Tuesday, August 31, 2010

First day of school for Kenny

(as you can see from his face, he wasnt too excited about this)
Another school year has started for our little miracle guy. He is starting preschool for kids with disabilities in the public school system. In May we had an IEP written out for him in which it was perfect. He is going to be getting a lot of help in a lot of areas. Yesterday we went to meet with his teachers for orientation day. Kenny was a little nervous, but after a while, he was gathering all the plastic silverware and was "owning" the place. His little friend from his other school just so happen to be in his class...he loves his Tori! Tony and I had a really good meeting with his teachers. We worked out a "plan" for if he happens to have a seizure...I wanted it to where they call 911 first, THEN call us. Also, she set our minds at ease with him being there. It seems like he acts extremely young compared to all the other kids in his class...I am hoping that being there, he'll start to grow...mentally. It's hard to see your child and know that because he has so many "issues", the teacher requested an extra set of hands to help her. Our child is not "normal" in our sense. He IS a special needs child. What we can do is to support him and to get him to where HIS fullest potential is. He is an amazing little boy. He doesn't let anything stop him or bring him down. We (as humans) should follow how these kids with handicaps and disabilities tackle life...it is amazing! They are going to be working with him with his hearing aids, patch for his eye...making sure he keeps it on...speech, OT/PT and much more. They understand that he is in the hospital A LOT and will work with us when he is. I think I am going to sign up for the PTA, to help out with their class parties, he is even going on his first field trip in Oct! I am so excited for him.
The bus was supposed to take him this morning...but there was some paperwork that didn't make it to them...so Tony and I took him this morning. We had to drop him off at the door and have his teachers come and get him...hmmm...it didn't go to well.

He cried the whole way in. I'm sure it got better as the morning went on...but idunno. LOL

Monday, August 30, 2010

A very relaxing birthday

Happy Tuesday everyone! Another weekend over and done with...which just so happened to be my twin sister and my birthday. Yup...the big...28 again I meant 41. It was a beautiful weekend and even better birthday. The only thing that would have made it perfect would have been Diane (my twin) and I celebrating it together. Ohh well...there is always next year ;)

I just cant believe that I...Michele Tomecko...am 41 years old. I dont feel it at all. Are you supposed to feel old at this age? I think turning 30 was worse for me...my 40's are/have been pretty good to me. I guess with so many kids, I dont have time to think about being old...and that's a GREAT thing! I still turn on the music and dance my butt off while cleaning...and yes, my kids do laugh...but they have gotten many good dance moves from their dear old mom. Cant take the dance club out of this old lady just yet ;)

Here is a little picture diary of how my birthday way...oh, BTW...if you are going to make Eggplant Parmesan...make sure you have a lot of time....I mean...A LOT of time. The frying took forever!

The day started off with a football game that Taylor and Morgan were cheering at...
Then, when we got home, I went right to work on the Eggplant Parmesan that I have been promising to make but haven't had the time...all the while, Kenny was doing his thing...collecting and throwing and then, collecting again...our silverware...In the evening, my sister, Andrea came over and worked her magic on my hair...it turned out awesome by the way!Then they all sang happy birthday to me and we all sang to my sis on the phone. The roses on the left were from Tony and the ones on the right were from my second mom...my sister Jackie.
It was such a relaxing and just a beautiful day. For my birthday, Tony got me two more additions to my Spooky Town village that I have been collecting for years and years. I usually buy one piece a year and some figures to go with it because they are so expensive. (this picture was taken about 3 years ago..we no longer have room in the house for anything like this with all of Kenny's equipment and stuff) So, for a while longer, it will sit in our shed, boxed up.
And that's about it for how my birthday went...nothing too crazy but perfect.

Friday, August 27, 2010

Happy Birthday to my twin and I...

Thank you for being my best friend even before we were ever born.
We have been there for each other, never to be apart or torn.

We were born 41 years ago,
ha ha, it must have been quite a show

Mom and dad had twins, how exciting and fun,
but little did they know, that they still were not done.

They raised us great with tons of love and affection,
in a huge family...we were the big attraction.

Playing barbies, bike riding and swimming when we were young...
Great family and friends that's what we were among.

