Busy start to spring

Easter came up so quickly that I barely had time to prepare for it! For the past 7 weeks (Lent), I have made cupcakes (250+ each week) to sell at the bake sale at the school (that the kids go to) fish fry. Every Wednesday, I'd go and get all the stuff I needed to make the many different kinds of cupcakes/muffins. Thursdays were my baking days and Fridays were my frosting and decorating mornings...then delivered them when we (or my husband...depending on if Kenny was sick) went to work at the fish fry.

(These are double chocolate with a chocolate mousse filling) yellow funfetti type cupcakes with buttercream and strawberry frosting...

This was one weeks worth...red velvet, cheesecake, apple/banana, funfetti type and chocolate brownie with truffle topping... Mini cheesecakes (from scratch)...
Apple/banana with crumb & buttercream topping (yes...all from scratch)

So this weeks was the first week that I didn't have to make them. It felt like something was missing from my daily routine...but instead, I worked on t-shirts for the March of Dimes walk that was this past Sunday! Here is the t-shirt design which I transferred onto t-shirts...The back was this...

And here is the invitation that I made for Kenny's (and Nicks r.i.p.) 4th birthday party (notice the angel ;)...

Kenny's birthday party is also on the same day as Sydnie's (my 7 yr. old) Communion. I figured lets kill 2 birds with one stone (so to speak)!

We are getting ready for Sydnie's First Holy Communion (and party) Saturday. She has been so excited about this big day, that she is even telling everyone that instead of money, she would like a bible, books on saints and stuff along those lines. Yes, leave it to my Sydnie, the one who got all of the smarts in the math department. She loves to just sit and figure out math problems for the fun of it...along with reading. She will be an amazing adult with intelligence and compassion...along with a great religious belief! She will be reading a petition (in the catholic church...petitions are read to pray for different people and situations.) so she has been practicing her readings...well...heehee...religiously.

So needless to say, I've been cleaning like mad (this type of cleaning is more deep cleaning...it involves scrubbing walls, fixing up the house...that kind of stuff). With a house full of kids who loves to just throw their stuff wherever and whenever they want...its been a task. One that I am losing the battle on. So most of this "cleaning" will have to be done either on Thursday evening or Friday...along with the cooking and baking! Yes...I am attempting to bake cupcakes.


Not only are we celebrating Syd's Communion...we are also celebrating Kenny's 4th birthday! So this should be a very nice family get-together!

Here is the headpiece I made for her...

M.O.D. local Kmart ambassador...

What a busy yet very fun, morning we had yesterday morning! We went to our first of 3 Kmart stores (store #3278 in Garfield Heights) to meet and greet the employees and thank them for their work in helping with the March of Dimes. Kmart is, as some of you might know, one of the biggest national sponsors for the March Of Dimes and has been partners with them for 28 years!

Kenny is the local ambassador to 3 Kmart stores. We went to one on Saturday, went to one today...and tomorrow we will be going to the third one.

I have to say that the people that we have met are wonderful. They let us tell our story of Kenny and Nick, took pictures and just had a really nice time.

Of course I made cupcakes...lots and lots of cupcakes...between Saturday and today (Sunday) over a hundred...all decorated in honor of the March of Dimes...Here is Kenny and the poster that we made for Sundays store (Seven Hills #3013). We added a written thing to it along with many pictures of Kenny...including his hand and foot print copied at actual birth size. I am glad that we wrote out his/their story because their store was pretty busy and we didn't get the opportunity to talk to the employees...but that's alright, they were really sweet about everything!Tomorrow is the Bainbridge store (#8792)...I'll be posting more pics tomorrow. Anyways...we are honored that Kenny was chosen and we greatly appreciate all the employees of all the Kmart stores for their dedication in helping the March of Dimes. Without the March of Dimes, Kenny would not be here today!

And finally...after a long day, Kenny and Gina needed a nice relaxing bath and came down stairs to surprise me looking like this....*yep...an awwwwe moment*!

Even the smallest miracles do exist!

When you lose a child....

When you lose a child, it's like an out of body experience... your whole life changes. You pray, pray, pray that it's not happening. You beg, plead, cry, scream and go numb...then when you think you're done, you start all over again. Its everyone's worst nightmare...but it happens...it's happens. I've always wondered why us? Why did this "nightmare" happen to us? Were we just randomly picked by God...kind of like the lottery of heaven? Were we chosen because God wanted us...needed us...to know something? I honestly couldn't say. When you lose a child, no one wants to talk about it after it happens. It's almost like, if others mention the dreaded D-word that it will bring up sadness and reminders...when in fact people don't understand that everyday is a reminder after losing a child. Everyday! Even 4 years later...there is sadness and reminders. Sure, you think you are doing just fine. You are finally feeling again, and then BAM...out of the blue, you get sucker punched....and the hurting hits hard. When you lose a child to prematurity...let me start over on this...When you have a pregnancy that, from the start, is threatened, those months of doing everything in a mothers power to protect that baby...those babies in my case...becomes first and foremost in life. They(doctors) call it "a threatened miscarriage...or abortion". But wait, I WANT this/these babies, it can't be an abortion! But nonetheless, that's what the medical term is. So you plan on weeks...even months of bed rest...anything to ensure the health of this/these babies. Then the dreaded day comes...weeks...no, months too early. You beg, you plead, you make deals with God to let them be alright...and then you go numb. Then the "out of body" thing I was talking about above kicks in....and then...then your looking at a whole new life, a new you.

