To build and beyond....

Ahhh...went by the build site again today. Tony dropped off the magnets for the security team, and I, well, I walked up to the build site with Kenny and Gina. How interesting was THAT?! OMGosh, we got to see them working on the foundation and everything that goes along with that. Soooo cool!

Again, I am just at awe with how this show, along with all the volunteers, are helping families in need. Truly inspirational!

So, without further adieu...the pictures from today...Yes, these are the magnets that Tony made for them...He beats Fast Sign ANYDAY...turn around time...overnight if not sooner!!!! ;)Then, we ran into a friend of ours who is a Maple Heights firefighter and his coworkers....And finally....Kenny and Gina both give the peace sign to you all....Yes, this is closest version to the peace sign...but as least he tried. Yay Kenny!!!

More pictures coming as the weekend progresses!

p.s. click here -> to join our Facebook page to get EMHE to come back here to Cleveland for Kenny!!!!

Helping move that bus...

OK...so we didn't get the home makeover and it kinda sucks (a whole lot)...buuuut...we do have the opportunity to help others, and that is exactly what we are doing!

We are doing banners for the Extreme Makeover site and while dropping off one of the banners, Tony got a job from the Extreme Makeover security! LOL. We did decided to donate the job to the family though.

This is Tony measuring the truck for the magnets he is making...again...another extremely nice head of security. We are very excited and happy to be helping out. We figured we're not gonna sit around and mope about it...we are gonna help...and that is exactly what we are doing.

This is one of the banners that Tony made last night for them

We are also making the Welcome Home banner for the family as well! It comes back around eventually...the way you treat others, it will come right back to you...We are not materialistic people and this is such an awesome opportunity to really help not just the family, but people that worked for Extreme Makeover. It also takes our minds off of the h#ll we're going through. It really is a good feeling to help.

I'll tell you something though...wow...just wow. How the whole community gets together to help. This kind of thing should be done twice a year in the community...really. More people would get ahead and benefit from this. Truly amazing.

Here is me and the security guard...Fletch...yes, that's his name!!! What a very nice, down to earth, man. He too lost one of his twins. Yes, we were there for a couple of hours just talking to these guys...It was so fun! If you look right behind us...the famous bus. God how I wish that bus would have been parked here in Parma for us, but good enough...and who knows...maybe next year...maybe.

(don't mind my hair, I had to wear it up...bad hair day..tee hee)As we were driving down the street...away from the site, the pieces and parts of the new house is waiting in a parking lot to be used when they start the build...tonight and tomorrow.Oh...on another note...funny thing is...my dad delivered mail for 35 years in this neighborhood...How coincidental is THAT?!

I just want to thank the whole Extreme Makeover Home Edition show, producers and security for letting us at least be part of the excitement...if you cant beat them...join them!

We have to go back tomorrow, so I'll try to get more pics and updates!

Oh and on a side note...I'd like to thank whoever it was that broke into my husbands work truck last night at 3 am... nothing was taken...we think...and luckily the police were in the area...but still!!!

Blog: 'Extreme Makeover: Home Edition' rebuilds home for Maple Heights family

Congratulations to the selected family for the Cleveland Build
To a well deserved family...congrats from the Tomecko family to yours!
Blog: 'Extreme Makeover: Home Edition' rebuilds home for Maple Heights family

This and that on what has been going on...

(our backyard in the fall...so beautiful)

Well as you probably already heard...we didn't get the makeover. Slightly bummed, but we are fine...you cant get us down when we have already been at our lowest...right? LOL Instead, we are going to be helping with the build! YAY! I am so happy for the family that got it. Wonderful story of encouragement and life with disability. Now, I will say, that even though they probably will never be back in N.E. Ohio, we will not give up hope that they will pick us one of these years. I mean, we've got a 3 year plan in the works...so, these producers better get their act together and decide to come back here soon! LMBO!

Anyhow, I have to tell you that our life has been hectic, debilitating, loud and just plain....well...we just have this grey cloud hanging over this dumb house of ours. I swear a curse has been placed on us and we are just living the cursed life...more so than most. Buuuut, I also feel very blessed in the way that Tony and I have a great relationship and love and respect each other very much. We have great kids...who, by the way, has all been doing really well in school this year so far, and are really good kids that care about people and life. Yeah...our house sucks...to say it straightforward. Its got rotting wood everywhere, leaks, broken this and broken that...but we have made it a home...yeah...an uncomfortable and uncozy one, but still a home for our kids. We have survived...we've made it this far with just about every hurdle imaginable. We are just in a rut that is lasting a little longer than normal...lol. We will survive. Its like being one number off from winning the lottery for us...but we will survive. We will hope that there is more and better things for us right around the corner...there has to be...there has to be. At least we will be volunteering with the build and supplies...I am looking forwards to that. Its gonna be so much fun to help!!!