Walking home from Jr. High school and taking the bus,
Oh, we thought we were so cool, I mean, what was the fuss

We were always called names and teased, all through school,
With glasses and not being popular, no we were so cool.

but, we held our heads high and stood up for each other
best friends forever, throughout school ...together.

Cheer leading and singers with you by my side
you were always there if I had a problem and cried.

And even together we even off to college,
Oh yeah that was fun, we gathered a bunch of knowledge!

And then one night, the mining company we did go
We danced and mingled, we never did slow

Our big hair and dancing to the music so loud,
and meeting your husband, you picked from the crowd.

A car and clothes and secrets we did share
Separating wasn't thought of, we did not even dare.

Growing up into an adult with you always so close,
a forever best friend, right under my nose.

Even living far away has never kept us apart,
Best friends and soul sisters....right from the very start.

Through marriage and births and all the fun stuff
Through hardship and loss, which was rather very tough.

Never letting the other down, and standing always by your side
With all that you've become...I am so full of pride.

You have always been there when I really needed you
You'd know I'd do the same if I were in your shoe.

There never is a moment that I don't look back and smile
You have always been there for me, going that one extra mile.

Thank you so much for helping me through this life on earth
from playing as kids to being there through many births.

No matter the distant, I love you my sis, my friend...
always close in my heart...twins till the very end.

So today I want to wish you from the bottom of my heart,
Happy Birthday to my twin...my best friend from the start!

The first week of school, and all is well...

This was the first week of school for the 5 older kids...so that's why I haven't had a chance to get on here and write. What a busy week it was...trying to adjust back to the school schedule. I wake up at 5:30, make lunches and relax. Yes, I am working on the lunch bags again...these were from this past week...I also made them a scavenger hunt list that I glued to their bags for today's lunch. Of course, I didn't get a picture of those. Oh well...It will give them something to do at lunchtime!Then at 6:30 I trudge up the steps to get 5 sleepy heads up. Usually by the 4th time yelling up the steps "get up guys", they are all up and good to go...kinda, sorta...we usually have about 10 minutes of this...

Then its breakfast, iron the uniforms that need ironing, hair, teeth and shoes...then we double check on book bags and its out the door at 7:45! Woo hoo! I think I am finally getting this whole mom "thing"!!! They clean up pretty well, I might add. tee hee! I just cant believe that I have 5 in school! I am so proud of my kids. They have been through so much and yet they all are great kids!Here is Kayleigh standing in her Kindergarten line waiting to go into her school for the first time as a student.

I was kind of apprehensive about sending her this year, since she will be turning 5 at the end of September...she is by far, the youngest one in her class...but she LOVES school. Yesterday she came running out telling me all about computer class! She also told Tony and I about a little girl (also a kindergartner) that Morgan and her asked if she wanted to be friends with them, and the little girl told them no thanks! LOL! So Kayleigh told us that that girl needs to show a little bit of respect. HAHAHA...she will do perfectly fine in there!

And finally...Kenny went back for a follow up with his docs about his g-tube. He has still not gained any weight...which to me, makes sense...he is SO active and always on the go...more so than the other kids....that he is burning the calories super fast. When he was in the hospital, he was confined to his crib and just laid there...so that is why he gained there, and not here. We raised his intake a little bit more, so hopefully that will help. Other than that, he is doing great. He is starting to get irritated about sitting in his highchair for some of his feeds...but this is what he usually ends up doing during them (that is...if he isn't screaming his head off)...

His nutritionist told me that it was normal...we get tired after eating a turkey dinner...well, his belly is getting full so he gets sleepy. Makes sense to me. lol

I am going to be making an appt. with his audiologist because I know he can understand most things...but I don't think he can hear it right...if that makes sense. He understands what he knows he hears, but what he hears...I don't think is the vowels and consonants...he hears syllables and some sounds...I just want to make sure its not getting any worse. He still is only saying Ma and Ba and "ot and I" for hot and hi. He definitely has that "deaf sound" to his voice...but he is very vocal though.He is actually very loud about things, which is super great, because he totally fits into this family...we are all very loud people (its my Italian in me)!!! I think Tony and I are going to have to really think about the cochlear implant for Kenny. I want to give him the best possible future...so we are going to see what that is all about....maybe.

