has never had an ear infection his whole life!) The doctor said that with the fluid behind his ear it would give him the feeling of descending in a plane and 20-30% of hearing loss in that ear. WHAT??? This kid turns when you drop a needle on a cotton ball! OK, so anyways back onto the subject....

Daniel will be having surgery in January 2008. Welcomes in the new year nicely don't' you think?! BUT she doesn't' think that the styes are associated with the adenoids.......and that when she has Daniel knocked out for the sinus surgery, that perhaps the eye doctor would like to come in at the same time and do the tear duct probing and sty/cyst removal. Well wouldn't that work out nicely? Get it all done at once?? Well that would be too damn easy wouldn't it?
Seems the ENT only does surgery on Thursdays and the Eye doctor that we went to is out of a different hospital so he can't do the eye surgery and the second eye doctor that was recommended to us that works out of the same hospital as the ENT, oh, well we're sorry but he doesn't do surgery on Thursdays, he only does them on the 5th Wednesday of the month in the year 2012, and maybe there is another ENT that could do it on that day? What do you think!?!?! So forget it. Daniel is getting his adenoids removed, and hopefully we will see if that will clear up the styes, and if not, then we will have to go the the eye doctor and say well you're thoughts weren't correct so, lets knock my child out again and do the eye surgery.
%Y$&%H$*&# I just want to scream sometimes.

Why can nothing be easy?

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.