Saturday, July 23, 2011

Tick time to dock

The heat has kicked in and the locus are making their familiar noise that only mid summer brings...and with July coming to a close I have got so much done yet so much I really wanted to do this summer. Have you ever been there? Wanting to do so much...wanting to have a lot of fun with the family but the time and money is just not there.

Just a few days ago, I make appointments for every kid for physicals and dental cleaning/exams, ordered Kenny's month supply of medical supplies, refilled all his medicines, made appts for Tony and I for our dental visits...and then I got a surprise call from the hospitals PT/OT dept. They wanted to set Kenny up with an appt. for Occupational Therapy. I was so excited! See he was on a waiting list and they told me that he wouldn't be getting in for quite some time. So needless to say, I was beyond excited. We went yesterday for his first appt which he really needed! He actually surprised me by how much he was doing. He actually put together a 4 piece shape puzzle. She wanted to see how he did on his coloring skills...and that wasn't as good as the puzzle. She noticed that he had low muscle tone in his hands so holding crayons and silverware were going to be difficult for him. Drinking from a cup came next...and then it went. haahaa. Yeah...that was a disaster. He did amazing on following directions on lifting his legs one at a time. But he needed to hold onto something or someone doing it. We are going to be working with eating as well...which has been a nightmare. He is basically tube fed now because he just doesn't want to eat anything by mouth! So now we are going to be starting up on OT once a week for an hour and PT every other week for an hour. I am so happy that we are finally starting up on these again!

Next is the speech therapy which we start in August! I am hoping to get him (and us) into learning more sign language...he knows a few signs, but nothing to carry on a conversation...or to let us know what he wants, which is very important.

That brings me to my next request...could my readers please go to this link and vote for Kenny. We are really trying to win an IPad for him so he can start to communicate and learn. It is very much appreciated.

You can tell when you are stressed out...when little things start to get to instance...picking up medication refills and not getting the right type of syringe that you have used for ever....and then there is taking all the kids to the eye exam that your husband and self have...thinking that it would be easy. HAHA. First you have an overly happy receptionist who has a smile that I swear she super glued happy...then after we get done with our appts and we start looking for frames...there is no one to help us. We finally picked out a pair each...but when I gave them to the front desk to have her write down the frame numbers because the kids were all acting up and there was no one there to help us with the frame I handed her the frames and asked her to write them down in our files...she said yeah and went about talking on the phone...totally not listening to what I just asked her. I'm sure when we do go back to order our frames, she wont have a clue as to which frames they were. It was a disaster!

So yeah...its been busy around here and the calendar is filling up quickly, and school hasn't even started! Don't even remind me about shopping for school uniforms & supplies...

Thursday, July 21, 2011

Life is a bowl of please excuse me.

Excuse me if I'm a bit on edge today, I've had a very trying day 4+ years. See, trying to keep babies alive inside of me only to have them born at 23 weeks...the NICU, the death of Nick, the unplanned (but very much welcomed) pregnancy of Gina, the allegations that certain people made against us, the hospital stays, the seizures, the unknown of Kenny's health & unable to understand what he needs and wants. The working hard to make ends meet, the EMHE almost choosing us...and then us ending up helping the lucky family that got it. The deaths of many close family & friends. The being stuck in the house with Kenny...pretty much on house arrest because of his health and his Autistic fits. The no days off, no respite, no help. The constant go, go, go...the sleepless nights, the stressful all has finally taken its toll.

You see, what used to be a normal day of playing with the kids, doing things throughout our summer or even just some free, cooking and just enjoying life, has turned into a life of doctor and therapy appointments, feeds through a tube certain times of the day & night, medications, and unpredictable hospital stays.

Excuse me if I come across short tempered, I've had my hands full with a child who likes to bang his head, cry and scream for no apparent reason. I've had my share of "bad luck", long days, and being a caregiver (beyond being a mommy) and I am just tired. To hear a person who really doesn't have it THAT bad say that they have it bad...or that they need a vacation, day off or night out really gets to me.

Excuse me if I seem a little unsure of myself...because I honestly am. I have questioned if I could cope with having a chronically ill/special needs child. I am just following the motions of the day and let the days run me.

Excuse me if I seem to critical of people, because honestly...if you've never been a mom of a micro preemie or a child with many don't understand what it all entails. You don't know the sadness, the loneliness, the anxiety, the stress, the uncertainty, the tomorrow.

Yes, we wanted a lot of kids...but no, we never thought we'd have child with special needs or lose a child. We would never turn our backs on any one of them and love them heart and soul. I've heard people say that we shouldn't of had so many kids, it was bound to happen...well, to them...Eff you. We didn't chose a life of heartache...we chose a life of lots of love to go around...and we love each other THAT much that we are/were willing to bring many beautiful kids into this world. It just so happens that we were chosen to have a child with needs beyond normal. We do the best we can with what we have.

