Hospital stay...#45681579 (or so it seems)

So much for a relaxing weekend (even though, with 7 kids its never relaxing)...Yesterday I took Kenny to the doctor because he was lethargic, coughing to the point of puking, a high fever, and looking really really sick...and what do ya know...they admitted him. His temp was 104 degrees, his heart rate and resp. was really high, and they wanted to keep an eye on the coughing. Not to mention, he had not pee'd from the night before. It took till 7:00 pm, and tons of IV fluids for him to pee. All the while, I was praying that he wouldn't go into a seizure...which...(knock on wood)..he hasn't.

This seems like the same virus that he gets every 6 months, like clockwork. I was so paranoid that he was going to go into a seizure that as soon as I was able, I made an appt. with his doctor. When we got there, a doctor (whom Kenny never had before) was going through his history on the computer. I mentioned to her that he just had an MRI, metabolic testing, and immunology testing...so she looked it up on the computer. There she did confirm that our Kenny has microcephaly and a cyst...but, "not to worry about it...its things we already knew"...ummm...yeah...thanks for throwing that on us doc!
My heart dropped and broke in a million pieces. I mean...OK...I've dealt with miscarriages, Nicks death, the NICU, a gazillion hospital stays, surgeries, seizures...but my son cant be given a death sentence after all this....can he? I mean, it you look at the bigger picture of life, we all end up doing the same things...we born, live and die. But honestly, I am trying to understand all of this. I look up online what exactly "microcephaly" is...I know, I know...I shouldn't do that, but face it...we ALL do it! Now knowing that there is a diagnosis...I looked it up. I shouldn't have.
This is taken from the very well trusted Cleveland Clinic website:

What are the symptoms of microcephaly?
Aside from a noticeably smaller head, the following are the most common symptoms of microcephaly.

High-pitched cry ...yep, had this
Poor feeding ...and this too
Convulsions ...were batting 3 for 3 here
Increased movement of the arms and legs (spasticity) ...check...Its all the time with Kenny
Hyperactivity ...check...he never stops!
Developmental delays ...that of a 20 month old *sigh*
Mental retardation ...I just don't want to go there with this one

Delayed motor functions and speech ...this one too.

There was also a website that mentioned hearing loss and strabismus...which he also has.

As the child grows older, his or her face continues to grow while the skull does not. This causes the child to develop a disproportionately large face, a receding forehead and a loose, often wrinkled scalp. The rest of the body is often underweight and proportionately smaller than normal.
(and for this paragraph...I cant and dont want my beautiful baby to start looking like a freak! sorry, I am just writing what I am feeling)

Then...comes the kicker...the prognosis...

"the life expectancy of an individual with microcephaly is reduced and normal brain function, poor."

No words.
So this is where were at now...I'll know more when I talk to his doctors.

The right to live...

I don't usually come on here talking politics...but I just got done reading something very disturbing....This was taken from the blog, Liberty Juice. Now I am not a very outspoken political person...I just so happen to see this article, and later saw the clips from the show that this was on, and just feel that no matter what stand you take politically, this is just not right....

Remember those death panels that Sarah Palin told us about that the liberals via the mainstream media tried so hard to make a mockery of every day on the nightly news? Remember the articles, the late night talk shows, the Democratic Congressmen and women who would laugh at the mere thought of something so ridiculous as that and bent over backwards to reassure the American people that of course there would be no such thing? Well, evidence shows us that death panels in socialized medicine isn’t so far fetched at all and maybe those crazy right-wingers were on to something.

A prominent British health care official associated with the country’s socialized medicine agency NHS is set to make a disturbing admission in an upcoming documentary: she thinks premature babies born at 23 weeks gestation should be left to die. Why? Cost concerns.

“If it was my child, from all the evidence and information that I know, I would not resuscitate,” Dr. Daphne Austin says in the BBC program 23 Week Babies: The Price of Life, reports London’s Daily Mail.

She continues: “We are doing more harm than good by resuscitating 23-weekers. I can’t think of very many interventions that have such poor outcomes. For me the big issue is that we’re spending an awful lot of money on treatments that have very marginal benefit. I would prefer to free up that money to spend on providing support to people who have much more lifelong chronic conditions.” [Emphasis added]

In even more stunning comments, Austin says that while parents should get a say, in reality they don’t speak for the baby: “There’s a lot of emphasis on the parents’ views and what they want. But somewhere in there, there needs to be an advocate for the baby.” The Assumption seems to be the baby would rather die.

Welcome to socialized medicine, America! Where some bureaucrat with an accounting ledger gets to make the decision if your precious baby will live or die based on the “bottom line cost.”


To me, a baby is a baby. I was shocked to see that if Kenny and Nick were born in the UK, then Kenny would not be here today,and I wouldn't not of had 2.5 beautiful days with my Nick. Sure, he's got his share of problems...but that hasn't or wont stop him from being a human being. His smile, his hugs, his soul...that's what matters. To just say that their lives are not going to amount to anything because of all the disabilities and medical care that these babies will need is complete garbage! What about murderers who end up in prison for life....that tax payers have to support. Who should say that one life is non-savable (if that's a word) while another is? No parent should have to watch their baby die right before their eyes because the government, and medical personnel decided that they wont have a good quality of life. Pretty soon all babies born with disabilities or chronic illness will be left to die...hey, isn't that what society wants? A perfect, healthy child that will not cost medicaid, the government or even the hospitals hundreds of thousands...and many times, millions of dollars? Shouldn't we all just stop thinking of the almighty dollar sign when it comes to human life and use what God has given us (well, the doctors & nurses)...the chance to save lives. To use the knowledge that God had instilled in many very smart and talented people....to try everything to save the lives of even the smallest baby...because in life, there are no guarantees. Tomorrow you can wake up like every other day...go to work and end up in the ER because of an accident...you can end up with a serious injury...but you know what? You'd still be treated....you'd still fight to live and want them to save you.

