Sunday, February 28, 2010

What a winter its been

Well here it is...Sunday. We are snowed in yet again! It has been snowing since Friday...the kids had a snow day so it was a nice long weekend for them...a little too long for me though...LOL! If I have to hear another "I'm bored"...I think I will scream! LOL!!!

We have all been seems like the sickness just doesn't want to leave!
I HATE the (sorry tmi) poop, puke, and snots!!! I have washed more laundry these last 3 months more than ever! Kenny is constantly coughing(and puking from it)...and since he sleeps in our bed (head banging and health reasons), our sheets and pillows have been washed every night!
Oh and to top it all off...since Kenny has been sick...I mean, really sick...he hasn't been able to get to his speech therapy. I've called them every week for the past 4 weeks to tell them that he's been sick...well...I got a letter from the director saying that his therapy has been terminated because of too many missed appointments! WTHeck?!?!?!
I cant help it that he has been in the hospital then home with fevers, upper respiratory problems, stomach and intestinal (puke and poop) problems...etc...I knew this was gonna happen...I just knew it! I take him to school, the next week, he gets sick...I take him to the doctor, the next week, he's sick...The poor kid is ALWAYS SICK! How is he gonna get the special help he needs if he is always sick? *sigh*!
Anyhow...this is the dilemma now...I think I will call Monday and plea my case and see what happens...if anything, I will have to wait until springtime when most of the sickness is over with and I can open the windows to this germ infested house! I dunno. Is there any other micro preemie moms that are experiencing the same problems?
Please say I'm not alone.

Sunday, February 21, 2010

"Shoes" a poem by me

Some days it seems life is very hard
to try to walk that extra yard.

Not knowing what tomorrow will bring
we must have faith in our God, our King.
Every day is something new
would it be better in another's shoe?

The sleepless nights of worry and fright
praying to God with all of our might.

The questions of why will always be
why did the twins come early for me?

From excited, determined, scared and sad
lets not forget the feeling of mad.

Seeing them both, so perfect yet small
wondering how they could survive if at all.

Their eyes still fused, the machines all working
who knew that death was waiting...just lurking.

That day was the worst, the saddest you see
How could this happen, losing our angel, our baby "twin B".

Always thinking of losing our perfect little Nick
but understanding and knowing that he was so sick.

He is with our family in Heaven, up above
feeling no pain, just all our love.

The smell, the look, the feel of him
I will keep in my heart...never to dim.

Kenny got stronger and healthier each day
came home months later from his birthday in May.

Since then he's been a trooper, resilient and strong
no match for the problems and all that is wrong.

My hero he is, for he's been through so much
being born so early with disabilities and such.

Odds against him, he fought and he won.
I am so proud to call him my son.

I have been so blessed with all my children you see
they all have been God sent from Heaven to me!

Our deep love for each other is how they were made
So much to give thanks for, these shoes I wont trade.

Friday, February 19, 2010

Kenny's headbanging

This is what every other day brings us with Kenny. This usually starts when he wakes up in the morning to the time he goes to bed at night. When he acts like this, he doesn't want to be held, doesn't want to play, eat, crawl, walk...nothing. He is just unhappy ALL DAY LONG...screaming, crying and headbanging. We put his helmet on him because he will try to bang his head without it and hurt himself. We just don't know what to do for him...and it has been every other day lately. We think its because of his medication for seizures but we are not sure. My heart is breaking for him because there is nothing we do to console him...nothing.

The continuation of above...

Monday, February 15, 2010

This and that

Happy Wednesday everyone!

We started the week off with Kenny being crabby. Its been every other day that he has been inconsolable. The screaming, the crying, and lets not forget the head banging! UGH! When he wakes up like this...he is like this for the whole day. On top of all that, we have the stomach flu here. He hasn't been in school lately because of being sick every week. He has his pulmonologist appt. today at 1:30 so we will know more on how his lungs are doing. On another note...

