Friday, July 24, 2009

Fortunate and Fantastic Friday

Kenny and I (along with the help from Gina) were working on his fine motor skills today! Started out a little shaky, but as you see from one video clip to the next, he was getting it! I am trying to get him to use his left hand and arm more. I am so proud of my little man! The last video clip is the cutest...I love how he gets Gina's assistance in the last one!

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Thursday, July 23, 2009

My Version of Thankful Thursday

I am thankful for my large family because without them life would be boring.
I am thankful for my small, cluttered...falling apart house because without that I wouldn't have a home.
I am thankful for my handsome best friend, my hubby...because without him, my life would not be fulfilled.
I am thankful for my loads of laundry every day, because without it I wouldn't know how to wash clothes so well.
I am thankful for the broken ceramic tiles in the dining room to living room because without those...I wouldn't stub my toe every day.
I am thankful for my morning 24 oz cup of coffee from Speedway (best coffee BTW) because without that...my day wouldn't begin on the right note.
I am thankful for the days of rain because those are the days that I get to "connect" with my kids the most!
I am thankful for the raccoon that gets into the trash every night because at least I know that I am feeding an animal that would starve if he didn't eat our garbage (one mans trash is another critters treasure)...even though we have to clean it up every morning.
I am thankful for the constant calls on my hubby's work phone because at least he is getting work (god I hate that ring tone)!
I am thankful for fall scented candles and plug ins because this summer has been a bust...at least I can look forward to the fall.
I am thankful for all the poopie diapers that I change everyday because without those I wouldnt know the smell to the above (scented candles).
I am thankful for the Pediasure and stage 2 baby foods stacked up in my cupboard because it reminds me that Kenny is a survivor!
I am thankful for the constant...every day...therapies, doc appts., meeting with specialists because without those Kenny would not be progressing the way he is and will be.
I am thankful for summer homework for the kids, because without it...I wouldn't get the opportunity to tell my kids that they are getting older and I shouldn't have to tell them to do their homework...just practice for the school year!
I am thankful for the "lack of vacations" we, as a family, have endured because without them my kids cant bug us to "go back" to where we went on vacation.
....and lastly...I am thankful for hoping and dreaming because without those I wouldn't hope and dream for a better life (Come on Extreme Makeover Home Edition...let us "move that bus").

Monday, July 20, 2009

5 Minute Breather...

As I get a 5 minute breather (the babies are asleep and the older ones are out "making a fort"), I want to reflect on something that I have learned this past weekend.

My husband had the honor to do all the signs and banners for the NEO Challenger Baseball Tournaments. For all of you that don't know what that is, NEO Challenger is an organization that gives children with handicaps and special needs the chance to have the fun and excitement that kids that don't face a life of special needs. These wonderful children get the chance to play baseball...on a team and if they cant run or hit or catch the ball...its OK. There is no scores to keep, there is no angry parent screaming at the coach, ump or other team because it is to have fun and keep it about the kids. Our eyes were opened wide this weekend...these kids, their parents and siblings were there to have a great time. As I sat at the dance and watched these kids, their families and coaches have fun on the dance floor...wow...this is what life is about! They were happy to be alive, they didn't have to worry about if they were different, and just...I don't know...such miracles. THEY are what life is about! These mothers, fathers, grandparents, siblings....they were so proud of their special needs child...for one weekend, they didn't have to worry about PT/OT, hospitals, or equipment. They didn't have to ward off stares from other people, stupid comments or feel that they were different...they were so perfect!
Tony, my hubby, did these banners for the event...

and these...

A very cool balloon creation that was at the dance...

I finally felt like we fit in somewhere. I met a lot of people, some with harder challenges than us and some with easier, but all in all, were just thankful for what God has given them. Sure, we all want our kids to be perfect in society's eyes...but what is perfect? What is the perfect life? Is it being able to go here or there whenever you want because you don't have to spend the majority of the time at the hospital for appts., therapies or sick visits? Is it not having to deal with a child who cant hear, walk, talk, see without glasses, eat solids, not have any developmental delays and/or needs oxygen when they get sick? Is it never having such horrible flashbacks of being in the NICU and wondering if your child will live or die...and then watching one pass away right before your eyes and unable to, as a parent, be able to save them? Is it being secluded every fall through spring because of fear that your child will die because of RSV or pneumonia just from the common cold? Is it wondering if your child will be one of "those kids" that other kids stare at or make fun of because they walk, talk or act a little different?

Perfect is what you make of what you have. We have lost a child, and have his surviving twin who has many problems that we are working with. To us, Kenny is Kenny...he has his problems which we know he does...everyone can tell us that he "looks just fine"...but we know...we know that he should be walking, talking, eating solids, communicating more with us...but he's not...and that's OK. We are doing the best we can, getting as much help for him as we can...giving up so much for him AND for our other kids because we chose to have our big, beautiful family. Life is not about how much materialistic "stuff" you have...its not about shopping for the newest fashions, getting your nails done every week, buying the newest...whatever. This past weekend was about connecting with the most loving, caring, unselfish and understanding people I have ever come across.