OK...enough of this whole house thing...moving onto other subjects...

Tony has been working loooong hours these last few weeks...I mean...looooong! So its been just the kids and I...uh huh...yup...can you say crazy! I have 5 kids...needing help with homework at the same time, trying to make dinner, clean the house, live out of a Styrofoam refrigerator and unable to wash clothes because my dryer decided to start to burn my clothing. Then we have Gina starting to climb onto my kitchen counter to get into the cupboards above, Kenny throwing his "fits" that he started up again which has included the head banging, screaming for hours at a time and his new thing...pulling his hair. and worrying about one thing or another!

...haha! I think I am still sane...I think.

So on that note, take it from one who has more on her plate then most...If we can get through what we've been through and continue to go through...anyone can get through life. Just don't look toward what tomorrow may bring. Don't dwell on what coulda, shoulda, woulda been...just take life day by day. Its all anyone can do.

Peace out everyone. Thank you all for your prayers for our family...please keep them coming, we need this curse lifted off of us...and very soon!

For all of you that asked about the poem that I posted a few days ago...YES, I WROTE IT. Words just come to me and I write how I feel...see, its my easy, free therapy!

Music and Kenny

Kenny listening to Andy Gibb on YouTube. I turn it all the way up and he just sits with the headphones on his ears. He LOVES it!

Tomorrow is his audiology appointment...good because I think he broke his aids...UGH!

I visited you today...

I visit you today...

it was a quiet visit

I was the only one talking.

I needed you to hear me.

There was a lot to tell you, to get off my chest.
I told you that I was mad at you for leaving me.
I told you I wish you were here.
I told you that I missed you.


I was praying that you were happy,
That you were in a better place.
just not gone forever,
but where we'd meet again.


The seasons are changing again...
the leaves are starting to fall,
the nights are getting cooler.
But you already know that.


I told you about the family...
how we struggle day to day with things,
but try to look at the good in everything...
but you already know that too.


As each day passes by
some may not understand
The empty feeling inside
worse than anything that could be felt.


The feeling never completely leaves
especially when special days arrive
special days like, the seven days of the week
or the seasons as they change.


I miss holding you
I missed out on seeing who you'd be
I missed you being part of our life,
I missed what little time we had, you and me


I talked about the disappointments that have happened
Talked about the milestones that were reached.
talked about the dreams of the future...
oh how I wish you were in them.


I changed that day that you left
I know I couldn't stop you.
It was the hardest thing to do
But I know you already know that.


These visits are not long enough
as I clean your stone and decorate
I look around at all the others
and think I'm not the only one.


Not the only one to cry a good cry,
Not the only one to miss out.
but I still couldn't hold you
still couldn't touch you...


but you already knew that too.

~written and dedicated to Nick, with love my me~

Sarcastic Saturday

I feel like making this post a very sarcastic one...its just the way today has been going. I woke up with a horrible sinus migraine and an ear infection that is just about the best you can get (see, sarcastic). The kids have been perfect angels, no fighting, helping me with keeping the house clean, just being very good (yep, again...sarcasm is dripping from this post). You'd think with all the religious medals I have hanging from my key ring, that I should be protected from all forms of evil and non good...beep...wrong. I still love them and wont part with any of them. Today it really hit me that after everything that we've been through, we weren't going to be getting the makeover.

I never felt that we were "owed" it...but I just thought with all that has gone on, that maybe some good would come out of it.

We haven't lost anything by not getting the makeover...because who knows...there is always next year...so I will count my blessings and be thankful for the roof over our heads, food on our table and the asbestos, rotting wood, insect infestation, flooding, mold, and lack of space...that surrounds us daily. I actually wouldn't have much to write about if it wasn't for this house.

On brighter news of the day, the headache and ear ache still have not subsided which has brought on a feeling of nausea and off balances (if thats a word) that has lasted all day and into the nighttime.