*I have to add that not only can this happen...it IS happening in our country! We are talking about the insurance companies that wont cover things like equipment or even life saving procedures. It goes on around us every day!!!


Please join us on Facebook for the March of Dimes walk. Kenny is the ambassador for 3 local Kmart stores and we would love to have a large group to walk with in honor of our kids, especially Kenny and Nick. If you cant walk, we would be honored to take a donation and have your name and/or company business on our shirts and banner!
Facebook event: March of Dimes, Team Tomecko
or you can go directly to our team page: http://www.marchforbabies.org/team/t1474809

post MRI update

Well, nothing...including anesthesia, can keep Kenny down. By the time we got home with him yesterday afternoon, he was lining up chairs and cans...in true Kenny form! Here are some pics from yesterday... ...and this is him waking up...he was cold, but had his pajamas with the snap over, right next to him.

It was a little overwhelming, all the terms they were using...the labels they were putting on Kenny. I came home and by the end of the night was ready to lose it...but then I thought to myself that we and the doctors are doing all of this to work with what is going on with Kenny. Its not changing him at all. Thanks for all the well wishes. We will know the results within the week.

At the hospital...

Well, I am writing this while waiting for Kenny to get done with his sedated MRI. Yep, lots of coffee and pretzel nuggets & Fritos for us (in the break room). While under, there are gong to be drawing the blood for his immunologist and also getting a urine sample fir his metabolic testing. All throughout this morning all I hear the doctors saying is that he has microcephaly. We were told this before, but just assumed that it was from his failure to thrive....well, I guess now it's starting to be a bigger problem. I decided to look online (on the iPod that I'm using) to see exactly what we are looking at....ugggh...that will teach me to look up a diagnosis online. It's pretty grim...but it does explain his delays and his seizures Very disheartening to say the least. No matter what, my son is perfect! What scares me is the fact of losing another child. I honestly don't think I can do it again. I know God is in control over everything and our children are just borrowed from The Big Guy Upstairs, but why do parents have to suffer from a chronically Ill child or the death of a child. There has got to be a reason...I know with Nick, it was so I can help other parents work through losing a child....and maybe, having our Kenny is doing the same thing. But why? I know some people just think of having a chronically ill child as nothing, just a lot of hospital stays or eh...your child LOOKS great...but when it comes tight down to it...it's constant worrying if tomorrow never happens, when will the next hospital stay be...and for how long, what diagnosis is going to be given next? It's an every day battle. An every day worry. An every day struggle.

God has blessed Tony, myself, our kids and family with Kenny and also the memory of Nick. The struggles, worries, and even the hospital stays...God is with us all.
Oh...and 11:11 has made it's appearance two times to us today (I'll explain in my next post).
Ok...got to go...Kenny will be coming out to recovery soon!

MRI, metabolic testing and immunology...oh my.

I'm back! whew...what a long month of no computer. I felt lost without it. So much to catch up on. It feels so good to be able to write on my blog again! So without further adieu....

Kenny was seen by his neurologist a few weeks back who wanted him to get some metabolic testing done along with an MRI to give us some answers to some issues with him, so this past Monday we were at the hospital getting his physical for his sedated MRI this coming Monday. I cant say that I'm not nervous, anytime he has to be put under anesthesia I get worried. Part of me wants nothing to appear, but the other part wants the answers as to why he's not talking or eat a lot by mouth, why his gait is so wide when he runs, why the muscles in his legs/arms are tight, and why he is so developmentally delayed. I know that he's a micro preemie...and I know that being born at 23 weeks doesn't come without some disabilities...and I also know that it could be a lot worse. I am grateful for how awesome he is doing, but as a mom, I need to make sure we know exactly what is going on with him so we can work with what we are dealing with.

We are also hoping for some answers from Metabolic testing that the neurologist ordered. He wants to see what is going on with every part of his body, so Kenny had to give 5 big viles of blood....and let me tell you...my little guy is a toughie! He sat on my lap, I held his arm...and when they put the needle in...he never cried! He made an owie face, but not one tear, scream or sound came from him.

....so that brings us to this past Thursday when I went to Kenny's immunologist follow up appointment (from a year ago). Apparently the doctor found something in the blood work that would explain why Kenny gets so sick, so often and really wanted to talk to us about his findings. Many thoughts raced though my brain...from... "omgosh...many, many blood and platelet transfusions while in the NICU...could that of caused something serious?" to "hopefully its just an allergy from something". So what did the doctor have to say? Well...apparently some of the vaccines that Kenny has been receiving since the beginning are just not working. Either the levels of them in the system is way below what they should be or they are just not present in his system at all. He has an immune deficiency. He explained to me that we can go somewhere and be exposed to something and be able to fight it off with just a cold....when Kenny's body comes in contact with some bad germs/viruses, he has nothing to fight it. I was taken back by this, but honestly...I knew that something wasn't right. Call it mothers intuition, but he gets very sick all the time...something that after having 8 kids, I can really pick up on. lol. I honestly dont know much more than this...I dont know what to expect. If its life threatening. If it is just a simple problem that can be fixed with meds...I honestly wont know much until the next doctor appointment.

