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.

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.

I'll love you forever......

I read this poem from the website of another mom, Melissa, and it hit home for many reasons. Hope you don't mind Melissa..........and thank you for sharing it with me.

1.) Because I hope to have this bond with my children

2.) My mother is very ill, and it made me think of her. During the past couple of weeks she has lost her ability to do many things, and my brother Greg (bless his heart) is the only one my mom truly felt comfortable enough to trust to carry her from her wheelchair and lift her into bed.

It is by Robert Munsch

A mother held her new baby and very slowly rocked him back and forth, back and forth, back and forth. And while she held him, she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

The baby grew. He grew and he grew and he grew. He grew until he was two years old, and he ran all around the house. He pulled all the books off the shelves. He pulled all the food out of the refrigerator and he took his mother's watch and flushed it down the toilet. Sometimes his mother would say, "this kid is driving me CRAZY!"

But at night time, when that two-year-old was quiet, she opened the door to his room, crawled across the floor, looked up over the side of his bed; and if he was really asleep she picked him up and rocked him back and forth, back and forth, back and forth. While she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

The little boy grew. He grew and he grew and he grew. He grew until he was nine years old. And he never wanted to come in for dinner, he never wanted to take a bath, and when grandma visited he always said bad words. Sometimes his mother wanted to sell him to the zoo!

But at night time, when he was asleep, the mother quietly opened the door to his room, crawled across the floor and looked up over the side of the bed. If he was really asleep, she picked up that nine-year-old boy and rocked him back and forth, back and forth, back and forth. And while she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

The boy grew. He grew and he grew and he grew. He grew until he was a teenager. He had strange friends and he wore strange clothes and he listened to strange music. Sometimes the mother felt like she was in a zoo!

But at night time, when that teenager was asleep, the mother opened the door to his room, crawled across the floor and looked up over the side of the bed. If he was really asleep she picked up that great big boy and rocked him back and forth, back and forth, back and forth. While she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

That teenager grew. He grew and he grew and he grew. He grew until he was a grown-up man. He left home and got a house across town.

But sometimes on dark nights the mother got into her car and drove across town. If all the lights in her son's house were out, she opened his bedroom window, crawled across the floor, and looked up over the side of his bed. If that great big man was really asleep she picked him up and rocked him back and forth, back and forth, back and forth. And while she rocked him she sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

Well, that mother, she got older. She got older and older and older. One day she called up her son and said, "You'd better come see me because I'm very old and sick." So her son came to see her. When he came in the door she tried to sing the song. She sang:

I'll love you forever,
I'll like you for always...

But she couldn't finish because she was too old and sick. The son went to his mother. He picked her up and rocked her back and forth, back and forth, back and forth. And he sang this song:

I'll love you forever,
I'll like you for always,
As long as I'm living my Mommy you'll be.

When the son came home that night, he stood for a long time at the top of the stairs. Then he went into the room where his very new baby daughter was sleeping. He picked her up in his arms and very slowly rocked her back and forth, back and forth, back and forth. And while he rocked her he sang:

I'll love you forever,
I'll like you for always,
As long as I'm living my baby you'll be.

Oh My Gosh..........November Already!

Where in the world did the time fly?! Can you believe that it is already November?

UUUGH!!

If I close my eyes really tight and try to zone out all the noise around me maybe the next two months will slip by and I won't have to participate or notice anything at all. Heck I have been fretting about how busy life is and all the crap that has been going on, and now on top of it............Its NOVEMBER!!! Thanksgiving, Christmas and all that other frickin' stress............NO THANK YOU!

I'm going to stick with an October issue just because I refuse to acknowledge November as of yet!

We live in a city that is well populated, on a semi busy street. And why is it that NO one goes trick or treating anymore? We had maybe, if I stretch the truth just a little....15 kids, and 8 of them were probably high school kids!! I remember when I was younger, when we went out trick or treating, we went out with pillowcases, and you had to stop back at home and drop off what you had because the pillowcase was getting too heavy.....then you went back out! And there were tons of kids out, big groups of us. Well that past time seems long gone in this neighborhood. Poohy! seems Halloween is losing its luster!