I decided to finally make Sydnie's birthday dinner of City Chicken, mashed potatoes and corn for dinner...I think I made it juuuust right...the corn...was cooked to a nice dark brown color which had a scent of burnt skin to it...

this is the pan sitting in the sink afterwards

The city chicken quickly followed suit, with a leathery...er..uh...rock texture that tasted like ashtray...
The only thing that was worth eating was the boxed mashed potatoes! Oh yeah...my kind of dinner! *yep, you guessed it...sarcasm again.

Before dinner, I had to take the girls to their football game so they could cheer. All the while, I waited in the car with 2 very talkative toddlers *their talking was that of screams by the halftime cheer*
Syd and Kay were sugared up on candy from the concession stand not wanting to use the port 0 potty when they needed too...and now I know why I stayed home with the other kids last year while Tony just took them.

On another note...our new refrigerator is working out just beautifully! And the price? Just pennies to what larger, upscale ones with ice machines cost...and everything is right at our fingertips! (please...no calling child services on us because of this...no one got hurt during the picture taking and everyone has a bed to sleep in)...yep...you guessed correct again...sarcasm..gotta love it!


So their you have it...my sarcastic Saturday...

oh...and I forgot one thing... yes...I did call my son Kenny....Nick. WHICH SUCKED!
So as you see, not everyday is all smiles, blessings and positive thinking/doing...some days life bites ya in the butt and reality strikes. I am just having one of those days...Tony took Tony camping with the boy scouts, so I got to deal with all of this by myself today...and tonight with Kenny and his feeds...not going good at all.

I am allowed to have good days and bad. Mine just was bad all around. I am sure tomorrow will be better, but for now, at least it made for an interesting post :)

Have a good night everyone...and remember...


Life is full of challenges...but these challenges are only given to you because God knows your faith is strong enough to get through them!


and one more...just because I need the encouragement...


Don't be known for your "things" as things can and will break. But be known for your soul, for that will be with you forever.

Good night everyone, and God bless.

Extreme rally for a family in need.

I dont usually post this late at night, but I just had to write about the most amazing experience that my family and I had this evening at the Extreme Makeover Home Edition pep rally here in Cleveland. It started with us bringing non perishable food items to the Wolstein Center at Cleveland State University. We brought 2 big bags of tons of stuff for the Cleveland food bank. Then we go in and they have tables set up with t-shirts, bandannas, wrist bands and hats...all proceeds going to the family that gets the build. Of course Tony and I got one each...Morgan and Taylor were wearing them the whole evening. We also got 3 wristbands for Tony, Sydnie and Kayleigh.
Kenny got to meet some of the Cleveland Browns players...he was actually playing with them...lol. There were cheerleaders, bands...they went all out for this pep rally. Then it got down to the nitty gritty. The builders introduced themselves...I have such a new respect for these people...WOW...they are donating their time and supplies to build a beautiful house for some very special family who probably went through a great tragedy or are struggling because of one. I honestly felt that even though we were nominated...we probably didn't get picked for one reason or another...but that is soooo OK. I really mean it. I really want to help with this build in some way...painting a wall, drawing or painting a picture, maybe even just give money...I really want to help in some way. When they were showing the videos and talking about the build...Taylor and I were sitting next to each other and we both looked at each other and...yes...we were both crying!!! HAHA! I know, lame...but it was THAT emotional. We really felt that deeply about this whole thing. There is so much that goes on behind the scenes for a build to take place...there are not other words than...amazing! Everyone in the community should help...its such a great feeling to be part of such a great thing...the gift of happiness. To make a family that has been through so much...have so little to worry about. I wish I were a millionaire, because honestly...I'd end up giving so much away.
You know, right before we went to this rally, I had Kenny at his Comprehensive care appt. where we are concerned that Kenny, even though he has this feeding tube, is not gaining weight. he is just maintaining. At that appointment. I was just looking at Kenny and the way he was acting....his typical self. opening and shutting the drawers and door to the room, yelling like he always does...not in a mean way, but the only way he knows how to communicate. He was smiling and just being cute. I asked the doctor if he sees this a lot. The way he acts. What I really wanted to ask was...is my child...um...retarded(not being politically correct here, sorry)? I know that sounds cruel...but it has run through Tony's and my head. I mean...really. I am being honest. We haven't gotten a true diagnosis...almost like the elephant in the middle of the living room thing...but is it that he is mentally disabled or is it this being a "micro preemie" thing? I see other moms of micros on their blogs writing and to me, their kids are almost normal. I mean...there are some with CP, but that is not what I was getting at. I know Kenny has some form of CP...his walk is really off and his one arm curls under when he walks...he's got tight muscles and weak muscles as well. I am talking about developmentally. He is waaay behind in this area, I see it so much because of Gina...and other kids that are Kenny's age. I want my son to be normal. I dont want him to have to deal with this the rest of his life. He's had to deal with so much in these last 3.5 years...its not fair to him. Anyhow...the doctor never gave me an answer. Do I really want that answer? ah...who knows. I know Kenny and as long as it is not bothering him...I will try my best to not let it bother me (in front of him any how), but it will always break my heart.
He is going to have to be hospitalized again if he continues to not gain weight though. The doctor wants to run several tests to rule things out as to why he's not gaining. Yes...another thing to worry about. Its almost too much after this week we've had...
So that is about all.
We had such fun at the rally...it took my mind off of his doctor appt.

