Feeding evaluation diagnosis and more

Wow...so many updates to talk about. Lets start with...me. Ha. My twin and I turned 40 over the weekend...wow...the big 40. Why does it seem like just yesterday we were celebrating our 20th?! So much has happened in those 20 years...been with our husbands for that long...had kids, pretty much became adults...wow. Some great times...I mean, really great. And also some that I wish never happened. What we get handed in life...what our lives get shaped into from the age of 20 to the age of 40 is crazy!!! I never thought that by 40, I would still be living in the same house that we bought, just Tony and I, a year before we got married. I never thought that I would have 8 kids along with 2 miscarriages...never, ever even dreamed it. I never thought I'd see so many people come and go in my life...enjoying and happy that I got to meet every last one of them...really...from the people that I went to school with, used to work with years ago to my mom friends at the kids school and on line friends.... just everyone. I feel very blessed that each and every person has touched my life, somehow.

On to Kenny...he has officially been evaluated for feeding therapy...and needs it...BADLY. The evaluation started with a group of docs and such wanting to know everything...from when I was pregnant with him and Nick to present time. Reliving and telling everything was very hard for me. Brought back so many memories and feelings. I hate doing that! They then wanted to see how he ate, so they put us in a room (kitchen like) with a highchair. They warmed up a tray of finger foods and told me to feed Kenny like I would at home. Thank goodness it was 11:00, because he didn't eat and was pretty hungry. Anyhow, I gave him tater tots and he was eating pretty good...well...he put pieces of them in his mouth and was making the motions of chewing...when in fact, he was just pocketing the food in there. When his mouth was full, he'd spit the food out and start over. This went on with the beans, spaghetti o's, bread and fruit pieces. It was the typical behavior...put it in, pretend to chew and then, out it comes..or he'll keep it in there for hours...very frustrating!!! He wants to eat so very badly. He wants to be able to do what is normal. He just isn't able to. How do you teach a child to chew his food with his teeth and then swallow. That stuff is supposed to come naturally, isn't it?
So their findings were exactly what I expected....he cant eat. Medical reasons are: being intubated for so long, the roof of his mouth is very high (his palate). Secondly, he is hypersensitive to temps and textures in and around his mouth, but hyposenitive to things being in his mouth. He was born so early, he cant connect with the fact that he has to chew (which doesn't mean move your mouth open and closed) with his teeth and then swallow what is in there. With pureed foods, it just slides down his throat. THESE are the things that the doctors DONT tell you when your baby is fighting for their life in the NICU...the everything that will happen or find out when your micro preemie is home...home for a few years. They are also going to be sending Kenny to an ENT for those nasty ear infections he's been getting. At which, they also mentioned the Cochlear Implants for him. What next? *sigh*
So, he will be getting intense feeding therapy 1x a week, at the clinic and then I have to work with him the rest of the week. Ohhhh joy, a new challenge for me! This is going to be a long road with him, but I am praying that he will be able to chew and swallow. I am scared for him, I really am.
SO, on the same day as his feeding eval, the genetics specialist called me to tell me that they found just a very...yes she emphasised teenie tiny, very small section of chromosome 17 is missing. WHAT? ummmm....ok? How the heck did this happen? She didn't go into anymore detail except to say that it might be normal for him, if one of us has the missing piece...so we should get tested. And that was it. So now I am stuck with this piece of information...of course, I go and Google it to find out what does this mean...I shouldn't have done that. I am scared for my little guy even more now. So what will these finding mean? I am not sure. It's not going to make him any better. Its not going to be able to fix his lungs, his hearing, his muscle tone, his delays or his eating. What we will have is yet another "diagnosis" for him. Which will at least stop me from wondering....I think. I just want my precious little Kenny to be the best he can be. He is already walking while holding hands...not steadily, but he is doing it. This is after doctors told us that he might not walk.
I have high hopes for my kids, and all I can do is pray that their lives are fulfilled. Full of love and success in what they make of it. I say UGH to this journey called life...its a little harder than I thought it would be, but am making the most of it as I can. God gave me a good 40 years of life so far....extremely busy, lots of sorrow but also love and courage! We don't have money or tons of things, but I do have 7 wonderful living children who all have very different personalities, wants and needs. I also have 3 angels (my Nick and 2 others from miscarriages) watching over our family and hanging with those loved one that have passed on. I have a wonderful loving and caring husband who I just admire and love to the ends of the earth and beyond! I have my parents (and in-laws), sisters, and friends whom I love so much...thank goodness for Facebook so we can all keep in touch and "talk" every day.
So...I forge onwards to another year...what will my journey though life bring next?