But my little guy still got dressed up and went out to the few neighbors who had their porch lights on, and got some candy for his daddy! Here's a photo of Daniel in the car on the way to getting some candy! My little Koala Bear! and below is Zachary's First Halloween.....he's a boo ghost!

And we're UP UP UP!!!

First:

Happy Birthday Little Miss Katie down under in Australia!!!

Second:

Today Daniel went to see Dr. Chugani (his neurologist) for his first appointment since being off ACTH. And wahoooooooo, (have I mentioned before I LOVE going to see Dr. Chugani, he makes me walk away feeling that my child is just a typical child) he says Daniel is just doing great, and that we are going to start to wean him off of the Zonegran medication that he is one for seizures. Which will leave Daniel still on the Vigabatrin (anti-seizure meds) and the Robinul (for drooling, caused by the PMG).

This is a good thing, weaning the meds, but I will be honest with you. I AM SO NERVOUS!! Daniel was originally one just one anti seizure medicine for 1 1/2 yrs (vigabatrin) and it controlled the IS seizures. Then for whatever reason they came back and we added the Zonegran. This didnt' stop the seizures and that is when we decided that we'd do the ACTH (successful!). So because his EEG came back clear and the Zonegran didn't really do anything in the first place Dr. Chugani said to start Daniel on the wean. Which we will start to do this weekend and then he will be completely off that by the end of November. IT IS SO NERVEWRAKING! and I am so torn. Yes I want him off the med, no I don't want to mess with anything because he is seizure free right now! Why mess with a good thing?!?!?!

Then in 3 months we go back and we'll get another EEG. And if it comes back clean again, we will begin weaning the Vigabatrin. The thought of this itself gives me a horrible stomach ache! NO antiseizure medicine at all!?!?! ARE THEY NUTS!?!?! But hey Dr. Chugani hasn't steered me wrong yet.

Today Daddy came along to our therapy sessions and got to see all the wonderful progress Daniel has been making. In fact............Daniel took such pride in Dad being there that he even showed off quite a bit. He did laps in the hallway walking with the posture walker. He is such a show off!! He was so proud of himself. Its Awesome! (there's my favorite word again! I've got to find something else to use pretty soon!)

Pretty soon I'll just break out into cheer:

"A"

"W"
"E"

"S, O, M,E"

AWESOME, AWESOME.....TOTALLY! RAH!

An emotional day for Mom....

Emotional Roller coaster

One minute we're up!!

The next we're down!!

Up!

Down!

UP: Today Daniel had his first EI (Early Intervention)at home session for the school year. I cannot tell you how nice it was to have a good experience. This year there is a new teacher (Mrs. Kim) who used to be the teacher for EI a few years back but left to be an at home mom with her kids. Well she is back and I am very glad. She seems very nice. Another change this year is that when they come for the home visit it is not just the teacher but it is also one of the therapist. Today's experience with the visit and using our equipment at home has me thinking that this year is going to be a very good experience with the school system.

DOWN: My mother, the kids grandmother, has been fighting cancer for 20+ years. This past December we were told that it was back. She has been very very ill lately, and we have been having a nurse come to stay the days with her and one of her children (myself and my brothers and sisters) have been staying the nights with her. Today we got a call that there is a bed available for her in a Hospice home (the UP: she will be getting the correct medical treatment by TRAINED people, and she will be kept comfortable. the DOWN: the realization that my mom probably won't be coming home again, and that the home she has had for the past 25+ years, is not going to be filled with her home cooking, her knitting). It is a very very sad thing to have to go through. And yes I understand it is part of life, and that many others have gone before. But what you seem to not understand is.......this is MY mom, this is not fair, and no one should be meant to suffer this way, and to lose their sense of security. We won't get started on this but I was brought up Catholic and I do believe there is a God, but what I have a hard time understanding is why he has to make someone like my mother (or anyone for that matter, that is a good person) suffer. Again I am not opening this can of worms......because I am very thankful to God for helping Daniel along the way......but again, why is it that the good ones have to fight, struggle and suffer?