So that's whats going on here at the Tomecko house this week...Tomorrow my girls (Taylor and Morgan) have their first football game that they are going to be cheering at...so watch for more pics from that. And also...my twin sister, Diane and I are celebrating a birthday tomorrow! Woo hoo! The big 41...and still feeling like a 28 year old *wink wink*!

Monday, August 23, 2010

The Life That's Chosen Me - Karen Taylor-Good

This is dedicated for all of you parents of special needs kids.

I just feel like I need to share this with all my friends and readers. I never saw this video or song before...but one of my best friends sent this to me. Even though I havent seen him since a little after high school, I still consider him (and now his wife and kids) a very important part of my life.

Randy, thank you very much for sending this and thinking of me.

This song says it all!

God bless.

Sunday, August 22, 2010

Let the school year begin!!!!

I cant believe that my sweet little Kayleigh is going to be starting Kindergarten tomorrow. The little girl who puked all over her first birthday cake!!! I am going to miss her cute little face at home during the days with me but am so happy for her! She is so much looking forward to starting Kindergarten like a big kid! *ok...let the tears begin!!!! Five kids in school...and then Kenny will be starting next week for 4 days a week, 2.5 hours a day! What am I gonna do with just Gina for 2.5 hours a day? hmmm...LOTS! My oldest, Tony is going into 7th grade...WOW! We have a Communion this year also...Sydnie! I am looking forward to this school year. I can feel that its gonna be a great year for my kids and ourselves!
Have a great year kids, You'll do awesome...I just know it! Love you guys with all my heart and soul! Now...back to covering their workbooks with clear contact paper...WHAT A CHORE! LOL!

Friday, August 20, 2010

Feel Free Friday...

LOL I figured since I have SO much to do today, I'm gonna just say, "feel free to..." today.
Enjoy...and oh...feel free!
Feel free to set up camp in our small living room whenever you want...the kids did!Feel free to empty the vacuum cleaner...I hate bag-less vacuums...they are SO MESSY!Feel free to clean out the "junk drawer" in our kitchen...ummm...yeah. lolFeel free to take some tomatoes off our hands...ewps...kinda had a great crop this year...with all 50 tomato plants. LOLFeel free to organize all the school supplies for each of the 5 kids going to school this year...what a chore! I cant wait for the paperwork that we have to fill out every year...JOY! tee hee.Feel free to do my laundry...I do it every day...and because of Kenny being in the hospital...it kinda got backed up...I did manage to get the clothes organized and folded...feel free to put all shirts on hangers and put the pants/shorts away and then...dun dun dun...organize the socks. (p.s. there are 5 loads in the basement as well)

Have a great day everyone. God gave us busy days to keep busy and not worry about things. He must feel I really need to keep busy. tee hee.

Thursday, August 19, 2010

Thankful Thursday...

Since its been a roller coaster of a summer, with all the hospital stays and doctor appts., I thought it would be good therapy to write what I am/have been thankful for...so here it goes...

My Thankful Thursday:

I am thankful to be blessed with an amazing family and friends. Those that truly matter in our lives have been there for us through thick and thin. Understanding the heartaches and the triumphs...experiencing what we have to go through and have been through. Unconditional love.

I am thankful for my extremely hard working husband and best friend. He has been through more than most, works 16-18 hour days to meet deadlines, works in a mouse/ant and bug infested garage that has flooding and mold...with an occasional power outage at times...but it doesn't get him down. He has worked hard and yet has a very laid back attitude. He does random acts of kindness towards people and has a very strong faith. He is an awesome guy...and he's a twin too...I thank God for him daily.

Thankful for all my beautiful children. Thankful that God let me have each and every one ov them...including the ones that werent here on earth with us for too long. Each one of them has a very unique personality yet all so awesome. They are kind, polite (but do have their moments), good natured kids who don't complain about things. They love to be around all their aunts, uncles and cousins...they live for birthdays for this very reason. They understand the problems and hospital stays with Kenny and just go with the flow. Heck, my son Tony even did the dishes and cleaned the kitchen for me last night...I am so thankful for that!

