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)

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!

In Need of Change

Happy November 1st everyone. Can you believe that it's November already? WOW!

My post today is about change. Our family is seriously in need of good change. We are just like everyone else in the world...we work our butts off and it gets us nowhere. So these last weeks I have opened my mind and not only do we need change, we will try for it. There has been a house that we found....its a foreclosed house that is 4 BIG bedrooms, 2 1/2 baths, on a corner lot in a nice neighborhood, about 25 min. away.... we ALL fell in love with it. It needs work, but so did our current house...and we made it home! It's so much bigger than this teenie tiny 11oo sq. ft. home we live in now (over 2500)! Paint, carpet and a little TLC...I think our family can make it home....

Eat in kitchen...everything need updating, but is very livable!!!

Nothing a little paint wont fix

I LOVE the family room!

It has a living room AND a family room!!!!

I love this entrance

We are already throwing out 15 years of accumulated stuff, giving to goodwill the decent stuff...our tree lawn is going to look ridiculous on garbage day. Its so nice to clean and declutter...I am feeling good about this! We just have to sell our house first before we can try for this one....Please say some prayers that things work out for us. If its not this house, it will be another...we just have to get our courage up and just move!!!! We are scared, but feel that this is the best for our family. With a lot of prayers and asking for Gods direction, things will work out!

So anyhow, back onto change....Kenny is wearing his hearing aids most of the time now! He still isn't walking on his own very much....a step or 3 here or there...but its a start. He is giving kisses now...totally melting my heart! I just love him so much.

I took him to his monthly visit to his doctor...he received the H1N1 vaccine...I am glad of that. It took a load off my mind. I was so worried that he would get such a bad case of the flu and die...its a feeling that I feel with all my kids....I think its my Post Traumatic Stress thing coming out. The other kids will be getting theirs on Dec. 1st.

The doctors are not happy with Kenny's weight gain. He is 22.6 lbs...he is on 32 ounces of Pediasure a day along with 10 teaspoons of duo-cal in everything...from his pureed food to his Pediasure...its a mess. His GI doc is sending him for a barium swallow in a few weeks...to see what and why he isn't chewing and swallowing pieces of food. I sure hope they find out what the heck is going on. He is also going to see an ophthalmologist for his eyes, since they are crossing all the time now.

I am just feeling so sad for my little guy. I just want him to be the best he can. I know he's happy but I also know that he gets so frustrated because he cant communicate. So can you all please keep Kenny in your prayers that he can overcome all his disabilities.

And one last thing. My friend Jen has a son who was born around the same time Kenny was supposed to be born, anyhow....he has been diagnosed with MITO. He is having a real hard time right now. He has been in and out of the hospital with major issues.Here is their blog: The Moody Tales and also his Caringbridge page. Could you all please keep Zach in your prayers along with his parents and older brother, They are such good people. Thank you so much.
Like I said....we are all in need of change and MANY PRAYERS for many different things.

Please vote for us.

Ok...to all my followers and readers of this blog, my life...I have entered the HealthBlogger Awards and would LOVE it if you could all vote for my blog for this award! I have put my heart and soul into this blog and would LOVE to win something this important to me.

Vote for me at either: http://www.wellsphere.com/michele-tomecko-profile/147034

or on my sidebar I have a badge to vote on.

I really, really do appreciate all my readers. Thank you for your support!

Wonderful and wacky Wednesday

OK...so since my home life is as crazy as it seems, I thought I show ya a few wacky things that have gone on....

First off...Taylor sitting by the "infamous" heater vent...yes...every morning (like clockwork) the kids all fight over this one lousy vent...all I hear is...."I called it"...then...."NOOOOO, I called it last night"...and the day begins! LOL! So, in this picture, Taylor won it...notice the smile? Next, we have this watermelon...I figured...Wacky Wednesday...watermelon, the size of a softball...ok...it fits. So....this watermelon is what we grew this summer in our backyard. It may not of looked like much, but it was the best tasting watermelon ever....Again...just add in the fighting over who was going to get the last piece. LOL!

OK...this one is a biggie. This is by far, the WACKIEST thing ever. Our beloved neighbor, Jerry passed away last week (RIP). It has been so hard on all of us...we've seen him everyday...he's been a part of our lives since we bought this house. He was more than just a neighbor...anyhow...the other day, Tony stepped out of his shop (aka...the garage) and saw this!

