Whats with Keppra anyhow?

Keppra seems to have a terrible hold on Kenny. He has meltdowns every day! These meltdowns are just horrible. Nothing triggers it/nothing helps it. He doesn't want to be held, but doesn't want to be put down...the headbanging had gotten out of hand with these fits as well! I HATE what has been dealt to our little Kenny! He has lost the glimmer of love and innocents in his eyes...he looks tired, upset and just irritated by everything. Light seems to bother him more than ever. He is up all night long either drinking his bottle (goes through about 4, 4 0z bottles a night) or crying. I feel so bad for him. He doesn't sleep at night...which in turn, keeps Gina up because she sleeps in our room with us and Kenny. So Tony and I don't sleep at night. We are in a no win situation...if he doesnt take it, he will get seizures, but then, while on it, his meltdowns are heartbreaking! Oh yeah...this has turned into a nightmare!

See...you can kind of see the look in his eyes in this picture...

I also feel bad for my other kids because we are not able to spend time with them playing with them, doing things with them, because of Kenny. It's just a mess. Tony and I are exhausted because of everything going on. I am so afraid for Kenny and everything that is going on with him...the seizures, the lung disease, the hearing loss, the developmental delays....etc...I just want things to be good for a little boy that has been through so much in his 2 1/2 years...what will the future hold for him? I want it to be great. I want him to live to a ripe old age. I want him to have a very happy, successful, fulfilling, wonderful life...just like I want for all my kids...I want him to be normal!!!!

I want my other kids to not hate us and understand that we are not ignoring them...or not able to do things like a normal family can because of the circumstances. We want to go places with them. Do fun stuff with them. Have sleepovers with their friends. Spend quality time with them...but its just not that easy...it's almost impossible. Oh how I wish we could be a normal, happy, healthy family...this really stinks!

We do have one Christmas present that Tony and I have gotten...Kenny LOVES to walk.

He is still very unbalanced, but he is all over the house! Still crawls when he wants to get somewhere fast, but he is very proud of walking...oh...and he learned a new sign...the sign for "my turn"! Its AWESOME!

On another note...the house that we wanted...really really bad...the 2500 sq ft. foreclosure...the one that would have been perfect for our large family...the one that I saw us living in, growing old in...the one that we put our house on the market for....as life has it...there is a "sale pending" on it...and its not us that its pending for! Yeah..great. I have been searching and searching for a house that is that size, not too far away, and something we can get approved for...there is nothing out there for under $250,000 for a 4 bdrm, 2 bath, 2500 sq. ft home. I am sick...now our house is STILL on the market and there is nothing for us to move into! We need a miracle, and need it to happen this year. I just don't know what to say anymore. Its just not that great. Christmas was very low key...which was great...not what we wanted, but what we could afford. I know the kids were a little disappointed, but Santa couldn't go crazy this year. It's not about the gifts anyhow...we were together, as a family...and that's all that mattered!

So I am hoping and praying that good luck and a miracle could make its way to our family...its been a bad 3 years...its got to get better...right?

Here is a pic of our tree Christmas morning...before the kids woke up...The girls decide to color a picture of Santa and the reindeer for Santa...notice the Duck Tape! LOL!!!Merry Christmas to our angel Nick...We miss you!

It's a Wonderful Life (Classic)

Here for your Christmas Eve pleasure....a site to watch everything Christmas...from past Christmas movies, sitcom episodes, cartoons...everything!!!!

Enjoy everyone...and from our family to yours,

Merry Christmas!

God bless you all, and may your Christmas and the New Year bring prosperity, health and happiness to you all.

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

A few days before Christmas

A few days before Christmas and all through the house...
all the kids were going stir crazy, not quiet like a mouse.
the stocking were knocked down by the chimney without care...
in hopes that their mom wouldn't notice they were there.

The children were sleeping, snuggled up in OUR bed,
while visions of alone time danced in OUR heads.
Tony at work and three kids in our bed,
just started a night of sleeplessness is what I had said.

When in the crib there rose such a clatter...
I jumped from the bed to see what was the matter..
Just a step away, I got there in a flash
tore open my knee and left a big gash.