So please...all of you that feel that life is getting the best of you (kinda like me)...help someone. Do something nice for a neighbor or something...or maybe even a stranger. It makes you feel so much better inside. What a beautiful thing EMHE and the builders...oh...and all the sponsors and people that donate...do for a family...just beautiful...Everyone should be so helpful and generous to strangers all the time, because honestly, no one really knows what has gone on in someone's life to make them what they are. And no one should judge!

Thankful Thursday

Hmmmm....thankful. Even with all that has been going wrong...I can still be thankful for so much.

1) I am thankful for styrofoam coolers...we got a huge one during the summer ($5 for one that is 3 ft all around...we got it because it was so huge, we knew we'd use it for something) and it is working perfectly as a makeshift fridge until we get new(er) one.

2) I am thankful for my husbands and my decision, 2 years ago to cut up all of our credit card...especially now when we need something...we are saving up with cash...I feel very free from debt! WOO HOO!

3)I am thankful for my coffee pot that a good friend of mine got me for Christmas...LOVE IT...thanks again Tammy ;)

4) I am thankful for good mornings when all my kids wake up, get dressed, eat breakfast...etc...without fighting...yes, it really happened this morning!

5)I am thankful for a very hard working husband who hasn't stopped working!! He has been working day and well into the night (3-ish) to get his jobs done. Even in a shop (garage) that is moldy, floods and has mice...true dedication...from a great guy!

6) I am thankful for Magic Erasers...uh huh...Gina got hold of a blue marker...to my living room wall. I got most of it off with the magic eraser, but I think touch up paint is needed...I still love those things though.

I have many more things to be thankful for, but these are just a few random, off the top of my head.

Gonna leave you with the lyrics to one of my favorite songs...Words

Smile and everlasting smile

A smile can bring you near to me

Don't ever let me find you down

'cause that would bring a tear to me

This world has lost its glory

Let's start a brand new story now, my love

Right now, they'll be no other time

And I can show you how, my love

Talk in everlasting words

And dedicate them all to me

And I will give you all my life

I'm here if you should call to me

You think that I dont even mean

A single word I say

Its only words and words are all I have

To take your heart away

You think that I dont even mean

A single word I say

Its only words and words are all I have

To take my heart away

Its only words, and words are all I have

To take your heart away

Its only words, and words are all I have

To take your heart away.

Have a good day everyone. Smile at a stranger and do something nice for someone.

Happy Birthday to our Sydnie!