Happy Birthday to me (and my twin)

Happy Birthday to my twin sister Diane. The miles keep us from being together on this very special...ah-hem...40th birthday, but I celebrate today with you in my heart and on my mind....

Wish we could spend our birthday together, hopefully next year sis! Love ya tons.

Turning 40 isnt too bad...right?! LOL!

In my dreams

Two years ago tomorrow...August 25, 2007...was my due date for the twins. It was a day, a dream, that never came to be...a day that turned out just to be another August day. Getting that due date of August 25 was so exciting...yes, I know that with twins comes prematurity...but it was still a date that will forever be burned into my life, my eternity. I was going to give birth to twins...wow..what a miracle of life...two babies after 2 miscarriages. I thought to myself these are the souls of my babies that I lost, coming back because God made a mistake. But...God doesn't make mistakes. What was I thinking? These two miracles, Kenneth and Nicholas, were miracles in their own right.

Nick living for 2 days...THAT was a miracle. Kenny being here today...THAT is a miracle. Being born 17 weeks early...THAT is a miracle! Its a miracle but also a nightmare. A nightmare that no parent should EVER experience. The pain does not go away. Always missing, always wondering if there was something that we could have done. Always wishing things were different. Reliving the day everything bad happened. It should never of happened. To us, we were supposed to have our twins...Tony is a twin, I'm a twin...we were supposed to have twins! I still am trying to figure out why God would give them to us and then take one away. Why God would make Kenny have to struggle with everything in his life. Why would he make our other kids experience a death of a sibling like I had to do. Why would he make Kenny grow up and live life not knowing how much fun being a twin can be, having a "built in" best friend...forever...like Tony and I get to experience. Celebrating birthdays together, going to school together, and switching classes on April Fools Day. Going to Twins Days together...Growing old together...Why would that be? I know it cant be to punish us or to punish Kenny...God is not like that.

So, I want to wish my twins, because I AM A MOMMY TO TWINS, one on earth and one in Heaven, a very happy "due date", tomorrow. A day that, in my dreams, you both were to be born...healthy and with no disabilities to stand in your way. No pain of surgeries, needle pokes, sensitive nervous systems, infections, medications, hearing and vision loss, developmental delays, muscle tone problems...and no death. There is no feeling of guilt for causing all this...even after all this time.

In my dreams, my loves.

Thoughts for Thursday....

I sat here looking through my vast array of "blinkies" that I have downloaded throughout the years...and came across this one.

I sat...stared at it this morning...and thought....WOW, I never saw the correlation before, nor did I ever think twice about it. It goes right back to my whole numbers obsession.

Like my post a few weeks back when I was saying how Kenny and Nicks birthday 5-2-07 meant that I had 5 kids, just had 2 more which equals 7...and then there is Gina's birthday: 7-17-08...7 kids, added 1 more to the 7 and then got 8....well....now this!

Matthew 5:4 Blessed are those who mourn, for they shall be comforted.

Nick, our angel twin, passed away on 5-4... coincidence? I think not!

God is good and will help us get through tough times.

Sometimes life drops things right in front of you

So back to school is fast approaching. Not only for the older kids but for Kenny! I am so nervous. I know it is only for 2 days a week, but those two days...dropping him off...seeing his sad face when I walk out the door...ugh...it just breaks my heart! Then I sit and worry about the stupid Swine Flu hitting our house...I know I can sit and tell the kids...wash your hands, don't drink from the drinking fountains at school, etc...but the fact is, the media is making me into a basket case from this!!!! They say it affects those with underlying problems (like asthma)...well...most of my kids HAVE asthma (so does my parents and twin)...so...yeah...kinda scared here.

