Sunday, October 31, 2010

Kenny update...Happy Halloween

Whew, what a trying last few days. Kenny is feeling much better. He is still having a hard time with the oxygen saturation, but I really feel its because of his bad cough. He is on around-the -clock breathing treatments so that should do the trick. He is not coming home today like we were hoping. He has been throwing up and not tolerating his feeds at all, so they are starting him on Reglan and he will be seen by his nutritionist tomorrow. I also think they want him to be seen by his neurologist for the seizure as well. So, no trick or treating for him this year...which is fine, as long as he gets better.

Last night, Tony took the kids to the wedding that we were all supposed to go to. They put together last minute costumes that we had here from the previous years...and my creative hubby decided to go as "Crazy Banner Man"! He had the banner material, vinyl and mask so it was easy to put together...and it turned out pretty good!!!! See what you can do with short notice and some creativity?! LOL.
I am so glad Tony took the kids to the wedding. They needed to have some fun...especially after everything that has been going on. When they picked me up at the hospital late last night, they were all talking about how much fun they had. They were saying that it was so much better than a regular wedding...it was actually fun! HAHA!! I really wish I could have gone, but Kenny needed me to be with him...and that was more than fine with me. The bride and groom who put on this really cool wedding
He was smiling and playing with me, so that's how I know he was starting to feel a little better. Please keep the prayers coming.

You know, I always thought that because his Synagis shots stopped when he was 2, that he was immune to the whole hype of how dangerous RSV is in preemies...boy was I wrong! I have learned that because he has chronic lung disease (BPD), that RSV will be a big problem (if he gets it) for a long time. So not only were we on "lock down" during the RSV season for the first few years of his life, it will continue for the next few years (at least). Time to buy stock in hand sanitizer and paper towels!

Happy Halloween everyone!

Please stay safe and remember the kids that are allergic or have certain foods/candies that they cant have....Smarties, Dum-Dums and Pixie Sticks are a perfect choice (thanks to my friend Jen who reminded me)!
tomorrow....the start of Christmas music listening! woo hoo!

Saturday, October 30, 2010

Please say a prayer for Kenny...


Last night,we were at a costume shop picking out our costumes for a costume/Halloween wedding for today (Saturday). We were looking forward to going as Snow White, Prince Charming and the seven dwarfs...when Kenny went into a seizure at the store. It wasn't as long as the last 2 he had, this one lasted about 10 minutes...probably a little longer but we were freaking out. We were far away from our house...and from his hospital we always take him to so we went to the closest one by ambulance. They ran blood work, took chest x-rays, gave him a breathing treatment and gave him Tylenol because he had a very high fever (again) of 104+ degrees and was coughing uncontrollably. So not only did he suffer from a seizure, he is very sick. They diagnosed him with RSV and transferred him over to his hospital (Metro) where they know him. He is comfortably resting tonight but it was very scary nonetheless. RSV in preemies is very dangerous...I guess even when they are 3, it doesn't get much easier, huh?


It just goes to show you that in our life, the life that was given to us, we cant make any definite plans. Our entire weekend was changed in a matter of a few seconds.


So not only am I facing having to take care of Kenny and his RSV and seizures but I get to go through a personal heartache *completely different than Kenny's...or at least try too.

Please keep Kenny in your prayers, he is a very sick little boy. This is going to be a very long fall/winter/spring for us.

Thursday, October 28, 2010

A special Halloween at school

Yesterday was Kenny's Halloween party at his First Step Preschool. Tony and I volunteered to help out.
Kenny in the morning, looking like a cool biker dude...walking out the door for school.

At school, he gets to play in the gym...he loves being pushed on his bike (doesn't know how to pedal yet, but this is one of his things they are working on with him).Getting a hug from one of his friends that he's known for 3 years now...Tori. He loves her!In class having snack time. Kenny has his assistant right behind him helping him with things.ewps... he spotted the camera.Giving me his evil eye. LOL. He doesn't like to use the sippy cup w/straw too much.He spilled his sippy cup so he was looking at me with that look like...why are you still here with that camera mom, look?! haha Tony and I waiting at our "station" for the trick or treaters...oh, and Gina too. She helped pass out the pencils ;) My big thing for Halloween...Halloween shirts and socks! LOVE THEM! Tony worked all night long and got up early to help out with the PTU...that's why the coffee and the zombie face (still cute though *wink).Tony waiting...waiting...waiting for the classes to come around. Off to trick or treat in the halls at the stations that were manned by us parents.Wait...is that a slight smile on his face? Why yes. Yes it is! This was one of the nicest things that Tony and I have been to. To see all these special needs kids excited to trick or treat. Its something that we would never have known if it weren't for Kenny. Kids with a wide gamut of needs...some slight, some needing an assistant (like Kenny). It was so nice to see that kids are kids no matter what. They all love to do the same things. Living as a parent of a special needs child, I am so proud...I truly am.

