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.

Full of hope

So for the past couple of days, things around the Tomecko house has been...eh...how should I say it...interesting. It seems like out of the blue, Kenny is starting to get things....I mean...do things! The other day we had buttered noodles...he wanted some so I put some on his tray. He started eating them, and eating them, and eating them....I looked on his seat and the floor to pick up the pieces...and there were barely any there! He was actually eating them!!! WOO HOO!!! So then last night I made hot dogs, pork & beans, and mac & cheese....put some on his tray....GONE!!! woop woop!!! He is actually chewing and swallowing the food! You just don't know how happy we are here! So on top of the eating thing...he is walking about 95% of the time too!!! For a little boy that we thought would never walk...to this...God is so good! He is very shaky and falls a lot, but he's got it...and he is so happy...WE are so happy!

He is also interacting more with the kids...yesterday I was in the kitchen making dinner...I see Gina running into the kitchen laughing and looking over her shoulder...Kenny is crawling...but chasing her around...both laughing and following each other! Yes, I had a tear in my eye!!!

I strongly believe that Gina is teaching Kenny so much! She is talking, walking, eating, and playing with and around him...so why not?!

...today is gonna be a good day!

March for Babies...Please help Team Tomecko!!!

You all know our story...We have had all our children born prematurely, but Kenny and Nick were little miracles! I am so proud of my twins, first, Kenny for fighting hard to survive and thrive! He has come a very long way since those long, terrifying days in the NICU. Yes, he has developmental delays, hearing loss, chronic lung problems, epilepsy and more, but if it wasn't for the March of Dimes and their research on using Surfactants, Kenny would never of even had a chance outside of me. he is growing up to be a very energetic, special little guy that God has big plans for.
And Second, My son, Nick, who put up a good fight and lived for 2 and a half days. In those two days, Nick made a very big impact on our family's life and also the doctor's and nurses lives in the NICU. He will always be a part of our family and we will walk with pride in honor of Nick, Kenny and the rest of our kids!

It has been a very long and tough journey...the life with a micro preemie and the memory of Nick...and from what I have been told, its gonna be for a long time. My thoughts and prayers go out to those experiencing the NICU life and there after...Please help us meet our goal! Thank you so very, very much!
...And remember, if you want to walk with Team Tomecko, we would love to have you!
My personal web page address for donations is...

http://www.marchforbabies.org/mtomecko

I am very excited to be a part of March for Babies, please support my participation by making a donation. Even if it's just a dollar!!!

Why March for Babies? Because the March of Dimes champions the needs of moms and babies in our community and across the nation. The money we raise for March for Babies will help:
- support all-important research offering preventions and solutions for babies born too soon or with birth defects
- educate women on things they can do to increase their chances of having a healthy baby
- provide comfort and information to families with a newborn in intensive care
- push for newborn screening and health insurance for all pregnant women and children
Won't you please help me in this worthy cause? Contributing to my walk online is fast, easy and secure. You can donate directly from my personal webpage with a credit card or PayPal. If you prefer, I can also accept cash or check. Just click the appropriate box on my webpage.
The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

Your gift will support March of Dimes research and programs that help moms have full-term pregnancies and babies begin healthy lives. And it will be used to bring comfort and information to families with a baby in newborn intensive care.

Post New Year and beyond!

I am finally getting a chance to get on here and update this blog of mine. Whew its been a crazy couple of weeks. My twin sister and her family came in for New Years. We, of course, had to have a big ol' fashion family New Year's Eve party with tons of party trays filled with lunch meats, cheeses, bread, olives pickles, etc... we even made the famous "papa punch" as my kids call it...Tradition brought on by my dad when we were little. Hawaiian punch, ginger ale, fruit cocktail and vanilla ice cream! Yummmy! There were no kids sleeping when 12 midnight came! I couldn't get over it...Gina and Kenny both stayed awake! The kids played and played...the cousins just LOVE each other! I miss having my sisters live around here. Family is so important. The day after, we went to my nieces house and celebrated my oldest sisters birthday. Another awesome time! Did I mention...I just love family get togethers! I love spending time with all my sisters and their kids. It just feels so right! I love seeing the cousins interact and be best buds. I hope and pray they will always be close...all of them!The whole gang, right before midnight...poppers and all!Cafe' Tomecko...lolI love having almost all my sisters together...it was wonderful!!!!

The last couple of days have been a real tester to me...the house is just not ready to sell...we have a lot of fixing up to do, but not a lot of money to do it...so we think we are going to have to pull the house from the market until we can fix it up and get what we want for it. Not to mention, there really isn't anything out there that is big enough and yet cheap enough for us...believe me...I've been looking. It's a long road, but hey, if we lived here this long, we can live here a little longer until we know that it's the right time. It's just hard having 2 kids in our room with us, everyone on top of each other with no personal space...I feel bad for the kids, I really do. But I also know that this year HAS to be a good year for Tony and I...it just has to be!

On my moms board that I am on and have been for years, there are not one, but 2 girls pregnant with twins. I am SO happy for them...I really, really am. I mean, I know the excitement, the joy, the overwhelming...just wanting to scream...I just won the pregnancy jackpot feeling of finding out there are two babies in there....but I am so sad...I just wish my two babies were here...were healthy. I so badly was looking forward to being a mommy of twins...and instead, I sit and try to figure out a way to have to tell strangers that ask, "any twins?". What do I say? Ummmm...yes, but he passed away. It hurts every time I have to say that. And if I don't say anything, I feel like I am not including a very important person that has touched my life...Nick. So...its been rough.

