This week is the hardest for me

For the next few days, I am going to be writing some thing to honor Nick and Kenny's birthday and Nick's passing. For me, this week is a tough one. Every year for the last 3 years and for the rest of my life, on May 2nd I will always remember...more than just a normal delivery of a child full term child. I gave birth to my twins at 23 weeks gestation (17 weeks early). 1 pound 7 ounces.

It made me fall to my knees. It will always make me wonder. It is a time of excitement and fear.

It is Kenny and it was Nick.

Three Years Ago...

3 years ago seems like yesterday.

I can remember each moment...

I can remember each second.

praying so hard,

not knowing what else to do.

How could this be happening?

What was our future shaping into?

The feeling of life...

every movement,

every kick, was so wonderful.

The reality of it all was just so against us.

God, it was happening...

we were going to see you both.

The uncertainty of what was going to be...

The unknown...

was so numbingly real.

To be so excited and happy about having you both...

yet knowing that the odds of survival were so, so low.

What were we to do?

I cried,

cried until there was just nothing left.

I prayed,

prayed but was so sure God abandoned me.

Five months of praying,

it came down to this very day...

This very moment.

The cut left a scar more than just physical,

much deeper than that.

Taking you both from me,

knowing that it wasn't in my hands now...

you were in Gods hands...

you always were.

To get excited like other new parents of twins,

it didn't happen.

In recovery, I sat there

numb...just numb.

Do I pray for your forgiveness?

What else was there to do?

What else was there to feel?

Laying my eyes on you for the first time,

God you both were perfect.

So shockingly small, but so perfect.

Couldn't touch you,

couldn't hold you,

didn't know if you'd make it through the night.

Brave little boys, my brave little boys...

God blessed me with two perfect babies

that were just born too early.

What was the reason?

Show me why God.

Then He did.

He showed me,

he showed us all.

No matter how small,

He makes no mistakes.

Through triumph and tragedy,

tears, pain, laughter and happiness...

He makes no mistakes.

Three years...

Three years He has shown

how beautiful life can be

and also how delicate it is.

We celebrate life.

We celebrate our twins,

One in Heaven and one on Earth.

We celebrate the smallest of miracles.

We celebrate the accomplishments, the struggles,

the smiles and the painful tears.

Life is a struggle.

Its not easy

not knowing...

not knowing what tomorrow or even the next hour will bring.

Still searching for the reason,

but understanding

its all in the hands and plans of God.

Three years ago

Three years ago you made my life forever better.

harder than most,

but so much better.

To see things from another view.

To have helped and to be helped.

Been hurt and scared.

Hurt by seeing you helpless, sick and struggle...

and scared of losing you

and scared for our family

your brother and sisters.

Scared that they now understand heartache.

Heartache of loosing a sibling

Heartache of watching you sick so much.

Scared for what tomorrow holds.

The people...

The people that have walked this journey with us

amazing to say the least.

I would never have known this life,

the people,

the caring loving people...

the true value of life,

the true value of family and friends.

Others that are struggling with illness and disabilities,

disabilities and illnesses that could change life in an instant.

The loving smiles,

kind gestures

and knowing we're not the only ones.

We're not alone.

Seeing that there is more in life.

more than just

trips, money, and materialistic things

Our big family has love, understanding, acceptance and faith.

We are also gaining courage.

No matter what tomorrow holds

for you and your brother and sisters...

I will hold your hands.

Help you through each day.

I will laugh with you,

cry with you...

wipe away your tears.

I will push you to do your best,

and pick you up when you fall.

I will be stern in your daily medical needs

but also let you be a little boy.

I will not let you forget you are a twin,

but let you move on as an individual.

Be proud of who and what you are here for.

Three years it has been, three years in our lives and hearts.

Immunology and Pulmonology

OK, so latest update on the Ken-man. We went to the pulmonologist/immunologist yesterday...very good appointment! Great doctor. We are taking him this afternoon for blood work and a urine sample to test him for EVERYTHING...from Cystic Fibrosis to allergies, We are leaving no stone unturned as to why he gets sick all the time with upper respiratory infections and sepsis. He is setting up an appt for Kenny to see a cardiologist because he said that it was 3 years too long that he has been seen last by one. He had a PDA ligation at 7 days old to close it, but he has also had a heart murmur...and with all his symptoms, he feels it best that he gets his heart checked out because it just to make sure it's still closed and that there are no underlying heart problems...I have been worried about this for about a year now...I guess it is mothers intuition or something.

He also is putting in an order for Kenny to get his eyes fixed! He had ROP stages 2 & 3 while in the NICU and had laser eye surgery to correct it. But now his eyes are starting to cross and stay crossed more and more.
So overall, a great doctors appointment!

And while I was there, I was asking him questions about me. The ER diagnosed me with and upper respiratory infection (acute bronchitis) and Pleurisy...well, I've been on 3 rounds of antibiotics and nothing. He wants ME to see a pulmonologist...so that is what I'll be setting up later on today. They are leaning towards the pneumonia side of it, but the one hospital that I took the latest x-ray at, lost my x-rays...LOL. I am hoping its not Pneumonia and its just this stupid pleurisy and infection, but I really feel the worst I've felt in all my life...I did get my voice back (for the most part). I don't have time to be sick, I really don't. Waaay to much to do and people to take care of.
We are headed to the time of year that I dread. April 21, 2007 I went into the hospital on total bed rest...for 2 weeks I was scared to death, prayed and begged God to keep my twins safe. May 2nd, I had them...2 days later, Nick died and then on May 11th, we buried him. Here I am, 3 years later, I wish those weeks never happened. This used to be the most beautiful time of year for me, flowers are out, warm weather after a bad Cleveland winter, Mother's Day, Communions...I loved it...now it is all just a bad reminder of what I never wanted to happen to me. I am sure, in time, these feelings will not be as strong. My Kenny is here, alive and that is all that matters. And my precious angel Nick, I just wish I had the opportunity to see him grow, like Kenny...get hugs from him, see him smile, open his eyes...I know everyone says that God only gives you what you can handle....I wish he would have had a little more confidence in me to be able to care for Nick. But on the other hand, he is with my brother and all of the other family and friends who have gone before us and from what I heard, its supposed to be a kick-butt place to hang...so at least I have my beautiful memories of him, holding him, talking to him. I know Nick is totally watching over Kenny and helping him through all the tough times that have happened and will happen to him...that brings me comfort.