Happy 7th Birthday to Sydnie

Today is my forth child's birthday...little Miss Sydnie. What a little miracle she is. When she was born, she had a true knot in her cord so she could have easily have passed away if she would have stayed inside of me any longer than the 34 weeks. The doctor was amazed when he saw it....come to think of it, Kayleigh also had a true knot, luckily she was a c-section baby. Anyhow, Sydnie has been such a fun little girl to have part of our family. With her huge eyes and her little duck lips. She is good natured and doesn't care that we have a million nicknames for her...including...Chicken Little, City Chicken (which is her request for dinner tonight), Beverly D'Angelo(because she totally looks like her) and Monkey.
So tonight we will have City chicken for dinner and a teeny tiny ice cream cake (her request) for her birthday dinner. I also have to take donuts to her class today. lol.
A little story that I'd love to share on how my morning had gone so far...
I've been battling a bad cold, you know, sore throat,cough, runny nose and my ears infected, but I have been holding off going the doctor. I just have way too much going on and so does Tony. Well, I woke up this morning, with my right ear hearing everything like it is up to a fan. Double sounds of high pitched and low pitched sounds...so I really think its that time to get to a doctor. So as I am ironing clothes and getting the kids ready for school, Kay asks me for a glass of milk. I get it out and pour it...ITS LUMPY!!! I looked on the expiration date...9/28...ok..so that's not the problem. I'm thinking to myself, boy the fridge is kinda...um...room temperature with a slight chill to it...OMG!!! My refrigerator is dying. Its on the highest setting possible and it is not cold...yet my freezer (which is on the bottom) has "snow" all over everything. Now, grant it, it is 13 years old, so I think that we will be saying goodbye to our beloved fridge. Can you say...time to look on Craigslist for a used one? LOL
I may be LOL-ing on my blog, but deep down inside I am saying "what the heck are we going to do?" I have to throw everything out. It sucks. We have a whole refrigerator full of stuff...all of which are bad now. When it rains it pours, I guess. This bad luck has got to change around...

Thursday is the pep rally for the EMHE build that is coming to the Cleveland area. We are planning on going to it because how many times do you get an opportunity to attend an EMHE pep rally! It should be lots of fun. And you know me, I'll be taking tons of pictures for all to see! My hopes have been quickly diminishing for them to pick us because we have not heard ANYTHING...not one word about anything. No phone call saying that we are one of the 5 finalist...nothing. So its pretty safe to say that we are out of the running for it. I cant deny being a bit...ok...extremely disappointed, especially after my fridge died and my dining room patio door is leaking from the rain this morning...but such is life. I am very happy for the family that will be receiving such a gift from heaven...and would love to help out, even if its to bring snacks or red bull to the site. We even signed up ARTPro Graphics (my husbands sign company) to help with decals and signs...but again...they haven't called him. *sigh* Ok...enough of wallowing in self pitty...LOL...Kenny ate 12 goldfish crackers at school yesterday! WOOT WOOT! I am so happy for my little guy for trying! Now, if anyone can tell me how to keep Kenny from getting wrapped up in his feeding tube at night...I'd love to know the secret to that!
I guess that is all I have to say for today...
May God bless you all with a very productive day.

EMHE coming to Ohio!!!

Please keep your fingers crossed. I know its a long shot, but it would be sush a blessing!

EXTREME MAKEOVER HOME EDITION COMING TO THE CLEVELAND, OHIO AREA!!!
(Click on the link above to get all the details)


*please God...but if not us, then at least I know that someone from the Cleveland area is going to get a HUGE blessing and some help!!! YAY!

Thank you EMHE for picking the Cleveland area to help a family!

Smile...

Well here we are again...the school year has started and the sniffles have begun. Beginning of the week, the older kids were complaining about sore throats and all had runny noses. If that isn't bad enough, Kenny and Gina both got whatever the older kids had. At this point, Gina is feeling much better, but Kenny is just getting worse and worse. He was up all night coughing which means it went straight to his lungs. Having a child who has BPD (or as they call it when they get older, Chronic Lung Disease) and catches a cold is not a good thing. I was just waiting for the coughing and throwing up to begin and it has started. Last evening at dinner, he was getting a tube feeding in his high chair along with us putting pieces of our dinner on his tray (which he was actually putting in his mouth) only to come back up. I had to sit him in the sink to clean him up, that's how bad it was. On a good note (if there is one), because he is pretty much on a liquid diet, it wasn't completely disgusting...I know...TMI...sorry. This post is going to be full of TMI LOL... So, anyways we got him cleaned up, the kids all got their baths/showers out of the way as well because it is picture day today at school. Finding outfits (that we had here at home) for these kids is like pulling teeth. I almost sent them in their school uniforms because it was THAT stressful. But we managed to pull off some very cute outfits. Next came the hair. All the girls wanted braided waves...you know, you braid the hair while wet, then in the morning, take the braids out and there you have the braided wave look. OK...now, I told these kids that they should be wearing their hair like they wear it everyday, which looks great...but they all insisted on this look, so...with a sick little boy coughing, puking and wiping his runny nose on everything, I started with the braids. I braided and braided...my fingers were about to fall off! Finally, after all is said and done, my girls were the braided queens and I was ready for a large glass of wine. HAHA!

