Thursday, June 30, 2011

Second half of the NICU video

Some NICU pics

Just found some pics and video from when Kenny was still in the NICU.
This really shows how and why he has an aversion and inability to chew and swallow

God bless those of you who are new to the Micro preemie/NICU experience. I remember wondering if Kenny would even come home from the NICU...afraid to touch him...scared for him.

Tuesday, June 28, 2011

The elite club...

I cant believe its been four years. Four years since I last seen my baby Nick. I never thought I could even make it through the first year, yet, I have made it through four years. People were right about losing a are never the same. I don't think the same. I don't have the same outlook on things as I once had. I have more fear than most with losing another child (with all due right to). I have a stronger sense of protection over my kids, my husband...anyone I love. I can sympathize and understand more than most for those that have just lost a child. It takes you to another place. A mom should never have to bury a child. In the NICU it happens all the time...the hoping, the praying...the letting go and then the heartache. There is no pain greater than losing a child...I can vouch for that. The feeling that nothing matters. The sick stomach of knowing what is happening and being unable to do anything to stop it. The panic of wanting just a little more time...making plea bargains...and then...ultimately having to say enough is enough.

For those around us who are not in our special mommy's thankful to and cherish every moment with your children because in our club...we wish we could see our babies grow to adulthood. We would love to hear them talk back to us...just once...Heck, some of us would love to hear what their voice sounds like...their first words. We would give everything to kiss that boo boo and make the pain go away, instead of having to say good-bye to make it go away. We would give anything to hug, kiss or smell the way their hair after running around getting all sweaty from a day of hard play.

To the new mommies in this elite heart is breaking for you. This is a club that we never asked to join but somehow we find comfort with the others in this club. It gets a little easier as time goes on.. Sure, I still have days where I just cry and want my baby back...even now, four years later. The pain never goes away but each day gets just a little easier. Our angels wouldn't want us to cry over them. They are where we all hope to be one day...sitting next to God. They are with all of those that we love that went before us. I have told my friends that now I know the reason why we lose those we comfort us mommies that are in this club. To be there for our angels when their time comes. To watch over them while us mommies cant.

To all the mommies who are next in line for joining....stay strong. Take each day as a blessing. Dont think of what tomorrow has in store. Don't be afraid to feel pain, hurt, anger, frightened, guilt, and even calmness. For He is standing right by your side through it all. And to no end!

Monday, June 27, 2011

Dream Night At the Zoo

Dream Night at the Cleveland zoo...what could I say? Simply perfect? How about...forever grateful as well. Every year since Kenny has been born, we've been invited to attend Dream Night. It is for kids that have chronic illnesses and their families to just be kids for once. It has been such a stress relief for our family. We laughed, we enjoyed, and the kids pigged out on all the zoo favorites (cotton candy, pretzels, iccees, ice cream). This year...Kenny and Gina really enjoyed the animals. Kenny loooved the tram and the fire truck...I think a little more than the animals!Daddy had fun showing him all the animals...
I got some great pics of all my kids too!

I love this one...notice the cross in the picture!

I thank God for the opportunities like this, that are given to our family...and to all the other families like ours. It makes me happy to see all these wonderful families having a great time, knowing that they are in the same medical uncertainty, day to day life that we are in.

I don't know what the future holds, so that is why we take it day by day...just like the NICU life, but carried on to our home life. I am stressed beyond belief with everything and wish he didn't have to be so sick with so many problems...but...he has shown people that life is a gift and is what you make of it.

Sure, I am stressed out and exhausted taking care of a special needs child...I cry a lot...I wont lie about that, but there is a reason why he's here (which for all medical purposes, shouldn't be from such an early delivery)...and I strongly feel that because he is here...I will be a huge advocate and parent to parent "friend" to those who are just now entering the whole new Preemie/NICU/palliative/special needs life.

Friday, June 24, 2011

Taking it day by day

The last two weeks have been pretty actually...this whole "ever since the kids got out of school" has been tough. Doctor appts, husband busting his butt with work, kids fighting (one with ODD), Kenny screaming constantly, and then the deaths of my good friends little boy(almost 4) who had Mitochondrial disease and a micro preemie mommy's little one, Dominic, that was born at 22.2 weeks....fought to live since March...and couldn't fight anymore. It just seems like we are just going through the motions of each day but not living them. We haven't had a break to just have fun, relax and just breathe and I am starting to feel the effects of it all.