UP: Daniel is doing so great in all of his therapies, and we have been very lucky in having good therapist along the way. I hear horror stories from other parents who say that their therapists don't interact well with their kids, or that they just seem to be there for the pay. We have been lucky, Daniel's therapist, while I am sure that they are there for the money too, but they truly love Daniel. Unfortunately we had to end one of our sessions this week, for a few reasons.
Here's the DOWN: Daniel had two different Speech Therapist. One working on feeding issues, the other working on Augmentative Speech. According to Insurances, you can only have ONE type therapist. So for now, I felt that getting Daniel the communication is the most important. Now mind you Daniel has been seeing Ms. Anna, (his feeding therapist) for about a year, and she has done an AWESOME job. so there is the second part of the DOWN: We had to stop feeding therapy so we won't be seeing Ms. Anna anymore. (Unless of course I can figure out a way to swing it!)
Another reason we had to lighten the load of therapies if truth must be know....I need to spend some more time with my mother before it is too late. I know its silly and you think big deal therapy was only 2 hours a week. Well those two hours, are going to be spend driving to, or talking on the phone, or just plain sitting with my mom. I need those two hours for a while. And then maybe we can get back to that. Very selfish perhaps on my part, but Daniel will also get the benefit of spending more time with his grandmother, that I hope and pray he will be able to remember when he gets older.

Including Samuel

Hey! There are two posts today so if you're reading this one, also make sure to check out Daniel and his pumpkin carving skills!

I read about this little boy named Samuel the other day. And it hit me hard. I immediately wrote to his father Dan, and asked if I could do a link to Samuel's site. Samuel has Cerebral Palsy and is older than Daniel. But when I watched the videos and checked out pictures and read, it felt like I was reading all about Daniel. For whatever reasons, I felt a sort of bond. I want to get any information I can from these parents ( I know that there are different circumstances between the kids) but they seem to be doing everything that I want for Daniel.

There was one little clip where his mom was explaining when they noticed that there was an issue with Samuel. All the things that go through your head, "how will he be able to run and play, how will he hold a pencil in school, how will he fit in." Those are some of the things that go through my head on a daily basis. And I try with every ounce of my being to make sure that Daniel has everything and anything that might make his life a little easier. Some people may think I go overboard, or that I am to the extreme. But if it were your child, I guarantee, you would be doing the same thing. There is always the fear that I will let Daniel down. That I will skip a therapy session because I was tired or there was some other "emergency" and that could have been the therapy session that something clicked for Daniel and he understood what to do.

Any how, Samuel's father has made a documentary called "Including Samuel". Watch it. It is heart wrenching in many aspects. He did a wonderful job. I can only hope that Daniel does as well as Samuel obviously is doing.
What I hope you get from visiting his site...., just because our children are different in ways that they had no choice in, they are people, just like you and me.

I hope that people will see Daniel for who he is, not what he has. I don't want him to be known for the little boy that can't talk, or the little boy who moves funny. He is Daniel, and he is my little boy, and I could never be more proud of him that I am. He is truly my hero.

Here are some additional photos of Samuel (because he's so cute!)

PUMPKIN CARVING DAY!

Daniel was so excited about today's planned events that he couldn't contain his excitement. So even though little Zachary was sleeping in Uncle Daniel's (tee hee hee) arms. When I told him we were going to make fun Halloween breakfast treats, carve pumpkins and decorate our Halloween haunted house, he was so excited he shouted with joy!

It was PUNKIN' CARVING DAY!!!

So began the day with making our surprise breakfast. OOOOOOH Gross! We ate

BLOODSHOT EYEBALLS!!!

SICKO!!

Then we got all the punkins in the house and cleaned them all out, Dad helped a lot with this as mom as some sensory issues and doesn't like to touch the guts!

But I did my own all by myself!!!

Victoria kept telling me what to do, so I just ignored her.

What does she know??!?! She thinks she knows EVERYTHING!

