Friday, April 30, 2010

Just a few updates on Kenny

Yesterday morning we (Tony and I) had a meeting with all the teachers/therapists/special ed teachers that will be working with Kenny. The appointment went really well. Kind of overwhelming with all the talk of what he needs and what he'll be getting, in terms of his therapies and education. He is approved for 4 days a week, 2 1/2 hours a day for special ed/preschool. They will be working with his severe hearing loss (click on the highlighted words to see the web page that shows what it is all about!)by teaching him signs, and working with him to start forming more words to show us what he wants. They are also getting a FM system for him personally. They worked out an IEP for him which includes cutting with scissors, riding an assisted tricycle, climbing, following simple directions, etc... He will be going the month of May for OT/PT/Speech and then starting in June, he will be going to "summer school" .They evaluated him at being between 8-18 months of age developmentally. I am very sad about this but so happy that they are going to help him and work with him to get where he has to be.

Now on to his weigh in at the hospital...

He lost weight.

The doctor mentioned to us that we are going to have to throw around the idea of a G-Tube. His head/brain is just not getting enough nutrients which he needs to develop normally. So, it doesn't really have much to do with his does, but they are more worried about his brain development. I am very scared about this. I know this is the best thing for him..I don't want him to grow up without us trying everything we can to give him the best life possible. I don't want him to be so developmentally behind that he cant do anything for himself. I want him to be normal...God...I just want him to be normal. He had lab work done...6 vials of blood...and he didn't even cry! They will be testing and looking for anything and everything from Cystic Fibrosis to allergies. He will be going to his cardiologist appt in a few weeks and then at the end of the month, we will talk about what to do next. It could be that his heart is causing the lack of weight gain, sick all the time...etc. So we will see what the future holds this month.

Kenny graduated from the Help Me Grow program and is now a 3 year old (well, tomorrow)! There are so many people that have come into our lives because of Kenny (and Nick). The women from Hospice, Barb from the Board of Health...his service coordinator, the therapists that worked with his PT/OT here at home, also Anedra from Regional Infant Hearing Program... OMGosh...all these people AND MORE, have helped us go through the first 3 years with Kenny and how to deal with the death of Nick. Simply amazing! So for those that are just new to the journey of either losing a child and/or having a micro preemie...PLEASE use all your resources! There are people out there that will help you get through this new lifestyle that is ahead of you!

I just cant believe that Kenny (and Nick) will be 3 tomorrow!

Wednesday, April 28, 2010

This week is the hardest for me

For the next few days, I am going to be writing some thing to honor Nick and Kenny's birthday and Nick's passing. For me, this week is a tough one. Every year for the last 3 years and for the rest of my life, on May 2nd I will always remember...more than just a normal delivery of a child full term child. I gave birth to my twins at 23 weeks gestation (17 weeks early). 1 pound 7 ounces.

It made me fall to my knees. It will always make me wonder. It is a time of excitement and fear.
It is Kenny and it was Nick.

Three Years Ago...