The moon shining in through the window at night
added to the turmoil that was my worst fright.
When what to my very sleepy eyes should appear
a coughing, crying Kenny with a breathing treatment so near

With Gina in one arm and Kenny in the other
I knew in a moment that this was a call for their mother (me).
No coffee to drink and the house oh so small...
all kids would be up in no time at all.

Now Morgan! Now, Gina! Now, Kayleigh and Sydnie!
Come on Tony, and Taylor, and Kenny, I plea!
Back to your own beds, on this very hectic night.
Calgon..take me away, take me away, take me from this plight!

And then in a twinkle I heard him come in
My wonderful husband with coffee (and gin) *not really...just had to rhyme "in". lol
As I turned around while crying out loud
my hubby held me tight, made my love for him proud.

Our life has been tough, every year it gets worse
sometime we think that we are under a curse.
The house we must sell in hopes to get by
We want more for our kids, to better we must try.

The cookies not baked, the cards are not out
the wrapping is not done, Oh darn! I must shout!
The music is playing some old classic tune,
seems like the loads of laundry will last until June!

As Christmastime comes, we reflect on the past.
Joy, love and peace with some good health that will last.
remembering those we've lost along the way
We miss and we love you is what we will say.

So even though life isn't so great
I give thanks to our God for giving us our eight!
I give thanks to God also, for family and friends...
I am glad that you're in our lives as this year ends!

Please know in our hearts that you all will always be
this life is about loving and caring you see.
the sickness, the bad luck, the financial strain
is just a short step to everlasting gain.

Even though our lives are busy with way too much strife
I want to be apart of everyone's life.
a true friend, a good wife, and great mommy too...
is what I will strive for, to reach...yes, to do.

From our family to yours, may Gods light shine so bright
Merry Christmas to all and to all a good night.

On our anniversary

I would like to take this time to wish my husband a very Happy Anniversary. The years have not been very kind to us, but we have withstood the test of time and fought back. Thank you for 14 years of marriage and 8 beautiful children. You are my rock...my pillow...and my best friend (even if you don't like squirrels). I admire your perseverance and faith. You are the love of my life and am so glad that God put you in my life.
I know that many of these years have been tough...emotionally, financially, physically...but this is just a test...we WILL get a nicer, bigger home...we WILL always have Nick in our lives...we WILL have a happy and healthy family...we WILL get everything we ever wanted (hopefully)...and WE WILL do it together, forever!
I love you, love you with my heart and soul (even though I am a brat sometimes) ;)
Forever yours,
Michele


I also want to wish my brother-in-law, Johnnie who is more of a brother to me than an in-law...a VERY Happy Birthday...Love ya tons!

Back To (thinking about) The Future

I'm sitting here this morning thinking, "wow...only 17 days left til Christmas!" I just cant believe that its almost here. I am usually so into it. This year, its kind of slipping by. I just don't have it in me this year. Maybe its because of trying to fix the house up to sell...we do have that "for sale" sign sitting in our front yard. Maybe its all the sickness that has plagued our house and kids for the past 3 months...I don't know. Just not into it. I should for the kids sake at least make cookies or something. The tree is up, stocking are hung, and the garland is laid out....but, *sigh* I'm just not feeling the spirit. It's got to get better. Right?

I am so paranoid about leaving Kenny along...even to go to the bathroom in fear that he will have another seizure. He hasn't had one since the night that the ambulance came, but I am so scared. We go Wednesday to the doctor, so you better believe that there are going to be questions after questions coming from me. Like, how can a little boy get so sick in just minutes? How did my little one get Sepsis when he was fine, or at least looked and acted fine minutes before he had a seizure...and what the heck is with the seizure? Why did it last about 20-30 minutes? Why didn't they see that he was having seizures when he was an infant? He had absolutely no brain bleeds when he was in the NICU...so why does my little boy have to have so many things wrong with him? Its NOT FAIR!!! My baby didn't do anything wrong in his little life to:

1)Lose his twin brother. The best gift I could have received from God is my twin. We went through life and did everything together. I never felt alone, ever. My Kenny will never know what that is like...I feel so sad for him.

2)End up with hearing loss. Without his hearing aids, he cant hear birds chirping, soft music playing, or even the sounds of wind hitting the trees or leaves...its not fair!

