In Need of Change

Happy November 1st everyone. Can you believe that it's November already? WOW!

My post today is about change. Our family is seriously in need of good change. We are just like everyone else in the world...we work our butts off and it gets us nowhere. So these last weeks I have opened my mind and not only do we need change, we will try for it. There has been a house that we found....its a foreclosed house that is 4 BIG bedrooms, 2 1/2 baths, on a corner lot in a nice neighborhood, about 25 min. away.... we ALL fell in love with it. It needs work, but so did our current house...and we made it home! It's so much bigger than this teenie tiny 11oo sq. ft. home we live in now (over 2500)! Paint, carpet and a little TLC...I think our family can make it home....

Eat in kitchen...everything need updating, but is very livable!!!

Nothing a little paint wont fix

I LOVE the family room!

It has a living room AND a family room!!!!

I love this entrance

We are already throwing out 15 years of accumulated stuff, giving to goodwill the decent stuff...our tree lawn is going to look ridiculous on garbage day. Its so nice to clean and declutter...I am feeling good about this! We just have to sell our house first before we can try for this one....Please say some prayers that things work out for us. If its not this house, it will be another...we just have to get our courage up and just move!!!! We are scared, but feel that this is the best for our family. With a lot of prayers and asking for Gods direction, things will work out!

So anyhow, back onto change....Kenny is wearing his hearing aids most of the time now! He still isn't walking on his own very much....a step or 3 here or there...but its a start. He is giving kisses now...totally melting my heart! I just love him so much.

I took him to his monthly visit to his doctor...he received the H1N1 vaccine...I am glad of that. It took a load off my mind. I was so worried that he would get such a bad case of the flu and die...its a feeling that I feel with all my kids....I think its my Post Traumatic Stress thing coming out. The other kids will be getting theirs on Dec. 1st.

The doctors are not happy with Kenny's weight gain. He is 22.6 lbs...he is on 32 ounces of Pediasure a day along with 10 teaspoons of duo-cal in everything...from his pureed food to his Pediasure...its a mess. His GI doc is sending him for a barium swallow in a few weeks...to see what and why he isn't chewing and swallowing pieces of food. I sure hope they find out what the heck is going on. He is also going to see an ophthalmologist for his eyes, since they are crossing all the time now.

I am just feeling so sad for my little guy. I just want him to be the best he can. I know he's happy but I also know that he gets so frustrated because he cant communicate. So can you all please keep Kenny in your prayers that he can overcome all his disabilities.

And one last thing. My friend Jen has a son who was born around the same time Kenny was supposed to be born, anyhow....he has been diagnosed with MITO. He is having a real hard time right now. He has been in and out of the hospital with major issues.Here is their blog: The Moody Tales and also his Caringbridge page. Could you all please keep Zach in your prayers along with his parents and older brother, They are such good people. Thank you so much.
Like I said....we are all in need of change and MANY PRAYERS for many different things.

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Wonderful and wacky Wednesday

OK...so since my home life is as crazy as it seems, I thought I show ya a few wacky things that have gone on....

First off...Taylor sitting by the "infamous" heater vent...yes...every morning (like clockwork) the kids all fight over this one lousy vent...all I hear is...."I called it"...then...."NOOOOO, I called it last night"...and the day begins! LOL! So, in this picture, Taylor won it...notice the smile? Next, we have this watermelon...I figured...Wacky Wednesday...watermelon, the size of a softball...ok...it fits. So....this watermelon is what we grew this summer in our backyard. It may not of looked like much, but it was the best tasting watermelon ever....Again...just add in the fighting over who was going to get the last piece. LOL!

OK...this one is a biggie. This is by far, the WACKIEST thing ever. Our beloved neighbor, Jerry passed away last week (RIP). It has been so hard on all of us...we've seen him everyday...he's been a part of our lives since we bought this house. He was more than just a neighbor...anyhow...the other day, Tony stepped out of his shop (aka...the garage) and saw this!

In the 15 years that we've lived here, this NEVER happened. We strongly feel that this was Jerry's way of telling us that everything is going to be alright. See, Jerry LOVED our yards...he spent most of his time working in his yard and ours...loved nature...so this is so appropre for him!

Moving on...we have a wacky and wonderful Gina! He has hit the "Rocker Chick" status by giving the "rock on" sign...all the time!

And last but not least....in our WACKY and Wonderful house...we have adopted a squirrel (see older posts). The kids love him and play with him like he was a freaking dog! LOL! So...ya cant get much more wacky than this!

Have a great day everyone. Today is speech therapy for Kenny...as long as he is feeling better. He had 1 day of no sickness then BAM! So he and Gina have been battling runny noses, coughs, diarrhea and fevers...

but why not...its just a Wonderful and Wacky Wednesday!

RIP to our neighbor...our friend.

This has been a very hard week for all of us, here at the Tomecko house. We lost a great neighbor...he was more than a neighbor, he was family! When Tony and I looked at our house before we bought it...Jerry was the very first person that we met. He was out in the back burning branches that fell. We knew at that moment that he would make a great neighbor...for 15 years, we saw him every day. We was there for us through every high and low of our married life. Holidays, birthdays, summers working in the yard, fall...raking leaves into big piles for the kids...taking the kids on tractor rides...the kids know him as Uncle Jer-bear...
He will be very missed. Its been such a sad week. I know he is not in pain anymore...he fought a very long battle and just got tired. I know that he has finally at peace with his parents and brother that has passed before him and that since he cant be here with us, is at least holding our son Nick waiting for the day that we will see them again. RIP Jerry...we love and miss you.

We also celebrated our oldest son's 12th Birthday! OMG...where has the time gone?! 12 years since my very first baby...who would have thought that 12 years later, I'd be a pro at motherhood....well not a pro, learning along the way...ok....I'll just say I am a "seasoned" mom!
We were gonna have a big birthday party for Sydnie, Kayleigh and Tony this past Sunday, but because of our neighbor's death and sickness in the house...we are holding off. Not sure when...I have the cake design picked out, so when we are ready for that big ol' party...it just needs to be ordered. So, Happy Birthday to my oldest son, Tony....I love you so much! Now...does anyone have that handbook on how to handle teens? lol

Fall...foliage and flu

Oh the days are getting shorter and the cooler! Happy Fall everyone! The season is truly showing its cold side these days! Yesterday we decided to take the kids to an apple picking farm. We ended up just looking around and buying a bag of apples because it was close to closing time (yes...we got lost...drove for hours...LOL). I couldn't see spending the money on 7 kids for just 20 minutes...but that is OK. The kids enjoyed themselves and we ended up going over to my sisters house where they all got hair cuts! Kenny is looking like a little boy again!

