Tuesday, June 16, 2009

Today, the little things...tomorrow, the world!

So...with all the posts that have been sad and disappointing, the feeling of why is this happening to us. The being exhausted because of the raw reality of everything...I figured that tonight I am going to write a post with positives. Today was a good day, it really was! Yes, there was the typical Kenny banging his head on the ground, the "UUUHH" that he says...all the time...he reminds me of a caveman...kinda funny yet sad and irritating *yeah..I said irritating, because it is*. I would be so happy if one day he would just say a word...any word would do, to just say a word and mean it. But...that will come in due time...I know that.

Tonight was a big milestone for our little Kenny. Tonight, for the first time in his 25 months of being on this earth, Kenny swallowed a pea and a carrot (canned, because they are softer). Tony and I had tears in our eyes. We were all sitting around the table eating dinner...we had BBQ pork chops with mashed potatoes, corn and peas and carrots...so, I gave him some on his tray and he is putting them in his mouth, like he's been doing but he usually spits out or saves for 2 hours, and then the next thing I see, is the carrot slice and a pea...gone...not on the ground, not in his lap or chair....DOWN HIS THROAT!! There is a God...and he is good!

He didn't even throw up. We all then started to clap and make a big production out of it. I mean...for months I've been cleaning up throw up ever time he eats...tonight was different! I am so happy for him. You should have seen the look of accomplishment on his face...smiling from ear to ear and pointing at everyone...as we were clapping for him! I know we are a long way from normalcy, but it is a great start!

So, then...the next little excitement that I have to share that Kenny AGAIN amazed us with tonight...
he put the stars ON the toy...he has been taking them off, but tonight, he used his coordination to actually put something on...almost stacking them! I am telling you...the little things in life are the best, these are the things that matter in life...not cars, houses, money...just the little things!

My son, Tony came home from his Boy Scout meeting last night with pink and white carnations for me...Melted my heart! Still has an attitude, but he wouldn't be Tony if he didn't have one.
Taylor and Morgan both wanted their hair high lighted...so my sister did it for them...UGH...I am in trouble! They are little ladies in the making! Beautiful! And they LOVED being pampered!
And lets see...Sydnie and Kayleigh are loving the blow up pool we got for the deck...they are in it all the time! Kayleigh is excited because she found the first tomato on the many plants we have...very happy...see...the little things...

Gina has now been trying to stand without assistance...um...hello...werent you just born a few months ago...oh wait...it's been almost a year! Where has the time gone? Have I been that wrapped up in Dr. appt., therapy appts., school functions, bills, house cleaning, laundry, everyday life to just not see where these 11 months have gone? I must make note to self to really try to stop and take in everything that this life has to offer me. My kids are growing up before my eyes and I want them to know that I love and appreciate them for being them. I love their little quirky things that they do and say. Yes, I do wish that they wouldn't fight so much, and that they would help me clean the house, but they are kids, my kids and I love them no matter what...Our house is very loud...let me tell you...we have got to be the loudest family on the street...we have to close our windows sometimes when the kids fight...Its the Italian coming out in them...LOL!!!

Anyhow, today was a good day. A day that I needed to sit and see everything that I have in front of me...a great husband, wonderful(most of the time) kids who always keeps me busy, on my toes and my mind working....and a fantastic support system of friends and family.
*and still praying for Extreme Makeover Home Edition to come our way! LOL!!! *

Saturday, June 13, 2009

Your Gonna Miss This Moment....

Pam at http://pramom26.blogspot.com/
Has a great little Carnival going on...check it out! It's Your Gonna Miss This Moment and show a pictures of what you are going to miss with your kids growing up so quickly. It makes you stop and think that this life really does go by way too fast and that you should just stop and reflect of what is really and truly important...the little things in life. The little things that you take for granted...so...here are some of MY moments that I am going to miss (will be posting more when I can download them)...

Little Tony watching his daddy play baseball... Now He's playing!
My first born child's first day of school...Look at that innocent smile...
He is now starting 6th grade!
Having only 2 kids in school....
Tony in 1st grade, Taylor in kindergarten

Kayleigh's toothless smile...

Gina smaller than a watermelon...

Me at 21 weeks pregnant with Kenny and Nick...what an experience to carry twins!

The kids actually excited about gardening...Our beloved Pepper. He was part of our family for 14 years. We miss him very much. He used to love to lay on the table or back of the couch and look outside. Life was so simple with only 3 kids~ but wouldn't give up ANY of them for anything!

