Friday, March 27, 2009

Accomplishments and Prayers

As I sit here this morning (while I have a few moments to myself) I am thinking of what should I write about? There is one very big accomplishment that Kenny has done and it is waving! Yes, he now waves on command!

video

(Don't mind the toys, Kenny was dumping them out everywhere...and my voice...well...getting laryngitis...just mute the volume...lol)

Its something that parents take for granted...I should know, I don't think I was this excited when the first 5 waved hi or bye for the first time...second or even 5th...but with Kenny...I am taking it all in. He finally is doing something that all kids do! He was not going to let his little sister, Gina wave first! Which, by the way, she is doing as well! HA! She is also getting into everything...crawling all over the house...I love it...she is also shaking her head "no"...which Kenny was doing just a few months back!

We are signing him up for the Toddler developmental program for kids that are delayed or have a handicap. I went last Friday to tour the facilities and let me tell you, it is just what Kenny needs! It would be a couple days a week and they work with PT/OT, feeding issues, sensory issues and anything else that he will need! I walked out of there, called my mom up and just started to cry. It just hit me that my kid is a special needs child. All the kids that I saw were interacting with each other, walking, talking, pointing to things....I asked the director..."what do you do for someone like Kenny who doesn't walk, talk, play with toys like they should be played with, interact with people, point to objects, eat." He seems so far behind than the other kids that I saw. He assured me that they will accommodate and help Kenny with ALL his needs. You know, as a mommy, I never, ever wanted this for my baby. I wanted him and his twin to be born healthy, happy and together. I dreamt of going to Twins Days with MY twin, my husbands twin, our other kids and Kenny and Nick. But that will never happen. I wanted Kenny to catch up to his "true age"...but that is not happening. I wont give up on him. I wont let him feel sorry for himself (that's my job...lol). It comes right back to the feeling guilty that somehow I caused them to be born so early...if I wouldn't of gotten out of bed to go to the bathroom, if I would of....I don't know...I know I cant go back and change things...GOD I wish I could! I am missing my Nick SO much...I am so thankful to God for giving me the chance to raise Kenny, I really am! I am grateful that God is letting me see how kids with disabilities, CP, Down Syndrome and chronic illnesses live, act, love and how their families cope. It proves to me that no matter what is wrong with a child, love them no matter what! God created them and lent them to us to learn from them. I learn from Kenny everyday...Yes, I wish my life was easy and we had perfect kids, the perfect house and money to buy extras, but we don't and I feel it is because God wants us to see what really matters...and that is family, friends, love, and faith.

This past week, Gina and Kenny both came down with a case of RSV (thank God for Synagis shots). The fevers, coughing, wheezing, runny noses, not eating, you name it. We've had sleepless nights because Kenny needs his breathing treatments every 3 hours or his breathing and coughing gets out of control. Gina is also on Albuterol, but since her lungs are healthy, she is fighting this off pretty good...crossing my fingers! So lots of coffee (even though I gave it up for lent...sorry God) and prayers are still needed that either baby (Kenny or Gina) don't end up in the hospital.

I want to thank all my readers and followers who have left such nice comments. It is nice to know that Kenny and Nick's story has touched so many hearts all over the world! Thank you for letting me share my life, my feelings with you all.

Sunday, March 15, 2009

So much to do, so little time

This week has come and gone...where does the time go? I have been very persistent with Kenny and his hearing aids...yay me! I vowed that he WILL get used to wearing them...and...as long as I am either holding him and keeping him busy OR sitting and playing with him, all is good...the minute I turn my back on him...to change Gina's diaper, get something for Kayleigh...oh...go to the bathroom...out they come. Very, very irritating, but I will keep at it and he will get used to them! I can just see how much more alert he is with them in. He turns his head at every sound and also notices the TV... it's so neat to see that he is finally understanding sounds around him. Now maybe duct tape would work! LOL! juuuuuuust kidding. Here is him with the cord to keep them attached if he DOES pull them off...
My neighbor is in the hospital and so is my husbands uncle. Both can use tons of prayers. Way too many bad things happening to the family and friends lately. Tony's uncle is also his God father...and we share our wedding anniversary with him and his wife. While my neighbor is in there, we had a very bad rain/wind storm....well it took down a tree in the back...the ground must have been soaked for such a big tree to come down...luckily no one was near it.
It missed my neighbor's swing by literally an inch! Jerry sits there with his beer and just relaxes after a day of working in the yard. I am hoping he will be coming out of the hospital soon, and be back to his old self again. My kids love him. He always takes the kids for tractor rides in the summer. He is a great guy. Here is a picture of the flower arrangement holder "a vase" that we made for him....Lets see...oh...Gina is now scooting everywhere! She also said her first word...."hi"! I kid you not...it's not Mama or Dada...my 8th child's first word is "hi". ooooooh kay! LOL!! She loves her newly found freedom of walking in her walker, sitting up and scooting...I love this age!

