Monday, March 7, 2016

Kennys speech therapy is paying off (videos in post)

We are finally seeing and hearing some substantial words and signs from our little guy!
This morning when I woke him up for school, I didn't have to say a word. I tried something different...I used some signs and he signed back to me...I'm sure he felt very connected to me as I did to him at the time. 
I wanted to show a few different videos that I took of him this weekend.
The first one was one that he was sitting at my desk and turned on you tube (I have it in my favorites for him). I was wondering what he was doing in there...there was a whole lot of babbling going I got my phone out and snuck up on him...and this is what I got:
And the second one...where he is actually saying "mom...purple farm".
The only reason why we started putting the two words together is because he was showing me an animal cracker...he signed the words cracker and dog (when the cracker was a horse)...and then clear as with the sign for it (which is like a farmer wiping his chin)...Kenny does many signs with his own twist to them! 
I am especially proud of him because he is finally using an end sound...and for him...its been very slow to learn!
So...with this post I want to shout out to Kenny's teacher and speech therapists at his elementary school
and at the hospital where he goes! They have done so much with him. Much more than I could have ever imagined...and for that, I am beyond grateful and my heart full of love for everyone that is working with Kenny!


Thursday, March 3, 2016

I found the right balance...

As my blog post title states I have found the right balance...
The right balance in cleaning and getting in that exercise workout that you might have missed...or if you are like me, did...but then the day began and I started to look around at everything the kids left for me to clean...soooo...that's what I've been doing all day.

OK, before I get to my story let me give you a little background. When we first bought this house 2 years ago, we went out and bought all new things to clean the house. My favorite was my Shark Steam and Spray Mop. With a little press of a button, I knew my floors were totally sanitized and clean. It took me all but 5 minutes to clean the floors without even putting much energy into it....and our floors get NASTY! 
Fast forward to the present time. Because I over-use everything...I mean, I  wash at least 5 loads of clothes a day, sweep and vacuum the floors several times a day...well, you get the idea. When I use something, I wear it out! steam mop decided back in November...yes...way back cr@p out. My twin sis and I tried to fix it while drinking wine. I need not say anything more. It was in the garbage that week. So since then...again, don't judge...I've been using the "wet a towel and wipe the floors" method because I wanted to save up for another steam mop (which still has yet to happen). My husband was sick and tired of seeing the floors always dirty (Kenny's not really steady carrying cups and bowls), so he ended up coming home a few weeks ago with a yarn mop. I actually yelled at him because of it! There was no way on gods green earth that I would ever use one of those...and it ended up in the back of our pantry...
...and now we come to today. I have been stressed out from everything. When I get stressed, I clean and organize...everything. 
I got the pantry straightened out and the floors swept, but the floors I had two options: wet a towel and scoot the dirt off or use the dreaded yarn monster. 

It actually worked. I put my plastic gloves on and went to town. 
This is where my title to this post comes into play!
I found the right balance of cleaning AND exercising WHILE CLEANING! Just get one of these bad boys! Holy smokes, I worked out this morning for a good 60+ minutes and another 25 minutes of upper body and abs (suck in the gut while moving the arms) in my day! Not to mention...
my legs...
Scooting around the floors with a towel...BINGO! I got an hour and a half workout under my belt for today!
So, any one that wants a great workout to make yourself look and feel better...AND get the house clean...go this route! A $2 yarn mop from the dollar store and an old towel!
I owe my hubby an apology for not thinking of me (or me picturing him...picturing me as Cinderella with that nasty mop) when buying a cheap household cleaning item! He was thinking of me all along! I am going to have that bod that I am striving for...well in advance than my goal, thanks to him! 

Clean house...(worked those muscles)...Clean mind (unless...ah...nevermind ;) )!

Wednesday, March 2, 2016

a Kenny update...

I really have been very vague and off topic when it comes to Kennys heath and updates...or none at all since sometimes its quicker to post an update or a feeling on Facebook or Twitter as to whats going on...they really need to figure out how to get a blog to post a FB or Twitter update....that would be a very happy medium for me!
So I first want to start this post with all the issues that Kenny is facing still...after almost 9 years of being born at 23 weeks gestation...which claimed the life of his twin brother, Nick....
BPD Bronchopulmonary Dysplasia
Immune compromised
 is on the Autism spectrum
 Gastroparesis (slow emptying stomach)
is supplementally fed through a feeding tube in his belly (we also give his meds through it)