Wednesday, June 10, 2009


To my Aunt Bev.
My heart, prayers and thoughts go out to my cousins for losing their mom at such a young age. Also, to my Mom and uncle for losing their sister.
I remember going to her house for family parties and sitting under that great big weeping willow tree. She would play her piano for us kids too.
She will be deeply missed but I know that my Grandparents, my brother and my son welcomed her into Heaven and are having a beautiful reunion up there.
Don't take this life for granted, because it is only a blink of an eye.

Thank you all

I want to thank every one of you that took the time out to write and send in our family's nomination for EMHE. Now all we can do is wait and pray. Thank you for signing the petition as well. I sent that in to them too. Only time will tell.

Lets see...on to what has been happening here at the Tomecko house...

School has let out for Summer break for the kids. I surprised them on the last day with this...

They had no idea that their mom would actually write all over our van...ha....showed them! So now they are home for the summer. This is the time of year that I sit and tell them AND myself that we are going to do a page of schoolwork(review) a day...so far...I have moved their papers and books from one spot to another...without opening them or looking at them...oops. I need to get my butt in gear with this stuff! They do want to go to the library one of these days, so we will be taking a "field trip" down there soon.

It seems like Kenny is getting more and more of a hand full for us. He is CONSTANTLY banging his head. He's got black and blues and big knots all over his head. So in order for him NOT to hit his head, I have to hold him...all the time...not good! I don't know what to do. He is going to hurt himself one of these days. The doctors are looking at a couple of different things...I strongly feel that he is just getting frustrated and cant express himself. I thought it was because he has had ear infections in the past, but I took him to the doctor and they said his ears are clear. He wont wear his hearing aids anymore...I have been trying and trying...between the banging his head and the pulling the hearing aids out, I think I am going to just have to suck it up and hold him 24/7... but then, what about Gina, or cleaning the house, or making dinner or helping my other kids (who is probably feeling a little left out). I cant center all my attention on just Kenny... I physically cant. I am one person with 2 arms. UGH...I am so upset over this.

Not to mention, he's been waking up every night coughing and throwing up again....it started about 2 weeks ago...and now it is every night! So...I have to wash his bedding and ours, because we bring him into our bed. We give him his breathing treatments every night and I also give him his Singular...thinking that maybe its allergies that produce the mucus that runs down his throat and makes him cough and throw up... nothing is working...I am wondering if we have to put him back on oxygen at night. If we do... how will we keep it on him? He will be going to his Comp Care next week...I'll talk to them about it.

Someone finally called me back from one of the many waiting lists that he is on for PT/OT/Speech Therapy, He is going next week for the initial visit and from there we will be setting up a therapy program for him. It is about 30 minutes away, but who cares...at least he will be getting in somewhere!!!

Reality is hitting us in the face. I told the doctor that with everything that is going on with my little guy, I feel guilty for keeping him alive in the NICU. Did we do the right thing? Did God want us to keep him alive? I don't know. We are doing everything we can for him...but it just doesn't seem enough. So please keep us in your prayers...to give us the strength we need to help Kenny become the strong, confident, healthy and happy person he should be. Pray that we can do all of this and still have time for our other kids. I want them to be strong, caring, independent, healthy and happy too...how can we balance all of this? How do we make time for the other kids with Kenny being so needy? If any of you out there knows, please let me know. I am slowly feeling like I am failing ALL my kids because I am being pulled in every direction.

Ok...enough of the self pity party...

What do you get when you take a kid that is having breathing problems to a wedding? Throwing up because he is coughing so hard? Well...I'll tell ya.... Yep...you guessed it! Every 3 hours!
We had a blast otherwise

This past weekend, my niece, Shannon married her long time boyfriend, John. I wish them the best that their future has to offer! The wedding was beautiful. They had a few wrenches thrown into the day but they never let it ruin it for them. Yes, there was the typical issues...some not so bad and then there were the very bad...John's dad in the hospital recovering from a stroke and then Great Aunt Mary (Shannon's dad's aunt) passed away, unexpectedly at noon on their wedding day. I am praying that the family has peace trough all of this. She was a lovely woman who loved her family. All of these could not stop the party from happening...yes, we were sad, but Aunt Mary wouldn't of wanted to ruin their day and also, since John's dad was in the hospital...they had live web cast of the wedding ceremony for his dad to "be there" with them.Their lives together are just starting. There are going to be some good and bad things happening in their lives together....hopefully... mostly good. But those "bad" moments are what strengthens a marriage (or could break it). When Tony and I got married, I would never of thought that we would still be living in our first home...14 years later, have 7 living children, experienced 2 miscarriages and the death of our baby, Having a child with many medical issues, unable to have this or do that...oh the list goes on and on. But I am glad for the very happy moments...marrying my best friend, Tony starting a business that he loves, meeting many, many wonderful people in our married life time, Having and watching every one of our kids grow, and going through ALL of the bad together.I feel that we are being tested...I am not sure why, only God knows... I hope that we are passing the test.