3)Have developmental delays where he cant talk, walk, or do things like others his age..he sits and bangs his head out of frustration..how can that be good?!

4)Have such bad lungs that he is on meds two times a day just to keep them open and strong...but usually ends up in the hospital 2 times a year or more.

5)Now he has Epilepsy. Meds twice a day and who knows when the next seizure will strike.

5)Cant eat solids and not able to gain weight. Doesn't God know, in order for his lungs and brain to develop correctly, he need to gain weight and fat? Without it, he will continue to not develop mentally and physically. And his lungs will continue to give him trouble throughout his life...they stop growing at a certain age...so when that age strikes, whatever his lungs are like at that time, they will always be like that. *sigh*.

Then I sit and think...Will he ever walk, talk or even have some sort of normal life. Did we do the right thing by keeping him alive all those months in the NICU? I know we did because of his beautiful smile he gives us, but I pray to God that we did what He wanted us to do. I want the best for him and for the rest of my kids. I want him to have girlfriends, get jobs, you know...have a normal life. What will life be like for him...or for the rest of our kids for that matter. Why is it that some families have an easy time at things...money, success, health and happiness, while others like ours, have it so tough? I have to say those 3 things...in that order because with money comes health...you can get better medical care, have the necessities of keeping a sick child healthier, etc... Also, with money you are more successful in your career...money makes money...you cant start and keep a business without first having money...(example...Tony wanting to better his business...cant get the better equipment without money).

It can be overwhelming at times...if I think about it.

~deep breath~

OK...now that I have aired out my sadness and frustrations I do have to be very thankful for many things (I have to do this or else I'll get very down on myself and life in general)...

1)My children. They are beautiful, loving and very polite...not at home...lol...just when they are around others...and that's OK!). Also my husband. He is amazing. A hard worker...a caring, loving man who would give the shirt off his back for anyone. Even though he doesn't like animals...I love him with all my heart and soul. He keeps me going. We have the same hopes, dreams and goals which is totally cool! And after being together 20 years...married for 14, 8 kids later...we still have that flame!!!

2)My family. My parents and in-laws, sisters and nieces and nephews...They have come through when we really needed them...physically needed them AND emotionally...there have been many times when Tony and I were at the worst of life...the whole NICU stay, Nicks death, several injuries from head gashes to slivers, with the kids...to hospital stays and financial hardships...to just being an ear to listen to me blabber on and on about this or that...that they have been there for us.

3)My friends. My old friends from years past to recent friends...I thank God for you all. Even though, more so than not, I've been MIA because of all the sh$$ that is going on here at the Tomecko house. I feel very blessed to have all of you in my life. At times I am not that great of a friend...I know that. I have been moody, down to the point where I don't want to call or talk to anyone. But you all have still stood by me and I love you all for that!

4)My love for animals. Yes, it could be a curse too...but I love taking care of animals...hence...Leo the squirrel.

5)And lastly, my creativity!

This pretty much sums things up today. Please keep our family in your prayers...we could really use them...for many reasons. Have a great day everyone.

Kenny the fighter

Kenny is home! Long story short, his fever broke on Friday thanks to 2 different antibiotics and Tamiflu. They tested him twice for all different strains of the flu and both times, came back negative. But for some reason, the Tamiflu helped break the fever. He had a spinal tap which came back negative so the blood infection didn't travel to his brain...thank God. He also had a CT scan which came back neg. So it was just the blood infection which caused the seizure to finally show itself. The hospital felt that he would recover better here at home with us...which is fine with me. I am very nervous though because now he is on even more meds than before...He is now taking Pulmicort, Albuterol, Pepsid, Singular, Tamiflu (for 4 more days), Keppra for his seizures, and Tylenol...and they also gave us this med that if Kenny goes into a seizure that we give it to him to stop it...
Honestly, our heads are spinning with everything that has happened this past week. The doctor was explaining to us that when they did the EEG on Kenny that it showed seizure activity on the right side of his brain...you know, now I wonder if that has anything to do with his left side being weaker than the right? I have a lot of questions for the neurologist *sigh* because of all of this.
So now, we are afraid all over again. Like stepping on eggshells...we don't want him to have another seizure, but know it will probably happen..and if it does, where...when.