Where do we go from here? Well, Monday is his MRI...they will also be taking a urine sample (for the metabolic testing), so they will take some more blood then and do a final test that the immunologist needs. He told me that he didn't want to throw too much info on me at one time, so we then will go back in 2 weeks to go over everything and what his plan of attack will be.

It has been a crazy couple of weeks...a lot to take in and process. All I really know is that Kenny is a miracle and everyone that crosses his path smiles back at him. He is a blessing to us and we are so thankful that he's in our lives...no matter what the outcome!

A broken computer

My computer has been broken for a few weeks now, so posting is almost impossible at this time. I hate not being able to post, but will have a lot to write about when I get the computer fixed.

Doctor appts., Valentines Day, crazy things and prayers needed

Yesterday Tony and I took Kenny to his Audiology appt. followed by his neurology appt. It went pretty well...pretty much how we expected. For his audiology appt., they spent quite some time working on his hearing testing. Came to the conclusion that he does, in fact, have moderate-severe hearing loss...which we already knew. So back in 6 months for his next appt. I forgot to ask about the cochlear implant...which I think he would really benefit from...but we'll wait till the next appt.

His neurology appt went well too...We discussed cerebral pasly but the doctor also wanted to do some really in depth metabolic testing to see what is going on (if anything) with Kenny's body. SO this week, I'll be taking him for blood work and a urine sample. We also discussed Kenny having another MRI. The last one he had was when he was only a year old. I'll be making the appt for that tomorrow. He'll have to be sedated for this though...so yeah...a little nervous. I am finally feeling good that we will have an answer to all of what we are noticing (the wide gain, curled in hands when walking/running, tongue sicking out all the time, drooling, non-verbal, etc...). I know that it IS a possibility that it is just "extreme prematurity", but what exactly IS "extreme prematurity"? Is it that, even thought he never had a brain bleed...his brain's connections short circuited because of how early he was? Is it that he is just THAT FAR developmentally delayed because he was so early? Even the doctors don't know. Could he have some chromosomal problem? sure. Could he have damage to his brain even though he never had a brain bleed? Yes. The doctors have told me yes because his head was so small (about the size of a small clementine orange), that while his brain was growing, the connections didn't connect right. Does it bother me? Oh my gosh yes! Still feeling some guilt about having my twins, "frick & frack" as I called them, early...it does bother me that I couldn't keep them inside of me...knowing that Nick died because of being so premature...and Kenny has had so many battles that he had and still has to face. So...yeah...it hurts deep in my heart. And this is why I am fighting so hard for my surviving twin. I will work hard and give him what he needs to succeed in this life...to stay as healthy as possible. Its my commitment to him.

On another note, does anyone else have this problem?

Does anyone else have a kid (or kids) that eat butter like an ice cream bar? UGH...yuck!

At lease I wont have to worry about Gina and constipation. joking!!!!Oh...and on laundry day...Kenny decided he was going to line up the baskets of clothes...oh...and the garbage can. LOLThe kids having fun in the empty basket....Also...Valentine's Day came and went...and well...lots and lots of valentines...

Kenny was having fun lining up the mini nerd candy boxes...I decided to decorate and surprise the kids (and hubby) for V-Day...the garland of hearts were valentines to each of my loves.The kids woke up and Sydnie yelled out, "its raining hearts"! SOOOO CUTE! I am so glad I did this.

I have to ask all my readers a favor. Could you all please say a special prayer for a dear friend of mine. A friend who has been facing a tough battle of her own. Her son, Zach is the same age as Kenny. He has MITO (mitochondrial disease). To make matters worse, he is now in the PICU on a vent. He is fighting for his life with a serious infection. PLEASE, I am asking you all, please pray for this little boy. Him and his family are very near and dear to me. He is such a little fighter. He has spent more time in the hospital than at home for the past 3 years. It breaks my heart for him and his parents and older brother. I pray that he can make it through this...he just has too. Hugs your children just a little bit tighter tonight and pray for healing and comfort for him and his family. Thank you very much.

In a blink of an eye

In a blink of an eye, you are born. The world is yours for the taking. All your dreams and possibilities are just all right out there for you to grasp.

In a blink of an eye, Those long years of school are over. Where did they go? Everyone goes their own way...in their own direction.

In a blink of an eye, your childhood is over. You are now an adult. Facing adult decisions...yet you still feel like a kid. A job, a home, a new start...all in a blink of an eye.

In a blink of an eye you can fall in love. Finding someone that is meant to be. Your soul mate...the one that you wish a lifetime was forever with. In a blink of an eye...you found the one.

In a blink of an eye, You go from just the two of you to three...and then more. The love you have created a beautiful life. From the first sign of being pregnant to delivery is just a blink of an eye.

Sometimes that little blink goes by quicker than expected or slower than expected...