In the NICU you see your baby/babies and you wonder how could something so small survive. You don't get to hold your baby like a mom is supposed to be doing...instead, you are looking at them through an incubator. An incubator with tubes and wires. There is machines for everything...including a machine breathing for your child. How can this be? Why did this have to happen. You prepare for everything...yet nothing seems to prepare you for this. There are going to be hurdles and obstacles to overcome...words you've never heard of, phrases that are like a different language. Infections, operations...this and that...so much to take in, yet you have to...you are now on the roller coaster that they call the NICU.

Then for us, the worst happened. The doctors tell you that they cant do anymore. Then you beg, plead, scream, cry and then go numb...we lost our child.

We heard it all after that..."well, at least you still have one." Or, "God has a plan for everything...it happened for a reason." Even after four years it is still being said. Sure...I have made this nightmare that we have faced into something positive because I dont/didnt want my son to have passed away without any meaning. I have turned Nicks death, our loss, Kenny's disabilities and chronic illness into helping others. I have put up a brave front and forged on...for my sake and for the beautiful lives of Kenny and Nick...but I just sometimes get sucker punched...out of the blue.

This time of year hits me hard, and to have wanted something...my twin pregnancy, my twins to live so much...even after a chance of a miscarriage at 7 weeks...even after bleeding at 15 weeks and even after bed rest at 21 weeks...I tried my best...and it just wasnt good enough. Still feeling mommy guilt after 4 years. Then to be around people (family)pregnant with or who have twins...and to top it off...play it off like I was never pregnant with twins...hits hard. DARN IT....I am a mommy to twins...just now, I have one on earth and one in heaven! I know what it felt like to feel 2 babies inside kicking and moving. I know the feeling of looking at not one baby I gave birth to, but two babies. I HAD TWINS. Its not fair, its not what I wanted....this nightmare...these feelings are not what I want, yet I have to live with for the rest of my life.

And to top it off, not only do I have to deal with that, but the fact that my son is not like other kids his age. I get to experience a whole other "bigger experience" of having my son looked at by other kids and asked whats wrong with him. I get to see how far behind developmentally he is to others. How he cant talk. How he gets frustrated with things. How he acts differently than other kids. I get to go into panic attacks every time he gets sick. I get to go on "house arrest" with him for fear of him being around people and getting sick. I get to get that sick feeling of begging, pleading, screaming, crying and going numb with him when there is a new problem or just thinking about the future. Sometimes I think that it would have been easier if I would have lost the pregnancy early on (like I thought I did) to miscarriage....but God never promised an easy life. I will never stop missing my Nick. He was alive. He was real. But as the days and years go on...the memory of the way he smelled and looked are slightly fading...which makes me sad. I remember holding him and smelling him and telling him that I'd never forget him...

Every day there is something that reminds me of him...and that something is Kenny. At the same time, my heart breaks for him too. I don't want him to grow up different from others...yet I know he will. I don't want him to die early...yet I know that is a real possibility...and I am scared and sad (there, I said it).

When you lose a child, it hurts.

The last couple of weeks....

Talk about things happening all at once. There has been way too many deaths of friends and acquaintances. Its kind of bringing us down a notch and facing our own mortality.

Saturday we were getting ready to go to a memorial for a wonderful teacher of mine...yes, some 20+ years ago...but that is how much of an impact he made in my life. He was the choral director of the Girls Glee Club and Men's Chorus...and together...we were...The Heights Singers. When I was in it, I had the honor of being Art Chairperson. Basically it was my very first job...and he was my boss. He taught tough love....oh boy did he...if you talked during rehearsal, you'd either get a glare or he'd stop everything...embarrassed the s*** out of you and make you go out in the hallway. But he was also very dedicated to all of us. He was like a second dad while in the throws of high school...with all the problems that come from age 15-18. We'd have 2 concerts a year...maybe a musical...and tour (we went to Ottawa Canada, Boston, and...oh, see...my old age showed up. I cant think of the third place we went during the 3 years I was in it)during Spring break. It wasn't even a thought that we wouldn't be in "The Heights Singers", because all of my older siblings were in it while they were in school...it was only natural that my twin sister and I would follow in their footsteps. It was something that we grew up knowing and wanting. Going to their concerts and thinking...wow...how can one man direct 150-200+ people to sing perfectly together...and also do some dance moves...it was much more than a regular high school choral performance...it was magic that they created! See, The Heights Singers were so important in my life, that my entire high school years were all about Singers...all my friends were in Singers...so with today's technology, I reconnected with most of them...LOVE IT! So after hearing of his passing on Facebook, I just knew that I was going to be there to let him and his family know how important he was in my life. I knew I wanted to bring my kids to see how important...even after all these years...a teacher could be. So with that...we all went...and it was beautiful. There were so many people there. Many of which were his students...he directed for 30 years...that's 30 years of 200+ kids! Those that could make it were there...and what we did was perfect for Mr. Thomas. At the end of each spring concert, we'd all sing Let It Be Me...by running out into the audience and he'd ask all of the alumni to please stand with the Singers and sing with us...so there you'd have an entire auditorium circled with singers, old and new, singing this song that grew on each and every one of us. It had meaning to all of us...and after all these years...it still has meaning. Thank you Mr. Thomas for everything you have taught me. For the most wonderful (and some not so) memories of my high school years. I strongly feel that without Mr. Thomas and the Heights Singers, I wouldn't be who I am today. He/they were high school for me. I can only hope that Mr. Thomas was watching and that he understood what an impact he had on thousands of kids that he taught. The memorial was such an uplifting one...one that honored and celebrated the life of a man...not his death.