Before all of this, we were concerned with his developmental delays, hearing loss, lungs, muscle issues, feeding problems and his eyes....NOW we have epilepsy added to the list. My heart just breaks for him. Tony and I are to the breaking point with everything. First, we decide we are going to move, to make life better for us and our kids...kind of a new, fresh start...we put our house on the market and find out that the bank wont accept our low offer to the house that we need and really want...we cant offer more because we were not approved for more...so now, our house is on the market and we have no where to move when the time comes...we are so close, yet so far from the house...and honestly, I am exhausted....emotionally, mentally and physically. I cant beg/fight anymore with the mortgage lenders to help us out...just a little more. I cant go to overdrive in trying to fix up this house...almost done, but not...I just cant. I have to step back and whatever is going to happen, let it. Almost seems like this house is possessed and doesn't want us to leave....seriously!!!! First the plumbing, then the hot water tank, then...oh...my oven caught fire on Thanksgiving but it was under control...we had a good laugh about that. LOL...
Then Gina falls and hits her head on Monday and then Tuesday, Kenny goes into a seizure with a bad blood infection on top of that...WTH?!?!?!

Thank you all for your prayers and positive thoughts....PLEASE keep them coming for Kenny and the rest of the kids and for Tony and I...that we get through everything...it has been a very long and hard road that we have been on for the past 3 years...and it doesn't look like its getting any better.

Small update

Happy Thanksgiving everyone. Update on Kenny...still has high fever trying to be controlled by Motrin...Definitely has a staph infection in his blood. He is also experiencing small seizure activity on the EEG so he is now on anti seizure meds. Needs tons of prayers. He is not out of the woods. They need to somehow get the fever under control.

Prayers needed for Kenny!!!!

Yesterday evening at around 5, my oldest son came running down the basement yelling that Kenny was acting weird and staring at nothing...I ran up the steps to see Kenny laying in the kitchen staring...I picked him up, called his name, breathed in his face, screamed and tried to get some kind of response out of him....nothing. We called 911, my husband came home to me holding Kenny and talking to the dispatcher...well screaming and crying to the dispatcher. He grabbed Kenny to see if he could snap him out of what ever was happening to him and then his arms and legs started to shake. Still nothing, no response. The ambulance showed up and my husband ran Kenny out to them. They worked on him in the ambulance for awhile...about 10 minutes...maybe more..not too sure. He finally started to snapped out of it when we got to the ER. There, he had a fever of 104.5...now, mind you, he was fine up until then...not a sniffle, cough, sneeze, nothing...not even a fever!

They have been able to control his fever with Motrin/Tylenol and he has not has anymore seizures since...but as of tonight, the blood work came back that he doesn't have the flu or H1N1...he has some sort of staph infection. They have done an EEG, CT scan and will be doing a spinal tap later on, to see if the infection traveled to his brain. Please say tons of prayers for him. We have been having a very tough last couple of days...We cant lose our miracle baby.

Here is a picture of him from today when they were giving him his EEG...

Please please pray for Kenny.

May God bless you all on this Thanksgiving.

FOR SALE....