Last week, since we couldn't physically be there for my dear friend on the day they had to bury their precious son, we went to he cemetery (where Nick is at) and had a balloon release for ZachWhen we got was 1:11... this is one of "those" numbers that whenever I glance at a clock or whatever, it is either 11:11 or just knew that Zach and Nick were together watching!My kids felt very bad when they heard that Zach had died...they wanted to do something for him...and this was something that we could do as a family. (Hubby was taking the pictures...which is why he wasn't in any of ya sweetie...thanks!)...And there they go...up to Heaven!

My heart breaks for the pain that my friends are going through. I pray that everyday brings just a little bit more healing...but I know the emptiness...its so raw. Please keep all parents who have lost their little one in your prayers.

And of course I had to get a picture of my boys. Look at those handsome kids with those smiles! God, I wish Nick was alive

So anyhow...

We took Kenny to the Cleveland Clinic for a second opinion neurologically. I had his huge binder with all of his medical records and I even had a copy of his MRIs. It was a completely different setting than MetroHeath....which is a great hospital in itself (my opinion). You can tell that it was a richer hospital...I mean, instead of paperwork, they now give you small computers to walk around with, fill out and give to the doctors/nurses. I thought I was in a different country! haha. Tony dropped me off because we had no idea where to park...I walked in and it was like walking into an airport terminal...huge..and they even had a waterfall and a stream in the middle of the lobby! I walk Kenny to the elevators, go to the pediatric neurology dept. and sat and waited...and waited...and waited. In that long hour of just sitting there, I'm looking around at all the parents and their kids. They were of all races, ages and backgrounds but one thing in common...all of the parents had that same look on their faces. The look of worry and stress. How can I be sitting here with all of these other families? My child never had a brain bleed...just really early...he should be fine and catch up, right? Ah...the million dollar question...he should catch up.

...Oh...they called our name...time to go in. Weight...30 pounds, height...39 inches ("oh he's tall and thin", the nurse says). Then the questions...Allergic to anything? Illnesses? What meds is he currently taking? We finally get in to see the doctor. He looked over the MRI, talked with me for a while and then looked at Kenny. He was very open and honest with me about Kenny. He told me that he sees this a lot with micro preemies...the tight muscles, the nonverbal, etc. I asked him what he thought of his microcephaly, small cerebellum and arachnoid cyst and he told me pretty much what Kenny's neurologist told us...that it happens. With an older preemie, they know the outcome of different things...but with a 23 weeker, they are still finding things out. Like even though there is no sign of brain damage on an MRI, it doesn't mean that there isn't any. These doctors are treading water with all of these preemies, unable to give substantial and point blank diagnosis because they just don't know. The medical field is just now seeing the results of being born at 23 weeks in the kids that actually survive. There is a HUGE difference in a 23 weeker to a 24 weeker in terms of survival...and I am just now understanding that. When I tell them that Kenny is a surviving 23 week twin, they are simply amazed.

The doctor told me that the small cerebellum and cyst is common in kids with developmental delays. I then asked the question that has been haunting me..."Isn't developmental delays a kind way of saying that someone is mentally retarded"? The answer...YES. heart felt like it broke into a million pieces, and the tears started to flow. How can my child be mentally retarded. no..No...NOOO!!! I want him to be normal. I want him to go to school and have a girlfriend, get married, have a family of his own and a good career. He so badly deserves the best in life...not a label of this! I know I am being politically incorrect by calling it mentally retarded, but honestly...a delay would be that he'd catch up...they just told me that he will always be half of what his age is mentally! These are just my raw feelings and I don't mean to offend anyone. See, no doctor had the balls to call it what it was. No doctor sat with me and just talked to me like a mom of a kid with tons of health issues....until now.

So this cyst that is in my beautiful son's brain...its fluid filled and is fine for the time being...that is, until he starts to get headaches. my son cant talk, he tries his hardest to communicate, has a super high pain the heck is he going to tell me that his head hurts? He already bangs his head and screams almost all day that is not a way to see if he's, back to the drawing board on this one. We'll just have to keep an eye on it. If he starts to get headaches, then operating will be the next move.