Excuse me if I don't return or make phone calls, e-mails or anything else that contributes to a social life. See, with 7 kids in a small tends to get a little loud. The bathroom, the basement or even waaaaaay in the backyard are the only places I can talk on the phone for about 5 minutes tops...after that, all he** breaks loose. The computer is another story...I can at least walk away from an e-mail, blog post or chat and get back to it after a few hours. So this explains my lack of social life (this blog is my saving grace)...even Facebook is getting difficult.

Excuse me if my hair is not perfect, the makeup isn't on, and I have clothes from 15 years ago...again...with 7 kids, one with special needs, I have no time to go get it colored or styled. Some days I don't even have enough hours in the day to put even eye liner on...and who has time (or money) to shop for clothes!

Please excuse the way my house is looking...with baskets of clothes & socks that I will get to eventually. My house is a home and we do the best we doesn't mean it is in deplorable living just means that I have more important things to do with my time with the kids.

Please excuse me for being a little jealous of those mommies that can just pick up and go...that has their kids in all sorts of activities. That can say they love their life or even have a little bit of one. I never thought we'd have a child with so many doesn't mean that I hate just means that I am trying to rework my life...trying to make the best of a different situation that I never thought I'd be in. Trying to understand just how much more work, time, patience, finances, energy, courage and determination it takes to have.

Please excuse me if my worries and anxiety is stronger than most...after losing a child and having a child with chronic illness I tend to get a bit more worrisome than would call it a little over protective or even Post Traumatic Stress.

Please excuse me for one day seeming fine and the next day a mess...see above.

And finally please excuse me for this little post...Sometimes life is like a bowl of cherries...somehow I got more pits than actual cherries in this bowl. I've been having a tough day and writing it out helps! Just waiting for the fresh cherries to be shipped ;)

Tuesday, July 19, 2011

Stumble Upon IPad Contest!!!

We have decided to try to win Kenny an IPad so he can learn to communicate and develop his skills and coordination...basically,work his brain a little more than he is right now. We have heard nothing but great things about the Apps for special needs kids and really think this is the way to anyhow...StumbleUpon on Facebook is having a contest and I have entered it.
I am asking all of my readers to vote for his picture and also pass this onto everyone you know...It would be a GREAT help. We just don't have the funds to get him one right now.
Here is the link...
Where Would You stumble? Photo Contest

you'll see his picture. Its under the name Michel...I have no idea why it wouldn't let me finish typing out my name...but anyhow...that's our entry....PLEASE VOTE FOR US! Thank you soooo much!

Birthdays, showers and summertime

OK, so we're in the heart of the summer and celebrated 2 birthdays this month...well, technically we didn't quite celebrate...yet. My first daughter, Taylor turned 12 on the 5th and Gina, my last daughter, turned 3 on Sunday the 17th! Where has the time gone?! I remember each birth like it was yesterday, but these days seem to be flying by! Here is a poem I wrote for Gina last year. Happy Birthday my sweet girls...I love you both so very much. You both have enriched my life 10 fold!

We spent Gina's birthday in PA celebrating my niece Nicole and her fiance, Mike's wedding shower. That's another "where has the time gone" moment! My sister's beautiful daughter is getting married in August, so its been a year of planning for my sister and her family! My Kenny and Gina are honored to be in their wedding...the flower girl and the ring bearer! So we ordered and just picked up Gina's dress (absolutely beautiful)...and this past Saturday, we went and got Kenny fitted for his suit...Now we are hoping and praying that the two of them can walk down the isle with grace and not freeze up or start crying! haha!

Anyhow, back to the trip to PA for the shower. I have to give a HUGE shout out to my amazing hubby for giving up his plans for the day, to go with me to PA. I honestly didn't want to drive out there (2.5 hours away) with 7 kids by myself...even with GPS I'd still get lost! I have also realized that I am getting old...yes, I admit it...I am getting old. I can forget driving long distances at night because my eyes cant focus very well at night. So thank goodness my love of my life gave up his golf outing...his one thing he looks forward to every come with me. This past week has been a week know where! Between making cakeball pops, going to a vendors fair...setting up a table for my Milestones for Micros (selling my cakeballs to raise money) and also setting up Tony's stuff...his ART Pro Graphics stuff to get some more work and also his skateboards that he makes. Along with making 150 cupcakes for the shower, doctor appts for Kenny, Kenny throwing his "fits", and then mix all that with the usual day to day things...washing clothes, cleaning up the house, dinners, baseball games and breaking up fights between the kids (haha)...I am so ready for a few days off...which wont be happening anytime soon! Here is a few pics from the shower. My brother in law made this awesome cupcake stand!!! I made chocolate/chocolate chip cupcakes, confetti cupcakes, red velvet cupcakes...along with...french vanilla, German chocolate and strawberry cakeball pops and banana nut with butter cream frosting cupcakes...