That is what the sign reads in the front yard. The last time I saw a sight like that was when Tony and I bought it....15 years ago....
What an emotional roller coaster of a week. We got pre-approved for a mortgage, on the contingency of us selling our house...YAY right? Well, first off, it wasn't a huge amount. Tony and I were so excited that we were gonna put our house on the market, put a bid on the house we fell in love with. The one that needed a lot of TLC, the one that would be the perfect size for our family...only to find the bank putting a new roof on it! Well there goes the idea of low-bidding it because of the roof. There goes the 203k renovation program that we had along with our pre-approval. Now the bank is definitely not going to look at our low offer...there goes the chance of fixing up "THE" ultimate family home for us. It would have been big enough with over 2500 sq. ft., not including the basement, where there would have been more than enough room for Tony to set up his sign shop. It would have still been close enough for us to send the kids to their school and our church. I have written letters to the bank telling asking them to give a family that has struggled, a chance at happiness. I plan on giving it to them when we TRY to make the offer on Monday. At that point, our house now, will have been on the market for a few days and it will give them the idea that we mean business on selling our house FOR that one.
Oh...as I mentioned...yes, our house has a for sale sign in front of it. It's not finished, by all means, but we HAD to put it on in order to show the bank that owns the other house that we really, really want the other house.
I feel sick to my stomach about this whole thing. We are working our butts off fixing things and fixing up the house quickly...with money we really don't have (hello...Christmas is a month away), in hopes of this one house. We don't really even have a fighting chance...see, we got pre approved for $145,000-ish, the bank bought it for $150,000 but have it on the market for $195,000....UGH...its a big mess...if we just had $160,000 or more to offer...As it is, we are not making anything on the sale of our house. With a mortgage, second mortgage and line of credit (from all the hospital bills), we will be breaking even on our house...
I am just scared that if the house that we want falls through, and our house sells, WHAT THEN? Where will we go? We are leaving our comfort zone here.
Everything that Tony and I have experienced in our married life together happened here. Our first Christmas, our dad's building the deck together, the births of all our kids...bringing them home from the hospital...everything. Its on the market and we don't have anywhere to go...for $145,000...there isn't too much out there that is big enough for a family of 9...sure, there are plenty 3 bedroom homes...which wont fit our family...that's what we are trying to get out of.
Could you all please say a prayer for us that we ARE doing the RIGHT thing. We are scared but want the best for our family, and living scrunched up in a small house isn't going to make it. I now that things will fall into place, but for us...it hasn't always been. We have been in need of a break for a long, long time...still waiting...Please pray that somehow, someway things will work out for the best for us...

Fortunate Friday

Today I am thankful for the 13-16 baskets of laundry each week, the 3 loads of dishes in dishwasher each day, the spilled anything and everything...everywhere and the toys, books, shoes, coats and backpacks thrown around the house...for without this, I'd be bored at home with nothing to do.
I also posted this on Facebook.

The Fight for preemies....our story

Twelve years ago I had my first child...he was born at 34 weeks gestation...I thought THAT was early...he weighed 4 lbs 8 oz. My water broke at 29 weeks gestation...I was on complete bed rest for 5 weeks. I honestly didn't know what I was in for. I really wasn't too scared, the chances of survival were pretty good. But, when the day came to deliver him, I was scare...he was so small. He had to stay in the hospital for a week because he had to learn to feed...I remember crying my eyes out when I got home...I didn't have my baby with me like all other new moms. I remember walking out of the hospital, not sitting in a wheelchair like all other moms. I left my baby behind...Fast forward 12 years....

I've have had 7 more children since Tony...all of which were born between 34 and 35 weeks...all of which had to stay in the hospital for a week or longer because of their prematurity...each one of those times, I've had to walk out of the hospital empty handed only to call the NICU every hour to check up on how my baby was doing, how much they ate. Did they d-sat at all? Any apnea episodes? Those are the questions that always seemed to come from my mouth followed by, "thank you for taking care of my baby. Please give 'em a big kiss from me." Oh those days...I thought would never end. Having a baby at 34-35 weeks gestation seemed so hard. Coming home on apnea monitors, taking baby CPR classes, and oh, lets not forget the car seat challenges!

Those days seemed so hard, like I said, until I had my twins at 23 weeks gestation. From the very begin I had problems...it was actually 3 years ago on Thanksgiving that I took a pregnancy test and it was positive...only 6 days past ovulation...How was that....it was too soon to get a positive on a pregnancy test...I felt morning sickness right away...I mean, BAM...instantly pregnant...then, on Christmas morning, I started bleeding really bad...now, mind you, I just had a miscarriage 3 months prior to this, so having a miscarriage was still fresh in my mind. I just knew that I was having one...I just new it...I called my doctor up and told him that I was having another miscarriage, could I come in for an ultrasound to see what was going on. I got in the next day...I was fine. I convinced myself that everything was fine...even if there was no baby in there...well...to my surprise and my husbands...there were 2 babies in there! The bleeding was a blood clot and I was to take it easy...WOW.