I am thankful that (little)Tony is into drums, guitar and singing. Thankful that Taylor and Morgan are becoming beautiful young ladies who love fashion, drawing and becoming pre-teens. I am thankful that Sydnie and Kayleigh are no longer little toddlers (but I really miss it though), and that they have strong yet sweet personalities. I am thankful for Kenny for everything he has been through..for showing everyone that even the smallest of things are miracles...I am thankful that he is finally starting to understand commands like "go get a diaper" and "do your funny walk". I just love that! I am thankful for Gina for being Gina. For being a sweet and loving baby who gives the best hugs and is well beyond her years. I am thankful for how much she is helping Kenny and how close they are.

I am also thankful for the end of summer...when the nights are cooler and the feeling of wanting to light pumpkin spice and cinnamon candles.

Thankful for classical music that helps me relax.

Thankful for very busy days (my way of keeping in shape ;) )

Thankful for Face book, blogs, twitter, message boards and e-mail because I love reconnecting with old friends and making new ones. I have made so many mom friends, some being micro preemie moms, some with special needs, some with tons of kids like us and some with only a few kids...but a mom non-the-less. I have friends who I find to be the most strongest people around. Who have lost loved ones...husbands, babies, children...and those who have been fighting and helping those to fight to stay alive.

Its not about money, what you have, how you look or where you come from. Its about how you act and treat people that really matter on this earth.

You heard me say it before...but, I am thankful that God chose us to raise a special needs child and to also feel we were strong enough to let go of a child...because in doing so, we are able to understand what is really important in life.

I am thankful that I finally "got" how to handle this whole G-tube feeding thing. It's quite easy actually....except for the suctioning part... ewww.

I am thankful that tomorrow Kenny will be getting his backpack to hold his pump in. This way, he can walk around and play while he is getting a feed during the day.

I am thankful for Tacos because it is one of the easiest dinners that I make.

I am thankful for a way over abundance of tomatoes this year from my garden...I mean...waaaay over abundance!

I am thankful for old family recipes that I love making, like my moms spaghetti sauce, dill soup, artichokes, sausage and sauerkraut, and eggplant parmesan.
I am thankful for the early morning hour and the late night hours when it is the quietest in the house. Thankful for the loudest times to really enjoy the silence and the sounds of crickets.

I am thankful for birthdays and big families, holidays and everyday because it means that I made it through another day just that much stronger and that much wiser.

...and finally, I am thankful for hope and faith
Both have been tested and tried, but never has been lost.

Monday, August 16, 2010

...we were back at the hospital

I started a whole other post 2 days ago, but things changed at a fast rate, so now I will be updating on what happened these last two days...

On Sunday, were in the car coming back from school shopping (yes, we are still doing last minute stuff) when all of a sudden, Kenny started to cry. His cry was like he was in pain. I looked at his port site (I don't quite know the correct terms of the g-tube yet) and it was red...like irritated all around the port. It was also very hard and extended, like he swallowed a tennis ball or something. I thought it may be a gas bubble that I hear so much about with these things, so I opened the port and let some air out naturally. I thought it worked, but as the evening progressed, he just got worse and worse. I put him to bed because he was just screaming and crying. He didn't want to be held, didn't want to walk...just in a lot of pain. See, the problem with Kenny is that he is non-verbal so he cant tell us what is wrong. He was saying "ow" though. To try to touch the site was almost impossible. I ended up getting a syringe and tried to see if I could pull out some air straight from his belly...ummm...ewwwww!!! I was basically suctioning out his stomach contents...well...only 10cc because I was about to throw up from it all. I guess I still have to get a strong stomach for all of this "feeding tube" issues. Well, that didn't work, so we ended up giving him Motrin. Then we decided to just take him to the ER. Half way to the hospital, he calmed down and stopped crying. I was thinking, I He ended up falling asleep...only to wake up again 4 hours later (yes, when the Motrin wore off).