The family pet that is known as "Leo" is doing great...yes...we named him and YES he is a squirrel. We will be giving him to a rehabber at 10 weeks of age...but for now, I have been rehabbing him since he was a few days old. I never thought I'd be having a squirrel living inside my house...but I have gotten attached to him...feeding him every 3 hours or so and now, now he's getting fun. He love to climb and explore. Just look at how big he got...the first picture is from when he was just a week old...and this other picture is from Friday night!

Kenny finally started school up again. He goes twice a week and is finally starting to like it...I think. He cries when we leave, but seems to do well while we are away. Every time I take him to school, it hits me like a ton of bricks...my son is a special needs kid. Yes, he needs hearing aids. Yes, he is developmentally delayed. Yes, he doesn't talk...at all. Yes, he doesn't know how to walk at age 2.5 and no, he cant eat. BUT... YES, he is a miracle and he is so very happy and loving!

He leaves his hearing aids in all day...which is awesome! He now just pulls them out when he feels the bungee cord that holds it onto his clothes. He took a few steps the other night...like I posted earlier, but that was it. Nothing since. I am hoping now that he is in school, he will see other kids his age walking and want to walk...hoping is the key word. I don't know how good its gonna be this winter and cold season...it is already starting to affect him...when he is sick...or I am, it is something that we cant help. It really sucks. We go through more soap and Germ-X around here!

This is one of the main reasons why Tony and I need to move. Our house is just WAY too small. It's not healthy for the kids. They are piled on top of each other like sardines...they cant help but catch each others colds. I just sometimes wish that "the makeover" would have taken place. I really do. I am kinda bummed about that.

I want everyone to remember that October 15 is Pregnancy and Infant Loss Awareness day!

Because I had 2 miscarriages...one at 8 weeks and one at 13 weeks and also lost Nick, I take this day to heart. To remember, reflect and pray to my 3 angels whom I miss so terribly. And also to pray for all those parents that have lost babies like we have. Thanks to modern medicine, Kenny and Nick were able to survive birth at 23 weeks gestation.

When you are pregnant, you have hopes and dreams of the baby(ies) inside of you....when you start to bleed and something goes wrong...no matter at what week in the pregnancy you are at, it hurts bad...emotionally. Those hopes and dreams are shattered. No longer will you have the "due date" to look forward to. The belly rubs, the looking at cute baby clothes or picking out names. During a miscarriage...its an "I'm sorry, you lost the baby." in the doctors office or ultrasound room. So very heartbreaking. I have to believe that every one of those babies lost during a miscarriage has a soul...they were given to us and taken away for just that very short glimmer of time...for some reason. So, to all my cyber sisters that have lost a baby...be it a miscarriage, stillborn, neonatal, infant or toddler....This day is for us and for them. May God wrap his arms around us and comfort us in knowing that our babies are safe with Him and one day we will see them again (I hope and pray).

Steps....Baby Steps!

Last night, we were sitting watching TV...a very relaxing evening (hard to come by in our house)LOL....anyhow...I was on the couch with the laptop and Tony was on the rocking chair across from me. Kenny was standing on the ground near my feet and all of a sudden...started walking real slowly towards me...5 steps!!!!! THEN after I hugged and kissed him like mad, he took 5 steps over towards Tony at the rocker!!!! I just love that little guy more than life!!! He is trying so hard to do things so his baby sister wont out do him!!! He has also learned to come down the steps...again...thanks to Gina! Yesterday the two of them were going up and down the steps...it was almost like Gina was saying, "Kenny watch me, this is how you are supposed to go down the steps...feet first, backwards....not head first!"
What a good day it was...Kayleigh's Birthday and Kenny walked!

And Another Birthday

Our 5th child, Kayleigh is 4 today! She is a strong willed, loving, smart and very energetic 4 year old! When she was born, she was my first c-section baby who had a true knot in her cord! We were lucky that I went into labor with her when I did, or else she would have been still born. The funny thing is, is that Sydnie ALSO had a true knot in her cord too! So...both my birthday girls (last week and this) are little miracles!

Happy Birthday Kayleigh!!!!

Fortunate Friday

Wow... sorry for the delay in posting...its been crazy here at the Tomecko house. The amount of homework these kids get...everyday....mindblowing! I am literally sitting at the dining room table from 3-5 pm. And then I have Kenny and Gina getting into everything. Gina is now walking like a pro, so she is everywhere. It's way to cute! Kenny has had diarrhea for about 2 weeks now. Poor little guy. I know its got to run its course, but in the meantime, he has not been able to go to school for 3 weeks now! Yep, school started 3 weeks ago for him, and he has yet to go. I have a feeling its gonna be a very long cold season *sigh.

Since its Friday, I figured I write about what I am fortunate for having. I feel like I am at a new place in life, yes...still living in this stupid 1100 sq. ft., 3 bdrm home that is falling apart around us....but, something about fall makes me love this house. I love making it look warm and welcoming. It makes me feel good. I know that getting the extreme makeover is a very far-away dream. One that I was hoping would happen to us, but...its like winning the lottery...chances are it wont happen. So I am trying to change my frame of mind by thinking that we have to face reality and do with what we have. So, here is my list:



I am fortunate that I have a roof over my head...even though (see above).

I am fortunate that I have great kids with such strong spirits!

I am fortunate that God blessed me with 8 children (7 living), and also the 2 babies that I had miscarried.

I am fortunate that the newborn squirrel that we found 4 weeks ago is getting stronger and bigger everyday. Feeding it every 3 hours is paying off. I saved a life! I feel so good about that! Anyone have a cage I can borrow until he is old enough to let go back into nature?

I am fortunate that I have a great hubby! He works his butt of to provide for all of us. He is a very loving, caring and sincere man. I am glad that we share the same dreams! Driving around on Saturdays and Sundays going to model home....just to see and dream....we find fun in that!

I am fortunate that Kenny has not had to go to the hospital this year...yet!