To have a child die in your arms and then be faced with the challenges of having a special needs child ON TOP OF having a large family...it is...humbling.

Ohio Challenger Baseball 2009 Tournament held in Northeast Ohio

Monday, July 13, 2009

Birthday party in review...

This past Sunday, we celebrated Taylor's 10th Birthday and Gina's 1st Birthday! Taylor had her friends over and we also had family...so it was a very full house with tons of food and a yummy double cake with chocolate mousse in the middle...and let me tell you...the best cake EVER!!! Her smile in this picture says it all. I am so glad to give my kids a birthday party. You know....we cant go to this or that, but a good old fashioned house party is just as good. I had crafts for the girls and music blasting in the back yard...it was a good party.
Taylor even got a "birthday hat"...
Gina enjoyed her first birthday cupcake!
And Kenny was his very cute self.
Here is me feeding him

Kenny and Gina are still feeling a little sick...I really think Kenny's ears are bugging him really bad. He is banging his head all the time and the only way I can feed him (or should I say, get him to eat) is holding him like this.

This week...Ophthalmology appt., 2 PT appt., 1 OT appt., Audiology on Friday and we finally got a speech therapy evaluation on Thursday. Sigh...very busy but very well worth it.

I just want to give a shout out to my hubby, Tony. Thank you for everything you are doing. I know that you are stressed out with tons of work and no help...Thank you for everything you are doing for us and our family. I love you! I am happy that you are busy...miss you...miss that we don't get to spend time together...and wish I could help you, but glad that things have picked up a bit. I love you honey.

Saturday, July 11, 2009

What to expect when you have a micro preemie.

Doctor appointments with about 10 different "specialists" and therapists
Breathing treatments all day long, everyday.
Carrying around a 22 lb. kid because he cant walk.
tripping over oxygen tanks
No room in the house because of all the therapy and medical things.
Sickness
Frustration
Anxiety about everything from, fear of death to a dirty house...and everything inbetween.
Anger at the question Why?
Sleepless nights
Hospital stays.
Throw up from coughing/breathing problems AND from oral adversions.
Not looking but looking for "the next bad thing"...crossing eyes, left side weekness from eye to leg. etc...(I guess that this should go in with the anxiety one.)
Isolation from friends and family...well...from the whole real world as you used to know.
...these are the negatives that no one tells you about.

The positives are:
Having and raising a beautiful miracle that is your micro.
Patience
Special friends and resources that I never knew existed if I didnt have a child with special needs
A new respect for life and what is really important.
A new me...I dont know if it is better...but it is definitly new. You know...when they say that losing a child will change you forever...it did so much. Part of Tony and I died. Our dream of having twins died. Raising Nick AND Kenny was so badly wanted...it hurts just thinking of it, but having a child with special needs changed me that much more.

Yes, the negatives out weighs the positives...but only in numbers. The positives are deeper than anything I have ever imagined.

Ok...so this week has been CRAZY! Started off with PT and OT for Kenny... so now, its 2 days a week for PT and 1 day a week for OT. I strongly feel that he needs more OT at this time, so when we go back next week, I'm gonna talk to them about it. He has a very weird looking, tight pincher grasp that I want them to work on among other things. I has a meeting with all of Kenny's peeps that work with him from his service coordinator, his teacher at his school during the school year, The county board health director, his child psychologist and his person that works with him from the Regional Infant hearing clinic. We were working on where we want Kenny to be for the next 6 months. Our goals are hopefully very reachable. I told them that I want Kenny to be the best he can be and to not look at him as a kid that has handicaps, but a kid that is going to learn on his own time (but with lots of help from us). Those goals include: Getting Kenny to stand without holding on to anything. I didn't want to say walking because I want to reach goals that I know he will achieve. If he does start walking within the next 6 months, that will be a bonus for us all! We want him to start to drink from a sippy cup. He is still drinking from a bottle. He doesn't know how to work a sippy cup. I have tried over and over again. We think it has to do with the whole chewing/swallowing/oral thing, he has going on from being intubated for so long. Another thing we want is for him to start keeping food down. Oh yeah..this will be a big accomplishment for us! He throws up EVERYTHING. Just yesterday I gave Gina those little Gerber Graduate meat sticks (cut up). She was eating them like a champ. Then you get little Kenny who WANTS to eat them...put one in his mouth...rolls it around in there for a while....comes over to mommy who was sitting and checking my e-mail...and BLAAAAAA....all over me. I had puke dripping down my legs, in my lap...yuck! I guess that will teach me to be on this dang computer when the kids are around. LOL!

We also want Kenny to start to communicate with us...either with sign language or speech. Right now, when Kenny wants something, he will either point to it or smile when we go through the list of "what do you want? do you want __ or __ or __?" He is very good at signing "all done", but that is about it. He used to sign "more", but he stopped doing it, even though I sign all the time to him.
Its just such a job. Yes, parenting itself is a job, but having a micro preemie is overtime!

I want to hear from other micro preemies that were born at 23 weeks gestation...anyone out there? I need to hear from you what you are going through. What to look forwards to. What to expect. I dont know what to expect...the outcome of him being born SO, so early. I NEED to know.