Not to mention...the two littlest ones...who we call Kenny and Gina....yikes! They act like twins! They are both getting into EVERYTHING! On a side note...Kenny is now walking 80% of the time! It is awesome! He really is trying his hardest and he is the most determined person I know! Ok...back to the "getting into everything"....so the other day started off with me sick...oh yeah...sinus infection along with ear infection...unable to get to the doctor because of one thing or another. I decided that I was going to have a bowl of cereal. I finish it, and put it on the counter...ding ding ding...mistake #1....I always tell the kids to put the dishes/bowls/cups...whatever they use...put it in the SINK...so...what does my wonderful Kenny do? Yup...he grabbed the bowl, which had some milk and remnants of rice krispies in it and proceeded to dump it all over the floor! Ok...no biggie. Cleaned it up, no problem. Throughout the day. I couldn't sit down for one minute just to have a little self pity for how sick I was...instead the babies continued to get into climbing on the kitchen counter (Gina)...just because...get into the spice drawer...Kenny is famous for reaching into the spice drawer and grabbing a container to open (his favorite thing in the world is to twist off caps...caps of any kind...even child proof ones!). I was just sitting in the living room on the couch, I hear the drawer slam shut. I thought to myself, here we go again. Jumped up from the couch to see Cilantro and Thyme all over my kitchen floor. Kenny holding a container and Gina trying to sweep up the mess with a broom! I was laughing so hard because...Gina...with broom...she is only 1 1/2! I wish I would have gotten a picture but...Tony had to take the camera with him for a job.

So as the day progressed...Kenny proceeded to get into the mini marshmallows and Gina...oh Gina wanted to see how the keys on Daddy's laptop stayed on...popping several off and onto the floor! Here's me trying to figure out where on the keyboard they go...fun I tell ya! Ha ha! In the meanwhile...trying to help 4 kids with homework...while breaking up the small, petty fighting between them. Oh wait...did I mention that I picked that day to sort 3 baskets of socks....in my living room! Yeah...so that made for a very interesting day.

We had Kenny at his Neurologist yesterday. He hasn't had any more seizures since the one before Thanksgiving...thank God. We had him on Keppra but that made him very angry, crying all the time along with banging his head...just a complete mess. His doctor, about 3 weeks ago, prescribed Trileptal...so far its doing its job. He is, by far, less agitated. He still goes into his crying fits, but not as often. He no longer has the look of "PMS", as I like to call it. But he is going into more...eh...I want to call them full body muscle spasms, a lot more than normal. The doctor wants me to video tape an episode to show him. They could be just that...muscle tremors, or they could be partial seizures...we'll see soon enough.

Like I said before, he is walking 80% of the time now AND is doing many more signs! Its awesome...God IS good. The Neurologist sat down with Tony and I and told us that because Kenny was born at the very edge of viability, no one really knows what is going on in his brain. There were no brain bleeds...awesome...but there could be short circuits going on, which is causing the developmental problems and such. He pretty much told us that even doctors are still learning what is in store for such micro preemies. That as Kenny gets older, there will be more things that "pop up". Ok...that makes me feel 100% better...NOT!

So I guess we (Tony and I) are in for a ride of a lifetime with our Kenny.

I have to say, I am very blessed with such great kids...I have my Tony...Mr....good on any instrument...I mean...really talented...I just wish we had the money to get him into lessons, so he can fine tune his talent...especially drums and vocals...amazing! He is also really good with figuring out how electronics and computer things work....the only thing that has me worried is that he is very upset about how thin he is. He comes home every day and tells me that the kids at school are making him feel bad because of how skinny he is...I just don't know what to do for him. My heart breaks.

Taylor is all about jewelry design and fashion design...I LOVE IT! She takes after me in more ways than one! She is not outrageous with things, doesn't want to be bothered with stupid stuff...hates when people fight...especially her friends. She giggles about the smallest things. Out of all the kids, I see myself in her the most.

Morgan...oh Morgan...my lover of all things. She is the one that helps me handle Leo the squirrel. She goes outside, calls him down from the trees...and he listens! She helps me around the house, with the babies, all the while....singing her heart out...she is very passionate about life.

Sydnie, hmm...she is a very intelligent person in a little girls body! She has an artistic side, but doesn't flaunt it. She LOVES to take naps and be comfy...she too laughs about everything...especially when something happens to her...like tripping...she ALWAYS cracks up when she trips. I love her big eyes and her naturally highlighted hair.

And with Kayleigh, she is getting ready to go to kindergarten in the fall. She love to play on the computer or the ipod, loves to goof around. She is still a baby to us.She needs to be cuddled all the time, loves babies and dogs...but only small ones...and they cant go near her. She doesn't like crowds either...she freaks out!

And lastly...boy...I turned this post into a who's who in the Tomecko family...LOL...

Gina...my chubby little love. She love to kiss, hug and climb. She is Kenny's rock! She was brought here because of Kenny...I strongly feel that! She shows him how to do things...to be his "twin" that he lost. Without her...without any of my beautiful kids, this family would be incomplete. Yes, there is a person missing...we all feel that...Nick should be here in this list of who's who...but God had other plans for him.

Ah...well I am going to end this post now before I get all weepy.

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!

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.

http://www.fanpop.com/spots/christmas/articles/1306/title/another-big-big-list-101-christmas-videos-watch-enjoy

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.

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,
Michele


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!

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.