At that point, he ended up waking up EVERY 4 hours that night. I couldn't give him his over night feed either. He woke up screaming and still in pain, so I called his doctor. (This is his stomach before we went to the surgeon to remove the gauze)
We got an appointment with his surgeon who insisted that it was from the dried bloody gauze that was stitched to him to hold the g-tube in place. He removed it (all the while, Kenny is screaming in severe pain). It was almost barbaric the way they did that. My poor little guy should NOT have to suffer through anymore pain. Anyways, he told me to go home, give Kenny a bath...oh, and if he wants to go into a pool, he can...WHAT??? ummm...my kid has open sores around his site and it was bleeding and oozing junk from it...why in Gods graces would I put him in a pool?!! I take him home without any questions answered...I even questioned the fact that it looks like it was infected...he insisted that it wasn't. Jacka$$...he was sooooo wrong.

When we got home Kenny was still in a lot of pain. I put him in his highchair and hooked him up for his 3:00 feeding. Ten minutes into it, he was sleeping. Kind of odd for him, but I figured that he was just tired from being up the night before. As the day went on, the red mark didn't go away...it actually looked worse. By 6:00 His head felt warm so I took his temperature...101*!!!

I called his Comprehensive Care doctor because I know all the signs of infection, and he is experiencing all of the above. She tells me to get him to the emergency room. So off I go. Another hospital visit. To make a long story short. In triage, his fever shot up to 103. We were in the ER till 3:30 in the morning with doctors, nurses and surgeons coming in and out of our room. Got him on antibiotics and in a room on the famous 4th floor, pediatric unit. There was talk about taking the tube out at one point thank God that didn't happen.

So for the last 2 days, Kenny and I were living at our home away from home. The doctors wanted to keep Kenny until today (Wednesday), but I convinced them to let us come home last night. I just couldn't see sitting in the hospital one more day. Kenny was starting to get antsy, his fever broke and he already had 2 doses of IV antibiotics in him. I could take care of him at home much better than sitting in the hospital bed where he was hating it.

So, our adventures in this crazy life is just keeping us on our toes. I am thankful for all the caring thoughts and prayers for our miracle, Kenny. I am thankful for a great group of doctors that Kenny has (not including the surgeon). I am extremely grateful for the nurses...they are run ragged in the ER and in the peds unit.

These hospital stays are starting to take toll on Tony and I. This is the week before school. I have so much to get ready...uniforms washed, ironed and put away, school supplies put together and shopping to do...school and grocery. On top of the daily stuff...cleaning the house, laundry, and taking care of the kids. The kids are doing the last of the homework they got for over the summer...and we still have to make 5 stepping stones for the 1st day of school.

It's so nice to be home...and hopefully we will get back into the swing of things soon (and no hospital visits for a looooong time).

Sunday, August 15, 2010

ART Pro Graphics: ...And for those skateboard enthusiasts...

My hubby is in the sign business as you all know...and he has finally gotten into doing something he is absolutely crazy about. Skateboarding has been a life long passion for him and now he is making boards and custom designing them for the new generation *and those from the not so new generation like him. He still can ride like he was a teenager. Gotta love a man that can skateboard. Tee hee. Anyhow, he made the board shown for his best friend who has a band named what is shown on the board...Voodoo Healin'. Check it out and if anyone needs a sign, banner, magnet, clock, or graphic of any kind...including a custom skateboard give him a call! ;)

ART Pro Graphics: ...And for those skateboard enthusiasts...: "** CUSTOM SKATEBOARDS ** Want something that no one else has?Want to be the envy of your friends?Have a skateboard made with the best mater..."

Friday, August 13, 2010

Lots of kids, lots of laughs...

The life of having a large family is never boring. Yesterday, Kayleigh woke up and wanted something to eat. I took one look at her hand and flipped out! Her hand was swollen and red, almost like a bite or infection of some sort. I called the pediatrician, and after a 20 minute wait on hold, finally got an appt. to get her in to be seen. I pack up all the kids, minus little Tony and head off to the office. We get there and as we are all walking back into the exam room, the one nurse looks at me with a smile and asks...John and Kate + 8 or the Duggars. I looked with a smile and proudly stated...the Duggars minus 11! They are happily married, work together as a couple and a family in whole, have faith and work hard. With John and Kate...I just wont go there. See....not much of a difference...lol..
So anyhow...Kayleigh has an infection in her hand from, we think, a scratch that was on her thumb. She is now on an antibiotic and feeling much better. At least, this morning her hand doesn't look like a latex hospital glove filled with air. LOL
Moving on to excitement number 2 for the day...My daughter Morgan (9) came running down the steps and exclaimed..."Mommy, my eyebrow is burning! I just washed it with soap and it did this (showing me her eyebrow)". ummmm...Baaahaahaa!! I yelled...OMG show me the soap that shaved some of your eyebrow off!! yep...she took out part of her eyebrow with a shaver! She totally denied it for a while...then, as she was pouting in her bed, I came in and just smiled at her...and then we both just busted out laughing. She grabbed a pair of pink sunglasses and stuck them on and said that she was never going out of the house without them (but has a huge smile on her face). I am so glad that I can have fun moments like this with my kids. Morgan is a great kid with an even better sense of humor!