This morning, was just as bad. After being up all night I woke up to my favorite friends that have shared our home since March...yep...the ants. This time they were in my kitchen and dining room. So at 5:00 I am sitting here killing these stupid nuisances which have aggravated me for the very last time. I then went on to ironing the "picture day" clothes that the kids laid out. On to waking them up. I should have a bull horn for this but instead I flick their lights on and keep up with the wake up call...Get up everyone, time for school...over and over again, sounding oh so much like a scratched record...but hey, it works. As the morning goes on, I have a 7th grader who couldn't find his homework, so I was searching high and low for this stupid notebook everywhere...only to see him, 10 minutes later, sitting at the dining room table "redoing" it. No comment on if he actually did it in the first place...I just dont want to talk about it. LOL. Then, I hear Kayleigh calling for me from the bathroom. I go up there because I already know what she wanted...to get wiped. she still doesn't like to wipe her butt when she goes poop...see....to much TMI lol...So as she is bent forward to get wiped, I see her new silver necklace that Tony (hubby) got her...laying on the bottom of the toilet bowl, sharing very tight quarters with a large poop. I screamed (not in anger, but in shock) seeing this...How the H#ll was I going to get this out? Should I just flush it with the other contents of the toilet bowl? It was a brand new necklace that wasn't cheap (it wasn't expensive but certainly not cheap either). At that moment, I thanked God for Paradime Medical Services for the supplies they bring me monthly. In those supplies were medical gloves that I never use...until now! The necklace was saved and the morning was good...or so I thought...
The time came for me to unravel the braids on 4 girls...Ok...I have to say, they didn't look horrible...but they and myself had no idea on how to style the hair once we got the braids out. I wanted to put Kayleigh's hair up half way but she insisted on wearing it down...part in the back and all...ummmm...I tried, but she threw a temper tantrum so I figured that the photographer would help with the hair. I just couldn't get upset over this (which I was). So, I took a deep breath, fixed each girls hair the best way for their personalities (except Kayleigh) and honestly, they looked cute...yes, including Kayleigh. Thank God, God threw in an oldest son who likes his hair short!

So as the kids are at school, our Kenny is home again today...so that makes 3 days missed at school...and probably will be home tomorrow too. If his coughing and not feeling good continues, we are gonna be heading back to the doctors office. I just wish that his doctors would have given us a pulse ox machine so I wouldn't be so paranoid about his oxygen saturation levels when he gets sick. So that is how yesterday was, and how today started off...and you know what...I made it through...laughing at everything (except for Kenny being so sick). Makes me think, what will the rest of the day hold in store for me...hmmmm....

An Everlasting love...

This week, my head was spinning from everything that had gone on within these last three and a half years...I vowed that I would not look back at it all, but sometimes it just hits me...today is one of them. I am missing my baby . In a perfect world, I should be giving my twins hugs and kisses, dressing them up alike for certain things, and being a mommy to two 3.5 year old little boys who are healthy, walking and talking up a storm and getting into everything. But this isn't a perfect world. My Nick is in Heaven enjoying all the glory being with the Lord, my brother John, Grandparents and my three babies that were miscarried. THEY have the perfect world...we are still here for a reason. Still learning and doing what our purpose is. Instead, I have a heavy heart that will always have a piece missing. I have a little boy who is the love of my life but he cant tell me that he loves me, can only tell me by a huge smile, a hug, or the intense loving look in his beautiful brown eyes when he looks at me. I have a child who is in the hospital at least once a month for one thing or another. A child who has and will continue to have to struggle with so much...breathing, hearing, talking, walking, learning, being able to communicate...how frustrating that must be to not be able to express what you want, feel, say or do. When a doctor tells a pregnant mom to be, "lets just make it one more week" or, "every week inside you makes a big difference", they know what they are saying. A 24 weeker is so much more viable than a 23 weeker...and so on and so forth...If I could have just kept them in for another week or two...If only. To think, I was hoping and praying that we'd come out of this mess unscathed. We really did. We thought, "well, he's home from the NICU, he is healthy and there is nothing wrong." Then the floppy muscle tone mixed with the tight muscles started...the developmental delays, the RSV, pneumonia, the hearing loss diagnosis, Autism, the eating problems, seizures and now his eyes...what more? Uhhh...no...I don't want to know the answer to that. LOL. I guess that is the question on everyone's minds...including the doctors. See, Kenny is more like an experiment in the making...sort of. Even doctors are not quite sure of all the things that can and will happen to a 23 weeker. We all are pretty much waiting for something else...praying for nothing to happen but ready when it does.

