Extreme rally for a family in need.

I dont usually post this late at night, but I just had to write about the most amazing experience that my family and I had this evening at the Extreme Makeover Home Edition pep rally here in Cleveland. It started with us bringing non perishable food items to the Wolstein Center at Cleveland State University. We brought 2 big bags of tons of stuff for the Cleveland food bank. Then we go in and they have tables set up with t-shirts, bandannas, wrist bands and hats...all proceeds going to the family that gets the build. Of course Tony and I got one each...Morgan and Taylor were wearing them the whole evening. We also got 3 wristbands for Tony, Sydnie and Kayleigh.
Kenny got to meet some of the Cleveland Browns players...he was actually playing with them...lol. There were cheerleaders, bands...they went all out for this pep rally. Then it got down to the nitty gritty. The builders introduced themselves...I have such a new respect for these people...WOW...they are donating their time and supplies to build a beautiful house for some very special family who probably went through a great tragedy or are struggling because of one. I honestly felt that even though we were nominated...we probably didn't get picked for one reason or another...but that is soooo OK. I really mean it. I really want to help with this build in some way...painting a wall, drawing or painting a picture, maybe even just give money...I really want to help in some way. When they were showing the videos and talking about the build...Taylor and I were sitting next to each other and we both looked at each other and...yes...we were both crying!!! HAHA! I know, lame...but it was THAT emotional. We really felt that deeply about this whole thing. There is so much that goes on behind the scenes for a build to take place...there are not other words than...amazing! Everyone in the community should help...its such a great feeling to be part of such a great thing...the gift of happiness. To make a family that has been through so much...have so little to worry about. I wish I were a millionaire, because honestly...I'd end up giving so much away.
You know, right before we went to this rally, I had Kenny at his Comprehensive care appt. where we are concerned that Kenny, even though he has this feeding tube, is not gaining weight. he is just maintaining. At that appointment. I was just looking at Kenny and the way he was acting....his typical self. opening and shutting the drawers and door to the room, yelling like he always does...not in a mean way, but the only way he knows how to communicate. He was smiling and just being cute. I asked the doctor if he sees this a lot. The way he acts. What I really wanted to ask was...is my child...um...retarded(not being politically correct here, sorry)? I know that sounds cruel...but it has run through Tony's and my head. I mean...really. I am being honest. We haven't gotten a true diagnosis...almost like the elephant in the middle of the living room thing...but is it that he is mentally disabled or is it this being a "micro preemie" thing? I see other moms of micros on their blogs writing and to me, their kids are almost normal. I mean...there are some with CP, but that is not what I was getting at. I know Kenny has some form of CP...his walk is really off and his one arm curls under when he walks...he's got tight muscles and weak muscles as well. I am talking about developmentally. He is waaay behind in this area, I see it so much because of Gina...and other kids that are Kenny's age. I want my son to be normal. I dont want him to have to deal with this the rest of his life. He's had to deal with so much in these last 3.5 years...its not fair to him. Anyhow...the doctor never gave me an answer. Do I really want that answer? ah...who knows. I know Kenny and as long as it is not bothering him...I will try my best to not let it bother me (in front of him any how), but it will always break my heart.
He is going to have to be hospitalized again if he continues to not gain weight though. The doctor wants to run several tests to rule things out as to why he's not gaining. Yes...another thing to worry about. Its almost too much after this week we've had...
So that is about all.
We had such fun at the rally...it took my mind off of his doctor appt.

So please...all of you that feel that life is getting the best of you (kinda like me)...help someone. Do something nice for a neighbor or something...or maybe even a stranger. It makes you feel so much better inside. What a beautiful thing EMHE and the builders...oh...and all the sponsors and people that donate...do for a family...just beautiful...Everyone should be so helpful and generous to strangers all the time, because honestly, no one really knows what has gone on in someone's life to make them what they are. And no one should judge!

An Everlasting love...