In the 15 years that we've lived here, this NEVER happened. We strongly feel that this was Jerry's way of telling us that everything is going to be alright. See, Jerry LOVED our yards...he spent most of his time working in his yard and ours...loved nature...so this is so appropre for him!

Moving on...we have a wacky and wonderful Gina! He has hit the "Rocker Chick" status by giving the "rock on" sign...all the time!

And last but not least....in our WACKY and Wonderful house...we have adopted a squirrel (see older posts). The kids love him and play with him like he was a freaking dog! LOL! So...ya cant get much more wacky than this!

Have a great day everyone. Today is speech therapy for Kenny...as long as he is feeling better. He had 1 day of no sickness then BAM! So he and Gina have been battling runny noses, coughs, diarrhea and fevers...

but why not...its just a Wonderful and Wacky Wednesday!

Kenny and Nicks Birth story

This is for everyone that doesn't know the whole birth story.
FROM THE BEGINNING...
December 2006 we found out we were expecting...I started bleeding on Christmas Eve and by New Years Day, I thought I miscarried. I called my doctor and asked if I could come in for an ultrasound to make sure the miscarriage was over...so that is what we did. The next day, we went in...I prepared myself for seeing an empty uterus...since I've been through this before. When she put the ultrasound to my stomach, there were 2 sacks! She told us that there were 2 in there and the both looked great!

We were shocked, scared, happy...all in one! Our family of 5 kids was going to expand to 7 kids! GAH!!!! The pregnancy was quite rough since I have had all my babies 6 weeks early, due to a bicornuate uterus, my doctor from the get go was not to happy that I was pregnant with twins. He was very worried that I would miscarry them or have them way too early. He prepared me the best he could for what to expect. Around 16 weeks, I started bleeding...bad. I thought...this is it. I am having the late miscarriage that he was talking about. Turns out, there was a hemorrhage behind baby A's placenta. I was put on bed rest and told me that it would probably correct itself, since they didn't see any other bleeds on the ultrasound. We got very attached to these little guys right off the bat. They were our little miracles! To feel 2 babies move inside of me was so awesome. It was indescribable. Nick (baby A) was on my left and Kenny (baby b) was on my right. I prayed to God every night, that he would bless me with both of them making it through this pregnancy and born healthy. I talked to my boys every day and night...I told them to stay put, that mommy wanted both of them to come home and grow old with our family! When I went in for my 21 week appt. I mentioned to my doc that I was more uncomfortable and "wet". He checked me, sent me for an ultrasound and told me that I was in the hospital for the remainder of the pregnancy. My world was falling apart. How was I to be in the hospital for months when I have 5 little ones at home? So there I stayed... basically head lower than my feet for 2 weeks. I was monitored every day. There, they told me that Kenny (baby b) was now Baby A. He was breech with his feet down by my cervix. By the end of my short hospital stay, I started to feel like I was in labor...no contractions but I've been through this 5 times and 2 miscarriages, I think I know what beginning labor feels like. I couldn't stop crying, I was crampy and I had tons of...sorry TMI...discharge. I was given medicine to help me sleep and relax, but I knew what was happening. I was in labor at 23 weeks. The night before I had the twins, the nurses in the antepartum ward knew that I was extremely upset about what was happening, so they called a doctor from the NICU to come in and talk to me about what to expect. Scared the living daylights out of me! Because I was pregnant with twin boys was a negative...girls tend to do better than boys. Singletons do better than twins. If I could keep them in a little longer, that would be good...23 weekers only have a 17% chance of survival. All the problems, "what ifs", statistics and reality was just too much for me. I just cried and cried and prayed. I have never felt so alone in all my life. I spent that night just feeling my boys move inside of me and talking to them. Not knowing that that was the last night that they would be part of me, inside of me...I was protecting them, doing what a mommy was supposed to do. The next morning, May 2, my doctor came in and asked me how I felt. I told him that i honestly felt like I was in labor. I called my husband, Tony to please come be with me because I just wasn't feeling right. With my husband by my side, my doctor checked me...called for the portable ultrasound machine and told me me that Kenny's feet were in the birth canal and I was already dilated to 4. There was no turning back...He was going to perform a c-section right away. He kept telling me that he was sorry...when a doctor apologies, you know it's not good. I was able to call my mom and dad to tell them that the babies were coming, so they made all the other calls to my sisters (including my twin). At 10:29 Kenny was born and at 10:30, Nick. They both weighed 1 lb, 7 oz and were just under 12" long.