Now I know why he looked so sick...with the dark circles under his eyes...when we got home Kenny had a great time coloring in his coloring book and playing with his cards. We put him to bed last night, and within minutes, he developed a fever...I mean...one minute he was perfectly fine, the next, he was burning up. I quickly gave him Tylenol and put a towel down (knowing he would puke...which he didn't thank goodness). We were up all night with him coughing and trying to keep his fever down...along with Kayleigh. She came home from school yesterday and fell right to sleep. Now she has been fighting a fever for the last 3 days but felt much better yesterday so I sent her to school. Bad idea. She woke up after a 4 hour nap and was burning up and coughing. So, this should make a pretty interesting Halloween weekend. We have a wedding to go to. Its a costume party wedding. Tony and I are going as Snow White and Prince Charming, and the kids are going as the 7 dwarfs...yes, I'll take pictures. I am praying the kids get better by then. UGH the prayer request is out there for us.

Wednesday, October 27, 2010

Wordless Wednesday

*OK, again I am breaking the "wordless code of ethics" on my blog...you know me, I write everything out! LOL So, here is my daughter Morgan (in the green shirt) and Kenny dancing (she taught him)...
p.s. she gets her moves from her mom *wink wink*
video

video
And some few randoms...
Never take anything for granted. You might have something one day, and the next...poof...its gone. Without warning, Without a thought. Or it might slip away slowly, agonizingly slow. Knowing that it will be gone, but unable to do anything to keep it. Having to go through the days with a smile on your face, acting like nothing is wrong. Nothing is happening, when in fact, the pain is so strong, intense...and the sadness is held deep within. Hold onto every good feeling, every precious moment, every smile, every season of change, every positive, because it's what makes life. Its what gets you through the spirals, the trials and the unimaginable moments in life.
I thank God everyday for my husband, kids (...yes, every last one of them), family and friends.

Monday, October 18, 2010

Another successful surgery

Another successful surgery. Wouldn't expect anything less from this strong little guy who God blessed us with.

The morning started out with us getting all the kids up and out of the house (ready to go to school), by 7:15 am. We drove downtown to the Cleveland Clinic, Tony dropped me off, turned around, drove the kids to school then came back to the hospital (yes, it was rather hectic). The kids were a little late, but I called them in before hand. When Kenny and I got there, I signed us in. Now keep in mind, we are always at Metro, so coming over to the clinic was a huge change of scenery, so I was walking around like a lost soul with a little Kenny that was loving the fact that he could run up and down the hall. His favorite part was the pedestrian bridge, which was part of a lounge area. There, we saw Tony (hubby) trying to find a parking space. The Handicap section was all taken, so he couldn't park there...so he went to the parking garage. There...he ended up scratching up the top of the van because the entrance opening was too short for vans. I asked the receptionist where he could park, and then told her what happened, and she was telling me that it happens ALL THE TIME! He ended up parking down the street at the emergency lot and walked with Gina to our building.

Then the waiting began. Nine, ten, and finally...eleven o'clock! They called Kenny's name. We went back and they took all his vitals. He got his hospital bracelet, I got mine so I can go back in the room with him, and Gina even got one because she was such a loving and caring little sister (she held her wrist up when they were putting Kenny's on and was upset that she didn't get one...so they gave her one). From this point, everything went rather quickly. The doctor came in and talked to us, followed by the anesthesiologist and a few nurses. the child life specialist was in the room with bubbles to keep Kenny and Gina happy and content as well. Which was much needed because Kenny decided that he wanted to leave the room. He wasn't crying or anything, he just was bored sitting in a little room. The boy wanted to go, go, go! He was being very silly and flirting with all the nurses.