Born too early. A child that is smaller than a 16 oz bottle of water. The NICU experience. The feeling of not knowing. The days that seem to go by slow. So slow that the world is passing you up. But as the years go on...it was all just a blink of an eye.

Then you get the what ifs, the hospital stays, the medical supplies, the medications and the diagnosis...at times you wish it could go away in a blink of an eye...but know in your heart that it wont...it cant...it is what it is.

In a blink of an eye...the world is much different. Life is different. Losing a child....in a blink of an eye...its so easy to say "I'm sorry". Its so easy to try to forget...but you don't. You wish that the pain, the helplessness, the heartache...all of it...would just go away...in a blink of an eye, but it doesn't. If that would happen one would never know the love, the compassion, the deep feelings of the ultimate love. To love even after a loss. To trust even after a loss...to feel...even after a loss.

Make the most of every day. Love life, enjoy your miracles...the good and the bad. Life can change in a blink of an eye.

sippy cup training...FAIL

I've got to tell ya. When there is only a small amount of time in the day to get my writing done...it never fails that there is something else happening. The reason for the long delay in posts are because my laptop battery life decided to take a nosedive and gives me around a half an hour unplugged. Ha...and it also happens that the plug to charge the battery decided to follow suit with the battery and break. So, I get a few minutes to write in between trying to charge the computer with a broken cord and a dead battery.
So, on with my funny story of the day...
On Wednesday, we took Kenny in for his check up at his Comprehensive Care doctor. He gained weight. He is no where near the actual growth chart, but he is following his own curve! He gained 6 lbs. this year! He has also gotten much taller. Anyhow...we are to try getting him off his bottles and onto sippy cups, which has been a pain! Kenny's doctor also looked over at Gina and asked why she was still on bottles (yes...I know...don't lecture me...shes 2.5). Honestly...I just haven't even thought about it...well, yes I did...but with everything going on with Kenny, I just havent...well...done it. So...Wednesday was the day! We told Gina that the bottles were gone. We gave them to a baby that needed them. It's easier to get her off of them because Kenny and Gina have two different size bottles. Gina has the 8 oz. Playtex drop ins...while Kenny has the 4 oz. I took all of the 8 oz. bottles and put them behind things in the cupboard, in the kitchen. So it was sippy cups for Gina! First night...cried all night for her bottle. It didn't help that she is sick. She was coughing up a storm. Because of that, she ended up puking all over her bed....yeah..lovely! So, first night was hard...woke up in the morning asking for it. I just told her that the bottles were gone and a baby that needed them has them. Yeah...no. She didn't like that answer, but took her sippy cup anyways.
So as the day progressed, I had to get some things accomplished around the house. Kenny came home from school and it was back to the chairs. Yes...He has really gotten quite good at maneuvering those dining room chairs all over the house. So while him and Gina were playing with the chairs...and the canned goods in the kitchen. I was ordering a new batch of medical supplies for Kenny. I had to walk out of the kitchen because the noise that those two were making, made it sound like I was in a playground with tons of kids and an Ice Cream truck! haha!
So as I am talking to customer service (an actual person, not a computer....woo hoo), Gina comes in the room saying, "I want a baa-baa...make it, puh-leese". I looked at her...and there she was, holding a found 8 oz bottle, the nipple and the nipple ring...and the gallon of milk (which was almost empty). I told her no...and to put it back. No baa-baa's! She stormed off back into the kitchen. Still on the phone, I noticed Kenny walk into the living room with a wet sleeve...I went onto the kitchen thinking I was going to see the milk everywhere. But nooooo....there was only a little bit on the counter and Gina standing there...with a bottle...filled. Bottle bag put in, milk poured, nipple on...yep...she made her own bottle! Little booger! So, now I figured I have to actually get rid of all bottles in the house and maybe hide the milk. ahhhh the joys of motherhood!

The haystack gets bigger...but not impossible!

Let me start off by asking...you know how hard it is trying to find an ear mold to hearing aids? The answer....Like a needle in a freaking hay stack! Remind me to get his ear mold a bright color the next time he goes to his audiologist! We finally found it after a week of looking for it...yeah...thanks to Kenny deciding to rip apart his hearing aids and throwing them wherever the heck he wants to. There has got to be a better solution for keeping these things in his ears and not in his hands and lost. I do have the bungee band to hold them together so he wont lose them by accident...but he has learned to take them apart and make us all...yes...all of us living in the house...8, not including him....to search EVERYWHERE FOR a little one inch piece of clear plastic...haha...it makes for an eventful evening er.. week.

This brings me to something else that went on this week. I had a teacher/parent conference with Kenny's 1st step teacher. It went amazingly well. He is really working on reaching his IEP goals...he has met 2 of them so far. She also had his report card that she wanted to go over in person. She wanted to go over it in person because she felt that it really wasn't pertaining to Kenny at this point. He is no where near any sort of academic grading yet. We had a long talk about his delays. I told her that I knew that he was really behind...he is almost 4 and acts younger than Gina (who is 2.5). I told her that I was alright with knowing this...when in fact...deep down inside, I am so broken hearted. She told me that he was around 18-20 months of age...developmentally. Yeah...I knew this...but still, being told this by someone who knows a thing or two about special needs kids kind of made it a reality that I DO have a special needs child...not only chronically ill...but developmentally. This is something that I am really trying to work through. He is still in need of hand over hand help with many activities, doesn't know how to use scissors (where as Gina was just using a pair of them to cut paper). He is grasping crayons in a fisted grip and has just started to use the four finger grip. I mentioned his gait and how when he runs its like he is Frankenstein running with legs far apart and his arms curled up and in. I also talked to his doctors about this and they have noticed it as well. So come Monday, he has a Neurology appt. and also an Audiology appt. I will find out more then.