Right now, we are fighting off a double ear infection and upper respiratory issues again with Kenny...up all night (even more now that he is sick) with breathing treatments around the clock. Puking when he goes into these coughing fits, banging his head even more now that he is on his 4th ear infection in about 5 months. Not very fun at all. Then Gina has an ear infection and Kayleigh is coughing like crazy...what is up with this? Summer is supposed to be the "healthy" months!

This week coming up we have his ophthalmologist appt. I am very anxious to see what they say about how his eyes are starting to cross. It's just another issue that we are going to have to deal with.
Tomorrow we are celebrating Taylor's 10 birthday and Gina's 1st birthday... so tons of cleaning, shopping and setting up for that. I just love our family get-togethers. You know, the priest at Tony's uncle's funeral yesterday (RIP Uncle Bob...you will be missed) said it best. Family is everything. Family and friends. This is why we have these parties...not for the gifts that the kids get, but for our kids to grow up with their Aunts, Uncles, Cousins and Grandparents. I want them to know that they have so much more than just us. To us, family is so very, very important. You are there for them when they need you. You can grow up and put your whole self into work...but in the end...what really matters? Tony's uncle Bob and his wife, Aunt Linda don't have a lot of money but they do have family and friends. And at his wake and funeral these last few days...showed a strong, loyal man who had family and friends who cried for him but also celebrated his life. A life that he shared with his family and friends. We should all learn from that. I pray to God every night that he give Tony and I strength to get through everything. That so what we have a small house that isn't in the greatest shape but at least we have one. That friends and family dont think I am ignoring them because I cant go out or talk on the phone...raising 7 kids that all want me and need me is very tough, especially one that is at therapies, doctor appts., and sick all the time. That everyone that has passed away is in Heaven waiting for the day that we can all be reunited (not for a loooong time though ;) ). That my kids grow up strong and loving and also protective of each other... oh...and that Extreme Makeover Home Edition picks us. Had to throw that in there. shhhhh.

Saturday, July 4, 2009

Independence within

May we take a few moments to think about what this day is all about. Take this moment to pray for our soldiers who are protecting our freedom. Our soldiers who cannot be here having cookouts or watching fireworks with their loved ones. May God bless you all and watch over you. And for those that have fought and come back...may this day hold even more meaning for you...thank you for everything you have done for our country. Lets also remember those that we have lost for our freedom....you gave the ultimate sacrifice for our country...thank you.


Kenny LOVED seeing fireworks! He kept pointing to where they were going off...and for the finale...his eyes were squinting but he had the look of amazement on his face...it was priceless!

My oldest having fun watching the fireworks! You know, to see your the true kid come out is so neat to see...it always seems like watching fireworks brings it out! No matter how old you are, fireworks makes you a kid again!
This one is of Kenny walking in the grass...he has massive sensory issues, so he really didn't like the feel of grass on his hands...and thank God he was wearing jeans because his legs are 10 times worse! He managed to get around and get used to it. I guess it is just going to take some time and lots of work!
I love the expressions on their faces watching the fireworks!
Kenny pointing at them! He was so excited!
So that is how our July 3rd went! Like I said, this week has been very busy with doctor appts, and therapy. It has been rainy and cold so the kids haven't missed much. Kenny is really starting to catch on to things being taught in PT. Now if he would just keep his hearing aids in.

The older kids had fun too! Taylor and Morgan have been over my sisters house, in PA for a week (its my kids version of vacation)...they are having so much fun there. Thanks Jackie for taking them this past week! And Tony went fishing with his big cousins, John, Tina and Ray...he has more fun doing guy things with them...Thank you for taking him for a few days...he wont stop talking about the fun he had with you!!!
I also want to wish my oldest daughter, Taylor, a very Happy Birthday! 10 years ago tonight, my water broke before we were going to go see fireworks...I had my little "TNT" at 3:56 in the morning on the 5th! She was my first girl out of 5, and so sweet and beautiful. I cant believe that it has been 10 years since that day. Why do I remember it like it was yesterday? Why does time have to go by SO fast. Thank you Taylor for being a wonderful, smart, happy, polite, caring, loving young lady. May the next 10 make you independent, successful, along with all of the above. Don't lose yourself to others. Stay strong, loyal to yourself, and make the right choices.

I thought the first 10 years were tough...I am so nervous for the next.
I love you sweetie!
Oh...and can someone please tell my youngest daughter, Gina...NOT to eat Earwigs! Oh yeah, she did...and let me tell you, not fun to fish out of her mouth! Ahhh...the joys of motherhood!

I have one last picture to end this post. The other day I put Kenny down for his nap. I had Gina crawling around...then...everything went silent. I was thinking to myself...what is Gina getting into now...because every mother knows...when a usual noisy house gets quiet, someone is getting into something they shouldnt....well...this is what I found...
Gina grabbed the blanket off of Kenny and cuddled up to him! God, I love my kids!

Have a very safe and happy Independence Day!
Remember the reason for this wonderful day...
God Bless America!