I am fortunate that I have a great support system for Kenny and our family. Now that Gina is starting to do things that Kenny is still not doing...I am feeling a little sad about that. I am scared for his future but am happy that there are so many family, specialist and resources around us that are helping us.

I am fortunate that I have the memories of our old dog, Pepper. The kids miss him so much....and so do I. But....I don't miss cleaning up dog poop outside, or our house smelling like dog pee.

I am fortunate to see the leaves falling from the trees in the backyard this fall...God is an amazing artist!

I am fortunate that we have a Speedway right down the street from us....their coffee is the best...yes...it outdoes the expensive Starbucks...for just pennies! LOL!

I am fortunate that God gave me talent in art and crafts...I wish I had the money to utilize my talents, but that will come....God is good.

I am fortunate that there is such thing as sign language. Kenny is starting to sign again....and now Gina is too! At least we can communicate with Kenny and he can with us.

And finally, I am fortunate for the time I had with Nick. It was short, but meant the world to me. I pray that I will be reunited with him in Heaven, when the time comes. Miss you like crazy my little man.

So there you have it. I am working through all the tough times, forging forward and trying to make do with what has been dealt to us.

Another birthday....

Happy Birthday to my 4 child, Sydnie. You are a blessing to our family. We love you very much!

Seasons of change

Happy Fall everyone! I have finally come out of my 2 year funk, and decided to take it upon myself to decorate our home. Since Extreme Home Makeover hasn't called...and probably wont, I needed to make our house feel warm, cozy and inviting...so the fall scented candles are burning (in the kitchen of course), the leaf swags and garland with orange lights are everywhere! Mums, pumpkins and scarecrows....I absolutely adore this time of year! I now know that when it is time to sell our house (not for a while), to sell it in the fall...while its decorated!

Haven't done much in terms of blogging lately due to the fact that the kids have just not been feeling all that great. Kenny was supposed to go to his first feeding therapy on Monday, but because he has this upper respiratory cold...cough, out of breath easy and wheezy at times...they told me to keep him home until next week. He is in need of this therapy very badly. His eating is getting worse and worse. He is fine on stage 2 (pureed) and does OK on stage 3...even though he is starting to spit out the chunks of food and just swallowing the pureed part. When it comes to finger foods/solids, he wants so badly to eat. He puts it in his mouth and either spits it out or pockets it for a while. Then he takes everything on his tray and smashes it and pushes it off his tray...it is such a mess.

Today is his first speech therapy... should be interesting. I am trying to figure out how they will teach him to talk. I am hoping for a miracle! I would love to hear him say mommy and daddy!

He is also starting is first day of class this Thursday. Again, he was supposed to start last week, but his cold hindered that goal. So we will shoot for tomorrow! I know he is gonna cry...and its going to break my heart, but it will be good for him (and me) that he gets an all day, well rounded therapy.
We are cutting his day short tomorrow though because he has his doc appt. at Comp Care. I have a lot of questions for them and I am hoping for good answers.

On a different note, Gina is now a walker. She is EVERYWHERE! I love it! Its such a relief and a change of pace from Kenny (not saying anything bad about Kenny). It's just....seeing Gina do simple commands, like "go give that to daddy"...and she walks over to daddy and hands him whatever...its so...ah...whats the word I'm looking for...refreshing. It makes me feel that I am NOT a bad mommy. I am doing everything for them to grow, develop and just be...ah...normal.

Kenny is such a challenge, Ive said this many times before. I love him more than life itself...just like the rest of my kids, but its very hard to think I'm a good mommy when he doesn't respond or cant walk, or...talk, or...eat.

Oh, and then I have my oldest son. He decided to quit football. He loved playing but was very hurt that he was only playing for 1 quarter and sat the rest of the game. We were pretty upset ourselves. Here, you get a kid who has played on the team since 4th grade and they make him sit most of the game...when most of the kids (and new kids) play at least 2 quarters...its just not fair! Yes, we tried to tell Tony that he shouldn't quit...don't be a quitter, but in this circumstance, I think he made the right decision. There is a lot of favorites being picked on his team and for a kid to be put through that...its not right. Especially for a Catholic school team! So, anyhow... we'll see how it plays out.

Thats pretty much it for now...just busy with the kids, their homework, the laundry, the cleaning and oh...the decorating! I love the change of seasons!!!!

Sick, sick, sick...let the school year begin!

Today was supposed to be the first day of school for Kenny....well...he wont be going this week because we have this bad upper respiratory thing on in the house. You know...fever, coughing, sleepy, crabby...which bring....lack of sleep, breathing treatments, nothing accomplished because yesterday I had 4 kids laying around the living room coughing and miserable. We are going today to get them swabbed to see if they have the flu or not. The fevers broke, its just the lung issues now. Gina and Kenny are the ones I am most worried about. They have been up for 2 nights straight coughing so bad, they end up throwing up...so that leaves me with even MORE stuff to do...laundry...oh..and I am still up every 3 hours feeding a the baby squirrel! Oh JOY! LMBO! Its sheer craziness!!! I am hoping this "whatever they got" isn't the swine flu, but it wouldn't surprise me. My anxiety has taken a turn for the worse because of all this.

Here are just a few pics to entertain you all:

Leo the Squirrel...Oh...look what I picked from my garden...Jimmy Durante!!!!!Just a sweet picture of Tony and Kayleigh...I love it!And Gina eating a tomato (no...not the Jimmy Durante one) She LOVE eating them!!! Here is a picture of Tony playing football while Taylor is cheering for his team...Tony is the one with the short socks!

I am keeping this short today just because...well...I am exhausted. I will be updating everyone as soon as we get back from the doctor today.

Feeding evaluation diagnosis and more

Wow...so many updates to talk about. Lets start with...me. Ha. My twin and I turned 40 over the weekend...wow...the big 40. Why does it seem like just yesterday we were celebrating our 20th?! So much has happened in those 20 years...been with our husbands for that long...had kids, pretty much became adults...wow. Some great times...I mean, really great. And also some that I wish never happened. What we get handed in life...what our lives get shaped into from the age of 20 to the age of 40 is crazy!!! I never thought that by 40, I would still be living in the same house that we bought, just Tony and I, a year before we got married. I never thought that I would have 8 kids along with 2 miscarriages...never, ever even dreamed it. I never thought I'd see so many people come and go in my life...enjoying and happy that I got to meet every last one of them...really...from the people that I went to school with, used to work with years ago to my mom friends at the kids school and on line friends.... just everyone. I feel very blessed that each and every person has touched my life, somehow.