3 years ago seems like yesterday.
I can remember each moment...
I can remember each second.
praying so hard,
not knowing what else to do.
How could this be happening?
What was our future shaping into?
The feeling of life...
every movement,
every kick, was so wonderful.
The reality of it all was just so against us.
God, it was happening...
we were going to see you both.
The uncertainty of what was going to be...
The unknown...
was so numbingly real.
To be so excited and happy about having you both...
yet knowing that the odds of survival were so, so low.
What were we to do?
I cried,
cried until there was just nothing left.
I prayed,
prayed but was so sure God abandoned me.
Five months of praying,
it came down to this very day...
This very moment.
The cut left a scar more than just physical,
much deeper than that.
Taking you both from me,
knowing that it wasn't in my hands now...
you were in Gods hands...
you always were.
To get excited like other new parents of twins,
it didn't happen.
In recovery, I sat there
numb...just numb.
Do I pray for your forgiveness?
What else was there to do?
What else was there to feel?
Laying my eyes on you for the first time,
God you both were perfect.
So shockingly small, but so perfect.
Couldn't touch you,
couldn't hold you,
didn't know if you'd make it through the night.
Brave little boys, my brave little boys...
God blessed me with two perfect babies
that were just born too early.
What was the reason?
Show me why God.
Then He did.
He showed me,
he showed us all.
No matter how small,
He makes no mistakes.
Through triumph and tragedy,
tears, pain, laughter and happiness...
He makes no mistakes.
Three years...
Three years He has shown
how beautiful life can be
and also how delicate it is.
We celebrate life.
We celebrate our twins,
One in Heaven and one on Earth.
We celebrate the smallest of miracles.
We celebrate the accomplishments, the struggles,
the smiles and the painful tears.
Life is a struggle.
Its not easy
not knowing...
not knowing what tomorrow or even the next hour will bring.
Still searching for the reason,
but understanding
its all in the hands and plans of God.
Three years ago
Three years ago you made my life forever better.
harder than most,
but so much better.
To see things from another view.
To have helped and to be helped.
Been hurt and scared.
Hurt by seeing you helpless, sick and struggle...
and scared of losing you
and scared for our family
your brother and sisters.
Scared that they now understand heartache.
Heartache of loosing a sibling
Heartache of watching you sick so much.
Scared for what tomorrow holds.
The people...
The people that have walked this journey with us
amazing to say the least.
I would never have known this life,
the people,
the caring loving people...
the true value of life,
the true value of family and friends.
Others that are struggling with illness and disabilities,
disabilities and illnesses that could change life in an instant.
The loving smiles,
kind gestures
and knowing we're not the only ones.
We're not alone.
Seeing that there is more in life.
more than just
trips, money, and materialistic things
Our big family has love, understanding, acceptance and faith.
We are also gaining courage.
No matter what tomorrow holds
for you and your brother and sisters...
I will hold your hands.
Help you through each day.
I will laugh with you,
cry with you...
wipe away your tears.
I will push you to do your best,
and pick you up when you fall.
I will be stern in your daily medical needs
but also let you be a little boy.
I will not let you forget you are a twin,
but let you move on as an individual.
Be proud of who and what you are here for.

Three years it has been, three years in our lives and hearts.

Thursday, April 22, 2010

Immunology and Pulmonology

OK, so latest update on the Ken-man. We went to the pulmonologist/immunologist yesterday...very good appointment! Great doctor. We are taking him this afternoon for blood work and a urine sample to test him for EVERYTHING...from Cystic Fibrosis to allergies, We are leaving no stone unturned as to why he gets sick all the time with upper respiratory infections and sepsis. He is setting up an appt for Kenny to see a cardiologist because he said that it was 3 years too long that he has been seen last by one. He had a PDA ligation at 7 days old to close it, but he has also had a heart murmur...and with all his symptoms, he feels it best that he gets his heart checked out because it just to make sure it's still closed and that there are no underlying heart problems...I have been worried about this for about a year now...I guess it is mothers intuition or something.

He also is putting in an order for Kenny to get his eyes fixed! He had ROP stages 2 & 3 while in the NICU and had laser eye surgery to correct it. But now his eyes are starting to cross and stay crossed more and more.
So overall, a great doctors appointment!

And while I was there, I was asking him questions about me. The ER diagnosed me with and upper respiratory infection (acute bronchitis) and Pleurisy...well, I've been on 3 rounds of antibiotics and nothing. He wants ME to see a that is what I'll be setting up later on today. They are leaning towards the pneumonia side of it, but the one hospital that I took the latest x-ray at, lost my x-rays...LOL. I am hoping its not Pneumonia and its just this stupid pleurisy and infection, but I really feel the worst I've felt in all my life...I did get my voice back (for the most part). I don't have time to be sick, I really don't. Waaay to much to do and people to take care of.
We are headed to the time of year that I dread. April 21, 2007 I went into the hospital on total bed rest...for 2 weeks I was scared to death, prayed and begged God to keep my twins safe. May 2nd, I had them...2 days later, Nick died and then on May 11th, we buried him. Here I am, 3 years later, I wish those weeks never happened. This used to be the most beautiful time of year for me, flowers are out, warm weather after a bad Cleveland winter, Mother's Day, Communions...I loved it is all just a bad reminder of what I never wanted to happen to me. I am sure, in time, these feelings will not be as strong. My Kenny is here, alive and that is all that matters. And my precious angel Nick, I just wish I had the opportunity to see him grow, like Kenny...get hugs from him, see him smile, open his eyes...I know everyone says that God only gives you what you can handle....I wish he would have had a little more confidence in me to be able to care for Nick. But on the other hand, he is with my brother and all of the other family and friends who have gone before us and from what I heard, its supposed to be a kick-butt place to at least I have my beautiful memories of him, holding him, talking to him. I know Nick is totally watching over Kenny and helping him through all the tough times that have happened and will happen to him...that brings me comfort.