Oh...he is also a lefty (well, at least, he favors his left hand)! I have a very cute thing to share about this...my brother (whom I sort of named Kenny after...see, we have a million "Johns" in our family and I really wanted to honor my late brother and my dad who lives in AZ with my mom....but in our family there are just...too.many.Johns. LOL

Then my husband had a good friend many years ago growing up who's name was Kenny. He passed away when he was a teenager from cancer. So the Name Kenny (Kenneth) was a "no brainer"....and now...this solidifies us picking this name for such a strong little boy!

So basically, God has blessed us with a miracle that will keep us on our toes minute by minute!

What today has in store for me...

Its all about cans & chairs....cans & chairs (notice Kenny at the far end of the chairs) LMBO!

Have a great day everyone!

mystery of the green hair

It started Tuesday morning. I woke the kids up for school when one of the girls looked at me and said, "why is your hair green?" What are you talking about? Green in my hair...no way! But I looked...and there it was. A streak of green in my hair. Hmmmm...how odd. Could it be the new organic shampoo that I tested out the night before? I fluffed it off and went about my business. The next day...I had green on my hands and more in my hair. What the heck was going on? Was there a marker in our bed? No, I stripped the bed and put new sheets and pillowcases on it. I then thought...maybe one of the kids took green marker to the headboard of the bed (wrought iron), so I took a baby wipe to the whole thing...nothing! OK...so now, this is really starting to bug me. Where the heck is this green coming from?

Thursday came with just a tad more green in my hair...but I just kept it up in a ponytail...I just have been so tired of washing my hair...so the ponytail it will stay put!

We then get to Friday. I was in the kitchen putting dishes away...I looked down on my hands, and what the heck, I had green on them! Not a ton...but just like someone sponged the thumbs and fingers! So now at this point, I was getting really, really frustrated! Where was the green marker? What did I touch that was green? I looked through the whole kitchen to see what I touched...and to no avail...no green marker in sight! Now, Keep in mind that Friday morning was the morning from...well...not a good place. Woke the kids up for school with the same lingering migraine headache (brought on by a stupid sinus infection) that I had all week. Got Kenny up for school as well. So, there you have seven kids running around at 7 in the morning...and me trying to get everyone together to get to school on time. Get them in the car with a few of them fighting with each other...*ignore, ignore*...drop the first five off with my signature, "have a good day, I love you" that I seem to tell them at every morning drop off...but meant it with all my heart (even though this headache was pulsating after the nonstop fighting). Now with the car nice and quiet with just two kids with me...its off to drop Kenny off. I am usually waiting in a line of cars and buses that extend well into the street...and that morning...well...I thought I was ahead of the game. Woo Hoo! First one in line. I got the front spot. Then the waiting began. I waited and waited...no one was coming out and there was not a car or bus behind me. Finally after 20 minutes waiting...I ended up going home to see on his school calendar, that there was no school. Oh yeah...nice. Anyhow...back to the green...

It was bugging me all day...still not a sign of green anywhere but on me!

Fast forward to this morning, Saturday...I woke up with my hair really, really green and also my hands were covered. To the point of where I could have passed for Oscar the Grouch! I couldn't figure it out. I had my hair up when I went to bed (like I do every night), I changed the bed sheets, changed my pillow cases, washed the bed frame...yet still I had this green in my hair and my hands were covered again! I went to take a shower and noticed that the collar of my t-shirt I was wearing had tons of green on it! I sat there wondering what the heck it was...where was it coming from...and then I put two and two together. I FIGURED IT OUT!!!

My hair scrunchy! The thing I have been putting my hair up in every night this past week! I took it out of my hair and put it under the running water...and to my surprise...GREEN!

I then filled the sink up and let it soak...

It must have been in either the toy box or one of the girls pencil pouches that had an open marker in it. Lucky me found a hair scrunchy to put my hair up in at night time...all week long. So after a week of the mystery of the green on me, I figured it out!

Phew... CASE SOLVED!

Now back to my daily life of cans, chairs, laundry and kids!

Wanting to give back

Having a mixed feelings type of day. I have decided that this year...2011...was going to be the year that I make a change...even if it's a simple change, I was gonna make it. I thought to myself, working out? Nah, I get enough workout with chasing 2 toddlers and a house full of kids. I thought, a dietary change? Nope I really do eat healthy. So...what do I do? Well, a change was right there in front of me...something for me...for me to do for myself. Something that make me proud of myself, make myself feel better from the inside out, a change for a reason and a purpose.

