Tuesday, December 29, 2009
Thursday, December 24, 2009
Tuesday, December 22, 2009
A few days before Christmas and all through the house...
all the kids were going stir crazy, not quiet like a mouse.
the stocking were knocked down by the chimney without care...
in hopes that their mom wouldn't notice they were there.
The children were sleeping, snuggled up in OUR bed,
while visions of alone time danced in OUR heads.
Tony at work and three kids in our bed,
just started a night of sleeplessness is what I had said.
When in the crib there rose such a clatter...
I jumped from the bed to see what was the matter..
Just a step away, I got there in a flash
tore open my knee and left a big gash.
The moon shining in through the window at night
added to the turmoil that was my worst fright.
When what to my very sleepy eyes should appear
a coughing, crying Kenny with a breathing treatment so near
With Gina in one arm and Kenny in the other
I knew in a moment that this was a call for their mother (me).
No coffee to drink and the house oh so small...
all kids would be up in no time at all.
Now Morgan! Now, Gina! Now, Kayleigh and Sydnie!
Come on Tony, and Taylor, and Kenny, I plea!
Back to your own beds, on this very hectic night.
Calgon..take me away, take me away, take me from this plight!
And then in a twinkle I heard him come in
My wonderful husband with coffee (and gin) *not really...just had to rhyme "in". lol
As I turned around while crying out loud
my hubby held me tight, made my love for him proud.
Our life has been tough, every year it gets worse
sometime we think that we are under a curse.
The house we must sell in hopes to get by
We want more for our kids, to better we must try.
The cookies not baked, the cards are not out
the wrapping is not done, Oh darn! I must shout!
The music is playing some old classic tune,
seems like the loads of laundry will last until June!
As Christmastime comes, we reflect on the past.
Joy, love and peace with some good health that will last.
remembering those we've lost along the way
We miss and we love you is what we will say.
So even though life isn't so great
I give thanks to our God for giving us our eight!
I give thanks to God also, for family and friends...
I am glad that you're in our lives as this year ends!
Please know in our hearts that you all will always be
this life is about loving and caring you see.
the sickness, the bad luck, the financial strain
is just a short step to everlasting gain.
Even though our lives are busy with way too much strife
I want to be apart of everyone's life.
a true friend, a good wife, and great mommy too...
is what I will strive for, to reach...yes, to do.
From our family to yours, may Gods light shine so bright
Merry Christmas to all and to all a good night.
Wednesday, December 16, 2009
I know that many of these years have been tough...emotionally, financially, physically...but this is just a test...we WILL get a nicer, bigger home...we WILL always have Nick in our lives...we WILL have a happy and healthy family...we WILL get everything we ever wanted (hopefully)...and WE WILL do it together, forever!
I love you, love you with my heart and soul (even though I am a brat sometimes) ;)
I also want to wish my brother-in-law, Johnnie who is more of a brother to me than an in-law...a VERY Happy Birthday...Love ya tons!
Tuesday, December 8, 2009
1)Lose his twin brother. The best gift I could have received from God is my twin. We went through life and did everything together. I never felt alone, ever. My Kenny will never know what that is like...I feel so sad for him.
2)End up with hearing loss. Without his hearing aids, he cant hear birds chirping, soft music playing, or even the sounds of wind hitting the trees or leaves...its not fair!
3)Have developmental delays where he cant talk, walk, or do things like others his age..he sits and bangs his head out of frustration..how can that be good?!
4)Have such bad lungs that he is on meds two times a day just to keep them open and strong...but usually ends up in the hospital 2 times a year or more.
5)Now he has Epilepsy. Meds twice a day and who knows when the next seizure will strike.
5)Cant eat solids and not able to gain weight. Doesn't God know, in order for his lungs and brain to develop correctly, he need to gain weight and fat? Without it, he will continue to not develop mentally and physically. And his lungs will continue to give him trouble throughout his life...they stop growing at a certain age...so when that age strikes, whatever his lungs are like at that time, they will always be like that. *sigh*.
Then I sit and think...Will he ever walk, talk or even have some sort of normal life. Did we do the right thing by keeping him alive all those months in the NICU? I know we did because of his beautiful smile he gives us, but I pray to God that we did what He wanted us to do. I want the best for him and for the rest of my kids. I want him to have girlfriends, get jobs, you know...have a normal life. What will life be like for him...or for the rest of our kids for that matter. Why is it that some families have an easy time at things...money, success, health and happiness, while others like ours, have it so tough? I have to say those 3 things...in that order because with money comes health...you can get better medical care, have the necessities of keeping a sick child healthier, etc... Also, with money you are more successful in your career...money makes money...you cant start and keep a business without first having money...(example...Tony wanting to better his business...cant get the better equipment without money).
It can be overwhelming at times...if I think about it.