another update on LL Cool K

He is home! He came home on Sunday afternoon. His fever broke and he was starting to drink his bottles. What a very scary couple of days! We thought for sure that he had sepsis again...but nope! Basically he had an infection and virus that caused a very high fever which triggered his epileptic seizure. So from this point on, I am going to be a nervous wreck every time he gets sick. Our saving grace is that he was allowed visitors this time around. They upped his Trileptal dosage a little bit and that is pretty much it.

I can only hold my breath and pray that his next seizure will be easier on me. It really took a lot out of me, especially since I have been sick with this horrible upper respiratory infection/pleurisy thing. I am exhausted beyond belief, I have no voice and am in pain...but hey, if my little fighter can pull through what he has gone through...and still smile, I can too! The housework is slowly getting done, the laundry too. We have doc appts after doc appts to start going to just because he and I have been so sick.

Which brings me to another point...

We need donations for the March of Dimes walk this Sunday! I know there is only 4 days left, so any amount would do! This is going to be our second walk and we are all very excited about it. So anyone out there that wants to donate...it would be greatly appreciated! :)

http://www.marchforbabies.org/personal_page.asp?pp=1886866&ct=4&w=4032059&u=mtomecko&bt=11

And on to other news...Gina is babbling, very cute I might add! I kinda missed this part of toddler hood. Kenny hasn't gotten to this point yet, so its so cute to see this.

And finally, on the Extreme Makeover Home Edition news...nothing yet, but even if there was, we couldn't say anything...(so if any of you readers out there want to send them an e-mail or regular mail...please do so)...we moved out broken dishwasher out to find this...

See, looks don't mean everything...its what is hidden behind the nice cabinets...UGH~

I can just imagine what is under the sink part (on the left). Not only is there rotted wood, mildew and mold, but we have ants galore! niiiiiiiice

Thanks for reading my blog. I really, really appreciate it. Sometimes I need a place to write out my vents. Thanks for listening to my rants and rave.

Heaven's Very Special Child

This was given to my husband from someone he met with today who also has a special needs child...I just wanted to share. It brought tears to our eyes...

Heaven's Very Special Child

A meeting was held quite far from Earth
it was time again for another birth.
Said the angels to the Lord above...
"this special child will need much love.
His progress may be very slow,
accomplishments he may not show.
And he'll require extra care,
from the folks he meets down there.
He may not run or laugh or play,
his thoughts may seem quite far away.
So many times he will be labeled...
different, helpless and disabled.
So lets be careful where he is sent,
we want his life to be content.
Please Lord find the parents who
will do a special job for you.
They will not realize right away,
the leading role they are asked to play.
But with this child sent from above,
comes a stronger faith, and richer love.
And soon they'll know the privilege given,
in caring for their gift from heaven.
Their precious charge, so meek and mild
is heaven's very special child."

Will this nightmare every end?

There is a reason why this blog has been so dead for the past week...a whole lot has happened. I've been feeling kinda crummy, so on Sunday I went to the ER because...well...when you cant catch your breath, get dizzy trying to breath, pain in the lungs and laryngitis...I figured I'd better get looked at. Come to find out that I have an upper respiratory infection, acute bronchitis and pleurisy. Ouch. So finally they gave me antibiotics and pain meds and sent me home. Its been a looong week. I have been exhausted. All I want to do is sleep, but laying down hurts my lungs. I have so much to do, that if I do rest, I am afraid I wont get up...really! I've also been worried that Kenny was coming down with something, even as far back as last Friday. I brought him in for his weight check and I mentioned to the doctor that it seemed like he was coming down with something. He was doing the post nasal drip gag sounds he makes (when he gets sick) and had a cough every once in a while. So fast forward to Tuesday night. He started this coughing at night...nothing major, just a little cough. By Wednesday morning, his nose was running like crazy. I put a call into the doctors at his Comprehensive Care and told them that I was concerned and that he was shaking like crazy, wasn't sure if it was small seizures or not...but then I decided to take his temp and it was 102. Ahhh...duh....THATS why he was shaking...fever!!! So they told me to switch off giving him Tylenol/Motrin, which I did. It broke the fever and he went outside(on the deck) to play...he was feeling pretty good. He didn't want to lay around or anything. About 7:30 pm, he wanted me to hold him. I changed him into his pj's and gave him a bottle, rocked him on the rocking chair where he fell sleep. My sister Andrea and her son, Dominic came over around this time...which she never does on a school night...I laid him on the couch to sleep (still no fever). Now, keep in mind, Tony, my husband was at the school in a meeting...phone not working there. At about 8-ish, we both(my sister and I) happen to walk into the living room and looked at Kenny on the couch where he was staring upwards. We both looked at each other and Andrea asked if he was alright...I wasn't sure until I went over to him and tried to snap him out of it. Then at that point, I knew he was having a seizure. He was burning up and just staring. I walked around holding him upright for a while (i was panicking, crying...not very brave)...we had little Tony and Dominic call 911 and I then gave him his Diastat, which I honestly never thought I'd have to administer to him. I stripped him down of his clothes and Andrea threw me a bag of peas to put on his head...it was horrible. The ambulance came and I ran him out to them instead of waiting for them to come in. The paramedics were the same ones from when Kenny had his seizure in November...they remembered everything! I just have to say that they were Awesome! I sent Tony and Dominic up to the school on their bikes to get my husband because he had no clue what was going on. I was trying to stay calm and remember all the meds...of which I know now to type something up (which I am doing today) that has ALL of his meds on it and All of his diagnoses on it. I was trying to remember everything and some things just came up blank! UGH!