Anyhow..we have a new addition to our family....LOL...I have just taken in a week old....SQUIRREL. Yep, you read it right. Tony was taking out the trash, and saw something laying in the grass in the front yard. He went to pick it up, thinking it was one of the kids toys...and it started to move! I was told by many to let nature take its course...I did to a certain extent. I put it in a towel, by the tree where it fell out of...HOPING the mommy would come down and get it...well...that didn't happen. So Mommy Tomecko had to intervene! Started out with pedialyte and a hot water bottle...still leaving it by the tree...and still no mommy squirrel. Well now its not coming back so I am feeding it special formula, every 2-3 hours and keeping it warm. He has perked right up, he is getting active, gotten his coloring back and is not dehydrated anymore. I sat on my front porch the night that we found him...holding this teenie tiny creature...eyes still fused together...wondering what to do with it. I couldn't just leave it to dye...I couldn't "let nature take its course" because I kept thinking back to Kenny and Nick...their eyes were still fused together...unable to care for themselves...if we were to have let "nature take it course" with them, Kenny would not be here today (yes, I am comparing my HUMAN babies to an animal...sorry if I offend anyone, I am just trying to make a point.). Anything that is a living creature deserves a chance at life...in my eyes anyhow. So as long as I live, if I see an animal in trouble, I WILL try to save it. Its just the way I am. It gives me such a good feeling to see this tiny little animal bounce back from near death because of love.

OK, enough of Animal talk...LOL..

Not much new on the little man we call Kenny. We are going to try Toupee Tape to hold those darn hearing aids in. He is getting a little better with them in, but still pulls them out constantly! umm....lets see...OH! Gina...she is starting to take steps now! I give her by the end of the week, she will be walking everywhere! Yay Gina! I am sure that once Kenny sees her walking, he will HOPEFULLY be right behind her!

That is pretty much it. Like I said, not much happening...just the same old...PT/OT, laundry, football, cheer leading, school shopping...oh...and now taking care of a critter on top of all that! LOL!

I should take a poll...what should we name the baby squirrel? Please respond in the comment section!!!

Have a good day everyone.

Kenny has a surprise for all!

I am finally able to post again! You know, when it rains it pours...first, my laptop dies...then the kids (old millennium edition desktop) decides to lock up and not have enough of ANYTHING, my camera breaks and finally, my husbands hard drive on his laptop fries out...I heard it racing but never thought anything of it...and...well...it did get hot to the touch all the time, but...eh...well it died. We just got a new hard drive in and now I have to start from scratch....can you say DARN!

Sooooo...on to the big news!!!! While I was away, Kenny decided that he was not going to let his little sister do things without him trying....WE HAVE A STANDER!!! He tries so hard every day to stand on his own...its not for long, but he does it...I feel so strongly in my heart that he will be able to walk!!! We are so happy...The whole thing is bringing tears to our eyes!We always knew their was a reason for Gina...and now we know that she is helping Kenny learn to do things...want to do things! Both my babies showing off how they can stand!!!!The smile on his face says it all!!! Gina stands like an old pro! Not even wind can knock her down! LOL!!!
So this brings us to another one of Kenny's obstacles...his hearing. I received, in the mail, the print out of his hearing test from his Audiologist...it is a little worse than we thought. He is now in the Moderate/Severe hearing loss rather than mild or even moderate. He falls in the 60-65 range...which is tipping the severe side of hearing loss.

So I have been really pushing him to keeping those darn hearing aids in his ears...I don't care if he doesn't like it...he can hear so much better with them in, not to mention learning to talk. Right now, he is not saying much...Bro bro (for little Tony and sometimes his sisters) and...well...that is pretty much it! He does say Ma...but I really think it is just a sound to him rather than a word. This is a great site to hear sounds like Kenny hears...I'd go nuts (check it out!)

He has really come a long way. From being that teenie tiny baby in the NICU to now...I am in AWE of him. He struggles with many things, but he is determined and strong willed...and that is what kept him alive in the NICU all those months (along with his twin guardian angel).

And on to the other kids....lets see...

Baseball has ended...football has started. Practice every day from 6-8...Little Tony is doing pretty good considering he is one of the smallest (thinnest) on the team...but I think that helps with how fast he is! Now if I can just get him to work on his summer homework...which has to be turned in on the first day of school.

Cheerleading has started as well....which is what Taylor is in! God help me. LOL!

Morgan is just happy to help sell hot dogs and hamburgers at the practices to raise money for the team...that's my little salesgirl!!!

And Sydnie and Kayleigh...well...they are still having fun with their stuffed animals.