Sooooo....last week I went to a parent to parent volunteer meeting at the Hospice. I was so scared about going. Not sure if I was ready to help others who are going through or just went through what I had the unfortunate opportunity of experiencing...the death of child. I was stalling on getting ready, stalling on getting in the car...actually having anxiety attacks about it. When I got there. There were 7 other moms who have lost a child...within the last 5 years. Each of us got to tell our story to everyone. Most of the kids that passed away, did because of cancer...I really hate cancer...I really do. Their stories were heartbreaking. There was a 12 year old that just wanted to live long enough to become a teenager...to experience what all 13 year old experience. There was a 2 year old that couldn't beat cancer after having a marrow transplant a few weeks earlier. There was a 7 year old that loved Disney. Oh man....I couldn't stand it. Now I understood that I wasn't alone. The box of tissues were put to good use in those few hours. There was a child who had a seizure disorder who ultimately passed away because of his weak lungs (yeah...this one hit home...a little too close).

I sat there wondering if i even belonged there. I mean, I only had 2.5 days with Nick. I actually felt/feel very cheated. I explained to the women that I was so excited to be pregnant with twins...I mean...what a blessing, what a double blessing. I told them that I still feel very guilty about my body not being able to carry them longer than just 23 weeks. I told them how beautiful my babies were. How proud, yet very scared I was when I saw my twins for the first time. I was a mommy of two very tiny but perfect babies. I remember staring at Nick and looking at his beautiful blond hair, his perfect little fingers, his tiny little nose...but I never got to know his personality. It was probably a very strong yet compassionate one to be able to let go and go to Heaven. I told them how I felt. Like my world was no longer. I was numb...I was no longer the same person. I felt like part of me died with my son.

I then asked the hospice workers that gathered all of us together if there was any place here for me...I mean...I only had my son for a few days...they told me that I was there because of that reason. That there are SO MANY parents that are in a NICU situation. Preemies, babies born with problems like genetics and infections. Babies only given a few hours, days, or weeks to live. Parents like us who were blessed with twins yet only one makes it home. Also parents like us who have a chronically ill child with special needs who, don't know from one cold to the next, from one seizure to the next, if that will be the last. Will I use hospice for services for Kenny? No, but they do have an awesome Child Palliative Care program that I may look into. I have had so much help from others through hard times, that I want to give this back to those that are going through a similar situation.

So yeah...I will be helping families that have/are going through what we went through...And yeah, I am very honored about doing this. I plan on doing this and doing this wholeheartedly! I finally found a purpose for what I went through...losing Nick, having Kenny in the NICU for 129 days and also dealing with Kenny's chronic problems...I finally found a purpose.

I have been feeling really down and exhausted about everything. Feeling exhausted about meds, feeds, living day to day with a child who cant talk, is developmentally delayed...by...a lot. A child who understands but cant express, chokes on some foods, lines chairs and cans up (every minute of every day)

I also decided that I am gathering all my resources and starting my foundation, Milestones for Micros (as I said a few posts back), this will help those families that have a child in the NICU with some things they could use while their miracles are in there along with our "milestones" shirts for their preemies when they come home and for their first couple of birthdays. It will also help those that have lost a twin while in the NICU and will have to carry on the weight of a death of a child and the survival and possible long term conditions with the surviving twin. I will be holding fundraisers for this and for the March of Dimes...Team Tomecko (click on the words to get to the link)...so if anyone wants to donate or knows any company or business that wants to help out, please let me know.

OK...Back to the laundry and cleaning up after Kenny who is STILL obsessed with lining chairs and cans up.

Kenny's new obsession...

I sometimes feel that kids really know how to live...I mean, look at this...this is his biggest concerns. How great it would be if "can placement" or "chair placement" were the biggest problems. Notice how much time and attention he gives each can...lol...

This and thats from the weekend

This weekend was filled with many fun things to do!

We went and watched my son and his school team win another game...I love this picture of Kayleigh...Tony is #22... Goooooo Falcons!

***********

On the same day of Tony's game, we went to an art show where Morgan and Sydnie had their artwork from school in. Very proud of them!!! They are taking after their mom and dad.
And finally....While Kenny is still making perfectly straight lines with the dining rom chairs in my living room and kitchen...he has also turned to playing with the cans.

He lined these up perfectly!

And he's still at it!

Almost 6 oclock at night...and he's still lining up chairs!!!

Chairs all in a row...

This is what Kenny has been working on...all day long. He gets the chairs from the dining room and drags them into the living room...I then put them back....and he decided he needed them in the kitchen...Chair #2...positioning chair #3Oh boy...the chairs are lined up nice and pretty...Getting the last two chairs...ugh...After I put them back...he proceeded to put them back in the kitchen. I then put them back around the table again only to come into the living room to this!He then got bored with them lined up that way so he started lining them up in front of where I was sitting... Since this picture...he has lined them up several more times after I put them back around the table! I know its harmless...but there is only so much a person can take with lining chairs up! This is where his autism is kicking in. I strongly believe this. He is very busy with this and is putting a lot of thought into placement of these chairs.

Gotta love a special child!

What year is it again?

Ahhh...the joys of starting off the new year with a new calendar. See...I keep a big desktop calendar hanging in my kitchen to write down everything...well, with the start of the new year came with Tony getting a new calendar. I opened it up, wrote all the important reminders and appointments in it, and hung it up. Seemed as simple as pie...right? WRONG!

I get the big FAIL for this one...

...look at the month and year...

(yes, I wrote the big "FAIL" for hubby to see)

HAHAHAHA!!!