Anyhow, he is now at his 2nd home, MetroHealth. On his favorite floor with his favorite nurses. When they wheeled him up from the ER (he was still really out of it) all the nurses were welcoming him back. It was cute.

They took tons of blood and swabs to culture to see what type of infection there is and where. His fever has been coming and going...as of last night, it was 102 and steady. So that is where we are at this point. His lungs sound and look clear...thank God, so its just a matter of trying to figure out what is going on with him. One thing is for sure, we now know one of his epilepsy triggers...a fever/virus.

I haven't been able to sleep there because I am so sick, so leaving him is just killing us! This whole thing...very overwhelming. I know that there is a reason for this...not sure what, but there is. Tony and I are becoming very tough skinned when it comes to things. Heck, I even hold Kenny's arm when they need to put an IV in him! LOL. We don't need anything but if you could just say a prayer for Kenny, that would be very deeply appreciated. The poor kid has been through more in his almost 3 years of life than any adult I know. We could also use some prayers as well (Tony and I). There are people in this world that have no clue. No clue as to what having a chronically ill child with disabilities is like. The terror in when he gets sick...not knowing if he will die (this time) or not. The countless nightmares, the being torn between hospital and having to work and take care of the other kids and the house. My sister Andrea finally saw what we go through...I feel bad that she had to see Kenny have a seizure...its very very scary. It's like looking at my precious little gift from God and seeing him being taken from me. We are exhausted. Emotionally and physically drained but wont let this get us down. I am very grateful to her for being here when it did happen. I was so scared.

Easter 2010

So I sit here unable to sleep. The thoughts of Nick and his dying in front of me keep haunting me. The thoughts of Kenny needing more, the other kids needing more...is just so badly weighing on me. I know that at this point, I need to get respite in to help. To ask for outside help is so hard. I keep trying to think that I can do it all...I mean, I am the mom, I should be able to handle all my kids...including one that has special needs, but I have come to the realization that I cant. I am not supermom. I am a human being that has been through he** and back...and not to my doing. All circumstantial...isn't that so typical? We have been approved for well over a year now for respite care and I fluffed it off like...yeah...we need it. ha....well...who would have thought, we really do. Kenny IS learning. He IS doing more and more each day. But, I have also noticed that he is different. The other day, I sat and watched him for a good 15 minutes taking socks and putting them in one pile...then taking them and making another pile...and then taking them and making yet another pile....it was very cute to see...he was so, so busy making pile after pile...but so not normal. Then the next day, he had pieces of paper and was doing the same thing! So that is where his Autism is rearing its ugly head. Makes me so sad. On another note, he has been eating a lot more. Well, today he only wanted 1 jar of baby food...but for the last 3 days he's been eating about 4-5 jars (6 oz) each of stage 3 baby food! HUGE STEP!! He also learned how to show "1" with his hands...very cute I might add. Still banging his head when he gets irritated and still throws his fits during the day...but I have learned to just hold him and rock him in the rocking chair or try to redirect him to something else...seems to work most of the time. To take that first step to getting respite care...to me....is a kick in the gut. But in order for myself, my husband and my other kids to be happy and healthy, we have to have some sort of help. Even if it is for just a few hours while I help the other kids with their homework or take them somewhere special or to have time for myself. Like I said on Facebook...I am feeling a little defeated in this aspect. I am a mom of 7 living children, I should be able to handle it...but I cant.

Never in a million year did I ever think I'd/we'd be in this situation. I am grateful that God thinks we are strong enough to handle it...and I guess, in a way, we are...I am up for any challenge...but a break would be nice every once in a while.

I had a few people on my FB acct. send me some pretty bad e-mails...I wont go into detail, but it was because we helped a few neighbor families that needed help...and we WANTED to help them...well, these people decided that just because we had so many kids and couldn't afford the better things in life for our kids, including food, why should we be helping others. And another was that we shouldn't of had so many kids if we couldn't care for them the way they should be cared for...well...lets see... the last time I checked, Do unto others as you would have them do unto you, was one of life's greatest sayings. If you just reach out to others...OMG it is such a good feeling! Yeah...we don't have tons, but...we have enough to live and love...to help others that are struggling more than us! Tony's slow season is over...things are picking up (thank God). So we ARE in a position....not great yet, but we can always help our neighbors or strangers down the street. We had people help us, still help us...we want to just pass the good will, the kindness on, that's all. And to all of my FB friends and family, thank you so much for your support. It really makes Tony and I feel so much better that we know we have backing by all of you!

OK...so enough of my wallowing in self pity....on to our Easter and other stuff...

Easter was pretty good. We made a couple of Easter baskets for the family down the street...the kids and parents were very grateful...and we loved helping them out! The Easter Bunny did good this year...not too much candy, just enough! H also didn't put the trail of candy from the bedrooms to the downstairs this year either, which is a family tradition, but because of a slight ant problem, that I was squeamish about, we asked the good ol' Easter B to hold off on the trail this year. LOL).

We did eggs...8 dozen to be exact. And it was very fun! I really miss the swirl eggs that we had when we were growing up, but I guess they don't make them anymore...bummer!

Each kid got a dozen plus, and STILL wanted to dye more! LOL!