They gave him something to relax him...well, I gave it to him in his g-tube which is one of the great benefits of having a feeding tube! The nurse told me that it was not the greatest tasting stuff so she was going to hold him down, when I mentioned that I usually give meds through is tube...she was thrilled and said that it would work so much better than fighting him! So that's what we did!

Because of Kenny just getting over a bad cold from this past week, they wanted to make sure that his lungs were nice and clear. They gave him an Albuterol treatment just as a precautionary measure. He was already pretty relaxed during the treatment...drooling everywhere.After his treatment, he was happy as a kid in a candy store...We got one picture of the 4 of us before his surgery...one of the last pictures of Kenny with crossed eyes!Then came the time for one of us to go into the operating room with Kenny. I wasn't sure I wanted too, but Tony thought I'd be better at going in with him....like my outfit? I personally love the hair net on Kenny!


Going into the operating room to hold Kenny while he was getting knocked out was an experience that I had a feeling that I would not be comfortable with...and I wasn't. He was scared because everyone had face masks on covering mouths so he couldn't read lips or anything. I told the surgical team that he was scared because of this, so I was able to take mine off and hold him close and talk to him. He calmed right down. They put the mask over his mouth and he screamed and cried then...nothing. My heart sank and I HAD to get out of there and fast. It brought back a flood of memories of holding Nick and watching him take his last breath...It was not a very good thing for me to see happen. I was however grateful that I was able to calm my little guy down so he wouldn't be scared....boy this mommy job has been a tough job these last few years. tee hee.

The wait was a little over an hour and a half. During that time, Tony, Gina and I went to the cafeteria. Now, picture a 2 year old who woke up at 6:15 in the morning and it now being around noon...the first thought in my mind was CRABBY...and that is what we had at lunch...for all of the cafeteria to witness! Gina decided to scream at the top of her lungs as we were walking through to find a table...horrifying!!!! We got through lunch after that...but quickly found out that all the clothes that Kenny came to the hospital with, including his shoes and jacket were soaking wet from my coffee thermos that leaked. And did you know...they no longer use the hand dryers in certain places...namely this hospital! Thank God for an extra change of clothes I had in the car! So, after a series of high blood pressure episodes, we went back down the waiting room and waited for just a little bit. The doctor came out and said everything went perfect! His lungs were great, his eyes were straight and it all went very well! We went to the recovery room where Kenny was sound asleep, relaxed and not in any pain.

When he woke up, about an hour later, the nurses were surprised that he wasn't screaming and crying. He woke up in a very calm manner. He looked around, saw Gina was there calling for him and he smiled. He wasn't rubbing his eyes like the nurses said he might do because they say that all the kids are double visioned and feel like there is sandpaper in their eyes or that the eyes are itchy...nope...not Kenny. This little boy has been playing, smiling and acting as though he never even had eye surgery! The only way that you'd know he had surgery is that the whites of his eyes are beat red and swollen. Actually very painful looking but on the other hand...check out how straight his eyes are!This morning the whites of his eyes are even more red, but they told us that is what is supposed to happen. We just keep putting in the drops in and giving him Tylenol. He has a follow-up appt. today and is also being seen by the visiting nurse this morning. The doctor told us that now we are working with a clean slate with his eyes. From this point on, we can now work with his vision which was lost in the one eye. His brain has to reprogram to start seeing out of the eye that the brain shut down because it was crossed. They can work on the scar tissue, vision therapy and maybe even glasses. I am just so happy that this is another surgery that we no longer have to worry about. It's over and done with and he came out of this one smiling with no set backs!

Sunday, October 17, 2010

Another surgery for Kenny...

Whew...what a week! Kenny and Gina have both been fighting these colds that just don't seem to want to go away. They both had fevers, coughing...and oh, the snots! Because of Kenny and his lungs, he has been throwing up from coughing so much. Today (Sunday) was the first day he actually didn't puke, and his nose started to clear up towards the evening. We are hoping that by tomorrow, he will be healthy enough for his eye surgery in the morning.
His eyes have been crossing and, well...pretty much stay crossed so cosmetically they are going to try to straighten his eyes. It doesn't mean that he will be able to see out of both eyes just yet, because the brain has to start functioning and figure out that both eyes are aligned. See, when a child is crossed eyed, they don't have that double vision that us adults have when we cross our eyes. You know, you get sick to your stomach and headachey...nope...with a child, the brain turns off the vision in the eye that is crossing. So basically, Kenny has only been seeing out of one eye or about a year now. Hence the partial reason of why he falls all the time and has no depth perception. So after his surgery, we will be starting vision therapy to train his brain into using both eyes. Right now, Tony and I made the decision that we wanted our son to look as normal as possible...since he has so much going against him with his delays and disabilities. We really want to give him a chance to look as normal as possible. Not saying anything bad about how his is...to us, he is perfect, its just that kids can be very cruel and we don't want that for him as he grows up. We want to give him a fighting chance in life and not be looked at weird or called names. We owe it to Kenny to do what will be good for him in his future.
They will also be checking how bad the scar tissue is on his eyes from the laser eye surgery he had from R.O.P. when he was in the NICU. We don't know how bad his peripheral vision has been affected from it but we do know that he has nearsightedness though.