OK...now that I have aired out my sadness and frustrations I do have to be very thankful for many things (I have to do this or else I'll get very down on myself and life in general)...
1)My children. They are beautiful, loving and very polite...not at home...lol...just when they are around others...and that's OK!). Also my husband. He is amazing. A hard worker...a caring, loving man who would give the shirt off his back for anyone. Even though he doesn't like animals...I love him with all my heart and soul. He keeps me going. We have the same hopes, dreams and goals which is totally cool! And after being together 20 years...married for 14, 8 kids later...we still have that flame!!!
2)My family. My parents and in-laws, sisters and nieces and nephews...They have come through when we really needed them...physically needed them AND emotionally...there have been many times when Tony and I were at the worst of life...the whole NICU stay, Nicks death, several injuries from head gashes to slivers, with the kids...to hospital stays and financial hardships...to just being an ear to listen to me blabber on and on about this or that...that they have been there for us.
3)My friends. My old friends from years past to recent friends...I thank God for you all. Even though, more so than not, I've been MIA because of all the sh$$ that is going on here at the Tomecko house. I feel very blessed to have all of you in my life. At times I am not that great of a friend...I know that. I have been moody, down to the point where I don't want to call or talk to anyone. But you all have still stood by me and I love you all for that!
Sunday, November 29, 2009
Honestly, our heads are spinning with everything that has happened this past week. The doctor was explaining to us that when they did the EEG on Kenny that it showed seizure activity on the right side of his brain...you know, now I wonder if that has anything to do with his left side being weaker than the right? I have a lot of questions for the neurologist *sigh* because of all of this.
So now, we are afraid all over again. Like stepping on eggshells...we don't want him to have another seizure, but know it will probably happen..and if it does, where...when.
Before all of this, we were concerned with his developmental delays, hearing loss, lungs, muscle issues, feeding problems and his eyes....NOW we have epilepsy added to the list. My heart just breaks for him. Tony and I are to the breaking point with everything. First, we decide we are going to move, to make life better for us and our kids...kind of a new, fresh start...we put our house on the market and find out that the bank wont accept our low offer to the house that we need and really want...we cant offer more because we were not approved for more...so now, our house is on the market and we have no where to move when the time comes...we are so close, yet so far from the house...and honestly, I am exhausted....emotionally, mentally and physically. I cant beg/fight anymore with the mortgage lenders to help us out...just a little more. I cant go to overdrive in trying to fix up this house...almost done, but not...I just cant. I have to step back and whatever is going to happen, let it. Almost seems like this house is possessed and doesn't want us to leave....seriously!!!! First the plumbing, then the hot water tank, then...oh...my oven caught fire on Thanksgiving but it was under control...we had a good laugh about that. LOL...
Then Gina falls and hits her head on Monday and then Tuesday, Kenny goes into a seizure with a bad blood infection on top of that...WTH?!?!?!
Thank you all for your prayers and positive thoughts....PLEASE keep them coming for Kenny and the rest of the kids and for Tony and I...that we get through everything...it has been a very long and hard road that we have been on for the past 3 years...and it doesn't look like its getting any better.
Thursday, November 26, 2009
Wednesday, November 25, 2009
Please please pray for Kenny.
May God bless you all on this Thanksgiving.
Saturday, November 21, 2009
What an emotional roller coaster of a week. We got pre-approved for a mortgage, on the contingency of us selling our house...YAY right? Well, first off, it wasn't a huge amount. Tony and I were so excited that we were gonna put our house on the market, put a bid on the house we fell in love with. The one that needed a lot of TLC, the one that would be the perfect size for our family...only to find the bank putting a new roof on it! Well there goes the idea of low-bidding it because of the roof. There goes the 203k renovation program that we had along with our pre-approval. Now the bank is definitely not going to look at our low offer...there goes the chance of fixing up "THE" ultimate family home for us. It would have been big enough with over 2500 sq. ft., not including the basement, where there would have been more than enough room for Tony to set up his sign shop. It would have still been close enough for us to send the kids to their school and our church. I have written letters to the bank telling asking them to give a family that has struggled, a chance at happiness. I plan on giving it to them when we TRY to make the offer on Monday. At that point, our house now, will have been on the market for a few days and it will give them the idea that we mean business on selling our house FOR that one.
Oh...as I mentioned...yes, our house has a for sale sign in front of it. It's not finished, by all means, but we HAD to put it on in order to show the bank that owns the other house that we really, really want the other house.
I feel sick to my stomach about this whole thing. We are working our butts off fixing things and fixing up the house quickly...with money we really don't have (hello...Christmas is a month away), in hopes of this one house. We don't really even have a fighting chance...see, we got pre approved for $145,000-ish, the bank bought it for $150,000 but have it on the market for $195,000....UGH...its a big mess...if we just had $160,000 or more to offer...As it is, we are not making anything on the sale of our house. With a mortgage, second mortgage and line of credit (from all the hospital bills), we will be breaking even on our house...