I know now that from now on, I will frost and decorate at the event rather than 2 hours before hand and then traveling to the destination...oh man...many of the cupcakes were destroyed. On the other hand...the shower was absolutely beautiful! My sister did an awesome job planning and decorating. The kids got much of what they registered for. I am so happy for them. They make such a great couple! I have to laugh a little bit...we filled out these cards that they passed out where we had to write a piece of advice to the soon-to-be advice to them was...have lots and lots of babies! haha! No really! Sharing your life together, being intimate and keeping busy with a family that you both have created really does keep one on the right track! Maybe lose a few marbles along the way...but for the most part its an amazing experience...having lots of kids! I also wrote that they should accept each other for who they will both grow into being as the years go on...and also to talk, laugh and cry together!

So, on August 12th my little niece will be a married woman and we will have a huge family celebration...all my relatives that I haven't seen in years will be there and I am so excited!

Friday, July 1, 2011

Real parents guide to surviving chronic illness

I know there are many ways that professionals and experts tell us how we should be dealing with a child with a chronic illness/developmental delay/or some sort of special needs...I want to give my version of may not be the best, but this is mine...

1) write, write, write. I feel the best therapy for a parent who's facing a stress different from everyday normal stress...the stress of either losing a child or having a child with many medical to write everything out. Write down everything from appointments, unusual activity that your child has shown, to your feelings and day to day life. Doctors are going to ask you a lot of questions...and it is all basically up to you as to what YOU see YOUR child doing or not doing. In writing a journal...for me, going back and looking at where this journey started when I thought I was loosing my twins at 6 weeks...I have learned that I am strong. I have written letters to my angel baby Nick, poems to all my children, my anger to different situations, my sadness of wishing this all was just a bad dream...just everything, even if it seemed stupid AFTER I wrote it. One thing I have learned with writing is that I have many days of struggle, sadness and anger...oh and a whole lot of exhaustion, but I am making it through all of this (even coming out a stronger and better person), and so will you. And who day your journal might make the best sellers list. tee hee.

2) Share your story. If that mean joining a parent support group either on line or in real life, do it. There is strength in numbers. You will not feel so alone in your struggles.

3) Use what you have gone through to help others that are facing what you've gone through. There is always something to be learned and shared in every situation. It is your job to do what you want with that knowledge. With me, I have volunteered at the Hospice to help others who are dealing with chronic illness or death of a child. It makes my son Nick's death and my son Kenny's complex medical needs something that is not in vain. It gives a reason for what this is all about...helping others.

4) Use respite. Ok...ok...this is one that I have not used...but I heard it wonderful. I am so badly in need of this one. I am adding this to my list because I haven't used this and want all of you to know that when you don't get a break from your "new" life, that it will catch up to you and you'll get burnt out (which is pretty much where we're at). Don't be afraid to ask for help. Don't be afraid to say you need a break or that you want to be able to do something with your other kids to make their lives as normal as possible. Don't feel guilty with saying you need a break either! So yeah...still working on this one over here at the Tomecko house.

5)Make sure that all plans are not set in stone. Because honestly...there will probably be a situation where you cant do what you wanted to do because of a medical or special need of some sort. There has been many times (weddings, shopping trips, visits, and also the far and few date nights) that we had to cancel things due to Kenny getting really sick or go into one of his screaming/headbanging episodes.

6) Use all the resources possible. Get your butt online and search. Go to your health provider, therapists, teachers, foundations and places of worship...and find all you can do/use for your child. If your child qualifies or SSI...get that child on it. If you find that you cant afford something that you need there are foundations that can help. There is always someone/somewhere that can help or at least lead you in the right direction. There are disposable diapers for older kids, medical supplies, quilts, photo retouch of angel pictures, just tons of resources and websites (some of which are highlighted).

7) Have good communication with your spouse or significant other. Make time (even if its for just a few minutes) to give each other a big bear hug, a quick smooch, or a loving look. Tell each other how you are feeling. Use each other for support...remember those vows (if you're married) good time and bad, in sickness or health...I know I botched it up...but you get the idea. Even with 7 living children, we still find time for each other. Keep the communication open and the love strong! Also love your children and show them its alright...different, but alright.

8) Try to look at the positive side of things. With having a child who has many chronic/special needs and also losing a child, my anxiety has gotten the best of me. DONT let that happen. It got to the point where I am afraid of a little bit of a messy house (with 7 kids, it happens), campfires, pools, even playing in the yard...for fear of having another child die. Try not to let this happen. PTSD is not something to have to live with. Get rid of negative people, situations and feelings. Seek help if you feel that its getting to you.

9) I guess this one should be part of the respite one...but here goes...First off, know its alright to cry sometimes. Its OK to be angry, jealous at others, sad and grieve at broken dreams. But also remember to look at the positive. To take time for yourself. Cut coupons, take pictures, surf the web, bake something, rearrange the furniture, garden, sew, exercise, buy new underwear (tee hee) something for yourself. You deserve've been through a lot.

10) Take a deep breath and have faith. There is a reason...a lesson that God wants you to learn.

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.