So the story continued...I was getting bigger, bleeding on and off but praying to God and anyone else who would listen to keep my babies safe and alive. I talked to my twins every chance I got...Kenny was on my right, Nick was on my left. On one of my appts....my doctor checked me because I was feeling weird...I was dilating...I was put in the hospital on bed rest...until I had my twins. I honestly thought I was going to make it. I thought that my babies would be fine and that I would be having them at about 28-29 weeks...boy was I wrong. My perfect plan to be a mommy to twins totally backfired on my. How could this happen? I tried to stay in bed as much as possible...I just don't understand why this had to happen to me and my babies.

Well I had them by c-section...Kenny at 10:29 and Nick at 10:30...both weighing 1 lb. 7 oz...and just under 12" long....OMG were they small! I didn't know how to act...should I be happy? Should I cry? I didn't know what to feel...I felt numb. My babies that I tried to keep in were gone. Alive, but gone. I couldn't protect them any longer. Now it was up to the doctors, NICU nurses, modern technology and most of all, God. I don't remember too much except going to see them in the NICU with my best friend, Denise. I cried and cried. They looked too small to survive. How were they going to do this? I felt guilty for not being able to hold them inside of my womb...what kind of mommy was I? I felt anger that all those weeks, months of praying and begging God to let me have healthy twins, failed. How surreal it was...sitting in a wheelchair looking at 2 tiny babies that almost looked like fetuses. Their eyes and ears were still fused. Their skin was red and thin...

but I loved them so much. I was so scared for them...I honestly felt like throwing up because of how scared I was about being happy...I wanted so badly to be happy that I had just given birth to twins...but not at 23 weeks. Their chance of survival was under 10%. All the tubes, needles, meds, vents, settings and monitors...all that was for my babies...my twins.

2 days later, our son, Nick passed away. He fought so hard. His little body just couldn't fight any longer. We held him, comforted him as he was passing...the hardest thing in my life. I never want to feel that pain again. It's worse than anything you can ever imagine. It changed me. I am constantly scared that something bad will happen to one of my kids, or my nieces & nephews...I hate feeling this way. I have a hole in my life that will never be filled. Its a sadness that only parents that have lost a child feel...a piece of you is gone that you want back so badly...oh, so badly...

So as we had to get through losing Nick, we were praying and coping with setback after setback from Kenny. It would be one step ahead and 2 steps back. There were infections, blood/platelet

transfusions, heart surgeries, scans, collapsed lungs, eye surgeries...the list went on and on...each day was something new...so, instead of a week in the hospital, like all my other kids...Kenny's hospital stay was 129 days! He pulled through everything with flying colors...that is...until he started to get older. He has developmental delays, Bilateral moderate/severe hearing loss, reflux, muscle issues, is just now starting to walk, doesn't talk, cant eat solids, has chronic lung disease which requires breathing treatments daily, his eyes are starting to cross more and more now and goes to several different therapies and specialist every week...

The NICU was hard, but these days, we just want him to be healthy. He has touched so many people with his ability to fight to survive...I love him for being here and for being such a fighter. I don't know what the years ahead will be like for him, but with love and determination along with his big, loud family and his angel twin...we'll make it special and perfect. Go d gave me preemies for a reason...our love will help them grow and be strong...all of them!

So this is why I am blogging today...This month is National Premature Awareness Month! Premature birth is a health crisis that jeopardizes the lives and health of nearly half-million babies each year. It is the #1 killer of newborns and can lead to lifelong disabilities. Worse: the number has increased 31 percent since 1981. It can happen without warning and for no known reason. Until we have more answers, anyone’s baby, could be born too soon. Medical advances give even the tiniest babies a chance of survival, yet for many babies premature birth is still a life or death condition. It’s the #1 cause of death during the first month of life. And babies who survive face serious health challenges and risk lifelong disabilities. The rate of premature birth has never been higher. In half the cases, we simply don’t understand what went wrong. We need to fight for answers. And, ultimately, preventions. November 17 is dedicated to raising awareness of the crisis of premature birth.

From This (at just a few weeks after he was born...down to around 1 lb)

to trying his hardest to walk! God is so good!

Look what Kenny is working on doing!!!!