We had an asbestos remover come over and give us an estimate on where, how much, and how much it would be to remove the asbestos...first off, we have asbestos on all of our heater vents, in the basement on the furnace, in the plaster on the walls and also underneath the siding, surrounding the whole house....yeah..nice.
We also had a contractor come and tell us everything that is wrong with out house (boy, now I know why no one even looked at our house...glad we took it off the market). We have rotting wood everywhere, black mold in the basement and in Tony's shop, the floor beams are rotting and are bowed which is making the side walls of the house to push out. The electrical is old and outdated...and more. I didnt think so much was wrong with the is very deceiving...what just a little paint and caulk can do for a house...LOL! Anyhow, I am hoping that these are not the reasons why my kids have bad asthma and such. It sucks.
There is nothing we can do about it right now except live with it and just keep the faith

When life gets tough, I am your hiding place...I'll protect you from trouble, surrounding you with songs of deliverance...Give Me all your worries and watch Me sustain you and your family...No matter how bleak things may seem, I'll never let the righteous fall.

Monday, February 1, 2010

Another hospital stay

I know that I have been far and few in-between on posting...but we seem to have a sickness in this house that Germ-X wont even keep away. Kenny was back at the hospital a few days ago with coughing, fever, and sleeping all day...not a good combo. They did a chest x-ray and found something but wasn't sure if it was pneumonia or not...yeah...I know...what kind of doctors cant figure the stupid x-ray out...ANYHOW....they hydrated him with fluids, gave him antibiotics (just to be sure), sent him home on his usual...Pulmicort, Prednisolone and Albuterol...and to call his primary doctor on Monday...which we did. In the meantime, Gina is sick, Taylor, Sydnie and Kayleigh are all sick too! Oh wait...add me to the list! No sleeping for Tony or's breathing treatments and calming coughing crying kids...UGH! update this....I took Kenny to his Comprehension Care appt., which is just a routine check up...well, they took one look at him, saw that he lost 1 lb., and that he just looked bad and admitted him! They ran tests and concluded that he has RSV. The doctors want to make sure that he his hydrated and not struggling to breath. They told me that the reason he is in the Comprehensive Care program there, is because his needs are more than that of a "normal" child. He has "special needs" because of being a micro preemie and also because of his Bronchopulmonary Dysplasia (BPD) other words, he has Chronic Lung Disease so any cold that he gets, goes right to his lungs. His "colds" are more than just colds...they could be deadly for him if not treated properly.
Oh yeah...can you feel the stress just building up inside of me...UGH!!!!

So I stayed with him for the most part of the day but I had to leave him.
The worst feeling in the world is walking out of a hospital room with your child crying for you. My heart is broken. I had to leave him because I have 6 other kids at home that need me there too. Tony is working...if he doesn't work...which he did during the day time, he doesn't get turn, we don't pay bills. So he HAS to work and I HAVE to be doesn't make me feel any better. Its bad enough that I had to hold him down while they were taking his blood and swabbing his nose. To see him cry...UGH...I am torn. I want to be here with the kids yet my mind is thinking of Kenny alone in his hospital bed. He drinks his bottles throughout the night...sitting up and reaching over to me, waiting for me to hand him one from the floor next to the bed. Sometimes me waking up to Kenny smashed up against me...the way he sleeps on his tummy with his hands under his belly...or him sleeping sideways in our Tony and I...I usually get his head on my side while Tony gets kicked with Kenny's feet. LOL! I'm not there to give him his bottle, to cover him back up with the blanket when he gets cold, or to even smash up against for that little extra cuddle time. Darn it!

I hate flu and RSV season...I hate it with a passion. I go and try to make sure the house is clean and disinfected. I get the kids vaccinated, and try to keep them out of the public for fear of getting sick....yet this year, they have all been the sickest! I just don't get it. Its bad enough that there is so much stress surrounding our house because of many reasons, but it just doesn't stop. Its one thing after another, after another...there is only so much a person...a family can take...really! I just want to be able to enjoy life, and so far...its been...well, to be honest, pretty much a nightmare! I want Kenny to be healthy, to not bang his head, to not have any disabilities or delays or anything. I want my other children to not have so much stress on them. I want them to have a fun and happy childhood, to not have to worry about their little brother or to even feel sad about losing their other little brother. No child should ever feel that kind of loss...the loss of a sibling, at such young ages. I want them to all be happy and healthy.

I want to ask if, you all can say prayers for Kenny, our family and some friends of mine. I hate how this year has started off really bad. We could use as many prayers a possible. One good friend is having a hard time with the loss of her father, cousin and uncle on top of her little baby who has pneumonia...and my other good friend is having surgery to remove a tumor that is by her pituitary gland...both of my friends have hearts of gold, would do anything for anyone and are just great women. So please keep them in your prayers!
So onto another day, we forge on...we must...we will.