So if you all can just say a few prayers for Kenny for tomorrow, it would be greatly appreciated.

Friday, October 15, 2010

Friday, October 15, 2010, National Pregnancy and Infant Loss Awareness Day

Today is National Pregnancy and Infant loss Awareness Day.
Please light a candle at 7:00 pm.
In honor of Nick, our 3 miscarriages and for all of those that has lost a pregnancy or child.

As I light my candle tonight, I pray that all of our angels are together and that we find peace in knowing they are together with God and all of our relatives that have passed on. I pray that one day, they can find a way to stop premature labor. I pray that one day, they can save even the sickest and smallest babies. I pray that no mother, father, grandparent, aunt, uncle or siblings have to experience such a painful loss that hurts well beyond anyone's imagination. I pray for every woman who has experienced the joys of finding out that your going to be a mommy only for it to turn to devistation when you hear, "I'm sorry, the baby has no heartbeat".


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Tonight I'm lighting a candle for my sweet angel baby, Nicholas and my 3 miscarriage babies that I never got a chance to meet or hold, but still love as much as if I did. Nick, Mommy misses you more and more each day. I thought as time goes on, it would get easier, but it doesn't. I dont ever want to forget how you smelled or looked. Those 2 1/2 days that you were with us, were the happiest days of my life. I had my twins. I was a mommy to twins. I dont know why God decided to take you...I am still trying to figure that one out, but I can only hope and pray that Uncle John (my brother who passed away at age 24) is with you. As you were dying, I told you to look for Uncle John...I hope you found him. You were a beautiful little man who I wish you could have stayed and been part of our huge, crazy family with all your brothers and sisters....and....as you know....you ARE a big brother to your sister Gina. Kenny, your twin is doing great. But you already know that. He has some major lung issues, hearing loss, epilepsy and developmental issues but I tell him every night before he goes to sleep that you are always with him (so you better be!) LOL!!It's so hard sometimes because with all the craziness of life and the doctor appts, PT/OT and any other appts. that Kenny has, I just look at him and see you. Sometimes its really good, but most of the time, it is really hard. I think, wow...I would have had 2 beautiful little boys doing this or doing that. It really sucks sometimes. I also hope that one day we will meet again, and you will know that I am and always will be your mommy who tried to keep you inside of me for as long as I could. I am so sorry that I went into labor with you guys. I am feeling tons of guilt over it...still trying to figure things out. Anyhow, sweetheart...Mommy loves you very much! (boy do I miss you terribly)
I light my candle with my head held high to honor my miscarriages and my Nick...I thank God that he gave me you all, even if it was only for a very short time.

Thursday, October 14, 2010

never...part 2

This post is a follow-up to my last post....
I forgot to add just a little humor to it, so here it is...
I never thought that I'd have to duct tape EVERYTHING because of Frick and Frack (pictured below)!
I never thought I'd have to duct tape the utensil drawer because my son is obsessed with taking the silverware out and hiding (strategically placing) it everywhere!!!
Same with the dishwasher... I have also taped the oven door closed because Kenny loves the sound of slamming it open and shut (all day long)!

Oh...and the refrigerator. Yes, we had to buy a new one. One that is much (MUCH) smaller than our old one, but it just so happens to be the perfect height for Gina and Kenny to get into...I mean, really get into!!! Gina had already eaten leftovers, pickles, gotten into the ketchup, milk, salad...oh yeah...if they can reach it, they've gotten into it!
So this is my plan....duct tape everything and keep the makers and stock holders of Duct tape very happy...until Kenny and Gina are 30!