Followed by: Chronic lung disease, Gastroparesis, an immune deficiency, etc. etc.. etc...

What it really means is that my son is special. He may need a little bit more help to do things...but he is here and here for a reason...and doing pretty good for a 23 weeker, I might add. All these stupid diagnoses do is worry and upset. I hate it but I know that in order to get the right therapies and help, I need to know exactly whats going on.

I am finding out that this whole being a mom thing is pretty tough but worth every second!

It takes a lot of energy to take care and raise one child...but 7 and one with special needs...exhausting and there are no breaks. There is always some new challenge...always a new worry...a worry different from the normal family life.

Its all just a day by day life I guess.

Never take this day...your husband...your children...your life for granted.

Tuesday, June 14, 2011

Not broken but whole

God, you sent me for them to be...
with all that there was, for me to see.

A family for me, that could take care...
with the many things they had to bear.

this family you have completely entrusted
for Your plan would never be maladjusted

The love, so much love, for me have they...
to share it and honor each blessed day.

You gave up so much for me these past years...
Helping me through ones biggest of fears.

Knowing that my time is full but short...
they'll need all the love, hope and support.

Its not easy to let go of one so soon...
For sadness and sorrow, they are not immune.

This is why God has chosen you for me...
to be amazing parents for all those to see.

Its much easier here, I have to say
no more pain or sickness...I can play all day.

I know it is hard, these days seem so bleak...
God chose you for this knowing you are not weak.

So thank you, oh thank you for being the best
You loved me enough to see I needed a rest.

Please know that I will always love you...
I will be waiting in Heaven with wings I just grew.

You love me so dearly, body and soul...
I am with God now...not broken, but whole.

Written by: Michele Tomecko

This is for my dear friend, whom lost their little boy (Kenny's age), Zach to Mitochondrial Disease this morning. He spent all of his (almost 4 years) fighting this disease. He was in the hospital more than he was at home. My heart is breaking for this amazing family. They have been through what most people couldn't and yet, their faith is stronger than ever.
She has always been there for me through everything I have been though with Kenny. She has encouraged me to go to the next step with whatever I had to do for Kenny. Has always been there when I was feeling down about Nick...and I love her with all my heart and soul. God bless the Moody family.

Sunday, June 12, 2011

Dreaming of tomorrow

Sitting here this morning and thinking about everything that has been going on these last 5 years. Thinking back to how an event in one's life could change the course of everything. Be it good or bad, big or happens all the time. I went through the what ifs, the anger and the sadness. The sadness is mixed in with frustration and at times shows its ugly head. I think that's where I am now. I am frustrated at how I want Kenny to communicate yet I know he is trying his hardest TO communicate. I get frustrated with the doctors because they are telling me things that I know, but no one is sure what's really going on or what will happen in the future. Sure, I know that no one is a fortune-teller, but for me...and for this sadness/frustration part of me, I NEED to know what we are in for.

My dear friend and her family have a child Kenny's age who has Mitochondrial disease...I'm sure you followers that have followed this blog have heard me talk about her in the past...well, they have come to the part of their journey where they have their beautiful son in hospice. They threw a celebration for his birthday (which is in July) yesterday because they just don't know how much longer he will be here on earth. The pictures that were and have been taken are something that is short of breathtaking. Their faith...truly amazing...and their love for their children shines like the brightest rainbow over a lake! I love to write, but as I write little messages to her on FB...I have no words. I just want to hug her and tell her that she is the best mom ever for giving her child the best life possible...even with all the hospital stays, meds, wires/tubes AND the unknown. I've been where she is. Sure, many will say that losing a newborn is not like losing an older child..."there isn't that bond, the memories, etc"...but there IS. I may have only had 2.5 days with my son, but I will have a lifetime with the emptiness that he has left in our hearts...the place in our family where he was to fit perfectly. God bless them.