School starts in just a short 2 weeks...part of me is very happy that they are going to be going back, and then the part that has to wake them up in the morning, help them with their homework and make their lunches, wishes that it was the first day of summer again. We still have some school shopping to do, but not much.

I have so much to talk about....but I am going to have to break this up in a couple different posts...so until the next post...chow!

Crazy whirly life.

I guess an update is in order. So much has happened in the last week. First off, my USB cable to my old camera that I've been using finally broke...So...no pics this post until I can find a new one to upload my pics.
Lets see...well...Kenny got his helmet on Friday...its cute and it does its job (thank goodness that daddy is a vinyl graphics sign guy who can customize his helmet to look cool). He cant pull it off because it really is on tight...but not too tight. When he goes to bang his head (with it on) he kinda stops mid "bang" like...wait...I cant hit my head with this on. So its working! YAY! I have to say that I really don't like him wearing it too much because I want him to be able to tell me why he is frustrated not get used to wearing the helmet. Which brings me to my next topic...his PT yesterday was AWESOME!! Yes, he cried a little when he thought I was going to walk away, but I wasn't...I was just getting a ball. Jaime, his therapist, held him, made him look at her and she was signing and talking to him to use his words. So...after a short tantrum and trying to figure out what he wanted...Kenny signed "Mommy" and signed "more" and a different time made a sound similar to "BBBall" and also made a sound like"pppp" for pig...a toy that he was playing with. He was using mostly his right hand to play with toys, but she was making him use his left. Also was working on his rotation of his trunk...reaching and putting in...and finally to end a GREAT therapy session...holding his hips and making him stand and walk to me! Very sloppy...but he did it! I know that it really wasn't a huge step...but these baby steps are so amazing to see. I work with him (and Gina) daily...and to see that for Kenny, it is starting to click with him, just makes my day. With Gina...she is surpassing Kenny with some things...talking, standing without holding on...I want to teach her that its OK to do things ahead of Kenny, because Kenny has to do things at a different pace. I also have to keep telling myself that too. And...with Kenny, I just have to really watch his movements because she (the therapist) says that Kenny is trying to communicate...just in his own way. So I have to be very vigilant as to what he wants...watching his hands for signs. I also have to be very persistent with making him use his words (signs) for those head-banging, temper-tantrums.
I received his speech therapy evaluation report and they are recommending him go to speech 2x a week for 30 min. So...now its a waiting game...AGAIN.
So...now we've got PT 2x a week, OT 1-2x a week, and speech 2x a week...on top of his school starting in Sept. which is 2x a week...and specialist/Dr's appts galore...ON TOP OF school starting at the end of Aug. for the 4 older kids, football for Tony, Cheerleading for Taylor and PTU for Tony and I....AM I CRAZY? Yup...just a little! LOL! I have my "BIG CALENDAR" out and ready to start filling in the dates! LOL!!!

Blog Award!!!

I have been away for a week and look what I get...AN AWARD!!! YAY!!!

My friend and fellow blogger, Madison over at Life Happens During Naptime sent me this....my very first award! I am so happy. I never thought that I would get an award for MY blog. Thank you so much Madison.

I have found that writing my blog has helped me cope with the whole journey of the way my life has taken. I can express myself to others and hopefully help others know what goes on when a pregnancy ends very early...how you are stuck with raw emotions that don't stop after the death of a child, or the struggles that a micro preemie must endure, even after they are home from the NICU, or even how us parents and siblings deal with it. I want to be here for families that have just had a micro preemie and needs someone to relate to.

Ah anyhow...Thank you so very much again. I will post this award proudly!

I would like to pass on this "lovely" award to some of my favorite blogs. Blogs that have inspired me and have given ME hope to face each challenging day. Please check them out!

Nicholas Richard

Profoundly Seth

Julie's Daily Inspirationals

Fort Thompson

Micro Mom Blog

Micro Preemie Twins: The Story of Holland and Eden

Our Simple Life

Blogging Hallie and Lea's Life

The Continuing Story of Preemie 26 Week Christmas Miracles

Littlemanbig: A Micropreemie Adventure

All About The Larsons

J-ust M-e

The rules of the “One Lovely Blog Award” are: Accept the award, post it on your blog together with the name of the person who has granted the award, and his or her blog link. Then pay it forward! Remember to contact the bloggers to let them know they have been chosen for this award.