here is the video link....just click on this.

Here is Mr. Thomas and the Heights Singers...singing this song in 1974 (I think) , with a whole scrapbook type look back at 30 years of his devotion to all of us students!

So, as we were getting ready for that, my husband got a call from a friend/coworker that his friend/mentor passed away. WHAT?! Can this really be happening?! This man was the nicest, most sincere person we know. He helped us out when we needed help (the dryer), he and his wife would come over around Christmas and give the kids presents. And he was just such a great friend and mentor to my husband. My husband feels so bad because he was going to call him and ask him to lunch...and never had the chance. He was very special to us and will be deeply missed.

So this week, we will be saying goodbye to him as well.

And the week before that, my husbands other friend died from pancreatic cancer...at age 46. Last month, another friend passed...he was older gentleman who lived a long and fulfilling life...but still...he too was a good friend and one that would be there for you if you needed something.

My heart is heavy with all of these passings, illnesses and bad news. I know in my heart that they are watching over all of us and one day, we'll see each other again but in the meantime...they had all better be looking after our Nick up there, in Heaven, and keeping an eye on everyone that misses them. We need to celebrate the lives of those we lost. We need to live each life to the fullest....helping those we can help, talking and listening to those that need a friend...go beyond and out of your way to make others happy...because you just never know when your last breath on this earth will be...when the Lord will call you Home.

I feel that all of these trials are really making me closer to God...with just that much more understanding towards what really matters in life. Family, friends, love, laughter, helping others, following your passions and showing compassion and understanding....

We will forever miss you all that have passed away...thank you for the great memories and friendships!

God is amazing and will never leave us.

Released from the hospital...5 loooong days

Finally getting a chance to catch up on what all has been going on with our Kenny. On Wednesday, he finally got discharged from the hospital. It was a long 5 days in there. My motherly instinct was right...get him in there...We found out that he had RSV.

(these pictures were after his fever broke)Friday and Saturday nights were bad. His oxygen sats were in the mid 80's. We tried putting a nasal cannula on him (for oxygen), but he wanted no part of that. He ripped it off of him quicker than we could get it on him! So...what did we end up doing? Well, while he slept, we made sure he had a blow by blowing in his face. It helped him so much...but it also kept me up all night with him. The minute I heard his alarm go off, there I was, putting the oxygen by his face. Then we got the usual crazy stuff happen while there...bloody nose from too much suction (cleaning snots), the usual...pulling out the tubing from the IV. Oh...and let me tell you...they got a great vein, those nurses. The one night, he pulled out his IV, so we (the nurses) had to put a new one in...then, on Sunday, he decided to pull the tubing out...blood everywhere...and lots of it! And there you have me holding and applying pressure to the IV site so the blood would stop pouring out...the needle was still in...he just pulled the tube out! And then, finally, you have the puke and the occasional G-tube leak. All in all..it was a pretty uneventful stay...hahaha! His temperature broke the second night (thank goodness), and the cough and boogers are still going strong.

A huge shout out to my niece and sisters. Thank you for helping us out so I could be at the hospital with him. He really hates being left alone there anymore...as I HATE leaving him there..alone. Ugh...it breaks my heart! The nurses and child life were wonderful...with letting him play with toys and keeping him company. By day 4, he was feeling much better (minus the continuous snot supply in his nose) and was back to lining up his cars and blocks.

He also found a new use for those tubs that they use for sponge baths...a hat!We also found out a little bit more of what we are dealing with with him. I honestly thought it was just going to be a "oh, he's just a micro preemie." comment...and really wish it was that...but instead, we ended up getting so much more. I will update when I talk to his neurologist and Comp. Care doctor next week. I want to make sure I understand everything that they have found. There was mention of Microcephaly (which we already knew), a cyst and a small cerebellum, along with him needing hemoglobin transfusions (his body isn't absorbing vaccines and his red blood cell count is low)...but like I said, I'll post more when I know all the details.

I am just very grateful that he's home and back to his old self...minus some coughing. His smile brightens up my world!

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!

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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!