As of today (Friday), we still have about 3 dozen left...God I hate hard boiled eggs lol! One can only eat so many before getting sick of them....yep, hit that point...thanks for asking! LOL!

I have also come to the realization that I really need a restaurant style oven...I have no cook top space! I made stuffed artichokes...my family's favorite and sausage and sauerkraut with an Italian flair of Gnocchis!

(This picture of the sausage/sauerkraut is it only halfway cooked)Tony took the older kids to church while I stayed home with Kenny and Gina (I cant have Kenny getting sick from close contact of tons of people). We then ate our huge dinner, went to the cemetery to visit Nick and then to another cemetery to visit our neighbor "uncle Jerry" to the kids, and then over to Tony's sisters house. It was a beautiful day out. Warm and sunny with all the spring flowers all in bloom!

And finally, This beautiful quilt was made for Kenny by the loving, caring people of Love Quilts. They have people from all over make a square then they are put together and made into a very beautiful quilt for children with life threatening or life long illnesses. May God bless them! One of my favorite squares is of an angel holding up a little boy on skates!

An Easter understanding

I for some reason, feel very at peace this Easter with Nick dying after watching this video! I feel very blessed and kind of honored, to have felt the pain, sadness and helplessness of which the Blessed Mother felt when her son, Jesus suffered and died. Knowing that there is something more (well at least, hoping and praying) beyond this life. Holding my son as he was dying and telling him that it was OK, that Mommy and Daddy loved him so much that he should go be with Uncle John. I at least got to tell him that I loved him and got a chance to hold him. Jesus died for me so I can experience that very moment with my son Nick. If there is anything to gain from the death of a child, no matter what age, is that the Blessed Mother felt the same way. There is life after death...for us living and for the loved ones that have passed on.

We plan on going to the cemetery to bring a basket and flowers to my son who was to precious to be here on earth with us and was chosen to be with God in everlasting life!

May your Easter be filled with many blessings and small miracles.

Never forget those that have gone on before us... they are miracles that made up us as...us as caring and loving human beings! God bless you all!

Happy Easter! Pictures of the Tomecko Family Easter to come!

Kenny is home...

Kenny is home!!! THANK GOD!

It has been one of the most trying weeks since the NICU stay....not in terms of his health, but in terms of OMG...what are we going to do? There are 6 other kids at home, Tony has to work...and no one to help. THAT is what we had to deal with...on top of the house just falling apart...homework had to get done, laundry, dishes, dinners, baths, meetings...oh it just never ended! The stress that we are facing in this house is more than what I'd wish on anyone. Sometimes I just feel that He got it all wrong (i know I'm not supposed to say that...but this is how I am feeling), I am not the strong person that He thinks I am. I really am not. There is a lot of sadness, guilt, anxiety, and frustration that is inside of me.

I was giving Kenny and Gina baths yesterday evening...It was just a mommy moment. I was looking at Gina...looking at Kenny and just started to cry. My perfect son...the one I prayed and prayed that him and his twin would be born healthy and on time is not perfect...ok...I know what you are going to say...YES he is perfect...I love him with all my heart and soul, but it just hit me like a ton of bricks...he is a special needs child. There is something wrong with him...physically and mentally. He is beautiful...but he is...slow. His head is small, eyes crossed, tongue sticks out, he looks tired but his smile lights up the room. I love my kids with everything in me. They are what makes me...My only wish and dream was to have healthy and happy children...and this is fading. Because of Kenny being so sick all the time...taking up most of Tony's and my time...the other kids are paying for it. I am so sad about this. I keep asking God, why me...why did I have so many kids, so much heartache, so much struggle in this life? I have never done anything wrong...honestly...not 1 thing wrong...followed life's rules to the "T"! The stress is overpowering. So much that I had to wear a stupid heart monitor a few days ago because of chest pains. It's one thing after another...the trials and tribulations never end...ever.

I know I am not supposed to question God and his plans...I know that. I also know that there is a reason for everything...a reason why people come and go out of your life, a reason why good and bad things happen...but loss...loss of any kind...over and over again...brings me to my knees. From the time that my brother died...everything in between...up until today...and probably tomorrow, I am on my knees asking why, what if, and is there something more that I should have done or should be doing.

I have given up my personal plans of working, owning a headpiece boutique, drawing, painting, making jewelry...given all that up to raise my children. I don't mind it at all. I chose to do this, but I also gave up part of me...then when Nick died...I lost more of me...then as Kenny is having more and more health issues, even more of me is gone. I don't think I have anymore of ME left. I am happy...I truly am. I have a great husband, family, and friends. I also feel very blessed and honored that God thinks I can handle all this, but I just want a normal life for myself, my husband and my kids. The kind of life that we don't all have to be stressed out ALL THE TIME. The hospital stays, the trying to find someone to help out while Tony has to work and I have to watch the other kids when Kenny is in the hospital or has Dr. appointments. The list of medications that have to be given at specific times, the worrying what will happen next to Kenny, if he'll eat or not, if he'll have another seizure, if the next cold lands him in the hospital with lung issues, will he ever be "right"? Will the other kids resent their childhood being cheated from of all of this? It's so much!

So Kenny is on 3 new meds, and has a new diagnosis, Gastroparesis (slow emptying stomach) and GERD. These are on top of...Failure to thrive, Epilepsy, moderate to severe hearing loss, chronic lung disease, developmental delays, Strabismus, muscle issues, feeding issues and barely any speech. There is still the Autism and chromosome abnormality diagnosis that we are going to be looking into as well. He is still not eating solids but that is going to take time...a long time. He is eating 2 1/2 jars of stage 3 baby foods a day...wont eat any more than that...and is drinking his bottles like a champ. And with everything he eats and drinks, Duocal! They have him on Reglan, Prevacid and Periactin on top of Trileptal, Albuterol, Pulmicort, Singular, Duocal, and if needed...Diastat.