Then you get Gina trying to act by walking around with her bra on and a wrist full of silly bands (and I am not aloud to tell anyone that its my daughter's new bra I just got her..so shhhhhh)...LMBO!!!And between it all, we have Kenny hooked up getting his feeds...

So this is just a few of the fun things that has kept me smiling these last couple of days here at the Tomecko house.

Wednesday, August 11, 2010


The days are long and demanding...the nights are all the same.
The house that's too small anyways is bombarded with boxes each day.
On top of the oxygen and breathing treatment stuff,
there are boxes of equipment, formula and medicine.
Its all for a special little boy
who seems so happy that he beat the odds of survival.
From the outside looking in, this little boy is fine.
the walk is a little off, but most would never know.
Never know that he has fought to survive,
Never know that his hearing is limited.
Never knowing that there are limitations.
His body may be scarred and battered but he smiles.
We can all learn from this little boy...
who smiles and loves his time here on earth.
He has been held by God when Tony or I couldn't hold him.
He is the one who gave him the strength to go on.
He has been given courage when everything looked dismal
When he lost his twin, he gained a guardian angel
This little boy knows no evil, he knows no hate.
He was given to our family for a very special reason.
To give us hope and courage, strength and love, compassion and respect.
Yes, the days are hard...quite crippling and exhausting sometimes.
but I take one look at my life and what was chosen for me...
and I thank God he gave me this life.
For I would never know compassion for those that had lost a child
or those that were having a hard time in life.
Never know the strength and courage it takes to raise a special needs child,
let alone 6 others on top of that.
Never know a love so deep and intense from all we have been through.
Never know the strength that I have to go on.

Monday, August 9, 2010

5 days after the surgery...

What a week it has been. Kenny was in tons of pain after the surgery. He would wake up screaming and shaking uncontrollably...that is when the morphine helped. He was not himself. He didn't want to move from the crib. He just laid there and slept. My heart was breaking for him.
Each day, the pain lessened and lessened until yesterday he was feeling good enough to want to get out of his hospital crib and walk around the entire 4th floor.
The surgery was a success. I spent everyday and night (except for 1) there with Kenny holding his hand as he slept. They started the feeds slowly through the feeding tube, so he wouldn't get too much and not be able to handle it. We are finally up to continuous feeds at night and 3 bolus feeds during the day. Now for those of you who don't know what I mean by this...just like I had no idea, Continuous feeds are when the pump is set for so much formula and it pumps it in to his tummy all night long just very slowly. His bolus feeds are also run through a pump but they are 8 oz run for just over an hour. So, this is where we are going to have some problems because at the hospital, we kept him in his crib...here at home, he is not going to want to sit in a crib or playpen for over an hour. I am now trying to find out if they have a backpack or vest to put on him so he can walk around with the pump. I put him into his highchair for the 3 feeds during the day...and you know what, it wasn't so bad. Now to figure out what to do at night. UGH.

