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!

Words to live by....

1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won't take care of you when you are sick. Your friends and parents will.. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. It's OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't screw up the present.
12. It's OK to let your children see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye. But don't worry; God never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words 'In five years, will this matter?'
27. Always choose life.
28. Forgive everyone for everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously. No one else does.
33. Believe in miracles.
34. God loves you because of who God is, not because of anything you did or didn't do.
35. Don't audit life. Show up and make the most of it now.
36. Growing old beats the alternative -- dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else's,we'd grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel, get up, dress up and show up.
44. Yield.
45. Life isn't tied with a bow, but it's still a gift."

Written By Regina Brett, 90 years old, of The Plain Dealer, Cleveland , Ohio

23 week gestation...a true miracle of life

What a crazy week! We started it off on Tuesday, going to a new PT at a new facility. It was so wonderful. I love Kenny's new therapists! They couldn't get over that he was a 23 week-er! They were amazed that he was doing as well as he was! The one therapist never dealt with a 23 week-er while the other has one other patient...she is nine now. I told her that I was frustrated about what to do for Kenny, where to go, and what to expect from him. She told me that I have to take it a day at a time with him because there are not too many actual "23 weekers" alive. Yeah...24 and 25 weekers, but to be a 23 week-er....17 weeks early....truly a miracle. To ask a doctor what is wrong with him and how we can fix it is hard because honestly, they don't know. Yes, he could have CP, Autism, etc... but when it comes down to it, he was born at 23 weeks gestation...there are going to be problems.

What makes a 23 week gestation preemie different from any other preemie?
The unknown. Not too many babies born at 23 weeks gestation survive... there are a lot of unanswered questions as to what to expect from a baby that was born at 23 weeks.

So...we are going to focus on not what he HAS, but how to help him make his life productive. We are going to help him learn to be a happy, healthy, loving person that will contribute greatly to society and be the best he can be!

His legs are stiff and very sensitive to touch, his "gait" is wide and his walk is very very sloppy with standing on his toes...we are only using his gait trainer to give him a break from crawling and not for learning to walk. It will be a while before he is ready to walk...I am sad for him but we will work with what God has given us.

We are to stimulate his legs and feet with a dry washcloth to desensitize his muscles...he literally spasms when we do this...I was told that it does not hurt him...even though it looks like it does...I hate doing this, but in order for him to walk and have "normal" feeling in his legs and feet, we have to do this.

We are using signs more, using pictures for him to "choose" what he wants...haven't started that yet, but hoping he pics up on that quickly. It's hard because he doesn't say anything, show us what he wants or communicates with us...yes, he points and smiles but that is all. I just have to find how to communicate with him...and...I will!

So...now...we are starting this new PT two times a week. Next week I take him to the same place for OT...and that too will probably be 2 times a week...I THINK I am going to be a little busy! LOL!

You have to see me...I take some or all of the kids with me and I get,"wow...are they all yours?" or "I don't know how you do it."...and my favorite...the counting out loud behind my back! LOL!!!

I just have to laugh. I just do what I have to do. I don't think I'd know what to do with myself if I only had one or two kids!


On another note...my husband and I FINALLY got out for the weekend WITHOUT kids. His cousin got married and we stayed at the hotel where the reception was. It was the best "overnight" ever! We regrouped and were refreshed when we went and picked up the kids over my nieces house. The kids were great for my nieces and my sister (thank God). I feel like my old self again...ready to tackle what life has to dish to me!

I also want to send my condolences to the friends and family of Farrah Fawcett at Michael Jackson. May they rest in peace and the families have the strength to make it through this hard time. They both struggled with their own lives, Farrah with her strength and courage battling cancer with dignity...and Michael, with all the sadness, tragedy and accusations and secrets that entailed his life. No matter what the situation...a mother and father still lost their child, siblings lost their brother/sister, children still lost their parent and friends lost people that meant something to them. Never an easy thing. God bless this world...may there be peace, love and happiness.

A father X's 8

Happy Father's Day to all the Dads, ,Grandfathers, God Fathers and soon-to-be Dads!

Funny how when you are a kid, you don't think that you will ever be called a "mom" or "dad"...but when you hold your child for the first time....your heart is theirs forever!

Being a dad is so much more than giving you child life. It is about being loving and responsive to your child. Take time from the busy life you lead to spend doing something...anything...even read a book to them. Being a dad is about having rules and guidelines, to show boundaries but also teach your child that they can and should be a kid and that it's ok to make mistakes. To listen and really hear what your little one is telling you and to let them be able to grow into their own personality.

There is nothing better than to hear a child laugh and tell you they love you...hold onto that because when they start the preteen years...you wont hear it for a while....and if you do, it is not all that often...but...you do know they love you even if they don't say it!

I want to wish my dad a very happy Father's Day. You live far away but I love you with all my heart. I remember growing up and being so proud that my daddy was a mail man! I mean, how many kids can actually say that...to me...it was right up there with police officer, firefighter, doctor...you get the idea. I saw how loving you were to mom and to all of us...but also I saw your strict side when it came down to it. Growing up, I saw your strong, patriarch of the family side and when John died, I saw how you needed to be comforted. To be able to understand life, you have to live it...and feel it...and that you did. Thank you for being the best daddy ever. With everything you and mom have been through...you are still compassionate, loving, understanding, funny and there for us kids when we need an ear.

My husband always told me...from when we first stared dating (and still tells me)...how did your dad do it? How the heck did he raise 6 girls? I have to answer that with...he let us be us...with a little encouragement and discipline.

I also want to wish my husband a very Happy Father's Day. I still remember the day I told you that I was pregnant for the first time. I was so scared and nervous. It was a whole new life for you and I. You sat with me at the hospital, every night after you got out of work...for 5 weeks...that is when you became a dad.

You take time out of your busy work day to help me with one of the kids or to play a little bit of basketball with one of the kids...you coach baseball for two teams...and still manage to get your work done. WOW. I am so glad that you are in my life and our kids lives.

We've been through so much...kinda like my parents...funny how our lives are parallel. We never expected or ever thought that we would have so many kids...life sometimes throws in a curve ball....but I am so glad that we are in this together...yeah, we have our moments, but so does everyone. I think that if we could make it through 8 kids, NICU life, death of a child, financial setbacks (I say this term loosely...or maybe I should have said, "economic death-drop". LOL...Hey... I think I made up a new term! USING IT!!! HA!), raising a child with multiple problems and still have time for each other, we will make it through anything.

You are a strong, loving and devoted man, husband, father, son and friend. I want to thank you for being in my life. I want to thank God for giving you to me. And I want to thank your parents for giving you life and raising you to be the person that you are today. I am very proud to call you my husband and the father of my kids.

I want to give you the world, but my heart will have to do!

This shirt says it all (I just had Gina added yesterday)!

So...to all you Dads, Grandfathers, God Fathers and Soon-to-be-Dads...Have a very Happy and Blessed Father's Day. Thank you for being part of one of Gods greatest gift...kids.

Random pics Thursday

Bumper cars on the deck....what better way to spend the morning! The deer that keeps going after the garden...where is the fox when you need him?! Cute, but eating our watermelon and bean plants.
Just a random pic of Sydnie and Kayleigh.

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!!! *

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!

R.I.P.

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.