On to Kenny...he has officially been evaluated for feeding therapy...and needs it...BADLY. The evaluation started with a group of docs and such wanting to know everything...from when I was pregnant with him and Nick to present time. Reliving and telling everything was very hard for me. Brought back so many memories and feelings. I hate doing that! They then wanted to see how he ate, so they put us in a room (kitchen like) with a highchair. They warmed up a tray of finger foods and told me to feed Kenny like I would at home. Thank goodness it was 11:00, because he didn't eat and was pretty hungry. Anyhow, I gave him tater tots and he was eating pretty good...well...he put pieces of them in his mouth and was making the motions of chewing...when in fact, he was just pocketing the food in there. When his mouth was full, he'd spit the food out and start over. This went on with the beans, spaghetti o's, bread and fruit pieces. It was the typical behavior...put it in, pretend to chew and then, out it comes..or he'll keep it in there for hours...very frustrating!!! He wants to eat so very badly. He wants to be able to do what is normal. He just isn't able to. How do you teach a child to chew his food with his teeth and then swallow. That stuff is supposed to come naturally, isn't it?
So their findings were exactly what I expected....he cant eat. Medical reasons are: being intubated for so long, the roof of his mouth is very high (his palate). Secondly, he is hypersensitive to temps and textures in and around his mouth, but hyposenitive to things being in his mouth. He was born so early, he cant connect with the fact that he has to chew (which doesn't mean move your mouth open and closed) with his teeth and then swallow what is in there. With pureed foods, it just slides down his throat. THESE are the things that the doctors DONT tell you when your baby is fighting for their life in the NICU...the everything that will happen or find out when your micro preemie is home...home for a few years. They are also going to be sending Kenny to an ENT for those nasty ear infections he's been getting. At which, they also mentioned the Cochlear Implants for him. What next? *sigh*
So, he will be getting intense feeding therapy 1x a week, at the clinic and then I have to work with him the rest of the week. Ohhhh joy, a new challenge for me! This is going to be a long road with him, but I am praying that he will be able to chew and swallow. I am scared for him, I really am.
SO, on the same day as his feeding eval, the genetics specialist called me to tell me that they found just a very...yes she emphasised teenie tiny, very small section of chromosome 17 is missing. WHAT? ummmm....ok? How the heck did this happen? She didn't go into anymore detail except to say that it might be normal for him, if one of us has the missing piece...so we should get tested. And that was it. So now I am stuck with this piece of information...of course, I go and Google it to find out what does this mean...I shouldn't have done that. I am scared for my little guy even more now. So what will these finding mean? I am not sure. It's not going to make him any better. Its not going to be able to fix his lungs, his hearing, his muscle tone, his delays or his eating. What we will have is yet another "diagnosis" for him. Which will at least stop me from wondering....I think. I just want my precious little Kenny to be the best he can be. He is already walking while holding hands...not steadily, but he is doing it. This is after doctors told us that he might not walk.
I have high hopes for my kids, and all I can do is pray that their lives are fulfilled. Full of love and success in what they make of it. I say UGH to this journey called life...its a little harder than I thought it would be, but am making the most of it as I can. God gave me a good 40 years of life so far....extremely busy, lots of sorrow but also love and courage! We don't have money or tons of things, but I do have 7 wonderful living children who all have very different personalities, wants and needs. I also have 3 angels (my Nick and 2 others from miscarriages) watching over our family and hanging with those loved one that have passed on. I have a wonderful loving and caring husband who I just admire and love to the ends of the earth and beyond! I have my parents (and in-laws), sisters, and friends whom I love so much...thank goodness for Facebook so we can all keep in touch and "talk" every day.
So...I forge onwards to another year...what will my journey though life bring next?

Happy Birthday to me (and my twin)

Happy Birthday to my twin sister Diane. The miles keep us from being together on this very special...ah-hem...40th birthday, but I celebrate today with you in my heart and on my mind....

Wish we could spend our birthday together, hopefully next year sis! Love ya tons.

Turning 40 isnt too bad...right?! LOL!

In my dreams

Two years ago tomorrow...August 25, 2007...was my due date for the twins. It was a day, a dream, that never came to be...a day that turned out just to be another August day. Getting that due date of August 25 was so exciting...yes, I know that with twins comes prematurity...but it was still a date that will forever be burned into my life, my eternity. I was going to give birth to twins...wow..what a miracle of life...two babies after 2 miscarriages. I thought to myself these are the souls of my babies that I lost, coming back because God made a mistake. But...God doesn't make mistakes. What was I thinking? These two miracles, Kenneth and Nicholas, were miracles in their own right.

Nick living for 2 days...THAT was a miracle. Kenny being here today...THAT is a miracle. Being born 17 weeks early...THAT is a miracle! Its a miracle but also a nightmare. A nightmare that no parent should EVER experience. The pain does not go away. Always missing, always wondering if there was something that we could have done. Always wishing things were different. Reliving the day everything bad happened. It should never of happened. To us, we were supposed to have our twins...Tony is a twin, I'm a twin...we were supposed to have twins! I still am trying to figure out why God would give them to us and then take one away. Why God would make Kenny have to struggle with everything in his life. Why would he make our other kids experience a death of a sibling like I had to do. Why would he make Kenny grow up and live life not knowing how much fun being a twin can be, having a "built in" best friend...forever...like Tony and I get to experience. Celebrating birthdays together, going to school together, and switching classes on April Fools Day. Going to Twins Days together...Growing old together...Why would that be? I know it cant be to punish us or to punish Kenny...God is not like that.

So, I want to wish my twins, because I AM A MOMMY TO TWINS, one on earth and one in Heaven, a very happy "due date", tomorrow. A day that, in my dreams, you both were to be born...healthy and with no disabilities to stand in your way. No pain of surgeries, needle pokes, sensitive nervous systems, infections, medications, hearing and vision loss, developmental delays, muscle tone problems...and no death. There is no feeling of guilt for causing all this...even after all this time.

In my dreams, my loves.

Thoughts for Thursday....

