Saturday, March 26, 2011

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 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.

Wednesday, March 23, 2011

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 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 can end up with a serious injury...but you know what? You'd still be'd still fight to live and want them to save you.

*I have to add that not only can this 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:

Tuesday, March 22, 2011

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 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.

Monday, March 21, 2011

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'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). to go...Kenny will be coming out to recovery soon!

Saturday, March 19, 2011

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 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. 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 matter what the outcome!

Monday, March 7, 2011

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.