Tuesday, June 2, 2009

Extreme Makeover Home Edition Update!!!!

Please, everyone....please help us!
We already sent our nomination in for Extreme Makeover Home Edition....
we now need EVERYONE's HELP!!!!
Go to the e-mail and NOMINATE US, PLEASE!!!
The deadline is JUNE 9

The more people that sent in our nomination via e-mail....the better chance we have!
This is the actual nomination...not the petition!!!!
Please send an e-mail with ages, and why to:

Also....pass this on to all of your friends!
Thank you so very, very much!!

Michele, Tony and kids
A dear friend pointed out that you all need the names and ages of all in the house...
Anthony (Tony) Sr. 43
Michele (me) 39 (shhhh.)
Tony Jr. 11
Taylor 9
Morgan 8
Sydnie 5
Kayleigh 3
Kenny 2 (surviving twin to Nick)
Gina 10 months
This is what we sent for the nomination...
I am hoping that someone could help us. My name is Michele. My husband Tony and I had a set of twins in May of 2007. They were born at 23 weeks gestation...that's 17 weeks early. The doctors told us that if they came just a day prior, they would not be able to try to resuscitate them...but to Gods grace, they both made it into this world...for two days we were the proud parents of twin boys...both weighing just 1 lb. 7 oz....2 days later, our world came crashing down all around us. We watch as the doctors and nurses in the NICU at MetroHealth tried to work a miracle and keep our precious son, Nick from dying. With all the praying, wishing and hoping, he passed away...on May 4, 2007. We will always have a hole in our hearts and feel an emptiness that no parent should ever feel. Our surviving twin, Kenny is doing as well as he can. He is such a little miracle! He has very bad lung disease caused by months of being on the ventilator, which require oxygen and meds several times a day, so every time he gets sick, he usually ends up in the hospital. He also has developmental delays, feeding issues and moderate bilateral hearing loss and now a diagnosis of autism and Cerebral Palsy. He doesnt walk, talk (words), eat solids, hear or communicate very well. He bangs his head on everything! It is beyond comprehension. A mom should be able to help their child, and I cant. We are a family with many children...7 (living) to be exact...We love it and wouldnt trade it for the world. Our family includes... Myself 39, Tony my husband 43, Tony Jr. 11, Taylor 9, Morgan 8, Sydnie 5, Kayleigh 3, Kenny 2 and Gina 10 months. It a chaotic house, but I love the challenge! LOLOn top of juggling all of Kenny's doctor appts., PT/OT and his daily life routine of meds, We don't really get to do much as a family because Kenny cant be around too many people because of RSV season. So that is why most of the time, I am stuck in the house with the little ones, while Tony takes the older kids to things. It is a life that we never dreamed of having...nor wish upon anyone. Tony has his own sign business that he works out of our detached garage...he has been in business for about 10 years now. He has done work for the malls, police departments in several cities (our house is the one on Snow with the signs for the fallen police officers and the one to thank a police officer), the Cystic Fibrosis Foundation, American Heart Assoc., local churches and schools and many, many local businesses. He puts his heart and soul into all his jobs and his clients. He is such a great guy. He is always thinking of others before himself. That is what made me fall in love with him! He has taken time to do things with the kids, go shopping, stay at the hospital when Kenny needs to be hospitalized, etc...on top of trying to make his sign business succeed. The economy and taking time for Kenny's appts, is taking a toll on his business. When I get a chance, I volunteer with the March Of Dimes at their events and help out at our school and church.So...now you kinda know the background...WE WANT TO NOMINATE OUR FAMILY for the show Extreme Makeover Home Edition. Our house is a little 1100 sq. ft. 3 bdrm home here in Parma, Ohio, that is in need of repairs and more space. It's just not very healthy for Kenny who needs space and special needs...not to mention how crammed we all are. He has a Gait Trainer that is helping him learn to use his leg muscles and between that and Gina's walker...it feels like bumper car central. His oxygen tanks are thrown in the front door area. There just isnt any space.We have used everything. The house is old and drafty, the walls are not insulated, the plumbing is cooroded, the wood on the outside of the house is rotted, the windows have mold and are broken, the floors inside are all broken, so we get splinters from the wood floors and cuts from the ceramic tiles that are shot. The lot floods in the spring and during rain storms, which mean his business (the garage) gets flooded all the time, on top of many other problems. The kids share bedrooms...2 bunk bed in one room a bed and a crib in another. In our room there is a crib and our bed. There is no where for our kids to have their own space or a place to play. Because we are on top of each other, they continually pass colds back and forth which could be life threatening for Kenny. We want the best for our kids, and because of the hospital bills and the constant care of our micro preemie, it is a tough thing to do.I sometimes wonder if the daily struggles are worth it, then I look at my son, who beat the odds, and think to myself that if he can do it, we can!
Please read our family's blog, the whole twin story with pictures...well, pretty much our life story is on there. What we go through day in and day out.
There is a petition online going to try to get our story on Extreme Makeover Home Edition (I know some say that it doesn't make a difference, but to see what others in the community and from all over have written, has to help in some way). It has over 800 signatures on it including the Mayor of Parma and many others.
We also have already filled out the application. We are hoping...well praying for a miracle!
Thank you very much for your help!
We just want to get the story out to let others in our community know that we are trying to get on EMHE and to let people know that micro preemies that are born at 23 weeks CAN and DO survive. the doctors say that it is not how much a micro preemie weighs, but their gestational age...that makes it so dangerous and poor outcomes. But there are a lot of special needs, devotion, time, clean and healthy conditions, and much more that is needed...and in these times, raising a family with 7 kids, keeping a small business going and making sure our sick baby, who was was only given a 17% chance of survival (if that) has the best chances of having a healthy normal life, is very hard to do..Finacially, emotionally and physically!
Please read the blog and help.
We are in real need!