I sat here looking through my vast array of "blinkies" that I have downloaded throughout the years...and came across this one.

I sat...stared at it this morning...and thought....WOW, I never saw the correlation before, nor did I ever think twice about it. It goes right back to my whole numbers obsession.

Like my post a few weeks back when I was saying how Kenny and Nicks birthday 5-2-07 meant that I had 5 kids, just had 2 more which equals 7...and then there is Gina's birthday: 7-17-08...7 kids, added 1 more to the 7 and then got 8....well....now this!

Matthew 5:4 Blessed are those who mourn, for they shall be comforted.

Nick, our angel twin, passed away on 5-4... coincidence? I think not!

God is good and will help us get through tough times.

Sometimes life drops things right in front of you

So back to school is fast approaching. Not only for the older kids but for Kenny! I am so nervous. I know it is only for 2 days a week, but those two days...dropping him off...seeing his sad face when I walk out the door...ugh...it just breaks my heart! Then I sit and worry about the stupid Swine Flu hitting our house...I know I can sit and tell the kids...wash your hands, don't drink from the drinking fountains at school, etc...but the fact is, the media is making me into a basket case from this!!!! They say it affects those with underlying problems (like asthma)...well...most of my kids HAVE asthma (so does my parents and twin)...so...yeah...kinda scared here.

Anyhow..we have a new addition to our family....LOL...I have just taken in a week old....SQUIRREL. Yep, you read it right. Tony was taking out the trash, and saw something laying in the grass in the front yard. He went to pick it up, thinking it was one of the kids toys...and it started to move! I was told by many to let nature take its course...I did to a certain extent. I put it in a towel, by the tree where it fell out of...HOPING the mommy would come down and get it...well...that didn't happen. So Mommy Tomecko had to intervene! Started out with pedialyte and a hot water bottle...still leaving it by the tree...and still no mommy squirrel. Well now its not coming back so I am feeding it special formula, every 2-3 hours and keeping it warm. He has perked right up, he is getting active, gotten his coloring back and is not dehydrated anymore. I sat on my front porch the night that we found him...holding this teenie tiny creature...eyes still fused together...wondering what to do with it. I couldn't just leave it to dye...I couldn't "let nature take its course" because I kept thinking back to Kenny and Nick...their eyes were still fused together...unable to care for themselves...if we were to have let "nature take it course" with them, Kenny would not be here today (yes, I am comparing my HUMAN babies to an animal...sorry if I offend anyone, I am just trying to make a point.). Anything that is a living creature deserves a chance at life...in my eyes anyhow. So as long as I live, if I see an animal in trouble, I WILL try to save it. Its just the way I am. It gives me such a good feeling to see this tiny little animal bounce back from near death because of love.

OK, enough of Animal talk...LOL..

Not much new on the little man we call Kenny. We are going to try Toupee Tape to hold those darn hearing aids in. He is getting a little better with them in, but still pulls them out constantly! umm....lets see...OH! Gina...she is starting to take steps now! I give her by the end of the week, she will be walking everywhere! Yay Gina! I am sure that once Kenny sees her walking, he will HOPEFULLY be right behind her!

That is pretty much it. Like I said, not much happening...just the same old...PT/OT, laundry, football, cheer leading, school shopping...oh...and now taking care of a critter on top of all that! LOL!

I should take a poll...what should we name the baby squirrel? Please respond in the comment section!!!

Have a good day everyone.

Kenny has a surprise for all!

I am finally able to post again! You know, when it rains it pours...first, my laptop dies...then the kids (old millennium edition desktop) decides to lock up and not have enough of ANYTHING, my camera breaks and finally, my husbands hard drive on his laptop fries out...I heard it racing but never thought anything of it...and...well...it did get hot to the touch all the time, but...eh...well it died. We just got a new hard drive in and now I have to start from scratch....can you say DARN!

Sooooo...on to the big news!!!! While I was away, Kenny decided that he was not going to let his little sister do things without him trying....WE HAVE A STANDER!!! He tries so hard every day to stand on his own...its not for long, but he does it...I feel so strongly in my heart that he will be able to walk!!! We are so happy...The whole thing is bringing tears to our eyes!We always knew their was a reason for Gina...and now we know that she is helping Kenny learn to do things...want to do things! Both my babies showing off how they can stand!!!!The smile on his face says it all!!! Gina stands like an old pro! Not even wind can knock her down! LOL!!!
So this brings us to another one of Kenny's obstacles...his hearing. I received, in the mail, the print out of his hearing test from his Audiologist...it is a little worse than we thought. He is now in the Moderate/Severe hearing loss rather than mild or even moderate. He falls in the 60-65 range...which is tipping the severe side of hearing loss.

So I have been really pushing him to keeping those darn hearing aids in his ears...I don't care if he doesn't like it...he can hear so much better with them in, not to mention learning to talk. Right now, he is not saying much...Bro bro (for little Tony and sometimes his sisters) and...well...that is pretty much it! He does say Ma...but I really think it is just a sound to him rather than a word. This is a great site to hear sounds like Kenny hears...I'd go nuts (check it out!)

He has really come a long way. From being that teenie tiny baby in the NICU to now...I am in AWE of him. He struggles with many things, but he is determined and strong willed...and that is what kept him alive in the NICU all those months (along with his twin guardian angel).

And on to the other kids....lets see...

Baseball has ended...football has started. Practice every day from 6-8...Little Tony is doing pretty good considering he is one of the smallest (thinnest) on the team...but I think that helps with how fast he is! Now if I can just get him to work on his summer homework...which has to be turned in on the first day of school.

Cheerleading has started as well....which is what Taylor is in! God help me. LOL!

Morgan is just happy to help sell hot dogs and hamburgers at the practices to raise money for the team...that's my little salesgirl!!!

And Sydnie and Kayleigh...well...they are still having fun with their stuffed animals.

School starts in just a short 2 weeks...part of me is very happy that they are going to be going back, and then the part that has to wake them up in the morning, help them with their homework and make their lunches, wishes that it was the first day of summer again. We still have some school shopping to do, but not much.

I have so much to talk about....but I am going to have to break this up in a couple different posts...so until the next post...chow!

Crazy whirly life.