I was able to see Kenny, but they took Nick right away. I couldn't get over how small they were. I didn't get a chance to see them afterwards because I was in recovery. My oldest sister, husband and best friend were there. I was just kinda numb. I couldn't believe that they were out of me. I couldn't protect them anymore, I couldn't feel them move inside of me, talk to them to tell them that it would be alright. My twin sister did an amazing thing. She is living down in Alabama with her family. She didn't know what to do, so she called my church and asked for the priest to go and baptize the boys. So my priest was also in recovery with us...ready to baptize them and be there for me if I wanted to talk. My husband, sister, friend and priest all went to the nicu and baptised them. Those first 2 days after they were born, were really a blur. I had my daughter's communion that I was making her a headpiece for, while I was still in the hospital. I was getting flowers, cards and calls of congratulations...yet, I couldn't get too excited.

On May 4th, My sister-in-law and niece came to visit and to see my twins. I noticed that Nick didn't look real good, and made a comment to the nurse to keep an eye on him. We just got back to my room, when the nurse came to tell me that Nick was having some problems. I started crying. They called my husband for me and I called my parents to tell them that Nick was not doing good, and to please say prayers for him. As Tony and I sat in the NICU watching the doctors and nurses work frantically on Nick, I felt sick...physically sick. How can this be happening to us. My beautiful baby is dying and there was nothing we could do! The gave him several blood transfusions to try to stop the bleeding in his lungs. It wasn't working. They then brought the ultrasound machine in to check to see if he was bleeding in his brain....he was...grade 4....there was nothing more they could do. They worked on him for 4 hours before telling us that he wasn't going to make it. At that point, I got to hold my baby, really hold him. I didnt want to forget how he smelled, looked or felt. He was so tiny, yet so perfect. My in-laws got to the hospital in time to hold their grandson, before he passed. I wished my family could have met him. He was so beautiful. But they were all over the country. My parents live in Arizona, sisters in Alabama, Pennsylvania and so on...Anyhow, They were there with me in spirit. As I was holding Nick, I just kept telling him that he was going to be with Uncle John, my brother who passed away 20 years ago at the age of 24. I know know why he died...He died, so he can be waiting in heaven for Nick, his nephew. I have to keep telling myself that they are together or I'd really lose hope. Well, he passed away about an hour after I told them to take his vent tubes out. The nurses took tons of pictures of Nick and then of Nick and Kenny. I will always cherish those pictures and the staff of the NICU. My father in law was holding him when he died. It was the worst day of my life. I thought having a miscarriage was bad. Nope, this was, by far, the worst pain anyone could ever feel.

I have a video that I put together...

Here it is, please watch...

My Twin Pregnancy from michele tomecko on Vimeo.

Kenny was in the NICU for 129 days. He had surgery to close a valve on his heart, several blood and platelet transfusions, Collapsed lungs...seamed like every other week, about 3 really bad infections, in which we almost lost him. ROP in both eyes which required him to have laser surgery. A PICC line put in, but that became infected. He was on the ventilator for 3 and a half months and about that long on a feeding tube. He has severe BPD (bronchial Pulmonary Dysplasia) which he will probably have problems with lung issues for a very, very long time.

He also failed the hearing tests in both his ears. I thank God for him every day. He could have easily died, But with the help from the hospital (MetroHealth), the doctors, the Nurses especially and his twin guardian angel and God, He is here today! Kenny is now a growing, thriving little boy. He is still having major lung problems, hearing problems, in which he is getting hearing aids for, muscle tone problems, and developmental delays...he is just starting to crawl on his hands and knees...but other than that...he is perfect in every way! He is on oxygen (at night) but that is to give his little heart and lungs a rest. Every day is a new adventure with Kenny. He has been hospitalized several times because of his lungs and getting sick...when he gets sick, you can almost bet that he is going to be in the hospital. Feeding him is another problem, because of his gag reflex from the vent tube being in for so long, he doesn't want to eat...only drink his bottle. We finally got him on stage 2 baby food, but it is still a very rough ride...trying to get him to eat that even. So that is the story of my Kenny and Nick...two perfect babies of which one came home to us, and one went home to Jesus.

RIP to our neighbor...our friend.