Tuesday, April 20, 2010

another update on LL Cool K

He is home! He came home on Sunday afternoon. His fever broke and he was starting to drink his bottles. What a very scary couple of days! We thought for sure that he had sepsis again...but nope! Basically he had an infection and virus that caused a very high fever which triggered his epileptic seizure. So from this point on, I am going to be a nervous wreck every time he gets sick. Our saving grace is that he was allowed visitors this time around. They upped his Trileptal dosage a little bit and that is pretty much it.

I can only hold my breath and pray that his next seizure will be easier on me. It really took a lot out of me, especially since I have been sick with this horrible upper respiratory infection/pleurisy thing. I am exhausted beyond belief, I have no voice and am in pain...but hey, if my little fighter can pull through what he has gone through...and still smile, I can too! The housework is slowly getting done, the laundry too. We have doc appts after doc appts to start going to just because he and I have been so sick.

Which brings me to another point...

We need donations for the March of Dimes walk this Sunday! I know there is only 4 days left, so any amount would do! This is going to be our second walk and we are all very excited about it. So anyone out there that wants to would be greatly appreciated! :)

And on to other news...Gina is babbling, very cute I might add! I kinda missed this part of toddler hood. Kenny hasn't gotten to this point yet, so its so cute to see this.

And finally, on the Extreme Makeover Home Edition news...nothing yet, but even if there was, we couldn't say anything...(so if any of you readers out there want to send them an e-mail or regular mail...please do so)...we moved out broken dishwasher out to find this...
See, looks don't mean everything...its what is hidden behind the nice cabinets...UGH~

I can just imagine what is under the sink part (on the left). Not only is there rotted wood, mildew and mold, but we have ants galore! niiiiiiiice

Thanks for reading my blog. I really, really appreciate it. Sometimes I need a place to write out my vents. Thanks for listening to my rants and rave.

Heaven's Very Special Child

This was given to my husband from someone he met with today who also has a special needs child...I just wanted to share. It brought tears to our eyes...

Heaven's Very Special Child

A meeting was held quite far from Earth
it was time again for another birth.
Said the angels to the Lord above...
"this special child will need much love.
His progress may be very slow,
accomplishments he may not show.
And he'll require extra care,
from the folks he meets down there.
He may not run or laugh or play,
his thoughts may seem quite far away.
So many times he will be labeled...
different, helpless and disabled.
So lets be careful where he is sent,
we want his life to be content.
Please Lord find the parents who
will do a special job for you.
They will not realize right away,
the leading role they are asked to play.
But with this child sent from above,
comes a stronger faith, and richer love.
And soon they'll know the privilege given,
in caring for their gift from heaven.
Their precious charge, so meek and mild
is heaven's very special child."

Thursday, April 15, 2010

Will this nightmare every end?