I guess an update is in order. So much has happened in the last week. First off, my USB cable to my old camera that I've been using finally broke...So...no pics this post until I can find a new one to upload my pics.
Lets see...well...Kenny got his helmet on Friday...its cute and it does its job (thank goodness that daddy is a vinyl graphics sign guy who can customize his helmet to look cool). He cant pull it off because it really is on tight...but not too tight. When he goes to bang his head (with it on) he kinda stops mid "bang" like...wait...I cant hit my head with this on. So its working! YAY! I have to say that I really don't like him wearing it too much because I want him to be able to tell me why he is frustrated not get used to wearing the helmet. Which brings me to my next topic...his PT yesterday was AWESOME!! Yes, he cried a little when he thought I was going to walk away, but I wasn't...I was just getting a ball. Jaime, his therapist, held him, made him look at her and she was signing and talking to him to use his words. So...after a short tantrum and trying to figure out what he wanted...Kenny signed "Mommy" and signed "more" and a different time made a sound similar to "BBBall" and also made a sound like"pppp" for pig...a toy that he was playing with. He was using mostly his right hand to play with toys, but she was making him use his left. Also was working on his rotation of his trunk...reaching and putting in...and finally to end a GREAT therapy session...holding his hips and making him stand and walk to me! Very sloppy...but he did it! I know that it really wasn't a huge step...but these baby steps are so amazing to see. I work with him (and Gina) daily...and to see that for Kenny, it is starting to click with him, just makes my day. With Gina...she is surpassing Kenny with some things...talking, standing without holding on...I want to teach her that its OK to do things ahead of Kenny, because Kenny has to do things at a different pace. I also have to keep telling myself that too. And...with Kenny, I just have to really watch his movements because she (the therapist) says that Kenny is trying to communicate...just in his own way. So I have to be very vigilant as to what he wants...watching his hands for signs. I also have to be very persistent with making him use his words (signs) for those head-banging, temper-tantrums.
I received his speech therapy evaluation report and they are recommending him go to speech 2x a week for 30 min. So...now its a waiting game...AGAIN.
So...now we've got PT 2x a week, OT 1-2x a week, and speech 2x a week...on top of his school starting in Sept. which is 2x a week...and specialist/Dr's appts galore...ON TOP OF school starting at the end of Aug. for the 4 older kids, football for Tony, Cheerleading for Taylor and PTU for Tony and I....AM I CRAZY? Yup...just a little! LOL! I have my "BIG CALENDAR" out and ready to start filling in the dates! LOL!!!

Blog Award!!!

I have been away for a week and look what I get...AN AWARD!!! YAY!!!

My friend and fellow blogger, Madison over at Life Happens During Naptime sent me this....my very first award! I am so happy. I never thought that I would get an award for MY blog. Thank you so much Madison.

I have found that writing my blog has helped me cope with the whole journey of the way my life has taken. I can express myself to others and hopefully help others know what goes on when a pregnancy ends very early...how you are stuck with raw emotions that don't stop after the death of a child, or the struggles that a micro preemie must endure, even after they are home from the NICU, or even how us parents and siblings deal with it. I want to be here for families that have just had a micro preemie and needs someone to relate to.

Ah anyhow...Thank you so very much again. I will post this award proudly!

I would like to pass on this "lovely" award to some of my favorite blogs. Blogs that have inspired me and have given ME hope to face each challenging day. Please check them out!

Nicholas Richard

Profoundly Seth

Julie's Daily Inspirationals

Fort Thompson

Micro Mom Blog

Micro Preemie Twins: The Story of Holland and Eden

Our Simple Life

Blogging Hallie and Lea's Life

The Continuing Story of Preemie 26 Week Christmas Miracles

Littlemanbig: A Micropreemie Adventure

All About The Larsons

J-ust M-e

The rules of the “One Lovely Blog Award” are: Accept the award, post it on your blog together with the name of the person who has granted the award, and his or her blog link. Then pay it forward! Remember to contact the bloggers to let them know they have been chosen for this award.

Fortunate and Fantastic Friday

Kenny and I (along with the help from Gina) were working on his fine motor skills today! Started out a little shaky, but as you see from one video clip to the next, he was getting it! I am trying to get him to use his left hand and arm more. I am so proud of my little man! The last video clip is the cutest...I love how he gets Gina's assistance in the last one!

My Version of Thankful Thursday

I am thankful for my large family because without them life would be boring.
I am thankful for my small, cluttered...falling apart house because without that I wouldn't have a home.
I am thankful for my handsome best friend, my hubby...because without him, my life would not be fulfilled.
I am thankful for my loads of laundry every day, because without it I wouldn't know how to wash clothes so well.
I am thankful for the broken ceramic tiles in the dining room to living room because without those...I wouldn't stub my toe every day.
I am thankful for my morning 24 oz cup of coffee from Speedway (best coffee BTW) because without that...my day wouldn't begin on the right note.
I am thankful for the days of rain because those are the days that I get to "connect" with my kids the most!
I am thankful for the raccoon that gets into the trash every night because at least I know that I am feeding an animal that would starve if he didn't eat our garbage (one mans trash is another critters treasure)...even though we have to clean it up every morning.
I am thankful for the constant calls on my hubby's work phone because at least he is getting work (god I hate that ring tone)!
I am thankful for fall scented candles and plug ins because this summer has been a bust...at least I can look forward to the fall.
I am thankful for all the poopie diapers that I change everyday because without those I wouldnt know the smell to the above (scented candles).
I am thankful for the Pediasure and stage 2 baby foods stacked up in my cupboard because it reminds me that Kenny is a survivor!
I am thankful for the constant...every day...therapies, doc appts., meeting with specialists because without those Kenny would not be progressing the way he is and will be.
I am thankful for summer homework for the kids, because without it...I wouldn't get the opportunity to tell my kids that they are getting older and I shouldn't have to tell them to do their homework...just practice for the school year!
I am thankful for the "lack of vacations" we, as a family, have endured because without them my kids cant bug us to "go back" to where we went on vacation.
....and lastly...I am thankful for hoping and dreaming because without those I wouldn't hope and dream for a better life (Come on Extreme Makeover Home Edition...let us "move that bus").

5 Minute Breather...

As I get a 5 minute breather (the babies are asleep and the older ones are out "making a fort"), I want to reflect on something that I have learned this past weekend.