Thankful for hopes and dreams....and accomplishments

Today I am thankful for hopes and dreams. Without them, we would have nothing to look forward to!
My hopes and dreams are that my children are and will always be healthy, strong, independent and full of desire to succeed....
my son, Kenny is proving it to me....last night he was taking some steps...very slowly, very unstable...but was taking steps. The look on his face was so worth everything! He has a small smile while staring at me...like..."I'm doing it mom....I'm really doing it!!!". My little baby is trying all his might to walk...I have to thank all his siblings for this one! They treat him like he has nothing wrong with him. They push him to walk and play...to be as normal as he could.
My kids have all been sick with THE flu. It has not been a party here at the Tomecko house. The coughing is not leaving these kids...now I'm getting it. We had Gina and Kenny at the doctor yesterday because of gunky lungs...so now, not only is Kenny on Albuterol and Pulmicort everyday...so is Gina (well, not the Pulmicort, just Albuterol). Gina has a double ear infection...maybe that's why we were finding pieces of food from dinner shoved in her ears after she ate....ugh, she is something else. I am very scared about this "swine flu". The doctor told us that this is what is going around...too early for the regular flu. They had absolutely no toys or books in their office...and all the nurses/doctors were wearing masks...it was very scary to see. And to think that my kids have it...I am petrified. I am putting my faith in God with everything...I have to. I am kind of scared to, because I counted on God to see Kenny and Nick through the pregnancy and to survive without any problems...well, it didn't turn out the way I wanted it to, God had other plans. I don't know what they are or why this happened to us, I just know that whatever is going to happen, God has plans. I pray every night that I will understand and that my faith will become stronger.

In honor of Thanksgiving....

So I'm stealing this idea from Facebook....I am going to be writing daily on what I am thankful for...up until Thanksgiving Day....This will be fun and interesting!!!

Today I am thankful for my beautiful kids. All the great memories and love that we have shared in 12 years....amazing! I am thankful that my kids can make me happy by just looking at them (or mad...LOL). I am thankful for the boxes of artwork and schoolwork that I have in my attic that I cant bare to part with. I am thankful that I will NEVER be bored...ever!
I am also thankful for our Nick. Even though we only had 2 days of seeing your beautiful face, holding you and watching you leave to go to Heaven was the saddest day of my life. I wanted to be selfish and keep you, but God needed you home with Him. I am thankful that there was family and friends up in heaven waiting for you. I am thankful that we have our own angel watching over us...helping Kenny get through life one day at a time. Thank you for the memories of carrying you inside of me. The feeling of 2 babies kicking was awesome! I am thankful that I can count on my kids to help when I ask...yes, I get mouth...but they help anyhow :) . I am thankful that my kids are understanding, compassionate and can relate with kids with disabilities...its an awesome feeling!
I am very thankful to God for giving me all these experiences...some good, some bad.

Oh...and in honor of Veterans Day...I am VERY THANKFUL to all of the men and women who have served and protected us! Thank you for everything you have done!

Fight For Preemies // Bloggers Unite

Fight For Preemies // Bloggers Unite

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Wish Upon a Hero - I wish for angels of all kinds for our family's "Angel Tree"

Wish Upon a Hero - I wish for angels of all kinds for our family's "Angel Tree"