This has been a very hard week for all of us, here at the Tomecko house. We lost a great neighbor...he was more than a neighbor, he was family! When Tony and I looked at our house before we bought it...Jerry was the very first person that we met. He was out in the back burning branches that fell. We knew at that moment that he would make a great neighbor...for 15 years, we saw him every day. We was there for us through every high and low of our married life. Holidays, birthdays, summers working in the yard, fall...raking leaves into big piles for the kids...taking the kids on tractor rides...the kids know him as Uncle Jer-bear...
He will be very missed. Its been such a sad week. I know he is not in pain anymore...he fought a very long battle and just got tired. I know that he has finally at peace with his parents and brother that has passed before him and that since he cant be here with us, is at least holding our son Nick waiting for the day that we will see them again. RIP Jerry...we love and miss you.

We also celebrated our oldest son's 12th Birthday! OMG...where has the time gone?! 12 years since my very first baby...who would have thought that 12 years later, I'd be a pro at motherhood....well not a pro, learning along the way...ok....I'll just say I am a "seasoned" mom!
We were gonna have a big birthday party for Sydnie, Kayleigh and Tony this past Sunday, but because of our neighbor's death and sickness in the house...we are holding off. Not sure when...I have the cake design picked out, so when we are ready for that big ol' party...it just needs to be ordered. So, Happy Birthday to my oldest son, Tony....I love you so much! Now...does anyone have that handbook on how to handle teens? lol

Fall...foliage and flu

Oh the days are getting shorter and the cooler! Happy Fall everyone! The season is truly showing its cold side these days! Yesterday we decided to take the kids to an apple picking farm. We ended up just looking around and buying a bag of apples because it was close to closing time (yes...we got lost...drove for hours...LOL). I couldn't see spending the money on 7 kids for just 20 minutes...but that is OK. The kids enjoyed themselves and we ended up going over to my sisters house where they all got hair cuts! Kenny is looking like a little boy again!

The family pet that is known as "Leo" is doing great...yes...we named him and YES he is a squirrel. We will be giving him to a rehabber at 10 weeks of age...but for now, I have been rehabbing him since he was a few days old. I never thought I'd be having a squirrel living inside my house...but I have gotten attached to him...feeding him every 3 hours or so and now, now he's getting fun. He love to climb and explore. Just look at how big he got...the first picture is from when he was just a week old...and this other picture is from Friday night!

Kenny finally started school up again. He goes twice a week and is finally starting to like it...I think. He cries when we leave, but seems to do well while we are away. Every time I take him to school, it hits me like a ton of bricks...my son is a special needs kid. Yes, he needs hearing aids. Yes, he is developmentally delayed. Yes, he doesn't talk...at all. Yes, he doesn't know how to walk at age 2.5 and no, he cant eat. BUT... YES, he is a miracle and he is so very happy and loving!

He leaves his hearing aids in all day...which is awesome! He now just pulls them out when he feels the bungee cord that holds it onto his clothes. He took a few steps the other night...like I posted earlier, but that was it. Nothing since. I am hoping now that he is in school, he will see other kids his age walking and want to walk...hoping is the key word. I don't know how good its gonna be this winter and cold season...it is already starting to affect him...when he is sick...or I am, it is something that we cant help. It really sucks. We go through more soap and Germ-X around here!

This is one of the main reasons why Tony and I need to move. Our house is just WAY too small. It's not healthy for the kids. They are piled on top of each other like sardines...they cant help but catch each others colds. I just sometimes wish that "the makeover" would have taken place. I really do. I am kinda bummed about that.

I want everyone to remember that October 15 is Pregnancy and Infant Loss Awareness day!

Because I had 2 miscarriages...one at 8 weeks and one at 13 weeks and also lost Nick, I take this day to heart. To remember, reflect and pray to my 3 angels whom I miss so terribly. And also to pray for all those parents that have lost babies like we have. Thanks to modern medicine, Kenny and Nick were able to survive birth at 23 weeks gestation.

When you are pregnant, you have hopes and dreams of the baby(ies) inside of you....when you start to bleed and something goes wrong...no matter at what week in the pregnancy you are at, it hurts bad...emotionally. Those hopes and dreams are shattered. No longer will you have the "due date" to look forward to. The belly rubs, the looking at cute baby clothes or picking out names. During a miscarriage...its an "I'm sorry, you lost the baby." in the doctors office or ultrasound room. So very heartbreaking. I have to believe that every one of those babies lost during a miscarriage has a soul...they were given to us and taken away for just that very short glimmer of time...for some reason. So, to all my cyber sisters that have lost a baby...be it a miscarriage, stillborn, neonatal, infant or toddler....This day is for us and for them. May God wrap his arms around us and comfort us in knowing that our babies are safe with Him and one day we will see them again (I hope and pray).