Tony bought it for $4.50...a few days ago!!!!

Think I can get our money back?

What I've learned from 2010

OK...so this is the start to a new year...and what better way to start it off than write out what I have learned throughout the past year. I am breaking it up into categories so as to make it simple for my sleep deprived self to write it out. I'm sure there are more...but I'll save it for another post!

Personal self:

I have learned that I am a very simple person. I am not high maintenance at all. I can go without...because I have. I have learned that hope is good. I have learned that it takes years to build up trust and it only takes suspicion to destroy it. I've learned to let go. I've learned that people are more important than things. I have anxiety due to Kenny's chronic health issues and some other things that were made up by others, but have found that I am much stronger than those anxieties. I have learned that I cant and don't like to hold a grudge but don't get me to the point of no return (my Italian side is very stubborn). I've learned that I can go for days with very little sleep and can still smile. I have learned that I have a strong faith, but sometimes question what really happens after one dies...but still has faith that there is something more. I have learned that I really miss those that have passed away these last few years...and even longer (Nick, Jerry, Tony's uncle Bob...etc...). I have learned that I do have OCD, PTSD, and PMS. That I never liked any kind of change, but is now starting to think that some change is good...everything changes...its us to keep traditions going. I have also learned that letting go of things (emotions, feelings, and also objects)is also a good thing...this way, I don't feel like I'm a hoarder of all those things. Bottling up things is terrible. Oh...I have also learned that I love to have fun, laugh, play, dance, and look at things with a fun twist...and if that makes me "flighty" and carefree...so be it ;)

Friends:

I have learned that friends come and go...but are never that far away and are never out of my life for ever. I have learned that FB, this blog, and other message boards that I am on, there are amazing people that have interesting lives who have been put in my life for a reason. Everyone has a story. Everyone has issues. Everyone needs an ear and an open heart. I have learned that not everyone agrees. I have learned that when times get tough...I have a tremendous amount of friends and people that care...I love each and every one of you! I have learned that there are some crazy people out there too. I have learned that one CAN have over 500 friends on FB and still know and communicate to each and every one of them. I have learned that one cant have too many friends and acquaintances!

Environment/surroundings:

I have learned that my house is falling apart and has many problems but its still our home...its still a roof over our heads. Its still the first house that Tony and I fell in love with 16 years ago and made it into our home. Its where we brought each one of our babies home to...its ours. I have learned that Magic erasers are a miracle cleaning tool...along with Murphy's Oil Soap and 409. I have learned to not wash the floors BEFORE a party (duh...what was I thinking?!). I have learned that in our house...laptop computers don't last long. I have learned to wear slippers because old hardwood floors and ceramic tile gets really cold. I have learned that I can live without all the new gadgets, furnishings, clothing, outdoor stuff. I have learned to replace screens, use a leaf blower, Spackle like a pro, fix a garbage disposal and throw out clutter.

People in general:

I have learned that people jump to conclusions about waaay too much of things they know nothing about...but think they do. I have learned that there is still a lot of discrimination (against ALL sorts of people...black, Mexican, gay, and yes...even white), I have learned that looks aren't everything...inner beauty is electrifying! I have learned that rumors suck and words and bad actions really do hurt. I have also learned that there are very good people in this world that truly care and wont try to hurt you with words and actions and that nurses are some of the strongest and loving professional people around.

Preemies:

I have learned that some are healthy and some are not. I have learned that doctors really don't know what is going to happen as a micro preemie ages. I have learned that getting a g-tube was one of the best things we could have done. I don't feel stressed with trying to get him to eat even a couple bites of baby food when he wont. I learned that the eye surgery was also another great thing we did for Kenny. I have learned that although our micro preemie is three and a half, its like having twins when he and Gina are together...simply amazing. I have learned to be my child's (well, actually children's) voice(s) where ever and whenever need be. I have learned to expect the unexpected and to not make definite plans...ever! I have learned that having a 3" memory foam pad without a waterproof sheet when giving nighttime feeds does not make for a good mix. I have learned that breathing treatments twice a day for 3.5 years is just as annoying as the first time. I have learned that we have absolutely no more space in our house for all of Kenny's medical supplies. I have learned to expect the unexpected. I have learned that no matter how many times you wash your hands and use Germ-X and paper towels, chances are...they are still going to get sick. I have learned all the medical terms so maybe I should become a nurse...nah.

Large families:

I have learned that big families are the bomb (in a good way)! I have learned that my kids will never be lonely. I have learned that my kids LOVE their extended family...aunts, uncles, cousins...because we try and choose to keep them in their lives. I have learned that I really miss my family who live out of town...these gas prices and cost of living really put a damper on traveling. I've learned that eating out is just not worth it. I have learned that the house is always going to be very loud...and sometimes messy (not to the point of hoarders or child services messy, but just messy) until my OCD kicks in. I have learned that I make large amounts of food...but it all gets eaten. I have learned that when parents aren't around....in laws are just as good. I have learned that my kids are very well behaved in church. I have also learned that it really amazes some people that we have 7 kids. I have learned that laughing about our worries makes everything better. I have learned that I cant be the perfect parent that I thought I was...so I have just done my best. I have learned that Ground meat, pork & beans and noodles make a great dinner for very cheap! I have learned that I will never be completely caught up with laundry...every week I have about 15 loads...at least. I have learned to use coupons when shopping...and its actually pretty fun!