Tony had his last Cub Scout doing...the Pinewood Derby...his car kept coming in 4th...better than not finishing at all! It brought tears to my eyes knowing that my oldest son, my 1st born, is no longer considered a "kid"...he is going to be a Boy Scout next month...I am sad and happy for him at the same time!This is Tony holding Kenny while they were watching the races...my boys...gotta love them!

My nephew had his 11th birthday party on Saturday. Tony and Dominic are as close as brothers! I love the smiles on these two guys!

These updates are small because I am getting some sort of chest cold again. Seems like this whole winter has been nothing but sicknesses...I cant wait for the weather to start to get warmer so I can open all the windows and let the sick germs go bye-bye. We are still waiting to do the application video for EMHE. We are hoping that we can get it going THIS weekend..but we will see. It's always one thing or another...I hate not being able to get something done that is very important for us.

I think I am going to end this post early because of just being tired and sick...but here are some pictures of Kenny and my Kayleigh that I took today!

Tuesday, March 10, 2009

Busy...busy...busy!

Whew...its been a busy couple of days! Took Kenny to his GI Specialist appt yesterday...he is now on Zantac twice a day. We are going to have an x ray done to see his whole GI track and see if there is a problem with it and then we'll take it from there. He is still waking up in the middle of the night with almost an apnea episode...where he will be sleeping and then all of a sudden, gasp like he cant breath. Then he will start a coughing spell and from that, puke. I feel so bad for the little guy because I know he isn't getting a very good sleep. I am going to have to really try to keep his oxygen on him at night and pray that he doesn't rip it off...I really think he may need it. Last night we had to let him cry himself to sleep in his crib (which is in our room), because he just didn't want to lay down in our bed. I put a pillow over my head and well...he fell back to sleep. My poor little guy! So with him being up half the night, Tony (my son) woke up with his eye...yep...it tore. And when I say tore, I mean, his eye dried out and since he has corneal abrasions from previous tears, they formed scar tissue which is raised ever so slightly... his eyes dry out at night and then during sleep, if his eye ball moves the dried out cornea adheres to the inner lid and rip! There is a name for this, but I'm not sure what it is...he has this problem, I have it, my twin sister has it and my older sister, Renee has it...IT HURTS SO BAD...I would rather give birth without pain meds than to have my cornea tear! YUP....that bad! So he is up in his upper bunk screaming that his eye is ripped...and since he shares a room with the girls....THEY all start crying because Tony is making so much noise...I have Kenny in our room, Gina in the small white room and Morgan, Sydnie and Kayleigh ALL UP AND CRYING....the only one that wasn't up, was Taylor..she was sleeping in the white room with Gina, but had the blankets up over her head...snoring away. LOL! What a night...but I made it through!

I want to wish my nephew Dominic a very Happy Birthday... 11 is a big number! I was in the delivery room with my younger sister when he was born...I even got to cut his umbilical cord! What an honor! Love ya Dom!

Oh....Gina our almost 7 month old has her first tooth popping up! Very excited about that!

Friday, March 6, 2009

A little book that was given to me

I want to share a little book that one of my best friends gave me. She saw that I was feeling down from life's struggles, and thought that I would like/need to read this book. I have to say that this book is one of the best books I have read! I go back and reread it every night! It is getting me through these very trying times!

So thank you very much Denise for thinking of me and helping me. I was beginning to think that there is this good, luck twin/bad, unlucky twin thing that goes on in this world....Tony and I are both "twin A's" and it's weird...so is Kenny! We both (Tony and I) have had such horrible luck, in all aspects of life and it seems our twins (who we love very much...no offense to you guys) have such good luck, in every aspects. We cant seem to catch a break. Even on our "Honeymoon....we ended up going to Middleburg Heights...to a hotel. Even wearing shirts that said "Just Married" we didn't even get a bottle of champagne or even a complimentary piece of breakfast toast! LOL! I am hoping that this is just a fluke and there is no such thing as the lucky/unlucky twins....like "bizarro world or something. LOL Anyhow that is old stuff...that we just laugh off.

Anyhow, for all of you that have had a tough time in life, this book is a little light at the end of the tunnel...GOOD READING!