My husband had the honor to do all the signs and banners for the NEO Challenger Baseball Tournaments. For all of you that don't know what that is, NEO Challenger is an organization that gives children with handicaps and special needs the chance to have the fun and excitement that kids that don't face a life of special needs. These wonderful children get the chance to play baseball...on a team and if they cant run or hit or catch the ball...its OK. There is no scores to keep, there is no angry parent screaming at the coach, ump or other team because it is to have fun and keep it about the kids. Our eyes were opened wide this weekend...these kids, their parents and siblings were there to have a great time. As I sat at the dance and watched these kids, their families and coaches have fun on the dance floor...wow...this is what life is about! They were happy to be alive, they didn't have to worry about if they were different, and just...I don't know...such miracles. THEY are what life is about! These mothers, fathers, grandparents, siblings....they were so proud of their special needs child...for one weekend, they didn't have to worry about PT/OT, hospitals, or equipment. They didn't have to ward off stares from other people, stupid comments or feel that they were different...they were so perfect!

Tony, my hubby, did these banners for the event...

and these...

A very cool balloon creation that was at the dance...

I finally felt like we fit in somewhere. I met a lot of people, some with harder challenges than us and some with easier, but all in all, were just thankful for what God has given them. Sure, we all want our kids to be perfect in society's eyes...but what is perfect? What is the perfect life? Is it being able to go here or there whenever you want because you don't have to spend the majority of the time at the hospital for appts., therapies or sick visits? Is it not having to deal with a child who cant hear, walk, talk, see without glasses, eat solids, not have any developmental delays and/or needs oxygen when they get sick? Is it never having such horrible flashbacks of being in the NICU and wondering if your child will live or die...and then watching one pass away right before your eyes and unable to, as a parent, be able to save them? Is it being secluded every fall through spring because of fear that your child will die because of RSV or pneumonia just from the common cold? Is it wondering if your child will be one of "those kids" that other kids stare at or make fun of because they walk, talk or act a little different?

Perfect is what you make of what you have. We have lost a child, and have his surviving twin who has many problems that we are working with. To us, Kenny is Kenny...he has his problems which we know he does...everyone can tell us that he "looks just fine"...but we know...we know that he should be walking, talking, eating solids, communicating more with us...but he's not...and that's OK. We are doing the best we can, getting as much help for him as we can...giving up so much for him AND for our other kids because we chose to have our big, beautiful family. Life is not about how much materialistic "stuff" you have...its not about shopping for the newest fashions, getting your nails done every week, buying the newest...whatever. This past weekend was about connecting with the most loving, caring, unselfish and understanding people I have ever come across.

To have a child die in your arms and then be faced with the challenges of having a special needs child ON TOP OF having a large family...it is...humbling.

Ohio Challenger Baseball 2009 Tournament held in Northeast Ohio

Birthday party in review...

This past Sunday, we celebrated Taylor's 10th Birthday and Gina's 1st Birthday! Taylor had her friends over and we also had family...so it was a very full house with tons of food and a yummy double cake with chocolate mousse in the middle...and let me tell you...the best cake EVER!!! Her smile in this picture says it all. I am so glad to give my kids a birthday party. You know....we cant go to this or that, but a good old fashioned house party is just as good. I had crafts for the girls and music blasting in the back yard...it was a good party.

Taylor even got a "birthday hat"...

Gina enjoyed her first birthday cupcake!

And Kenny was his very cute self.

Here is me feeding him

Kenny and Gina are still feeling a little sick...I really think Kenny's ears are bugging him really bad. He is banging his head all the time and the only way I can feed him (or should I say, get him to eat) is holding him like this.

This week...Ophthalmology appt., 2 PT appt., 1 OT appt., Audiology on Friday and we finally got a speech therapy evaluation on Thursday. Sigh...very busy but very well worth it.

I just want to give a shout out to my hubby, Tony. Thank you for everything you are doing. I know that you are stressed out with tons of work and no help...Thank you for everything you are doing for us and our family. I love you! I am happy that you are busy...miss you...miss that we don't get to spend time together...and wish I could help you, but glad that things have picked up a bit. I love you honey.

What to expect when you have a micro preemie.

Doctor appointments with about 10 different "specialists" and therapists

Breathing treatments all day long, everyday.

Carrying around a 22 lb. kid because he cant walk.

tripping over oxygen tanks

No room in the house because of all the therapy and medical things.

Sickness

Frustration

Anxiety about everything from, fear of death to a dirty house...and everything inbetween.

Anger at the question Why?

Sleepless nights

Hospital stays.

Throw up from coughing/breathing problems AND from oral adversions.

Not looking but looking for "the next bad thing"...crossing eyes, left side weekness from eye to leg. etc...(I guess that this should go in with the anxiety one.)

Isolation from friends and family...well...from the whole real world as you used to know.

...these are the negatives that no one tells you about.

The positives are:

Having and raising a beautiful miracle that is your micro.

Patience

Special friends and resources that I never knew existed if I didnt have a child with special needs

A new respect for life and what is really important.

A new me...I dont know if it is better...but it is definitly new. You know...when they say that losing a child will change you forever...it did so much. Part of Tony and I died. Our dream of having twins died. Raising Nick AND Kenny was so badly wanted...it hurts just thinking of it, but having a child with special needs changed me that much more.

Yes, the negatives out weighs the positives...but only in numbers. The positives are deeper than anything I have ever imagined.

Ok...so this week has been CRAZY! Started off with PT and OT for Kenny... so now, its 2 days a week for PT and 1 day a week for OT. I strongly feel that he needs more OT at this time, so when we go back next week, I'm gonna talk to them about it. He has a very weird looking, tight pincher grasp that I want them to work on among other things. I has a meeting with all of Kenny's peeps that work with him from his service coordinator, his teacher at his school during the school year, The county board health director, his child psychologist and his person that works with him from the Regional Infant hearing clinic. We were working on where we want Kenny to be for the next 6 months. Our goals are hopefully very reachable. I told them that I want Kenny to be the best he can be and to not look at him as a kid that has handicaps, but a kid that is going to learn on his own time (but with lots of help from us). Those goals include: Getting Kenny to stand without holding on to anything. I didn't want to say walking because I want to reach goals that I know he will achieve. If he does start walking within the next 6 months, that will be a bonus for us all! We want him to start to drink from a sippy cup. He is still drinking from a bottle. He doesn't know how to work a sippy cup. I have tried over and over again. We think it has to do with the whole chewing/swallowing/oral thing, he has going on from being intubated for so long. Another thing we want is for him to start keeping food down. Oh yeah..this will be a big accomplishment for us! He throws up EVERYTHING. Just yesterday I gave Gina those little Gerber Graduate meat sticks (cut up). She was eating them like a champ. Then you get little Kenny who WANTS to eat them...put one in his mouth...rolls it around in there for a while....comes over to mommy who was sitting and checking my e-mail...and BLAAAAAA....all over me. I had puke dripping down my legs, in my lap...yuck! I guess that will teach me to be on this dang computer when the kids are around. LOL!