Steps....Baby Steps!

Last night, we were sitting watching TV...a very relaxing evening (hard to come by in our house)LOL....anyhow...I was on the couch with the laptop and Tony was on the rocking chair across from me. Kenny was standing on the ground near my feet and all of a sudden...started walking real slowly towards me...5 steps!!!!! THEN after I hugged and kissed him like mad, he took 5 steps over towards Tony at the rocker!!!! I just love that little guy more than life!!! He is trying so hard to do things so his baby sister wont out do him!!! He has also learned to come down the steps...again...thanks to Gina! Yesterday the two of them were going up and down the steps...it was almost like Gina was saying, "Kenny watch me, this is how you are supposed to go down the steps...feet first, backwards....not head first!"
What a good day it was...Kayleigh's Birthday and Kenny walked!

And Another Birthday

Our 5th child, Kayleigh is 4 today! She is a strong willed, loving, smart and very energetic 4 year old! When she was born, she was my first c-section baby who had a true knot in her cord! We were lucky that I went into labor with her when I did, or else she would have been still born. The funny thing is, is that Sydnie ALSO had a true knot in her cord too! So...both my birthday girls (last week and this) are little miracles!

Happy Birthday Kayleigh!!!!

Fortunate Friday

Wow... sorry for the delay in posting...its been crazy here at the Tomecko house. The amount of homework these kids get...everyday....mindblowing! I am literally sitting at the dining room table from 3-5 pm. And then I have Kenny and Gina getting into everything. Gina is now walking like a pro, so she is everywhere. It's way to cute! Kenny has had diarrhea for about 2 weeks now. Poor little guy. I know its got to run its course, but in the meantime, he has not been able to go to school for 3 weeks now! Yep, school started 3 weeks ago for him, and he has yet to go. I have a feeling its gonna be a very long cold season *sigh.

Since its Friday, I figured I write about what I am fortunate for having. I feel like I am at a new place in life, yes...still living in this stupid 1100 sq. ft., 3 bdrm home that is falling apart around us....but, something about fall makes me love this house. I love making it look warm and welcoming. It makes me feel good. I know that getting the extreme makeover is a very far-away dream. One that I was hoping would happen to us, but...its like winning the lottery...chances are it wont happen. So I am trying to change my frame of mind by thinking that we have to face reality and do with what we have. So, here is my list:



I am fortunate that I have a roof over my head...even though (see above).

I am fortunate that I have great kids with such strong spirits!

I am fortunate that God blessed me with 8 children (7 living), and also the 2 babies that I had miscarried.

I am fortunate that the newborn squirrel that we found 4 weeks ago is getting stronger and bigger everyday. Feeding it every 3 hours is paying off. I saved a life! I feel so good about that! Anyone have a cage I can borrow until he is old enough to let go back into nature?

I am fortunate that I have a great hubby! He works his butt of to provide for all of us. He is a very loving, caring and sincere man. I am glad that we share the same dreams! Driving around on Saturdays and Sundays going to model home....just to see and dream....we find fun in that!

I am fortunate that Kenny has not had to go to the hospital this year...yet!

I am fortunate that I have a great support system for Kenny and our family. Now that Gina is starting to do things that Kenny is still not doing...I am feeling a little sad about that. I am scared for his future but am happy that there are so many family, specialist and resources around us that are helping us.

I am fortunate that I have the memories of our old dog, Pepper. The kids miss him so much....and so do I. But....I don't miss cleaning up dog poop outside, or our house smelling like dog pee.

I am fortunate to see the leaves falling from the trees in the backyard this fall...God is an amazing artist!

I am fortunate that we have a Speedway right down the street from us....their coffee is the best...yes...it outdoes the expensive Starbucks...for just pennies! LOL!

I am fortunate that God gave me talent in art and crafts...I wish I had the money to utilize my talents, but that will come....God is good.

I am fortunate that there is such thing as sign language. Kenny is starting to sign again....and now Gina is too! At least we can communicate with Kenny and he can with us.

And finally, I am fortunate for the time I had with Nick. It was short, but meant the world to me. I pray that I will be reunited with him in Heaven, when the time comes. Miss you like crazy my little man.

So there you have it. I am working through all the tough times, forging forward and trying to make do with what has been dealt to us.

Another birthday....

Happy Birthday to my 4 child, Sydnie. You are a blessing to our family. We love you very much!