When Alexandra left the room, Zachary was being loud and cranky. So I shoved him in Victoria's pumpkin and blamed it on her!

(well he stopped crying!)

After all the mishaps and interruptions I finally finished my masterpiece.

The bestest carved punkin of 2007

by Daniel Spranger

Here is our gingerbread haunted house!

Hope everyone has a fun and spooky Halloween!

Our New Goal

This is a new piece of equipment that Daniel uses at therapy.

So far it is awesome for him. What I would like is to put the word out there to anyone that comes to this blog......

This is our wish list, or christmas wish list, or next years worth of wishes.

I think if we got this for at home, and we were able to work on it daily with him, his trunk would get so much stronger.

Anyways........if you hear of one of these or you know where we can rent, use, buy cheaply, steal (LOL JUST KIDDING) please send the information onto me at my email address located under my profile. Or if you just want to buy it for Daniel and sneak it under the Christmas tree.........by all means I won't stop you, in fact I'll keep the door unlocked!!

It is called the "walkable" or the "Lite Gait" or a "mobility frame". There are many names for it, but basically what it does is it supports Daniel's trunk, while positioned over a treadmill, which will then get him the motion of walking. There is much research being done with children and treadmills. Click the link if you'd like to learn more. Our insurance, as good as it has been will not cover this as it is considered a form of exercise equipment. Plus we are still crossing our fingers on getting his power wheel chair approved!

Ahhhhhhhhhh........it's the weekend!

Today Daniel went to Early Intervention (from now on known as EI).

As I have stated before in previous posts, I am very excited for this year. I think with the group involved and the plans we (Daniel's family) have for him this year, it should be an event filled year.

The consultant from Oakland Schools came to "watch" Daniel and see how he was doing speech wise compared to last year. She said she was impressed that we were right on target and Daniel (for those of you who are new, he is non-verbal) is doing wonderfully with his eye gazing to let us know what he wants. He is making choices, he is using his arms to touch the objects/pictures/buttons & switches. He knows the steps for eye gazing, and he is beginning to really make a lot of decisions in what he wants. Its not me just giving him a toy anymore, its him TELLING me with his eyes which toy he wants. What color marker he wants to use, or what book he wants to read.

His speech therapist (Mrs. A), came to Daniel's hospital based speech/augmentative therapy this past week. Which by the way I think is WAY COOL. She actually took time off her normal schedule and drove 45 minutes to Daniel's therapy session to sit in on it and see how Ms. Pat worked with Daniel and the things they were doing. She saw Daniel in his element. He just absolutely excels when he is with Ms. Pat. She gets him doing things that I never thought we'd be able to do. Or as a matter of fact, she does things with him that I would have never thought to do. I always leave there with so many ideas and different ways to work with Daniel. I think I love Ms. Pat more that Daniel! :)

Anyways back on subject (I tend to ramble!) at EI, the consultant from Oakland Schools said that Daniel was doing really well and she'd be back in a couple of weeks with some voice boxes, to get Daniel use to when he pushes a button it will speak what he wants. (ex: I want to play with the bubbles, or I want to eat.) She is also going to bring out a DynaVox for me to see. Now mind you Daniel is not ready for a DynoVox YET.......notice that I said YET!!! Because I have faith that he will be some day in the very near future.

It was exciting today because Drew (Daniel's friend from EI) was back in school today. Drew has been sick and in and out of the hospital for the past month or so, so it was very nice to see him there. We also found out today that another little girl with CP will be starting to attend EI, that is about the same age as Daniel and Drew. From my understand this little girl has more mobility than Daniel, so I am hoping that Daniel will see that she can either roll and/or crawl to something she wants. I believe that Daniel, once he sees this on a regular basis and because his truck is getting stronger he should hopefully be able to do it in the next year. maybe it will be sooner........he continually amazes me, so who knows.

This weekend we are going to go treat or treating in downtown. All the stores set up and have little toys or treats for the kids in costume. We did it last year but Daniel wasn't really old enough to understand it. I think this year he'll have a blast. I will upload some pictures of our "treat or treating" this weekend!