Life:

I have learned that its not what you have but what you make of it. I have learned to not count on anything but take each day...each life's surprise...with a deep breath and jump in with both feet. Also pray...pray not to get something or have something go your way (because I've tried that...it doesn't work), but for God to give you strength to get through.

Thanks for reading if you made it through. This new year should be interesting with all new learning circumstances!

Happy New Year's eve...

May you all be blessed with much love, happiness, great health and togetherness of family and friends...new and old! God bless you all...and remember those that couldn't be here to celebrate bringing in the new year...a new year of hope!

HAPPY NEW YEAR EVERYONE!

(please read my post before this one)

Goodbye 2010...and good riddens!

The year is coming to a close. There has been so much happening this past year...it just seemed to fly by! The picture above pretty much sums up our year. But notice...we're still smiling!


So much has gone on this past year...

There was us trying to sell our house then taking it off the market (which was a great idea because now we owe much less and it will be paid off before we know it).

There was us trying to get EM:HE to come to help our family then we ended up helping the family that was chosen (and had a great time).

Kenny hospitalized 7 times, 2 surgeries, 2 seizures, feeding issues, viruses, infections, RSV.

Laundry...

There were birthdays, births, weddings, vacations (not really ours, but...), and deaths.

There were family get togethers which were so much fun.

There was lots of heartaches with different life issues.

There were family and friends that we lost and miss terribly.

There was our ant issues, our broken appliances and...oh...the maggots (ewww)

...and laundry

There was the Cystic Fibrosis events, DreamNight for chronically ill kids and family, the March of Dimes walk (that Kenny was hospitalized during), Mom's nights out as well.

There was Kenny learning to walk...which is still so amazing to us!

There was the whole G-tube issue and now we are pros at it (see it wasn't anything to worry about).

There was the first day of school...Kayleigh started Kindergarten!

Did I mention...laundry?

So...this year I am sure there is going to me just as much excitement. I am actually looking forward to ending this year and starting a whole new one. One that is sure to bring much excitement, joy, interesting trials, fun times and growth!

We are having a communion for Sydnie, a wedding for my niece, a graduation for my nephew, a few new babies (of nieces and friends...lol), my husbands business is expanding (yay) in every way (see...hard work and dedication really does pay off). And Kenny will be doing more and more....getting stronger and stronger!

I say...

bring it on!

Goodbye 2010...you were good, full of hope. You blessed us with many things but also had many disappointments, health issues and many problems throughout the year.

With this new year I am hoping that it brings even more hard work for Tony and I (did I really just say that?!). We are here. We are strong, happy, and full of faith that this will be a great year for our family and for our friends!

We have many interesting avenues lined up along with loving and caring family and friends. This will be a great year!

May God bless and thank you those near and dear to us. Our family...near and far. Our friends...old and new. Those we never even met but have been rooting our family on this past year.

A special shout out to The Joyce family...you have shown us what a wonderful, great hearted, loving, amazing family yours is...thank you from the bottom of our hearts. We can only hope that we can follow in your amazing family's footsteps with the joy and kindness and generosity you all have shown our family. You will never know the gratitude that Tony and I have...the love that we have for you all. Thank you soooo much.

All of my friends that have been there for us this past year and the years before. You all have been there for us rooting us on. Giving us the encouragement when life was blah. Thank you, thank you...thank you!

I thank all of my readers of my blog for making my blog what it is today. I started it to keep my family and friends updated on Kenny and Nick...it had turned into a blog of what life is like in our family. What we deal with on a daily basis...from what the kids have/are doing to what is happening with Kenny and educating those who are new to the micro preemie lifestyle and all that it entails. To remember our precious Nick and help to give encouragement for others to keep going.

This year, Milestones for Micros are going full force, our family has many new and exciting things happening and so does our blog!

Stay tuned

...this year is going to be a great year for all.

Have a prosperous and joyous New Year!

(and don't forget to sign the petition for EMHE...send it to all of those you know!)

Stupid stickers!

I'm gonna jump in here and just bring up one of my BIGGEST pet peeves...

Produce stickers!!!

Seems...in a house full of kids...these pesky things just so happen to stick themselves to anything and everything that is around! I've asked each kid if they knew who...or what...put these stickers in various spots...over a period of oh...say...a few months...and no one know! So it is safe to assume that we are no longer having a problem with ants...it has turned to a sticker problem. I want to think that there is something I can do to stop these irritating things from adhering to things and places in my home...but have not found the solution. Sprays and traps don't work and the vacuum sometimes can suck them up...as long as the stickiness is mostly gone...

I did notice that they seem to lessen in places when the fridge is bare of fruit...so maybe...just maybe....

Nah.

I have captured these critters in their full glory over a period of a few months...enjoy!

Ahhh...this one gets the prize for the closest to the garbage...without getting in!I wonder how long it sat here before I noticed it. tee hee This one didn't even make it out of the refrigerator....
I do believe this one belonged to a grapefruit. A favorite spot for these pesky things to show up at, is the dishwasher...

They seem to migrate to the kitchen...hmmm...

Please tell me that there are others out there that have this problem. LOL!

*No fruit was hurt or harmed in the peeling off of these stickers...at least, I dont think so?*