With all this on the table....I am very grateful to MetroHealth for taking great care of my son. The nurses were amazing! They understood that we couldn't be there all the time with Kenny, so they took him in under their wings.

Happy Good Friday everyone. May this Easter be full of blessing and renewed faith!

Still there!

Another day in the hospital...yesterday was a very long one...Kenny had his barium swallow study done...and from what they saw, no obstructions! YAY! Now to figure out what is going on with him and why he isn't eating...most likely psychological...which is very typical for micro preemies...from what I am told. It is very frustrating but at least we are starting to get a plan of attack in motion! He hates staying in his room...so he is either in a wagon being pushed around, sitting at the nurses station with the nurses, or in the play room...will NOT go into his crib! That's all I pretty much all I've got for now.
We are just exhausted in every sense of the word. Everything is out of whack around the Tomecko house. Tony has been trying to get his jobs done, I've been trying to keep up with the house and kids...but because Kenny has been at the hospital for a week now....going to spend time with him, making sure the other kids are alright...homework done, baths given, etc... there is no quality time for any of us. The Tomecko house has become a very stressed out, not enough hours in the day, trying to make time for everybody and everything...place! The laundry has piled up, everything is half done around here. We have to be here or there, do this or that...then worry about Kenny being by himself at the hospital when Tony or I leave...worry about the other kids and how they are coping with the stress...my mind is in a million places along with my heart!
I cant believe that Easter is this Sunday! Please do something nice for someone...a kind word, a kind gesture...show someone you care...it makes a world of difference!
Here are some pics from yesterday...

Kenny is still in the hospital....

He has been there since Tuesday. He will be there at least til Monday because they are going to do a few more tests on him as to why he's not eating. It is either psychological or there is something that is not allowing him to eat solids....the tests will tell us one way or the other. He is having some more testing done Monday morning, so hopefully after that he will be home.

I am so tired. I am completely drained of everything that is me. Its just one thing after another with our Kenny. He is such a strong little boy, I really wish I was more like him...I am putting up a pretty good fight, but it has been a very, very hard and trying 3 years. I find myself questioning why...almost daily. We have been blessed with 8 beautiful children...when the doctors were even amazed that I would be able to carry 1, especially with a bicornuate uterus....and twins...wow! But the heartache, the stress, the guilt, the hospital stays, the meds, the frustration and the unknown...it's all very overwhelming. I am trying to live day to day...but sometimes my mind goes into overdrive and well...it sucks...that pretty much sums it up.

So this is going to be a short post.

Went to see Kenny this afternoon-evening...he was sleeping in a wagon behind the nurses station...they love him there!!! He seems to have all the nurses wrapped around his little finger!!! LOL! We walked around the unit...and around, and around....the kid was showing me everything! LOL! I miss him so much...it took everything to not take him home with me!

Tomorrow is another day...another day of tests and crying.... from Kenny AND me.

...another hosptal stay

I had this whole other post in draft mode yesterday, then we ended up taking Kenny to the hospital because his doctor wanted a weight check on him...it changed from this point on.

There is nothing more unsettling than waking up (after days weeks months of literally, no sleep) to the sound of Kenny throwing up...in our bed. What's worse, when it smells up the whole room...then he proceeds to throw up all over all the pillows, blankets, himself, the floor...yep...it was not a fun night at the Tomecko house two days ago. There is no fever, no runny nose...nothing. Just the throwing up at night.

Two days ago, Kenny ate 1 1/2 jars of stage 3 baby food for dinner. I was so excited! He was eating really well for me...for once...then...that is what he ended up throwing up! I find myself trying to force feed him because of this fear that he is going to die or get really really sick...and what does he do? He puked his guts up...I'm feeling real accomplished as a mom over here...let me tell you!

You know...I thought I knew everything there was to know about kids....I am clueless with Kenny. When I think I finally have things under control...BAM...something else happens. Its all the time! Its hard...hard work, Hard emotionally, physically and mentally draining!

We took him to in for his appt...weighed him...now, mind you...he has had a very poor appetite for me...I've been putting Duocal in everything he is eating...
weighed him...and he lost 2 oz from last week! We talked with the doctor she decided that he needs to be in the hospital. They didn't want him to get dehydrated or have his heart weaken...which would happen if he continued to not eat or drink. They are going to be running a bunch of tests on him...including a barium swallow study.

Its pretty funny how the nurses on 4c know little Kenny already...what a little lady's man! When I called over there last night, he was sitting at the nurses station with them!

I feel so torn as a mommy. I need to be with Kenny at the hospital...I hate leaving him to come home...but I have to. I have 6 other kids that need me too. Tony needs to work to pay the bills, and I cant be two places at once. My heart is broken...just adds to the raw emotions that have plagued me for a few years now. I talked to a good friend of mine who told me to take 5 minutes and regroup...this is what is going to make me stronger...I am going to fight for my little guy and give him the best possible chance he has. He is a fighter my hero and I wont give up (even though I could climb into bed and stay there for weeks...lol). My friend is right. I cant let this get me down. I cant let these monthly hospital stays get to me. I am a strong (50% Italian/50% polish) person. Kenny is a miracle! Thank you for having faith in me and giving me the pep talk.

And finally...we had Morgan's birthday party on Sunday. Here are some picture:
Signs by Tony...

The Birthday girl (a month late!)...Singing Happy Birthday....The best part of the cake....licking the frosting off the candles!!!!Entertainment from her brother Tony and cousin Dominic...Mommy (me) and all my daughters...Daddy and the birthday girl...

Please keep Kenny in your prayer. Thank you.

still 25 lbs.....