We also want Kenny to start to communicate with us...either with sign language or speech. Right now, when Kenny wants something, he will either point to it or smile when we go through the list of "what do you want? do you want __ or __ or __?" He is very good at signing "all done", but that is about it. He used to sign "more", but he stopped doing it, even though I sign all the time to him.

Its just such a job. Yes, parenting itself is a job, but having a micro preemie is overtime!

I want to hear from other micro preemies that were born at 23 weeks gestation...anyone out there? I need to hear from you what you are going through. What to look forwards to. What to expect. I dont know what to expect...the outcome of him being born SO, so early. I NEED to know.

Right now, we are fighting off a double ear infection and upper respiratory issues again with Kenny...up all night (even more now that he is sick) with breathing treatments around the clock. Puking when he goes into these coughing fits, banging his head even more now that he is on his 4th ear infection in about 5 months. Not very fun at all. Then Gina has an ear infection and Kayleigh is coughing like crazy...what is up with this? Summer is supposed to be the "healthy" months!

This week coming up we have his ophthalmologist appt. I am very anxious to see what they say about how his eyes are starting to cross. It's just another issue that we are going to have to deal with.

Tomorrow we are celebrating Taylor's 10 birthday and Gina's 1st birthday... so tons of cleaning, shopping and setting up for that. I just love our family get-togethers. You know, the priest at Tony's uncle's funeral yesterday (RIP Uncle Bob...you will be missed) said it best. Family is everything. Family and friends. This is why we have these parties...not for the gifts that the kids get, but for our kids to grow up with their Aunts, Uncles, Cousins and Grandparents. I want them to know that they have so much more than just us. To us, family is so very, very important. You are there for them when they need you. You can grow up and put your whole self into work...but in the end...what really matters? Tony's uncle Bob and his wife, Aunt Linda don't have a lot of money but they do have family and friends. And at his wake and funeral these last few days...showed a strong, loyal man who had family and friends who cried for him but also celebrated his life. A life that he shared with his family and friends. We should all learn from that. I pray to God every night that he give Tony and I strength to get through everything. That so what we have a small house that isn't in the greatest shape but at least we have one. That friends and family dont think I am ignoring them because I cant go out or talk on the phone...raising 7 kids that all want me and need me is very tough, especially one that is at therapies, doctor appts., and sick all the time. That everyone that has passed away is in Heaven waiting for the day that we can all be reunited (not for a loooong time though ;) ). That my kids grow up strong and loving and also protective of each other... oh...and that Extreme Makeover Home Edition picks us. Had to throw that in there. shhhhh.

Independence within

May we take a few moments to think about what this day is all about. Take this moment to pray for our soldiers who are protecting our freedom. Our soldiers who cannot be here having cookouts or watching fireworks with their loved ones. May God bless you all and watch over you. And for those that have fought and come back...may this day hold even more meaning for you...thank you for everything you have done for our country. Lets also remember those that we have lost for our freedom....you gave the ultimate sacrifice for our country...thank you.

Kenny LOVED seeing fireworks! He kept pointing to where they were going off...and for the finale...his eyes were squinting but he had the look of amazement on his face...it was priceless!

My oldest having fun watching the fireworks! You know, to see your the true kid come out is so neat to see...it always seems like watching fireworks brings it out! No matter how old you are, fireworks makes you a kid again!

This one is of Kenny walking in the grass...he has massive sensory issues, so he really didn't like the feel of grass on his hands...and thank God he was wearing jeans because his legs are 10 times worse! He managed to get around and get used to it. I guess it is just going to take some time and lots of work!

I love the expressions on their faces watching the fireworks!

Kenny pointing at them! He was so excited!

So that is how our July 3rd went! Like I said, this week has been very busy with doctor appts, and therapy. It has been rainy and cold so the kids haven't missed much. Kenny is really starting to catch on to things being taught in PT. Now if he would just keep his hearing aids in.

The older kids had fun too! Taylor and Morgan have been over my sisters house, in PA for a week (its my kids version of vacation)...they are having so much fun there. Thanks Jackie for taking them this past week! And Tony went fishing with his big cousins, John, Tina and Ray...he has more fun doing guy things with them...Thank you for taking him for a few days...he wont stop talking about the fun he had with you!!!

I also want to wish my oldest daughter, Taylor, a very Happy Birthday! 10 years ago tonight, my water broke before we were going to go see fireworks...I had my little "TNT" at 3:56 in the morning on the 5th! She was my first girl out of 5, and so sweet and beautiful. I cant believe that it has been 10 years since that day. Why do I remember it like it was yesterday? Why does time have to go by SO fast. Thank you Taylor for being a wonderful, smart, happy, polite, caring, loving young lady. May the next 10 make you independent, successful, along with all of the above. Don't lose yourself to others. Stay strong, loyal to yourself, and make the right choices.

I thought the first 10 years were tough...I am so nervous for the next.

I love you sweetie!

Oh...and can someone please tell my youngest daughter, Gina...NOT to eat Earwigs! Oh yeah, she did...and let me tell you, not fun to fish out of her mouth! Ahhh...the joys of motherhood!

I have one last picture to end this post. The other day I put Kenny down for his nap. I had Gina crawling around...then...everything went silent. I was thinking to myself...what is Gina getting into now...because every mother knows...when a usual noisy house gets quiet, someone is getting into something they shouldnt....well...this is what I found...

Gina grabbed the blanket off of Kenny and cuddled up to him! God, I love my kids!

Have a very safe and happy Independence Day!
Remember the reason for this wonderful day...

God Bless America!