Sunday, November 29, 2009

Kenny the fighter

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

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

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

Thursday, November 26, 2009

Small update

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

Wednesday, November 25, 2009

Prayers needed for Kenny!!!!

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

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

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

Please please pray for Kenny.

May God bless you all on this Thanksgiving.

Saturday, November 21, 2009

FOR SALE....

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

Friday, November 20, 2009

Fortunate Friday

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

Monday, November 16, 2009

The Fight for preemies....our story


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

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

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

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

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

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

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

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

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

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

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

Look what Kenny is working on doing!!!!

video

Friday, November 13, 2009

Thankful for hopes and dreams....and accomplishments

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

Wednesday, November 11, 2009

In honor of Thanksgiving....

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

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

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

Tuesday, November 10, 2009

Monday, November 9, 2009

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

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

Its a WONDERFUL life....maybe

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

Oh...one last thing. You all know that we have a squirrel that I have rehabbed...well, I have to share these pictures with you...Kenny really is not interested in too much...but one thing he is VERY interested in is Leo the Squirrel...The squirrel NEVER bites us humans, he is actually very gentle except for his nails. LOL
Anyhow, Kenny plays with him all day long...he loves to play hide and seek with him on the couch...I just think its the cutest thing...see...
Here is a video of Kenny and Leo playing (sorry for the loud tv)
video
And finally, I am going to be doing something for the NICU at the hospital where Kenny and Nick were born...I am collecting angel ornaments from everyone I can, to make an angel tree in memory of Nick, and all the angels that have put up a great fight for life...but ultimately went home to be with God...and also for all the sick babies, and babies that are born way to early...like my twins, to remind their families that there are angels watching over them all the time...that there is good that does come out of this...it may take a while, but there is. And finally, to give them hope for the next holiday season! So could you all please send angel ornaments...of any and all kinds...hand made, store bought, what ever.... to us. Pass this along to everyone you know!
You can e-mail me or leave me a comment and I will give you the address! Thank you so very much!
The link to this wish is below:
IT IS A WONDERFUL LIFE!