This week, my head was spinning from everything that had gone on within these last three and a half years...I vowed that I would not look back at it all, but sometimes it just hits me...today is one of them. I am missing my baby . In a perfect world, I should be giving my twins hugs and kisses, dressing them up alike for certain things, and being a mommy to two 3.5 year old little boys who are healthy, walking and talking up a storm and getting into everything. But this isn't a perfect world. My Nick is in Heaven enjoying all the glory being with the Lord, my brother John, Grandparents and my three babies that were miscarried. THEY have the perfect world...we are still here for a reason. Still learning and doing what our purpose is. Instead, I have a heavy heart that will always have a piece missing. I have a little boy who is the love of my life but he cant tell me that he loves me, can only tell me by a huge smile, a hug, or the intense loving look in his beautiful brown eyes when he looks at me. I have a child who is in the hospital at least once a month for one thing or another. A child who has and will continue to have to struggle with so much...breathing, hearing, talking, walking, learning, being able to communicate...how frustrating that must be to not be able to express what you want, feel, say or do. When a doctor tells a pregnant mom to be, "lets just make it one more week" or, "every week inside you makes a big difference", they know what they are saying. A 24 weeker is so much more viable than a 23 weeker...and so on and so forth...If I could have just kept them in for another week or two...If only. To think, I was hoping and praying that we'd come out of this mess unscathed. We really did. We thought, "well, he's home from the NICU, he is healthy and there is nothing wrong." Then the floppy muscle tone mixed with the tight muscles started...the developmental delays, the RSV, pneumonia, the hearing loss diagnosis, Autism, the eating problems, seizures and now his eyes...what more? Uhhh...no...I don't want to know the answer to that. LOL. I guess that is the question on everyone's minds...including the doctors. See, Kenny is more like an experiment in the making...sort of. Even doctors are not quite sure of all the things that can and will happen to a 23 weeker. We all are pretty much waiting for something else...praying for nothing to happen but ready when it does.

After all this...all this nightmare that Tony and I (and the kids) have been through, God has given us something very special...He has given us strength, faith, and love. Strength to face ANY problem. You know, after burying Nick and having to take a second plot right next to him as a "just in case" for Kenny, because it was THAT serious of a situation when they were born. Every day we go there to visit Nick we are reminded how much of a miracle Kenny is...and how much of a blessing that the 2 days of having Nick with us, was. It reminds us how close we came to losing Kenny...many times. God has big plans for him, I just know it.

Our trials and tribulations have brought Tony and I closer than ever (to some peoples disappointment..LOL) We have learned to talk, cry, express ourselves to each other. We don't take anything for granted anymore. God has blessed us with 8 beautiful kids and the opportunity of being pregnant three additional times, but were cut short by miscarriages. Each one, each loss...each trial and triumph, has showed us just how fragile life is. How God is in charge and we are here to just do the best we can with what is given to us. It is up to us to make the most of it. And that is what we are doing. We sometimes just hold one another and just thank God that we have each other. We really are soul mates with an everlasting love.

We, as a family, are stronger and better from all this. We have learned to not take cr@p from people that wants to bring us down. We have learned to not point fingers at people when we don't know the full details of the situation. We have come to respect ALL walks of life and how people act. We have become more devoted and giving from all of this. My kids are loving, caring kids who will go out of their way to help any kid/person that no one talks to or picks on, or has a physical or developmental handicap. It is so beautiful to see my kids interacting with kids that many kids would be scared to even try to talk to. We have learned that FAMILY and friends are extremely important. We have learned that life is too short to bother ourselves with negativity, because we have to stay positive with all that has gone on. Sure, I have my days of just wanting to lay down in bed and just wish this nightmare away and wonder why us, why Kenny, why put our kids through all of this...losing a brother and having a brother that has so much going against him...but then I realize that there are so many people out there that are going through the same things (and worse) than what we are dealing with. My kids will turn out just fine. We will just keep showing them the love and support that we have been giving them since the day they were each born. It is what it is and God wants us to make the most of what is given to us. WE were chosen to experience all that we have gone through and will go through.

So I will go on and continue to take it day by day...to try not to look back at what had happened...but still try to not forget Nick. I want him to live on in my thoughts and mind, like any mom who has lost a child...no matter what age that child was. I want to not have to worry about leaving Kenny with a babysitter. I want to not have to worry about if kids will make fun of him when he gets older. I want to not have to worry if this next cold he gets that he will pass away. I want to just enjoy what God has blessed me with. I will do my best to do that...it will be hard, but not impossible.