Thanks for coming to visit, and remember, if you can........say a little prayer for Grandma T.
She is very sick and needs all the prayers she can get. Take care and I hope everyone has a wonderfully exciting weekend!

The Big Guy on the Treadmill!

Here is Daniel on the treadmill for the first time. Please do not take note of his posture as we know it is horrible right now. What we were looking for is to make sure he understood what to do with his feet and legs. We added music because all you would have heard is Daniel screaming and giggling!! His screams are quite high pitched and we didn't want to damage anyones hearing! He did pretty darn good for his first time.

Make an on-line slideshow at www.OneTrueMedia.com

WOW, can I breathe now??

Gosh, I thought life was hectic about 3 months ago, but sheesh....when it hits the fan it really hits hard!

So, here's the low down.

1) Its been one week since Daniel has been off the ACTH, we are still seizure free (everyone knock on wood please. Thank you!) His personality is back with flying colors and he LOVES therapy again! No more crankiness from the ACTH (there is some fussiness from #3 below!). I swear he is getting chubbier since he's off the steroids.

Daniel is also not eating everything in sight like he was while on the ACTH, but he still says "yummm" when anyone has food! (he's so cute!)

2) Hubby got some free tickets to see Nemo on Ice (which I was oh so happy to get!). Wasn't sure how Daniel would do with it but he so loved it. It was a nice time out. Brittany and Victoria got to come along too. So you can only imagine how much fun Daniel had with them. Ms. Carol & her little girl were there too. We were in a suite, which was way cool, free food and drinks. It amazes me how much things cost there....a snow cone.....$10.00. Can you believe that $10? for flavored ice??? sheesh! The minute the show started, Daniel eyes were glued! Absolutely loved it! We just "splurge" and get Daniel the Nemo hat w/cotton candy....now if it only fit!!!

3) My grandson (gosh that's weird!) is doing very well, along with his mommy. Boy that child has so lungs. For the first two days of his life he didn't make a peep....I suppose he was storing it up for when he got home from the hospital! Well at least he knows how to behave in public right?!?! Every parents nightmare! Daniel's still not too sure what to think of little "z". I know that he thinks it's extremely funny when the baby cries or if you want to send Daniel over the edge into fits of hysterics....bring him around the baby when he has the hiccups! Its a hoot! He does get a bit jealous when he sees me holding the baby. He'll do his little boo-boo lip and pout. Its very cute! Here he is pretending to play the harmonica! tee hee hee.

4) My oldest daughter is settling into her new house, they are still working on getting things cleaned up and to their liking but they are "homeowners"! She is so excited to have her first Halloween there. Remember when ...."Oh that was our first Christmas.....that was our first night there, .....that was our first snow storm...." all that mushy crap! After you get older you're like "Yeah whatever!" LOL. But I am glad she is happy.

5) My college child is doing well. She doesn't understand that she isn't around the block, she is hours away. So she calls....will you come get me.....my response....."Oh sure, what the heck, I've got 10 hours to spare!" I will say this, it is nice to have her home. Plus the fall colors are so pretty on the drive.

6) My little girl, the high schooler....she's doing really, really well, hanging in there, good grades, doing the sports and just having fun. That's what they're supposed to be doing right? Here she is at her first high school "homecoming". She's the one on the left. Isn't she pretty?!?!

7) Daniel is doing so well at all of his therapies, we are so proud of him. Here is a little picture of his latest at physical therapy. Please note that we are not looking at his posture at all we are just looking at the fact that he is able to get his legs going in the correct motion. This was the first time Daniel had ever used this equipment so we were all very happy with how well he did. Yep that's Daniel on a treadmill. He walked for 15 minutes!! Wha Whoooo!

8) On a sad note, Daniel & the girls Grandma, isn't doing really well right now with her fight against her cancer. Seems that the cancer is winning right now, but hopefully she is able to hear every ones prayers and she will soon be able to fight back. If everyone could add Betty to your prayer list it would be greatly appreciated. She needs it right now. And I would certainly appreciate it.