Seasons of change

Happy Fall everyone! I have finally come out of my 2 year funk, and decided to take it upon myself to decorate our home. Since Extreme Home Makeover hasn't called...and probably wont, I needed to make our house feel warm, cozy and inviting...so the fall scented candles are burning (in the kitchen of course), the leaf swags and garland with orange lights are everywhere! Mums, pumpkins and scarecrows....I absolutely adore this time of year! I now know that when it is time to sell our house (not for a while), to sell it in the fall...while its decorated!

Haven't done much in terms of blogging lately due to the fact that the kids have just not been feeling all that great. Kenny was supposed to go to his first feeding therapy on Monday, but because he has this upper respiratory cold...cough, out of breath easy and wheezy at times...they told me to keep him home until next week. He is in need of this therapy very badly. His eating is getting worse and worse. He is fine on stage 2 (pureed) and does OK on stage 3...even though he is starting to spit out the chunks of food and just swallowing the pureed part. When it comes to finger foods/solids, he wants so badly to eat. He puts it in his mouth and either spits it out or pockets it for a while. Then he takes everything on his tray and smashes it and pushes it off his tray...it is such a mess.

Today is his first speech therapy... should be interesting. I am trying to figure out how they will teach him to talk. I am hoping for a miracle! I would love to hear him say mommy and daddy!

He is also starting is first day of class this Thursday. Again, he was supposed to start last week, but his cold hindered that goal. So we will shoot for tomorrow! I know he is gonna cry...and its going to break my heart, but it will be good for him (and me) that he gets an all day, well rounded therapy.
We are cutting his day short tomorrow though because he has his doc appt. at Comp Care. I have a lot of questions for them and I am hoping for good answers.

On a different note, Gina is now a walker. She is EVERYWHERE! I love it! Its such a relief and a change of pace from Kenny (not saying anything bad about Kenny). It's just....seeing Gina do simple commands, like "go give that to daddy"...and she walks over to daddy and hands him whatever...its so...ah...whats the word I'm looking for...refreshing. It makes me feel that I am NOT a bad mommy. I am doing everything for them to grow, develop and just be...ah...normal.

Kenny is such a challenge, Ive said this many times before. I love him more than life itself...just like the rest of my kids, but its very hard to think I'm a good mommy when he doesn't respond or cant walk, or...talk, or...eat.

Oh, and then I have my oldest son. He decided to quit football. He loved playing but was very hurt that he was only playing for 1 quarter and sat the rest of the game. We were pretty upset ourselves. Here, you get a kid who has played on the team since 4th grade and they make him sit most of the game...when most of the kids (and new kids) play at least 2 quarters...its just not fair! Yes, we tried to tell Tony that he shouldn't quit...don't be a quitter, but in this circumstance, I think he made the right decision. There is a lot of favorites being picked on his team and for a kid to be put through that...its not right. Especially for a Catholic school team! So, anyhow... we'll see how it plays out.

Thats pretty much it for now...just busy with the kids, their homework, the laundry, the cleaning and oh...the decorating! I love the change of seasons!!!!

Sick, sick, sick...let the school year begin!

Today was supposed to be the first day of school for Kenny....well...he wont be going this week because we have this bad upper respiratory thing on in the house. You know...fever, coughing, sleepy, crabby...which bring....lack of sleep, breathing treatments, nothing accomplished because yesterday I had 4 kids laying around the living room coughing and miserable. We are going today to get them swabbed to see if they have the flu or not. The fevers broke, its just the lung issues now. Gina and Kenny are the ones I am most worried about. They have been up for 2 nights straight coughing so bad, they end up throwing up...so that leaves me with even MORE stuff to do...laundry...oh..and I am still up every 3 hours feeding a the baby squirrel! Oh JOY! LMBO! Its sheer craziness!!! I am hoping this "whatever they got" isn't the swine flu, but it wouldn't surprise me. My anxiety has taken a turn for the worse because of all this.

Here are just a few pics to entertain you all:

Leo the Squirrel...Oh...look what I picked from my garden...Jimmy Durante!!!!!Just a sweet picture of Tony and Kayleigh...I love it!And Gina eating a tomato (no...not the Jimmy Durante one) She LOVE eating them!!! Here is a picture of Tony playing football while Taylor is cheering for his team...Tony is the one with the short socks!

I am keeping this short today just because...well...I am exhausted. I will be updating everyone as soon as we get back from the doctor today.

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?