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

Thanksgiving and after

Well, our Thanksgiving was SO nice! I swear, it was such a Norman Rockwell type holiday. The night before, the kids and I made chocolate pies and pumpkin pies then the kids cut up the bread for stuffing, while listening to Christmas music. Then on Thanksgiving morning, Tony and Johnny and Doug went and played their annual Turkey Bowl Football game. Tina came over to keep me company. I spent all morning cooking and watching the Macy's parade. Morgan was so excited to see the Rockettes...every year since she was a baby, she loved to watch them! LOL! Anyhow, I put on an 18 lb. turkey, tons of stuffing, 3 big heads of cauliflower, 4 huge bunches of broccoli, 5 packs of brussel sprouts, sweet potatoes, mashed potatoes, and corn. YUMMY! We broke out our good china for that feast!
Before dinner, I went to visit my Nicky at the cemetery. I put up a little tiny tree right by him. Oh the grass finally grew so its not all muddy there any more. My FIL is making a wooden cross to put up for the winter. This way, we can find where he is at when there is 2 feet of snow on the ground. Just so sad that he wasn't spending Thanksgiving with us. Hopefully he was spending it with Jesus at his dinner table. I miss him so much.
On a lighter note, Kenny just got over one real bad chest cold and has just started another one! Last week we put him back on his oxygen because of his apnea monitor alarm going off on low heart rate. Seems like when he falls into a deep sleep, he forgets to breathe...kinda scary! SOooo...the oxygen is staying put...mostly at night. He is now in 3 month clothes! Woop Woop! My almost 7 month old...in 3 month clothing.LOL! We bought him a walker to sit in so he isn't laying down all the time. He really likes it.
I took the family Christmas picture yesterday...you know how hard it is getting 6 kids to smile and look at me all at once? It was NOT easy! I wanted to take it over again, but the kids didn't want any part of that. I don't like how the tree looked in the final picture..looked kinda small..but it really isn't! OK, well today is my hubby's 42nd birthday. I cant believe that he is 42! I met him when he was 24! We've been together for a Loooooooooooong time! I love it! Well, that's all for now.

Kenny’s Hernia surgery

Everything went very well today. I had to be there at 6:00 AM, so I was pretty tired. He had the hernias repaired on both sides. He pulled through like a champ! After surgery, I got to feed him in recovery then after that, his mouth area turned blue and his oxygen level dropped. All these nurses and 2 doctors came in and gave him a higher oxygen level (2 liters) and an albuterol treatment for his lungs. He bounced back from that after he gave me a heart attack! Anyhow....here are some pics I took of him today! The nurses and doctors were amazed that he was a 23 week-er, with the way he was recovering and acting! HE EVEN ROLLED OVER TODAY!!!!!!

On another note....Happy Angel day to my angel Nick. I cant believe it has been 5 months since I held you and talked to you. You were so real to me and I really, really miss you! Thanks for taking care of Kenny! I love you honey!
Love, Mommy

yet another update on Ken man!

Well....my little man is now 5 months old...can you believe it?! We have been through tons of doctor appts these last couple of weeks and it doesn't look like there is an end in sight! But that is oooookkkkkk! Kenny is now 8 lbs. 5 oz, and is doing just wonderfully. Me on the other hand....I feel like I was run over by a mack truck! Between Kenny wanting to be held all day long, his medications, going to one doctor or another, the oxygen and the apnea monitor and then you get all the other kids in there, and oooooh boy....can you say....I need a break! LOL! joking! Anyhow. He had his eye and hearing appointments today and he passed his eyes with flying colors...no ROP anywhere to be found! Yeay! His hearing was almost as good. His left ear is fine, but his right ear seems a little deaf...but only where he cant hear real quiet sounds...not too bad! He also went for an appt. for his hernia...which he will have it operated on on Thursday. He will be spending the night there because of his lungs and being sedated for the surgery. Other than that...he is my little miracle! All the doctors keep telling me is how amaizingly healthy and strong he is for being a 23 week-er! No Brain bleeds, no Cerebal Palsey, No blindness, not that much deafness also. His lungs are still pretty bad, but he is getting the shots for the RSV season, so hopefully that will help. I am just so happy that he is hopefully going to be ok...I have been terrified about something being horribly wrong with him. Next week, he has his cardiologist appt and his peds appt.
Oh...one little funny that I thought I'd share....you know how he has to wear his nasal cannula...well we tape it to his cheeks or his temples to hold it in place....the kid has some kind of weird skin...no tape...not even the doctors tape sticks to him! At the audiologist appt today, they had to put the electrodes on his head...nothing stuck! The nurse was totally baffled, saying that the stickiness on these things will stick to anything...yeah...except for my micro preemies skin! LOL!!!
Ok...that's pretty much all. I am sorry I haven't been posting much...WAY to busy!