Friday I went to the hospital with Kenny to get his hearing re-checked for new hearing aids. He is a little older now, so he is more responsive to the testing. Which in turn, makes it more actual as to what he can and cant hear. And sure enough...he is still at the severe level. Since losing his hearing aid at Sydnies communion (through an autistic fit), he has been using only one aid. He will continue to use one until school starts and then, we will see about a new set for him. We are trying to get the kind that will fit a personal FM system right to it. It will be great in group settings (school, or even here at home), so he doesn't get all of the garble of many people talking at once. Anyhow, after that appt., I needed to get a copy of his medical records and a copy of his MRIs for a second opinion at the Cleveland Clinic. I love what Metro has done for my son, but I think I need some reassurance that we are doing everything possible for him. I want to make sure that we are not over looking something. I just want to be sure. I guess I am also wanting some validity as to my feelings of frustration and sadness as well.

I hate the fact that every time we (Tony, myself and the kids) go into a store and Kenny starts with his extremely loud, he doesn't scream and cry (well most of the time anyhow) but he is exceptionally the point of, if Tony or the kids separate from Kenny and I...they'd be able to find us very easily...heck, even if they went outside of the store, they'd be able to know what store we were in. The looks and stares we get from people...its almost funny. I think we should make a sign that reads...forgive my son, he has autism and is deaf (on top of many other issues)...whats your problem! I think that will get people thinking and stop judging. We also get the people who come up to us and bless us...not just for having lots of kids, but for raising a son with "special needs". Sometimes I want to scream and yell (yes this is the sadness and frustration part of me kicking in) that what I deal with on a daily basis is NOT EASY. I don't want peoples blessings or sorry eyed looks at me...telling me that God only gives those special parents, special children...I don't want to be that "special parent"! I want to be a normal parent who doesn't have to give meds throughout the day, who doesn't have to give tube feeds, who doesn't have to worry about tomorrow, who doesn't have to "live each day like it was the last". I want to be able to go on a vacations with my husband and all my kids for a week or even a weekend so we can regroup and get refreshed from the everyday stresses that we face. Stresses of having a child who cant tell me whats wrong scream and cry for no apparent reason...all day long, every day. Stresses of Gastronomy tubes that when hooked up, leak stomach contents for almost an hour into a backpack worn by a child...only to be noticed when I go to see how much longer he has on his wasn't a pretty picture. Stresses of having a child run off and be scared of losing him somewhere. Stresses of several meds all day long, every day. Stresses of wondering if this or that is normal or when his next seizure will take place...and will I/we be ready (emotionally and physically). I want to be a normal parent. I want to have a normal, not sick child. I want to have a normal family and not get so worried about a million things. I don't want to have memories of watching my son die in my arms or having to bury a child. I want all this but know that it is a far cry from reality...

So If I seem a little stressed...its because I am. If I seem a little comes and goes and I will be fine. I trudge through each day...not having time to worry about petty things that happen in life.

I didn't want any of this, yet it is who I am now.

Thursday, June 9, 2011

Bowling for the first time

A few weeks ago, Kenny's school had a field trip to the bowling alley. I was apprehensive about this because I wasn't sure how he'd react to...well...bowling. I kept going back and forth on taking him or not taking him. I finally talked to his teacher whom told me that it would be really good for Kenny to go. He would be around his peers, he would experience something to say...we took him! It was the best thing we ever did. At first he was confused. He didn't want to be put down and was very scared. He wanted to go to school, not some other strange building... When he saw his teachers and friends, his face brightened right up! Look at the smile he had on his face when he saw his teachers.... He started to bowl like an old pro after a couple of turns/pushes with Daddy's help...

The teachers and parents were telling me that even though in Kenny's class there are kids with disabilites, Kenny is protected by ALL the kids. They tell the teacher when his feeding pump is beeping. They worry about him when he is not in school. They help him with certain play times, and they make sure they get Goldfish crackers for snacks (when its their turn to bring in snacks) because its the only thing that Kenny will eat. Notice the little boy holding Kenny's hand...I just love his class and teachers! Gina even had a shot at bowling. She LOVED it.

So after we got home from the bowling field trip, Gina decided to find a black marker and do some fancy artwork on herself...LMBO! I also want to share a couple of pictures that I just love. The first one was taken at Kayleigh's field trip to a park. It was hot and after a long morning of playing, the kids took a break. They sat in the shade and listened to the story, Horton Hears a Who. This picture was just perfect... And then finally...My goofy Kenny. He got this shirt for his birthday. Perfect!