Friday, May 29, 2009

Dear God...

God, please show me the way to turn. Show me what you want from me and tell me what I am to do. My Kenny is sick, he was born too early and had a rough start. The days are continuing without his twin. He is growing and thriving, but faces many many hurdles in life. He cant communicate like he should be. He cant walk yet, cant hear very well, doesn't really talk, cant eat any kind of solids (not even teenie tiny pieces). He could use his oxygen at night, but wont keep it on. Has ear infection after ear infection (why...he cant hear that well anyhow...why put him through that). He is constantly coughing...I know he wants to do things, I can see it in his eyes. I don't know what else I am to do. Did I do something wrong to have him? I want to think that he is a gift from God...but this gift is such hard hard work. I am emotionally, mentally and physically drained. Beyond what a mommy should be. Isn't loosing Nick, and having 2 miscarriages enough?Please show me the way. Please stop the anger I have, the sadness I feel and the anxiety I am experiencing.I love my kids and husband and want the best for ALL of them. I want to give them all the best life possible without losing myself. I feel I have done that...I feel like I have lost myself and in turn am not giving them my all.
God, you have blessed Tony and I with 8 beautiful children. The house may be small, the kids fight all the time...but I love them and just want them to be happy and healthy. I need that in order for myself to be happy. So, God...I am asking you...please help and show me the way.*on a side note*
There really is a Santa Claus...because...one of his reindeer was hanging out in my backyard....then flew away! ;)

Monday, May 25, 2009

Sleepless nights

Good day everyone. I am writing this on maaaybe 6 hours of sleep total...in a 3 days time span. Ah the joys of colds and ear infections!

Yes...that's right...Kenny is sick...AGAIN. The poor little guy. Tony and I have not slept in 3 days...doesn't make for a happy set of parents. We're hoping that this cold wont land him in the hospital...like usual. This has been our best friend these last couple of days...

I have one question though...if any one has a head banger...how do you break them of it?!!! I just don't know what else to do. Kenny is constantly banging his head on the ground, on doors...he even tries to head butt us! We know it is partially because he has yet another ear infection, but the other part is what the doctors are thinking, could be a sign of Autism. So, if anyone out there know what to do to stop him from hitting his forehead on EVERYTHING, please let me know. I hold him ALL THE TIME because of this and because of wearing his hearing aids...but this cant go on anymore. I have to take care of Gina, wash dishes, clean house, do laundry and make dinner...on top of watching/playing with Kayleigh during the day...I just physically cant hold him all day long. In his Gait Trainer, he throws his head way back and I am afraid that he will snap his neck or something. UGH...Calgon...take me away!