So yesterday was another day at the hospital. We went for Kenny's comprehensive care appt. at the hospital...and oh was it a day! They didn't like the fact that he only gained 7 oz. in two weeks. I've been giving him 2 teaspoons of Duocal in EVERYTHING! He's up all night drinking pediasure with it in it as well! He is just not gaining enough weight for his height. They are now worried that is or will start burning muscle...which includes his heart. So there was tons of blood was taken from my little guy and we will see from that what we will be doing. She is also concerned with the fact that he is sick...pretty much...every week so she wants the immunologist to take a look at him also. I never in a million years thought that this would be so hard. I really didn't. You know...I'm supposed to be making my son better...and no matter what I do, I cant. He wont eat solids for us...he cant/wont drink more than 4-6 oz of pediasure at a time. To get him to eat his stage 3 baby foods...well...its a chore in itself. He will eat almost 1 jar per meal...if I am lucky, like I was the other day, he had 1 1/2 jars (woot woot). I am doing everything to try to help and it seems like I am not doing my job as a mommy! On top of unable to carry my twins to a safe point, losing Nick and not being able to do anything about it...this sucks. Its really testing me as a mommy...a person.

I asked the doctor if he could be getting sick all the time from the mold/rotted wood in the rafters of the basement and from the asbestos around the house...she kind of looked like a deer in headlights when I asked her that...and said...ummmm....yeah. OK...great! Now another thing to have to worry about. I am telling you...this is NOT the life I wanted or dreamed of. My kids and husband....Awesome! Yes, they are what I dreamed of. But everything else...this dark cloud that had been hanging over us...it needs to go away, because I am trying my hardest to look on the bright side of everything...but its getting harder and harder. The constant worry of a special needs child...oh..God...its hard. Now I know I could have it much worse...I know that. Kenny could be blind, in a wheel chair, on a vent still...or even dead! He is here...he is a miracle! He brightens up any room he walks into. His smile is catchy. He doesn't know that anything is wrong...I guess I should learn from my son...I have to learn from him.

On another note, another police officer died in the line of duty....that makes 2 in 2 days...my heart and prayers go out to everyone that knew him...knew both of these officers....so sad.

Ok...and finally...the lunch bags for the day...

Another fallen officer....

http://www.newsnet5.com/dpp/news/local_news/coroner%27s-office-confirms-officer%27s-death

May God bless his family, friends, and coworkers. He was a police officer in my hometown of Cleveland Heights...he was the 2nd officer that died in the line of duty in the last 3 years.

Tony made a memorial sign for him...just like he has done in the past for the other officers that have died protecting us.

3/15/2010

Happy Birthday to my daddy! Thank you for giving me life and for being such a wonderful dad and role model! I love you with all my heart and soul! Happy Monday everyone! Its been a looooong week/weekend for us here at the Tomecko house. Tony has been swamped with jobs and if that isn't bad enough, Kenny AND Gina get sick. The breathing treatments around the clock, coughing, throwing up (mostly in our bed...from Kenny), runny noses that never end, mixed with fevers and we are thinking, another ear infection...courtesy of Gina. Which brings me to the point where I am at now...EXTREMELY SLEEP DEPRIVED! LOL...yes...that would be me (raising my hand). So far, so good on the "no hospital stay" for Kenny...I am hoping that we are past the point of anything like that for this round of sickness. Again, Tony and I had to double duty everything...he had the older kids at the fish fry Friday night, took Tony to go to his camp out with the boy scouts Saturday morning and Sunday, he took them to Church and then a pancake breakfast...all the while...me taking care of two sickies...BLAH!

On another note...I promised my Facebook friends that I'd post this here on my blog... My hubby does the cutest things for the kids...he is an awesome dad...well...just great guy over all...so this is what he does for the kids...every morning. He makes them lunches...he WANTS to! I actually got yelled at for making lunches one night! It's HIS thing...so I am just letting him do what he wants to do....

Every day it's something different!!!!

We also got Kenny's hair cut. I really liked the skater dude look, but it was time...and it will grow out again ;) !

We have a word!!!!!

I just have to share this...I am so excited! The hearing aids are working for my little miracle baby! He was sitting in the living room with the other kids yesterday, and Taylor comes running to get me (I was in the basement throwing a load of laundry in)...She was saying that she thought it was Gina saying MAMA over and over again...but she looked and it was Kenny!!!! He has learned a new sound! WOOO HOOOO! AND ITS MAMA!!! Oh yes...of course I started to cry! Now...honestly...I don't know if he knows that the sound he is making means ME...MAMA...but, he is still forming the sound and SAYING IT! Something more than UUUUGGG or AAAAAAH! I will try to get it on video to show you all!
I'm telling you...things are starting to pick up around here...ok, Kenny is getting sick again...coughing like mad, horribly runny nose...but...I've been sitting on the ground all day...trying to keep Kenny from banging his head and throwing his screaming fits...its working...sort of...I've got my hands full with him. Buuuut he is here, and I am so proud of him and what he does!
My husband has also gotten much busier in this last week...its a good thing! I am looking at my calendar and I barely have any appts for Kenny...why you ask? Well...lets see...he's has been sick pretty much from November to now...the speech therapy has halted his appts because of missed appts...which...I've called EVERY TIME...but I understand where they're coming from...Still..it bugs me. We have had excuses every time...hospital stays, horrible viruses...what was I to do...take him while he was very sick? PT/OT...same thing.
You know...I am in a double da## situation here...He NEEDS the therapies but how can he get them if he is sick all the time? I hate this house...I swear...this house is just making him sicker and sicker! We all use Germ-X all the time...it just does no good! Anyhow, back to "its a good thing that my hubby is working so much"...I at least, don't have to go to the hospital or dr. appts (knock on wood)...and he doesn't have to help...he can just put all his heart and soul into his signs and banners! And on that note...yep...its that time of year again where the snow is melting and the old garage his wonderful shop is flooding again. (come on EMHE...where are you when we need you)

So there you have it...things are looking up (sort of) for us...I say this lightly because I don't want to ruin it for us...I don't want to get excited or happy because whenever I am truly happy or excited about something...it comes crashing down around me...seriously... every single time in my life pretty much...so I have learned to only get a little happy and a little excited...but nothing more.