So, if you haven't figured out by now, Kenny came home last night (around 9:00)...kinda surprised us that they said he could go home...but he's happy and that's all that matters! We are nervous about the whole thing, but I feel confident that I can work the pump and do what has to be done...just say a prayer for me...tee hee. We just have to figure out where he is going to be sleeping...see, he's been sleeping in our bed with us for the longest time, because we wanted to make sure he was ok during the night...with the seizures and throwing up and all...so now, we just got used to him sleeping in our bed. Gina is sleeping in his crib (which is in our room) and we took Gina's crib down (the one that was in little Tony's room). So, now we have to set up Gina's crib somewhere...Tony doesn't want a baby in his room and there isn't much room in there anyhow...So we may have to move the dressers around or get rid of a few to put up the other crib in either our room or the girls room. This way, Kenny can sleep in a crib and be able to get the continuous feeds all night long. Again...this is a BIG problem. I had a small meltdown last night after we brought him home and set things up. We have more medical equipment in our bedroom and house...there just isn't anywhere for us to put it all! All my emotions just erupted last night. My son has a hole in his tummy. His feeds are not just feeds, we have to treat them as medicine. He was in soooo much pain for days...my heart was breaking for him. But he is home with us and God feels that we (Kenny, Tony and I) can handle all of this. And for that, I am honored(exhausted, but honored).
Thank you all for the well wishes and prayers for Kenny throughout this time. They have worked wonders! Honestly, thank you.
One last thing...I have to say, I am such a nosey person...that while Kenny was in the hospital, I made friends with the 3 different patients moms that shared the room with Kenny. The first mom, her little boy broke his leg...really bad., the second one...whom I had a strong connection too, her little boy had his adnoids and tonsils taken out and ear tubes put in. We sat and prayed. That was a very touching time for me. Made me feel at ease with everything. And the third mom, her little boy was a 28 weeker whom had just left the NICU last week...and was back in the hospital with reflux problems. I told her to not to worry about anything and that her doctors were amazing people (yes, Kenny had those doctors as well).
This whole hospital stay has made me realize that no matter what color, nationality, religion, etc...we are all humans. I am so happy that my big mouth, noisiness took over and that I started to talk to these women. They each impacted my life very much, and I am grateful that they were there to talk.
Not to mention all of my friends and most family that has called and sent well wishes. My one friend Tammy...you made my life that much easier with what you sent...thank you! My friends who have gone through this with their kids...WOW. You guys are my hero's. Honestly. It is hard to see your child in pain....with a hole in their tummy...and have to learn to pretty much, be their nurse. It just amazes me that how some people have no clue how hard life really is. They just ignore and fluff it off. They carry on with their lives without a call or anything to ask how Kenny is doing...not even to drop a little note on FB. It is just sad. I guess, out of sight, out of mind. All I have to say is...WOW. Thank you all that have helped us this last week. From watching the kids (Nick and Marlyn) so Tony and I could spend some time at the hospital, just the 2 of us with Kenny...to phone calls and e-mails to see how Kenny was doing...Thank you so much.
So anyhow, Kenny is home. Its been very hectic here with me trying to make sure he gets his bolus feeds every 3 hours...on top of cleaning the house, taking care of the other kids, washing clothes, and getting things ready for the kids to start school. Its a little bit more work then imagined, taking care of a special needs child but God thought we could handle it..and the smile on Kenny's face and the love in all my kids hearts shows us that we have been and are doing good by it.

Thursday, August 5, 2010

Kennys surgery update

Made it through surgery with flying colors.

He's in a lot of pain...has been all day, so he is on pain meds.
Will fill in the details when I get a moment.
Thank you and please keep the prayers coming for a noneventful recovery.
I hate seeing my baby in so much pain.

Surgery day....then more to come

This morning we woke up at 5 am. At the hospital before 6...with all the kid in tow. It actually went very smoothly! The kids all slept in the clothes that they were going to wear today and I got sippy cups and diaper bag...or should I say, the big gym bag filled with an extra change of clothes for the younger kids, diapers, wipes, coloring books, art stuff (thanks Tammy), homework and snacks. And we were on our way. We had to wait in the waiting room for a short time which was fine because we took up the whole one area of the waiting room that housed the toys and T.V. *yay us!
They called us back and the older kids did awesome watching the younger kids (those of you that think the Duggars suck...I have to tell you, having a large family helps teach the kids to be responsible for others...its not giving up a childhood helping out watching a younger sibling, it a very loving and caring pre-teen responsibility that my older kids actually love to take on. It actually makes them feel more grown up and independent)...soooo anyways, Tony and I went in with Kenny and hung out with him until his scheduled surgery time 7:30. At that point, they took him back and then we waited. and waited. and waited.
Finally at 8:45 they called us back and said that he was going into recovery. I went back to recovery while Tony waited in the waiting room with the kids (who were getting tired and fussy at this time). I sat with him for quite a while and then I went to switch places with Tony so he could spend time with Kenny in recovery. I went out there and the kids (and Tony) were exhausted. I told Tony to just take the kids home and I'd stay with Kenny. And this is what a feeding tube looks like....So that is what happened on the day of his surgery. He came through with flying colors, but in A LOT of pain.
Been at the hospital with Kenny this whole time while Tony has been holding down the fort with all the kids. I will update you all with with what these last couple of days have been like. Lots of ups and downs. But for now, going back to the hospital to be with our little miracle. I honestly didn't realize how intense this surgery really was...it was major surgery, not just a simple procedure. We've had our share of emotional breakdowns within the last few days but feel very confident that we can and will handle this! Thank you all so very much for your love, well wishes, prayers and support through all of this. It means the world to us and our kids. A million thanks.