After all this...all this nightmare that Tony and I (and the kids) have been through, God has given us something very special...He has given us strength, faith, and love. Strength to face ANY problem. You know, after burying Nick and having to take a second plot right next to him as a "just in case" for Kenny, because it was THAT serious of a situation when they were born. Every day we go there to visit Nick we are reminded how much of a miracle Kenny is...and how much of a blessing that the 2 days of having Nick with us, was. It reminds us how close we came to losing Kenny...many times. God has big plans for him, I just know it.

Our trials and tribulations have brought Tony and I closer than ever (to some peoples disappointment..LOL) We have learned to talk, cry, express ourselves to each other. We don't take anything for granted anymore. God has blessed us with 8 beautiful kids and the opportunity of being pregnant three additional times, but were cut short by miscarriages. Each one, each loss...each trial and triumph, has showed us just how fragile life is. How God is in charge and we are here to just do the best we can with what is given to us. It is up to us to make the most of it. And that is what we are doing. We sometimes just hold one another and just thank God that we have each other. We really are soul mates with an everlasting love.

We, as a family, are stronger and better from all this. We have learned to not take cr@p from people that wants to bring us down. We have learned to not point fingers at people when we don't know the full details of the situation. We have come to respect ALL walks of life and how people act. We have become more devoted and giving from all of this. My kids are loving, caring kids who will go out of their way to help any kid/person that no one talks to or picks on, or has a physical or developmental handicap. It is so beautiful to see my kids interacting with kids that many kids would be scared to even try to talk to. We have learned that FAMILY and friends are extremely important. We have learned that life is too short to bother ourselves with negativity, because we have to stay positive with all that has gone on. Sure, I have my days of just wanting to lay down in bed and just wish this nightmare away and wonder why us, why Kenny, why put our kids through all of this...losing a brother and having a brother that has so much going against him...but then I realize that there are so many people out there that are going through the same things (and worse) than what we are dealing with. My kids will turn out just fine. We will just keep showing them the love and support that we have been giving them since the day they were each born. It is what it is and God wants us to make the most of what is given to us. WE were chosen to experience all that we have gone through and will go through.

So I will go on and continue to take it day by day...to try not to look back at what had happened...but still try to not forget Nick. I want him to live on in my thoughts and mind, like any mom who has lost a child...no matter what age that child was. I want to not have to worry about leaving Kenny with a babysitter. I want to not have to worry about if kids will make fun of him when he gets older. I want to not have to worry if this next cold he gets that he will pass away. I want to just enjoy what God has blessed me with. I will do my best to do that...it will be hard, but not impossible.

Diane Casale~CasaleSellsHuntsville

Diane Casale~CasaleSellsHuntsville


This is from my twin sisters blog. I have no words today, she pretty much sums it up in hers...just God Bless America.

Fortunate Friday...g-tube and all

Yesterday was one of those days...those kind of days that you think everything is going a little too perfect. Yeah...I let my guard down. I should have realized that I can never get too relaxed, too "OK" with everything. I actually was writing a "Thankful Thursday" post last evening (in between doing this and that for the kids). I was writing about how I am thankful for how good the kids were being yesterday. I mean...they were actually getting along...not one fight! It was very, very nice. I went on to write how I was thankful for how good Kenny did on his third day of school. After getting the 5 other kids to school...without any problems...and we even got there early, Gina and I drove Kenny to school. We parked and his teacher opened the van door. I got him out of his car seat, put his backpack on...then I waited for him to start with the crying thing that he usually does...NOPE! He walked over to the open van door and put his arms up for his teacher to hold him...and that was it! Not a tear shed (from him anyways)! The feeling I was experiencing was such a great, joy. I mean, my little boy is able to break away from me now without crying. He gets to do fun stuff. He is learning and getting therapies. I am so grateful for this.


Fast forward to picking the kids up from school...They all got home and did their homework. Sydnie and Kayleigh, Taylor and Morgan...and even Tony. Kenny was actually drinking from a sippy cup...he grabbed one of the girls cup and just was walking around drinking it...AND...it was filled with juice which is another big step.
So, as you see...it was a very nice day. A day to be very thankful for...until around 8:00 pm. that is. Dun dun dun...