I would like to add that if anyone would like to walk or donate to the March Of Dimes...we will be walking at the end of April...for ALL of our kids and in memory of Nicky! We would love for you to be part of our TEAM TOMECKO and raise money so that one day every baby will be born healthy!

Ahhhh...the adventures of a big family!

Tony and I decided that we were going to go grocery shopping last night (Sunday..at around 6-ish)....with all the kids. What an adventure in itself! Let me tell you...I don't know how those Duggars do it...I really don't! Ok...picture this...first off...Tony and Taylor...fighting in the car Tomecko Bus. A can of Pepsi (open) gets poured out on Tony's leg...he smacks her across her head...all heck is breaking out in the driveway(of someone else's house)...all the while...Tony and I are saying our goodbyes inside at a baby shower for our neighbor! We go out to find them fighting like crazy lunatics and tell them that that is enough (yeah...right). Now...mind you...at the shower, everyone was complimenting me on how well behaved my kids were and how beautiful my family was...Baaahaaahaaa! So...what happened?!!! AGH!!! At least they waited till they were OUTSIDE of the house!
Then we told them that we were going grocery shopping..oh joy!
As we pulled into our parking spot...the stares started. A car went past us (window open) with 4 people in it...the person in the back was counting all of us...very typical...so, my husband saved her the trouble and yelled out to her...SEVEN...SEVEN KIDS AND TWO ADULTS! Oh my God...did he just say that to her? Why yes...yes he did! So as we go in...we get the "awwwe, sweetie...you are so blessed with your large family"...that would be from the old people! And from the younger ones...LOL...there are eye rolls, mumbling under their breath, and comments like, "how do you do it" or "you're nuts". It's like this everywhere we go! LOL!!!
Soooo....anyhow...we're shopping....little Tony keeps hounding us about going to Game Stop...Sydnie was crabbing out about the shoes that she wanted at Walmart then she had to go to the bathroom....Kayleigh was laying in the back of the shopping cart with me throwing the food on top of her (not really..but she wouldn't get up). Then we have Kenny throwing his bottle at people...he wanted it (to drink)...took a few sips...and flung it at anyone in a 3 ft. radius! Thank goodness that Tony had him in his cart. I had Gina in mine (with Kay in the back). I don't know who had the worse cart...Tony or I? I soon found out that I had the cart from HE##!!! Gina decided to take the sucker that Kayleigh was sucking on...Kayleigh decided that she wanted it back...which caused 2 little (and very sticky) girls to start crying and screaming...in the middle of the frozen food section! There you get me pushing a full shopping cart, Kayleigh climbing out of the back of the cart to escape her baby sister who was pulling her hair with very sticky hands...Gina screaming a blood curdling scream that is worse than any horror movie....me covering her sticky, filthy mouth with my hand, trying to muffle this horror that was...my daughter! I was getting the looks...oh yeah. Moments like this I wonder what was I thinking having more than...ONE! Tony was off getting the diapers and I was stuck here...here in...well...you know where! In between the muffled sound of screams which I know Tony...and everyone else in the entire store heard, I was happy to hear I found out that Tony was having his own "moment". Strolling through the isles to get to the loud AHHHHH's and UUUUUUUH's...I see Tony with Kenny....DARN...he was just happy and making loud happy sounds...Oh well...So, I indeed had the bad cart!


We decided that we had enough torture for the evening and got into the checkout line. Tony with one cart completely filled with Kenny in the front...I behind him with another filled cart and a screaming Gina...LOVELY...then we have the cashier...a 20-something yr. old that thought he was "it" (tight grey t-shirt...name tag strategically placed NOT where it is supposed to be, but on his collar...I guess he thought he was too good for that tag!). Hitting on the single mom two people ahead of us...they were totally carrying on a conversation that was meant to be at a dance club or something...not in a checkout line of a grocery store...I just laughed because it was so comical...there once was a time where I'd be thinking...that's cool...no problem...but with 7 kids all acting up, two shopping carts full and I was at my limit, I really felt like I was about to just tell them...get a freakin room or exchange numbers already! LOL!

They said their goodbyes and it was our turn, finally! I swear, the poor cashier thought he was a bartender or something....not a cashier...talk, talk, talk, talk, talk...and not to us, but to the cashier next to him! We couldn't get out of there soon enough! Oh...did I mention, he screwed up something on the register, so Tony had to go to customer service to redo the whole thing...It wouldn't take the debit card because he hit the wrong button! I think after last night he may have to rethink what he wanted to do with his life...because a cashier...he was not! LOL!

We finally got home, got the groceries all put away and the kids fed at 8:30 at night...yeah...kinda a late dinner of mac & cheese! We got the kids all put to bed, gave Kenny all his meds...Tony went to work and I went to sleep.

I just had to write about this because this is usually how it is...the looks, the comments...but you know what? We wouldn't want it any other way...its crazy that we have so many kids, but its also very fun and exciting. Seeing these kids that we created, grow up with their own personalities, likes and dislikes...it makes the bad days...the days I look back on...seem well worth it.