Wednesday, August 4, 2010

Kenny's surgery...

Oh boy what a day today has turned out!

It started this morning with me finally being totally relaxed and just enjoying the morning. I was listening to Soundscapes on the TV, burning a very fall-ish candle and reading the news online. Then it all came to a screeching halt. Nope...it wasn't the kids. It was a phone call from the hospital telling me that they ran Kenny's Medicaid number through and it came back invalid. ummmm...WHAT?! The kid is supposed to be going into surgery tomorrow! Anyhow...after a lot of phone calls, and a mad crazy woman threatening to call the local news if this didn't get resolved...it is just about resolved.

Kenny is having his g-tube placed tomorrow.
If all of you can please say a prayer for my sweet little miracle boy, that would be GREATLY appreciated. He has beat the odds from birth...1 lb, 7 oz (I buy ground meat that weighs more than that), BPD/Chronic Lung Disease, mod-severe bilateral hearing loss, eye problems, developmental delays, epilepsy, mild CP, mild Autism and Failure to thrive for which is the reason for his g-tube. He has beat infections after infections and has surprised us all. Hospital stays out the wah-zoo, procedures galore and much more.
We know this is the best thing for him, but we are scared to death. Scared at the fact that our son is having another operation. Scared at the fact that we have no clue what to expect with this new life with a g-tube kid. Just scared of everything.
Thank you for all your kindness, support and prayers through these last 3 years!
He is scheduled for surgery at 7:30 AM. I will update when I can.

For those of you that have healthy children, thank God every day that you never have to deal with daily meds, hospital stays, operations, and the unknown of what tomorrow will bring. Yes, we all live with the unknown, but with a chronically sick child or one with special needs, it makes it that much more scary.

Thank you again for the prayers and positive thoughts for Kenny to get through this and for us to also get through this.

Tuesday, August 3, 2010

A few ways Kenny keeps busy

As we are counting down the days to Thursday (Kenny's G-tube surgery), I thought I'd post some pics and videos of what he LOVES to play with and do...all day long. Yes, forget those expensive toys you see in the stores, my kid is a simple kid who loves household items. Give him a big box, he'd be playing in it for days!

The first item is...yes...Our silverware. He goes in my kitchen drawers and the dishwasher (it doesnt have a lock on it). Sometimes he will sit and gather them then throw them, then gather them. And sometimes he will hide them for us in other drawers, cupboards, in the couches but mostly in our heater vents and cold air returns. *all knives and anything that could hurt him have been placed up high so as not to get hurt ;) ......The next item is our colorful cereal bowls. He LOVE to stack, knock down and gather...

And finally, paper. the more pieces he can gather up in one hand or in a bowl or something, the better!
He also has his own way of talking (something that we still cant understand)

These are just some of the household things that keeps our Kenny preoccupied throughout the day. As you see, he has not been wearing his patches...its been too humid to keep those buggers on, they just peel right off his face. So if anyone out there knows of a good way to keep them from peeling off, please let me know.

For the last few days, Kenny has been feeling very agitated for some reason. The headbanging, the crying all day long, going limp on my and just miserable. He has been the happiest when I am just sitting and holding him. But on a brighter note, he has been trying to eat stage 2's and some noodles!

Again, please keep him in your prayers for Thursday. Thank you.