Why does everything have to happen when my husband has to go to, or is at a job? He was at the school putting up names on the banner for the PTU when my son, Tony calls him to get home...why you ask? HA...Kenny's G-tube came out! Talk about a mom trying to say calm but slowly losing it...yep...that would be me! Backtracking just a few...

Kenny was very sitting in his highchair and I figured...ok...well, its almost 8:00, so I am just going to start his night time continuous feed while he is awake. Got him all hooked up and it was going just great when he ended up falling asleep in his highchair. I unhooked the long tube that is connected to the bag but left the smaller tube that locks and disconnects one piece to the other...I figured I'm just going to carry him up and re-hook him up to the pump. Tony (little) was carrying the pole with the pump and bag attached to it, upstairs., when I pulled out the tray of the highchair and then proceeded to lift Kenny out...and THAT'S when I felt a lot of fluid pouring out onto my hand and all over him! He started screaming, I looked down and his tube was laying there...balloon inflated and all! I thought...ok, ok...I can do this. They told me when he first got the tube in that if it came out, to put the tube back in (balloon deflated) and get him to the ER within 2 hours so the hole doesn't close up. I didn't know which way to turn. Kenny was crying, I was standing there holding this tube that was once inside his stomach and I couldn't for the life of me figure out how to deflate that stupid saline filled balloon to put the tube back in! Talk about panic setting in! UGH! Then...I took one look at his g-tube site on his stomach and it was bleeding! UGH!!!! I was just going to drive him but I wasn't sure it it was safe...I mean, he had a hole in his stomach...and not to mention I was just too upset. Tony came home at this time (thanks to the kids calling him to tell him) and we decided to just call 911 because they probably would know what to do. Talk about feeling like a newbie to all of this feeding tube issues...it sucks! I mean...its a great thing...I have to say that. I can see the difference in Kenny since he's had it...but between the infections and this popping out... I am becoming a very strong stomached person. LOL. Our days are definitely not boring that's for sure!

So we (Kenny and I) went to the ER again...with our two favorite paramedics, who happen to be working every single time Kenny needed the ambulance. We were there for about 3 hours...they put a new one in...yes, Kenny screamed, but its in and all is good.

This morning he woke up with the other kids and got on the school bus for the first time this school year...again...without tears...from him anyhow.


So my Thankful Thursday post is now a Fortunate Friday post.

I am so fortunate to have a great support system of family and friends...those friends that have BTDT (been there, done that) with issues that we are dealing with with Kenny have been a God send to me. I sometimes feel like Tony and I are very alone with the struggles of having a micro preemie who now has special needs...not just developmental, but medically. It can take a tole on a person...with all that it entails. Tony and I have learned to go with the punches and not let our guard down (except for last night), and to hold every moment very near and dear to us because, honestly...we just don't know what tomorrow will bring. We have been knocked down time and time again with one thing or another...we thought that the NICU stay was the worst that could/would happen...boy were we wrong. Not saying that having the g-tube pop out is a horrible thing...It is actually one of the easier things that we have faced. It just so much that this little guy...our family...has gone through in a short 3 years...sometimes its just overwhelming to think of everything we have been through (as a family) and yet, we are still here and still going strong (even though we are very exhausted from it all and could use a break...this testing us is getting old...tee hee).
I am so fortunate to have everything that I have no matter how hard it has been.
Now I must end this post because I have cleaning to do and setting up for a Camp Rock 2 viewing party that I promised the kids we'd have. They have invited some friends from their classes over so...this should be a fun time. You know me...I love throwing parties!

Wordless Wednesday

I had to add words to these Wordless Wednesday pictures...

must.expain.these.

LOL

I was in the kitchen making dinner (a roast),when all of a sudden Gina comes running in and in the words she knows...Mama...Kenny...baba...c'mon c'mon...see?! She totally busted Kenny for opening up her bottle and spilling it all over the living room.

Needless to say...I had a date with the mop and Murphy's Oil Soap today...UGH. ...and this...

When my kids got home from school they were playing with the babies who missed them dearly. This is my kids version of playtime. HAHAHAAnd finally this...
We were wondering where all our forks (and a few spoons) went too... FOUND THEM!
For the past 3 days, I ended up getting out the plastic ware because I honestly thought Kenny either threw the silverware out or put them in the heater ducts.
I pulled open the pan lid drawer and Voila...there they all were!


So my "Wordless Wednesday" ended up with many words...so maybe this should have been called...
"Whimsically Wild Wednesday"!
Have a great evening everyone.