Tuesday, December 29, 2009

Whats with Keppra anyhow?

Keppra seems to have a terrible hold on Kenny. He has meltdowns every day! These meltdowns are just horrible. Nothing triggers it/nothing helps it. He doesn't want to be held, but doesn't want to be put down...the headbanging had gotten out of hand with these fits as well! I HATE what has been dealt to our little Kenny! He has lost the glimmer of love and innocents in his eyes...he looks tired, upset and just irritated by everything. Light seems to bother him more than ever. He is up all night long either drinking his bottle (goes through about 4, 4 0z bottles a night) or crying. I feel so bad for him. He doesn't sleep at night...which in turn, keeps Gina up because she sleeps in our room with us and Kenny. So Tony and I don't sleep at night. We are in a no win situation...if he doesnt take it, he will get seizures, but then, while on it, his meltdowns are heartbreaking! Oh yeah...this has turned into a nightmare!
See...you can kind of see the look in his eyes in this picture...
I also feel bad for my other kids because we are not able to spend time with them playing with them, doing things with them, because of Kenny. It's just a mess. Tony and I are exhausted because of everything going on. I am so afraid for Kenny and everything that is going on with him...the seizures, the lung disease, the hearing loss, the developmental delays....etc...I just want things to be good for a little boy that has been through so much in his 2 1/2 years...what will the future hold for him? I want it to be great. I want him to live to a ripe old age. I want him to have a very happy, successful, fulfilling, wonderful life...just like I want for all my kids...I want him to be normal!!!!
I want my other kids to not hate us and understand that we are not ignoring them...or not able to do things like a normal family can because of the circumstances. We want to go places with them. Do fun stuff with them. Have sleepovers with their friends. Spend quality time with them...but its just not that easy...it's almost impossible. Oh how I wish we could be a normal, happy, healthy family...this really stinks!
We do have one Christmas present that Tony and I have gotten...Kenny LOVES to walk.
He is still very unbalanced, but he is all over the house! Still crawls when he wants to get somewhere fast, but he is very proud of walking...oh...and he learned a new sign...the sign for "my turn"! Its AWESOME!

On another note...the house that we wanted...really really bad...the 2500 sq ft. foreclosure...the one that would have been perfect for our large family...the one that I saw us living in, growing old in...the one that we put our house on the market for....as life has it...there is a "sale pending" on it...and its not us that its pending for! Yeah..great. I have been searching and searching for a house that is that size, not too far away, and something we can get approved for...there is nothing out there for under $250,000 for a 4 bdrm, 2 bath, 2500 sq. ft home. I am sick...now our house is STILL on the market and there is nothing for us to move into! We need a miracle, and need it to happen this year. I just don't know what to say anymore. Its just not that great. Christmas was very low key...which was great...not what we wanted, but what we could afford. I know the kids were a little disappointed, but Santa couldn't go crazy this year. It's not about the gifts anyhow...we were together, as a family...and that's all that mattered!

So I am hoping and praying that good luck and a miracle could make its way to our family...its been a bad 3 years...its got to get better...right?
Here is a pic of our tree Christmas morning...before the kids woke up...The girls decide to color a picture of Santa and the reindeer for Santa...notice the Duck Tape! LOL!!!Merry Christmas to our angel Nick...We miss you!

Thursday, December 24, 2009

It's a Wonderful Life (Classic)

Here for your Christmas Eve pleasure....a site to watch everything Christmas...from past Christmas movies, sitcom episodes, cartoons...everything!!!!
Enjoy everyone...and from our family to yours,

Merry Christmas!

God bless you all, and may your Christmas and the New Year bring prosperity, health and happiness to you all.

Tuesday, December 22, 2009

A few days before Christmas

A few days before Christmas and all through the house...
all the kids were going stir crazy, not quiet like a mouse.
the stocking were knocked down by the chimney without care...
in hopes that their mom wouldn't notice they were there.

The children were sleeping, snuggled up in OUR bed,
while visions of alone time danced in OUR heads.
Tony at work and three kids in our bed,
just started a night of sleeplessness is what I had said.

When in the crib there rose such a clatter...
I jumped from the bed to see what was the matter..
Just a step away, I got there in a flash
tore open my knee and left a big gash.

The moon shining in through the window at night
added to the turmoil that was my worst fright.
When what to my very sleepy eyes should appear
a coughing, crying Kenny with a breathing treatment so near

With Gina in one arm and Kenny in the other
I knew in a moment that this was a call for their mother (me).
No coffee to drink and the house oh so small...
all kids would be up in no time at all.

Now Morgan! Now, Gina! Now, Kayleigh and Sydnie!
Come on Tony, and Taylor, and Kenny, I plea!
Back to your own beds, on this very hectic night.
Calgon..take me away, take me away, take me from this plight!

And then in a twinkle I heard him come in
My wonderful husband with coffee (and gin) *not really...just had to rhyme "in". lol
As I turned around while crying out loud
my hubby held me tight, made my love for him proud.

Our life has been tough, every year it gets worse
sometime we think that we are under a curse.
The house we must sell in hopes to get by
We want more for our kids, to better we must try.

The cookies not baked, the cards are not out
the wrapping is not done, Oh darn! I must shout!
The music is playing some old classic tune,
seems like the loads of laundry will last until June!

As Christmastime comes, we reflect on the past.
Joy, love and peace with some good health that will last.
remembering those we've lost along the way
We miss and we love you is what we will say.

So even though life isn't so great
I give thanks to our God for giving us our eight!
I give thanks to God also, for family and friends...
I am glad that you're in our lives as this year ends!

Please know in our hearts that you all will always be
this life is about loving and caring you see.
the sickness, the bad luck, the financial strain
is just a short step to everlasting gain.