Kenny got his last Synagis shot of the year! Woo hoo! He gets one in each leg every month to prevent RSV...which could be deadly to him because of his lungs. He already got a slight case of it last month, but thank God, he didn't have to go into the hospital! I am PRAYING that next month, when he doesn't get his shots, that he wont get RSV... that happened last year to him...it sucked. Anyhow...we are prepared! HE goes to his GI specialist on Monday, hearing on Tuesday, and PT on Wednesday...busy week for the little guy. When he went into the peds office to get his shots, they had to weigh him....he was down to 19 lbs. 14-15 oz....so he lost some weight...I am hoping it is because he is getting taller...I hope! I got 2 jars of baby food in him tonight...Yay for me!!! We are trying to figure out why he doesn't want to walk...he can stand by holding onto something, but to cruise along furniture or walk with an adult holding his hands...no way. I kind of feel bad for the little guy! On the other hand...Gina is catching up quickly to him! She gets to where she wants to in her walker and by scooting all over the place...she is even out eating him on finger foods. I just have to keep in mind that she is normal...Kenny has special needs and will eventually catch up! He's got too...he Kenny! LOL!!!

I had a comment sent to me that at least I had a good childhood, and a place to live and the necessities of life...I would like to comment back....Yes, I has an awesome childhood. I didn't have the top of the line, expensive stuff and I shared a room with my sisters, but my parents were/are great parents. They have been through a lot in their lives and still were able to raise strong, confident children (in a slightly dysfunctional way) LOL!!! Yes I do have a wonderful husband who works his butt off for us, and so do I, in a different way (it's kinda like the 50's style marriage...husband works and wife takes care of the house and kids). What I don't post in my blog is that financially, these last few months have been disastrous...I wont go into details because it is personal, but we are lucky that , for now, we do have a home, a car, and the basics (and when I say the basics...its the very basics). Everything bad that has happened in our lives has happened in the last couple of years. We would never of had so many kids if we couldn't afford them...and we were doing a pretty good job at it, I must say! Hospital stays, doctor appts, and the economy takes a lot out of a person, emotionally, financially, and physically. Thank God we have a strong faith in God, our Church, friends and some family members. I am re-training my thinking about everything as to a learning experience and that this whole scheme of things from Nicks death (which I still feel guilty for along with all of Kenny's disabilities), to only getting needs over wants, to having a house falling apart in front of our eyes....just a setback...wont last. It's all in Gods hand and with positive thinking, I am praying that it will all work out in the end! Tony and I have a strong loving marriage and we love our kids dearly and we know this is all we need! There is no self pity, remorse, or whatever else....spring is right around the corner and I am using my sadness and life experiences to my full advantage by helping others who are just entering this journey of Micro Preemie parenthood!

On another note, I am starting my campaigning for the March Of Dimes walk on April 26 here in Cleveland. Our family Team Tomecko will be walking in honor of Nick and Kenny. We are looking for friends and family who wants to walk with us for this great cause because without the March Of Dimes, Kenny wouldn't be here today, and we wouldn't have had 2 precious days with our angel Nick. So if anyone would like to walk with Team Tomecko or donate, please let me know! Thank you very much for your support!


THEN & NOW

Monday, March 2, 2009

I hate being sick!

Well, this weekend was supposed to be the weekend that we were going to film our video for the application for Extreme Makeover Home Edition...but....I got sick. Oh yeah...fever, sore throat, swollen glands, and now I have this horrible rash from head to toe! I think I was misdiagnosed...I really think I have/had strep but the "doc in a box"(aka...med center) did the quick strep test and it came back neg...so...he ended up calling my condition "Sinusitis". Now anyone that knows me knows that for my entire life, I've dealt with chronic sinus problems...THIS is not one of those times. I can actually breath just fine...its the throat...unable to swallow ANYTHING since Friday! I'm on Biaxin, so hopefully that will take care of whatever this mystery illness is...and I wont pass it onto the kids or hubby.
Anyhow, back to this video that we are doing, we are really looking forward to doing it! We even a little surprise for the "goodbye" scene! If anyone that knows us would please help by making a small video clip as to why you feel we need EMHE to help us, please make one and send it to me via e-mail or something.
Nothing else new going on...Gina learned to roll front to back and back to front, sit up and she LOVES to eat! Kenny, well...he's still doing good. We had to let him cry himself to sleep last night because he wanted to play at 3:00 a.m....not good when you take Benadryl and NyQuil! He ended up not really crying, just complaining...then BAM...asleep! He slept till 10:00 this morning! Taylor slept over her friends house on Friday, and loved it. She never gets asked to go or even sleep over anyone's house, so she LOVED IT! Tony (my son), went over his cub scout leaders house on Saturday to do all the things he needs to do to get the "Arrow of Light"...which he then becomes a Boy Scout. *sigh* I remember when he first started in 1st grade! My baby is growing up! Morgan, well...she won a DVD player at the Kiwanis pancake breakfast raffle...Yay Morgan!
So that is about all the updates for this weekend. We are going to be busy all week with a bunch of appts. for Kenny. He has his hearing and PT appt tomorrow, and preemie clinic on Thursday. He was supposed to have his GI appt today, but because I am not feeling good, I rescheduled. That's about all.