I am just scared that if the house that we want falls through, and our house sells, WHAT THEN? Where will we go? We are leaving our comfort zone here.
Everything that Tony and I have experienced in our married life together happened here. Our first Christmas, our dad's building the deck together, the births of all our kids...bringing them home from the hospital...everything. Its on the market and we don't have anywhere to go...for $145,000...there isn't too much out there that is big enough for a family of 9...sure, there are plenty 3 bedroom homes...which wont fit our family...that's what we are trying to get out of.
Could you all please say a prayer for us that we ARE doing the RIGHT thing. We are scared but want the best for our family, and living scrunched up in a small house isn't going to make it. I now that things will fall into place, but for us...it hasn't always been. We have been in need of a break for a long, long time...still waiting...Please pray that somehow, someway things will work out for the best for us...
Friday, November 20, 2009
I also posted this on Facebook.
Monday, November 16, 2009
Friday, November 13, 2009
My hopes and dreams are that my children are and will always be healthy, strong, independent and full of desire to succeed....
my son, Kenny is proving it to me....last night he was taking some steps...very slowly, very unstable...but was taking steps. The look on his face was so worth everything! He has a small smile while staring at me...like..."I'm doing it mom....I'm really doing it!!!". My little baby is trying all his might to walk...I have to thank all his siblings for this one! They treat him like he has nothing wrong with him. They push him to walk and play...to be as normal as he could.
My kids have all been sick with THE flu. It has not been a party here at the Tomecko house. The coughing is not leaving these kids...now I'm getting it. We had Gina and Kenny at the doctor yesterday because of gunky lungs...so now, not only is Kenny on Albuterol and Pulmicort everyday...so is Gina (well, not the Pulmicort, just Albuterol). Gina has a double ear infection...maybe that's why we were finding pieces of food from dinner shoved in her ears after she ate....ugh, she is something else. I am very scared about this "swine flu". The doctor told us that this is what is going around...too early for the regular flu. They had absolutely no toys or books in their office...and all the nurses/doctors were wearing masks...it was very scary to see. And to think that my kids have it...I am petrified. I am putting my faith in God with everything...I have to. I am kind of scared to, because I counted on God to see Kenny and Nick through the pregnancy and to survive without any problems...well, it didn't turn out the way I wanted it to, God had other plans. I don't know what they are or why this happened to us, I just know that whatever is going to happen, God has plans. I pray every night that I will understand and that my faith will become stronger.
Wednesday, November 11, 2009
Today I am thankful for my beautiful kids. All the great memories and love that we have shared in 12 years....amazing! I am thankful that my kids can make me happy by just looking at them (or mad...LOL). I am thankful for the boxes of artwork and schoolwork that I have in my attic that I cant bare to part with. I am thankful that I will NEVER be bored...ever!
I am also thankful for our Nick. Even though we only had 2 days of seeing your beautiful face, holding you and watching you leave to go to Heaven was the saddest day of my life. I wanted to be selfish and keep you, but God needed you home with Him. I am thankful that there was family and friends up in heaven waiting for you. I am thankful that we have our own angel watching over us...helping Kenny get through life one day at a time. Thank you for the memories of carrying you inside of me. The feeling of 2 babies kicking was awesome! I am thankful that I can count on my kids to help when I ask...yes, I get mouth...but they help anyhow :) . I am thankful that my kids are understanding, compassionate and can relate with kids with disabilities...its an awesome feeling!
I am very thankful to God for giving me all these experiences...some good, some bad.
Oh...and in honor of Veterans Day...I am VERY THANKFUL to all of the men and women who have served and protected us! Thank you for everything you have done!
Tuesday, November 10, 2009
Monday, November 9, 2009
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...
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!
Monday, October 26, 2009
Eat in kitchen...everything need updating, but is very livable!!!Nothing a little paint wont fix I LOVE the family room!
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.
Thursday, October 15, 2009
Vote for me at either: http://www.wellsphere.com/michele-tomecko-profile/147034
I really, really do appreciate all my readers. Thank you for your support!
Wednesday, October 14, 2009
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!
Monday, October 12, 2009
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
Monday, October 5, 2009
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).
Tuesday, September 29, 2009
What a good day it was...Kayleigh's Birthday and Kenny walked!
Monday, September 28, 2009
Friday, September 25, 2009
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.
Tuesday, September 22, 2009
Wednesday, September 16, 2009
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.
Thursday, September 10, 2009
Monday, August 31, 2009
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?
Friday, August 28, 2009
Monday, August 24, 2009
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.
Thursday, August 20, 2009
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.
Wednesday, August 19, 2009