Friday...what a day

Gina and Kenny giving each other a kiss

What a Friday it was! Days like yesterday...I am so glad that Tony works from home. Here is a breakdown of what I had to do...lets see...it starts off like every other morning...usually up from about 4 in the morning...Kenny coughing and Gina snoring doesn't help...lol. Get a few quiet moments to myself to get on the computer...God I love technology! Then I wake the kids up and get them ready for school (chore in itself). Breakfast made...check, book bags and lunches packed...check. Oh...wait..."where's my other shoe?"...WHAT? Its 5 after 8...the car is running and we have to leave! Searching...searching...FOUND IT! OK...back on track...pile 4 kids in the car bus, Tony (hubby) still sleeping in our room with Kenny and Gina...oh and also Kayleigh (she decided to crawl into our bed sometime in the middle of the night)...and we are off!

After dropping them off, I came home...woke up Tony and the little ones to take Kenny to developmental school. After that, we went to meet with the public school system to get Kenny enrolled in their preschool program for Kenny. Since he will be turning 3 in May, the Help Me Grow program will end and the city will take over with his special needs...ALL NEW EXPERIENCE here for us. We will be developing an IEP for him and work with his strengths and weaknesses. Again...I feel very lost. So...next month, he will be seen by a bunch of people and they will evaluate what he needs are. Their job is to get him prepared for kindergarten. He will be going for 4 days a week, 2.5 hours a day...and I pray that when he does start...he doesn't get sick. His immune system is so bad, I am very worried about this.

The kids only had half a day because of teacher-parent conferences so off to picking them up. We went grocery shopping for us and for my in-laws. My MIL needs surgery on her rotator cuff...she tore it when she fell on ice...so we decided that they have helped us in the past, so lets surprise them and get the tons of groceries. :) They are good people with big hearts and to help them out...made us feel awesome!

We then were off to the confrences...eh...ok...so a couple of them need to be more responsible and turn their work in on time...for the most part...they were great! To me, its expected. Tony and I have spent so much time with Kenny...being sick, in and out of the hospital, his "fits" and giving him his meds, really has taken a toll on everyone in this house...both physically and emotionally.

After the conferences, Tony dropped the Kenny, Gina and myself off at home and went to the fish fry at the church...Which, BTW, was a great turn out! At home, I had to try to keep Kenny from banging his head and screaming all evening long...play, eat, meds and then 8:00 bedtime...what a difference from years ago when a Friday night would end at 3 in the morning!


I did take a very cute video of Kenny doing some of his signs that he knows how to do...and of course...Gina...the big shot that she is, was doing them right with Kenny and talking up a storm! LOL!

Don't mind his shirt...he was drooling...a lot!

We had a rough night last night...Kenny was up all night crying and drinking ohh...about 20 oz. of pediasure...yeah...I was up all night! The heck with newborns...just have a Kenny! LOL! He was coughing as well..but no throw up...thank God!

This morning...he woke up banging his head and crying...we finally got him settled down...now off to his breathing treatment and meds!
Have a great day everyone...enjoy it to the fullest...make new friends, connect with old ones...MAKE EVERY MOMENT COUNT!

3/4/10

We went to Kenny's Comprehensive Care yesterday. Everything is looking pretty good. He hasn't gained any weight since last month...so we are now on even more duo-cal in ALL bottles AND everything he eats and we have to bring him back in two weeks to get weighed. Hopefully he will have gained some weight. See...the thing is...there is only so much he WANTS to eat and WILL eat...If I force feed him, he will throw up...yet they want him to drink 4oz of Pediasure every 2 hours AND eat at least 1-2 jars of baby food per feeding...with snacking inbetween. I can tell you right now...not gonna happen...*sigh*.

His lungs sound great but we have to keep up on the Pulmicort 2x a day along with his Pepcid and Singular at night, and his Trileptal 2x a day...my poor kid...I know it could be worse...but man...this is tough.
They also put him on an antibiotic for his coughing at night...we are thinking that it is from post nasal drip from maybe a sinus infection...so we will see...hopefully this will help the coughing and puking.


We mentioned the headbanging as well...the doc seems to think that it could possibly be a behavior problem...in which she is placing a call to a specialist for us. We are not ruling anything out. She has seen a lot of micro preemies with behavior problems because of unable to communicate what they want/need...she sees a lot of this in kids with hearing loss, blindness and unable to speak...yeah...its Kenny. So again...my heart is broken. I feel like a failure as a mom. I want to help him but I don't know what to do. I cant hold him all day long. I cant do things for him...he has to learn to do things...to be a kid...I want him to be independent.


Today is another busy day...we go back to Metro for Kenny's Pulmonologist appt. I am sure that they will say he is fine...his pulse ox was 97 today...with no congestion/wheezing...YAY its about time!


On the other hand...Gina will be going back to the doc today as well...her lungs sound gunky with snots and VERY crabby...I'm thinking...another ear infection...which brings the total to...well...WAY TOO MANY! LOL! I think it will be time for tubes in the ears...for her sake and ours! The poor thing is up all night long...crying and just fussy...not good when she is 2 feet from my bed. lol



Oh...and to make me smile...my hubby surprised me with a cute sign that he put on the deck. See...Leo (our squirrel that I raised) left and never came back...and that's OK...I raised him and let him go to do what he was supposed to do...be a squirrel. Since the release, the kids love all the squirrels that come around. Whenever I go to the store, I have to buy squirrel food...aaaaaand I put it right on the deck by the patio door...aaaaaand these squirrels come right up to the door to eat. I have even hand fed one. So...my husband thinks I'm a nut (lmbo) and put this sign up. Gotta love a sign maker for a hubby!

One thing is for sure...we don't have much, but, what we do have...we are rich in...love,laughs, family, friends and faith!

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 sick...it 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.

"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.

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...

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 house...it 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.

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 I...it's breathing treatments and calming coughing crying kids...UGH! Now...to 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)...in 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 paid...in turn, we don't pay bills. So he HAS to work and I HAVE to be home...it 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 bed...in-between 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.