We have to have this cold out of our house by Saturday because my niece is getting married! OMGosh...I remember when she was a little girl with a huge head of hair. She had the wildest hair!!!! Yep, she is starting a new life for her and her soon to be hubby, John. I am so happy for them. I just want them to remember that their wedding day is just one day...the marriage is a lifetime...enjoy, work hard on the relationship...because being married is work...you have to give and take, work together, compromise and grow as a couple. Love and marriage are the best thing that you could have (next to kids) so enjoy and be happy with yourselves and you will be happy in your marriage. ;)

And finally....I got the garden planted...yes in deedie! Tony tilled the "old" spot where the garden used to be, per my request...I wanted to have it flattened and nice to plant grass seed there...well...he did such a great job on it...that...I just HAD to plant some of the garden THERE TOO!!! Yes, I am a little compulsive when it comes to gardens...so the back garden has watermelon, some tomatoes and pumpkins back there.

and the new garden has ... well... everything! Tomatoes, peppers, cabbage, beans, beats, cucumbers, zucchini, and yellow squash.
And finally.... Gina learned to stand up against things now!

Monday, May 18, 2009

What a week!

It's been a week since I've posted...pretty much drained. The running around is crazy. Of course we all had to have watched American Idol. Yep. I pretty much thought that Kris was going to win. The underdog pulls it off yet again! Honestly, either way would have been fine for me. I thought both of the guys were very talented. I would have liked to have seen Danny Gookey in the finale, but I really think all 3 of them will be very successful in their careers! I really liked this years finale...tons of stars and groups...it was wonderful to see all the old groups...Kiss...Queen...oh...and...hee hee...Steve Martin!

Enough of small talk....

This week, I have been noticing that Kenny's eyes are starting to cross...I called his ped up and they told me not to worry since I have an opthamology appt. in July...but I am. I really am worried. I really don't know what crossed eyes mean! Is it that his ROP came back? Does it come back? Will he need glasses? Surgery? I have no clue. I just may have to see if they could get him in sooner...I wouldn't want to walk around with my eyes crossing all the time. My poor baby.

The head banging is still going on... That's another thing bugging me.... we have no carpeting, just wood and tiles...can you say ouch! I have been trying to keep him busy so he wont think about hitting his head, but I cant sit on the floor with him all day long! Which brings me to his hearing aids...UGH....the kid rips them out as soon as I get them in! It is SO FRUSTRATING!!!! I sit here all day long...trying to feed him (solids)...which he throws up...so I am basically cleaning up throw up all day long, I hold him so he wont pull his hearing aids out (which he does anyhow) and now, the head hitting! He is FINALLY starting to move his feet while holding both hands!!!!And he loves getting around in his walker! So that is a big start!

Kenny and Gina are starting to interact, which is SO nice to see. I get a big kick out of it every time I see them sitting there on the floor together I think to myself, "wow...this is what it would have been like with Kenny and NICK." It's very bittersweet. Gina is a funny little girl (or should I say...chubby) lol.... she knows exactly what she wants. She is starting to learn things at a fast pace now..which I think is good for Kenny. Now if I can just get her to show Kenny how to stand, walk, talk and eat...I'll be all set!

Speaking of crawling...he has put holes in ALL of his pants...and now that it's getting warm, he is wearing shorts...well...my floors SUCK! I really don't want him crawling around and getting splinters from the wood or cuts from the broken tiles, so I have made my own knee pads for him! I cut old (clean) socks and use those around his knees (kinda like leg warmers)! He loves them! In this picture, you can see that his one eye is going in.Here is another picture of his eyes...I noticed in this picture, that only one eye has "red eye"...the other eye doesn't....anyone know what that means? I'm getting kinda scared here.
I have been meaning to take a picture of Kenny's hair after he gets out of the tub...so here it is!Look at these curls! I am planning my garden...yes...I am going to attempt it again! This time, I have moved it over to the side of our deck...even though...looking at it...it still looks like I am going to get no sun...DARN! Anyhow...the kids kept picking out different veggies so we ended up with 2 flats of vegetables...I just have to fill the boxes with dirt and plant. Yeah...I have the time! HA!

Here is the "garden"...
And here are the plants...there are also 2 flats of flowers that I bought from little Tony through the Boy Scouts...more stuff to plant~!
We were also at the walk for Cystic Fibrosis at the Cleveland Zoo last weekend. We saw all of our friends that have CF, know someone that has it, and our friends that work and volunteer for CFF. We had a great time... it even held off raining til we were leaving!

I spy...with my little eye....a heart!
of course I had to get a group shot! This would include me jumping up and down and screaming like a lunatic to try to get them all to look at me and smile! LOL!
Gina getting her morning breakfast in before the walk.

And that is about it for the week. It's been beautiful out so I've been trying to keep busy OUTSIDE of the house rather than inside.

Have a wonderful day!