Even though our lives are busy with way too much strife
I want to be apart of everyone's life.
a true friend, a good wife, and great mommy too...
is what I will strive for, to reach...yes, to do.

From our family to yours, may Gods light shine so bright
Merry Christmas to all and to all a good night.

Wednesday, December 16, 2009

On our anniversary

I would like to take this time to wish my husband a very Happy Anniversary. The years have not been very kind to us, but we have withstood the test of time and fought back. Thank you for 14 years of marriage and 8 beautiful children. You are my rock...my pillow...and my best friend (even if you don't like squirrels). I admire your perseverance and faith. You are the love of my life and am so glad that God put you in my life.
I know that many of these years have been tough...emotionally, financially, physically...but this is just a test...we WILL get a nicer, bigger home...we WILL always have Nick in our lives...we WILL have a happy and healthy family...we WILL get everything we ever wanted (hopefully)...and WE WILL do it together, forever!
I love you, love you with my heart and soul (even though I am a brat sometimes) ;)
Forever yours,

I also want to wish my brother-in-law, Johnnie who is more of a brother to me than an in-law...a VERY Happy Birthday...Love ya tons!

Tuesday, December 8, 2009

Back To (thinking about) The Future

I'm sitting here this morning thinking, "wow...only 17 days left til Christmas!" I just cant believe that its almost here. I am usually so into it. This year, its kind of slipping by. I just don't have it in me this year. Maybe its because of trying to fix the house up to sell...we do have that "for sale" sign sitting in our front yard. Maybe its all the sickness that has plagued our house and kids for the past 3 months...I don't know. Just not into it. I should for the kids sake at least make cookies or something. The tree is up, stocking are hung, and the garland is laid out....but, *sigh* I'm just not feeling the spirit. It's got to get better. Right?
I am so paranoid about leaving Kenny along...even to go to the bathroom in fear that he will have another seizure. He hasn't had one since the night that the ambulance came, but I am so scared. We go Wednesday to the doctor, so you better believe that there are going to be questions after questions coming from me. Like, how can a little boy get so sick in just minutes? How did my little one get Sepsis when he was fine, or at least looked and acted fine minutes before he had a seizure...and what the heck is with the seizure? Why did it last about 20-30 minutes? Why didn't they see that he was having seizures when he was an infant? He had absolutely no brain bleeds when he was in the NICU...so why does my little boy have to have so many things wrong with him? Its NOT FAIR!!! My baby didn't do anything wrong in his little life to:

1)Lose his twin brother. The best gift I could have received from God is my twin. We went through life and did everything together. I never felt alone, ever. My Kenny will never know what that is like...I feel so sad for him.

2)End up with hearing loss. Without his hearing aids, he cant hear birds chirping, soft music playing, or even the sounds of wind hitting the trees or leaves...its not fair!

3)Have developmental delays where he cant talk, walk, or do things like others his age..he sits and bangs his head out of frustration..how can that be good?!

4)Have such bad lungs that he is on meds two times a day just to keep them open and strong...but usually ends up in the hospital 2 times a year or more.

5)Now he has Epilepsy. Meds twice a day and who knows when the next seizure will strike.

5)Cant eat solids and not able to gain weight. Doesn't God know, in order for his lungs and brain to develop correctly, he need to gain weight and fat? Without it, he will continue to not develop mentally and physically. And his lungs will continue to give him trouble throughout his life...they stop growing at a certain age...so when that age strikes, whatever his lungs are like at that time, they will always be like that. *sigh*.

Then I sit and think...Will he ever walk, talk or even have some sort of normal life. Did we do the right thing by keeping him alive all those months in the NICU? I know we did because of his beautiful smile he gives us, but I pray to God that we did what He wanted us to do. I want the best for him and for the rest of my kids. I want him to have girlfriends, get jobs, you know...have a normal life. What will life be like for him...or for the rest of our kids for that matter. Why is it that some families have an easy time at things...money, success, health and happiness, while others like ours, have it so tough? I have to say those 3 things...in that order because with money comes health...you can get better medical care, have the necessities of keeping a sick child healthier, etc... Also, with money you are more successful in your career...money makes money...you cant start and keep a business without first having money...(example...Tony wanting to better his business...cant get the better equipment without money).

It can be overwhelming at times...if I think about it.

~deep breath~

OK...now that I have aired out my sadness and frustrations I do have to be very thankful for many things (I have to do this or else I'll get very down on myself and life in general)...

1)My children. They are beautiful, loving and very polite...not at home...lol...just when they are around others...and that's OK!). Also my husband. He is amazing. A hard worker...a caring, loving man who would give the shirt off his back for anyone. Even though he doesn't like animals...I love him with all my heart and soul. He keeps me going. We have the same hopes, dreams and goals which is totally cool! And after being together 20 years...married for 14, 8 kids later...we still have that flame!!!

2)My family. My parents and in-laws, sisters and nieces and nephews...They have come through when we really needed them...physically needed them AND emotionally...there have been many times when Tony and I were at the worst of life...the whole NICU stay, Nicks death, several injuries from head gashes to slivers, with the kids...to hospital stays and financial hardships...to just being an ear to listen to me blabber on and on about this or that...that they have been there for us.

3)My friends. My old friends from years past to recent friends...I thank God for you all. Even though, more so than not, I've been MIA because of all the sh$$ that is going on here at the Tomecko house. I feel very blessed to have all of you in my life. At times I am not that great of a friend...I know that. I have been moody, down to the point where I don't want to call or talk to anyone. But you all have still stood by me and I love you all for that!

4)My love for animals. Yes, it could be a curse too...but I love taking care of animals...hence...Leo the squirrel.

5)And lastly, my creativity!

This pretty much sums things up today. Please keep our family in your prayers...we could really use them...for many reasons. Have a great day everyone.