There is a reason why this blog has been so dead for the past week...a whole lot has happened. I've been feeling kinda crummy, so on Sunday I went to the ER because...well...when you cant catch your breath, get dizzy trying to breath, pain in the lungs and laryngitis...I figured I'd better get looked at. Come to find out that I have an upper respiratory infection, acute bronchitis and pleurisy. Ouch. So finally they gave me antibiotics and pain meds and sent me home. Its been a looong week. I have been exhausted. All I want to do is sleep, but laying down hurts my lungs. I have so much to do, that if I do rest, I am afraid I wont get up...really! I've also been worried that Kenny was coming down with something, even as far back as last Friday. I brought him in for his weight check and I mentioned to the doctor that it seemed like he was coming down with something. He was doing the post nasal drip gag sounds he makes (when he gets sick) and had a cough every once in a while. So fast forward to Tuesday night. He started this coughing at night...nothing major, just a little cough. By Wednesday morning, his nose was running like crazy. I put a call into the doctors at his Comprehensive Care and told them that I was concerned and that he was shaking like crazy, wasn't sure if it was small seizures or not...but then I decided to take his temp and it was 102. Ahhh...duh....THATS why he was shaking...fever!!! So they told me to switch off giving him Tylenol/Motrin, which I did. It broke the fever and he went outside(on the deck) to play...he was feeling pretty good. He didn't want to lay around or anything. About 7:30 pm, he wanted me to hold him. I changed him into his pj's and gave him a bottle, rocked him on the rocking chair where he fell sleep. My sister Andrea and her son, Dominic came over around this time...which she never does on a school night...I laid him on the couch to sleep (still no fever). Now, keep in mind, Tony, my husband was at the school in a not working there. At about 8-ish, we both(my sister and I) happen to walk into the living room and looked at Kenny on the couch where he was staring upwards. We both looked at each other and Andrea asked if he was alright...I wasn't sure until I went over to him and tried to snap him out of it. Then at that point, I knew he was having a seizure. He was burning up and just staring. I walked around holding him upright for a while (i was panicking, crying...not very brave)...we had little Tony and Dominic call 911 and I then gave him his Diastat, which I honestly never thought I'd have to administer to him. I stripped him down of his clothes and Andrea threw me a bag of peas to put on his was horrible. The ambulance came and I ran him out to them instead of waiting for them to come in. The paramedics were the same ones from when Kenny had his seizure in November...they remembered everything! I just have to say that they were Awesome! I sent Tony and Dominic up to the school on their bikes to get my husband because he had no clue what was going on. I was trying to stay calm and remember all the meds...of which I know now to type something up (which I am doing today) that has ALL of his meds on it and All of his diagnoses on it. I was trying to remember everything and some things just came up blank! UGH!

Anyhow, he is now at his 2nd home, MetroHealth. On his favorite floor with his favorite nurses. When they wheeled him up from the ER (he was still really out of it) all the nurses were welcoming him back. It was cute.

They took tons of blood and swabs to culture to see what type of infection there is and where. His fever has been coming and of last night, it was 102 and steady. So that is where we are at this point. His lungs sound and look clear...thank God, so its just a matter of trying to figure out what is going on with him. One thing is for sure, we now know one of his epilepsy triggers...a fever/virus.

I haven't been able to sleep there because I am so sick, so leaving him is just killing us! This whole thing...very overwhelming. I know that there is a reason for this...not sure what, but there is. Tony and I are becoming very tough skinned when it comes to things. Heck, I even hold Kenny's arm when they need to put an IV in him! LOL. We don't need anything but if you could just say a prayer for Kenny, that would be very deeply appreciated. The poor kid has been through more in his almost 3 years of life than any adult I know. We could also use some prayers as well (Tony and I). There are people in this world that have no clue. No clue as to what having a chronically ill child with disabilities is like. The terror in when he gets sick...not knowing if he will die (this time) or not. The countless nightmares, the being torn between hospital and having to work and take care of the other kids and the house. My sister Andrea finally saw what we go through...I feel bad that she had to see Kenny have a seizure...its very very scary. It's like looking at my precious little gift from God and seeing him being taken from me. We are exhausted. Emotionally and physically drained but wont let this get us down. I am very grateful to her for being here when it did happen. I was so scared.

Thursday, April 8, 2010

Easter 2010

So I sit here unable to sleep. The thoughts of Nick and his dying in front of me keep haunting me. The thoughts of Kenny needing more, the other kids needing just so badly weighing on me. I know that at this point, I need to get respite in to help. To ask for outside help is so hard. I keep trying to think that I can do it all...I mean, I am the mom, I should be able to handle all my kids...including one that has special needs, but I have come to the realization that I cant. I am not supermom. I am a human being that has been through he** and back...and not to my doing. All circumstantial...isn't that so typical? We have been approved for well over a year now for respite care and I fluffed it off like...yeah...we need it. ha....well...who would have thought, we really do. Kenny IS learning. He IS doing more and more each day. But, I have also noticed that he is different. The other day, I sat and watched him for a good 15 minutes taking socks and putting them in one pile...then taking them and making another pile...and then taking them and making yet another was very cute to see...he was so, so busy making pile after pile...but so not normal. Then the next day, he had pieces of paper and was doing the same thing! So that is where his Autism is rearing its ugly head. Makes me so sad. On another note, he has been eating a lot more. Well, today he only wanted 1 jar of baby food...but for the last 3 days he's been eating about 4-5 jars (6 oz) each of stage 3 baby food! HUGE STEP!! He also learned how to show "1" with his hands...very cute I might add. Still banging his head when he gets irritated and still throws his fits during the day...but I have learned to just hold him and rock him in the rocking chair or try to redirect him to something else...seems to work most of the time. To take that first step to getting respite a kick in the gut. But in order for myself, my husband and my other kids to be happy and healthy, we have to have some sort of help. Even if it is for just a few hours while I help the other kids with their homework or take them somewhere special or to have time for myself. Like I said on Facebook...I am feeling a little defeated in this aspect. I am a mom of 7 living children, I should be able to handle it...but I cant.