Its a WONDERFUL life....maybe

We've been dealing with a horrible sickness in the house....I don't want to say H1N1, but it has all the makings of it...cough, high fever, bad headaches, tired, runny noses...oh yeah! We were supposed to finally celebrate Sydnie, Kayleigh and Tony's birthdays...which were at the end of Sept. and beginning of Oct...well...it was put off yet another weekend. Stuff like this happens when there are 7 kids under a small roof :). My worst fear is coming true...Again.
Just when you think things are going your way....BAM...life sucker punches you! So, yeah...its here.
You'd think that Kenny getting the H1N1 vaccine AND all the kids getting the flu vaccine would help just a little...ah...nope! When I called the hospital for Kenny, they told me that it takes 4-14 days for the H1N1 vaccine to take effect...well....um...its only been a week so I am really hoping that getting it will make it less dangerous for him. He is and has been coughing sooooo bad!
Go figure, the nebulizer died...after 2 and a half years, we go to use it and, out of the clear blue, its not blowing the air. Boy, that comes in handy when you have a little boy who is coughing up a lung and needs his pulmicort and albuterol. I am just hoping this too shall pass quickly. This week is so full...Tuesday I have to go get the stitches out of my ear. they took a mole that showed up out of nowhere... and boy, was it big...took 3 stitches! On top of that, Kenny has his therapies...speech, pt, ot, and also his pulmonologist appt., so this should make for a very interesting week.
On a different note, we are really going forward with our selling our house...we think. LOL
The living room, dining room, upstairs and bedrooms...painted! We've given more stuff to goodwill and the church because we just don't have room for it in this house! It feels so good to just clear out the house. I even bought a $24 door bell! For the 15 years of owning this house, we never had a door bell! I took time yesterday (the day of the supposed party) and painted our front door hunter green to match the shutters! It looks so good! We also had my sister and her fiance help us clean up ALL the leaves in our yard. I am telling you...we NEED to make $120,000 after everything is said and done...this way, the real estate agent gets his commission, ad we pay off our mortgage, second mortgage and line of credit...with all three of those paid, we would be able to afford a SLIGHTLY higher mortgage than what we have now....I say slightly, because we want to move into a bigger house, so taxes are gonna be higher, along with utility bills. And if we try for the house that we REALLY want...the foreclosure...we are going to need money for paint, flooring, and anything else to make it home....so PLEASE keep us in your prayers...this is hopefully going to be a good thing...as long as we get approved for a mortgage loan. It is just not healthy living on top of each other anymore....we need change! I want the kids to be able to have bedrooms where they can call their own...or at least, half of their own...instead of...top bunk is my area! LOL. Tony and I don't even have alone time...we have Kenny in our bed and in the crib right next to us...Gina!
So, please...I know I've asked you all to help us get EMHE to redo our house...but we all know that THAT is NOT going to happen....it was a dream...a close dream that I thought we has a chance at. Some other family who was in need of it more deserved it...and...rightfully so. We just need prayers that we are doing the right thing and that the right thing WILL come along and happen!

Oh...one last thing. You all know that we have a squirrel that I have rehabbed...well, I have to share these pictures with you...Kenny really is not interested in too much...but one thing he is VERY interested in is Leo the Squirrel...The squirrel NEVER bites us humans, he is actually very gentle except for his nails. LOL
Anyhow, Kenny plays with him all day long...he loves to play hide and seek with him on the couch...I just think its the cutest thing...see...

Here is a video of Kenny and Leo playing (sorry for the loud tv)

And finally, I am going to be doing something for the NICU at the hospital where Kenny and Nick were born...I am collecting angel ornaments from everyone I can, to make an angel tree in memory of Nick, and all the angels that have put up a great fight for life...but ultimately went home to be with God...and also for all the sick babies, and babies that are born way to early...like my twins, to remind their families that there are angels watching over them all the time...that there is good that does come out of this...it may take a while, but there is. And finally, to give them hope for the next holiday season! So could you all please send angel ornaments...of any and all kinds...hand made, store bought, what ever.... to us. Pass this along to everyone you know!
You can e-mail me or leave me a comment and I will give you the address! Thank you so very much!
The link to this wish is below:
IT IS A WONDERFUL LIFE!

In Need of Change

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

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

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

Nothing a little paint wont fix

I LOVE the family room!

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

I love this entrance

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

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

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

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

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

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

Please vote for us.

Ok...to all my followers and readers of this blog, my life...I have entered the HealthBlogger Awards and would LOVE it if you could all vote for my blog for this award! I have put my heart and soul into this blog and would LOVE to win something this important to me.

Vote for me at either: http://www.wellsphere.com/michele-tomecko-profile/147034

or on my sidebar I have a badge to vote on.

I really, really do appreciate all my readers. Thank you for your support!

Wonderful and wacky Wednesday

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

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

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

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

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

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

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

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

RIP to our neighbor...our friend.

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

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

Fall...foliage and flu

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

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

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

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

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

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

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

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

Steps....Baby Steps!

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

And Another Birthday

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

Happy Birthday Kayleigh!!!!

Fortunate Friday

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another birthday....

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

Seasons of change

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

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

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

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

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

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

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

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

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

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

Here are just a few pics to entertain you all:

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

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

Feeding evaluation diagnosis and more

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

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

Happy Birthday to me (and my twin)

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

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

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

In my dreams

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

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

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

In my dreams, my loves.