Never in a million year did I ever think I'd/we'd be in this situation. I am grateful that God thinks we are strong enough to handle it...and I guess, in a way, we are...I am up for any challenge...but a break would be nice every once in a while.

I had a few people on my FB acct. send me some pretty bad e-mails...I wont go into detail, but it was because we helped a few neighbor families that needed help...and we WANTED to help them...well, these people decided that just because we had so many kids and couldn't afford the better things in life for our kids, including food, why should we be helping others. And another was that we shouldn't of had so many kids if we couldn't care for them the way they should be cared for...well...lets see... the last time I checked, Do unto others as you would have them do unto you, was one of life's greatest sayings. If you just reach out to others...OMG it is such a good feeling! Yeah...we don't have tons, but...we have enough to live and help others that are struggling more than us! Tony's slow season is over...things are picking up (thank God). So we ARE in a position....not great yet, but we can always help our neighbors or strangers down the street. We had people help us, still help us...we want to just pass the good will, the kindness on, that's all. And to all of my FB friends and family, thank you so much for your support. It really makes Tony and I feel so much better that we know we have backing by all of you! enough of my wallowing in self pity....on to our Easter and other stuff...
Easter was pretty good. We made a couple of Easter baskets for the family down the street...the kids and parents were very grateful...and we loved helping them out! The Easter Bunny did good this year...not too much candy, just enough! H also didn't put the trail of candy from the bedrooms to the downstairs this year either, which is a family tradition, but because of a slight ant problem, that I was squeamish about, we asked the good ol' Easter B to hold off on the trail this year. LOL).

We did eggs...8 dozen to be exact. And it was very fun! I really miss the swirl eggs that we had when we were growing up, but I guess they don't make them anymore...bummer!

Each kid got a dozen plus, and STILL wanted to dye more! LOL!

As of today (Friday), we still have about 3 dozen left...God I hate hard boiled eggs lol! One can only eat so many before getting sick of them....yep, hit that point...thanks for asking! LOL!

I have also come to the realization that I really need a restaurant style oven...I have no cook top space! I made stuffed family's favorite and sausage and sauerkraut with an Italian flair of Gnocchis!
(This picture of the sausage/sauerkraut is it only halfway cooked)Tony took the older kids to church while I stayed home with Kenny and Gina (I cant have Kenny getting sick from close contact of tons of people). We then ate our huge dinner, went to the cemetery to visit Nick and then to another cemetery to visit our neighbor "uncle Jerry" to the kids, and then over to Tony's sisters house. It was a beautiful day out. Warm and sunny with all the spring flowers all in bloom!
And finally, This beautiful quilt was made for Kenny by the loving, caring people of Love Quilts. They have people from all over make a square then they are put together and made into a very beautiful quilt for children with life threatening or life long illnesses. May God bless them! One of my favorite squares is of an angel holding up a little boy on skates!

Saturday, April 3, 2010

An Easter understanding

I for some reason, feel very at peace this Easter with Nick dying after watching this video! I feel very blessed and kind of honored, to have felt the pain, sadness and helplessness of which the Blessed Mother felt when her son, Jesus suffered and died. Knowing that there is something more (well at least, hoping and praying) beyond this life. Holding my son as he was dying and telling him that it was OK, that Mommy and Daddy loved him so much that he should go be with Uncle John. I at least got to tell him that I loved him and got a chance to hold him. Jesus died for me so I can experience that very moment with my son Nick. If there is anything to gain from the death of a child, no matter what age, is that the Blessed Mother felt the same way. There is life after death...for us living and for the loved ones that have passed on.

We plan on going to the cemetery to bring a basket and flowers to my son who was to precious to be here on earth with us and was chosen to be with God in everlasting life!

May your Easter be filled with many blessings and small miracles.

Never forget those that have gone on before us... they are miracles that made up us as caring and loving human beings! God bless you all!

Happy Easter! Pictures of the Tomecko Family Easter to come!