and a has a rare chromosome abnormality 17p13
Every morning...its the same thing. Kenny has to bring down EVERY doll and stuffed animal and set them up, say goodbye to each one when he goes to school...
then, when he goes to bed...they all have to get set up in his bed.  Its like groundhog day. Today, I just decided to leave them all set up. lol
I have also really getting serious about couponing. I have saved TONS of CASH by just couponing. I extreme couponer, but I do stock up with a good deal when I find one...key is to buy multiple papers and spend a day matching coupons to sales...which I am going to explain more in another post! But in the meantime...I have Kenny "helping" me by cutting the printable coupons (which are really just the ones I don't use...but I can give him something to do and he can work on his cutting/hand coordination skills!
 Shopping to stock up...
We also decided to finally give Kenny a haircut...SO.MUCH.BETTER! 
 As you see, he also got back his hearing aid that he broke...and is loving it. Now if we can just keep him from breaking or losing them!!!!
And...we also decided to end an era...(I'm a little sad, but it was time) to turn in our Green Machine for something that can actually handle the winters up here in N.E. Ohio
A 2007 suburban!!!
Time to have hubby start with the new set of stick figures! haahaa

And on that note...IT has been a crazy year...not much blogging, but with the new year and my vow to do several things for myself...
1)get rid of negative feelings and thoughts
2)embrace life and those in mine
3)accept what comes...
4)make cupcakes, plant amazing gardens, Gloat over my kids and hubby and their accomplishments and make awesome holiday decorations.And draw, paint and craft with the kids more,
5)helping others...which in turns makes me feel better
6)enjoy and make time for my family and friends
7)live to feel human again
8)learn something new every day (even if its just something tiny)
9)get fit and healthy...not lose weight...but gain muscle and endurance (I will not grow old at age 46). At this age, I have decided to not be sad and miserable in my own thoughts and feelings as I am feeling the effects of thinking 46 is getting old. I don't want to have to rely on meds and alcohol to make me happy...working out and lifting weights is an amazing euphoria!
 I did it all through my teens, twenties and most of my 30's...why did I ever stop?! 
10)Update this blog which really needs it
11)Get these kids grown up and ready for life. With one graduating this year and another graduating is crazy!
12)find my dang phone that Kenny took and put somewhere!!!
( say...I FOUND THE PHONE! It was in the bottom of a closet. I found it when I was looking for something else!) 

Reality hurts....I mean...hits

Non-eventful day here at the Tomecko house. The typical try to wake the kids up, get them to school, spend quality time with hubby (aka breakfast at out favorite local restaurant), my one hour of "me" time that I've been doing for over 4 months (but used to do it daily throughout my 20's-30's) 90 minute workout...woot! I am usually starting my cupcakes for the church's fish fry today, but today I was a little lazy and chose to do it all tomorrow. I have some great cupcakes that Ive been making for the last 3 weeks:
 Dark chocolate raspberry truffle:
 Boston Cream:
 Cleveland Cassata:
 Red Velvet:
 Chocolate Chip Cookie Dough:
so...yeah...I have my work cut out for me.
I even made a bunch of cupcakes for the Playhouse Theater and Il Volo, when they came to town.
*side note: The girls and I finally got a night out. I have never had a night with just my daughters (plus my niece, whom I consider an adopted daughter)...ever! So this was a very special night. We all got dressed up and enjoyed great"popera" music, while my hubby watched Kenny!

 We cleaned up pretty well...if I don't say so myself.
...So anyhow, getting back to today...I went to Kenny's ETR meeting. For those of you who don't know what this is, its an Evaluation Team Report meeting. Basically, its where all the specialists that work with Kenny get together...before his IEP meeting (in a few weeks), to go over their findings and evaluations/testing that they have done on Kenny while he's in school.
As I write this...I am enjoying a glass of red wine. Oh...forget it. I just had to take a few minutes from writing to unglue Kenny's fingers from one of the girls nail glue that Kenny got into. See...its a never ending watchful eye!
Back to Kenny's evaluation...and to why I have this nice half full glass of wine...
So the evaluation went well. We were all on the same page in terms of what he is learning and will be learning. What got me and always gets me...year after what he is doing and at what developmental stage/age he is doing them at.
Here, I have this almost 9 year old little boy who has come such a long, long way from this:
  He is on the moderate to severe end of hearing, what I thought was more of a muted, underwater sound in which he hears, is actually more of just a few consonant and vowel sounds here and there. I honestly had no idea that this is how he hears without the aids. So all those months of him not wearing his aids because he broke them...he couldn't understand what we were saying...and lost a lot of learning in school because of it.
On one hand, he knows over 20 signs, knows some of his colors, can count to sequence...most of the time. He can walk up stairs unassisted, and much more.
I also heard that everybody in the city knows Kenny. He is very popular at the surrounding schools! 
I was hearing all the great things Kenny was accomplishing while in school.
He really has a great team working with him. 
In my eyes, he really is a miracle from Heaven.
I am so honored and blessed to be this little boys mom.

On the other hand, I have the hard realization that the doctors were kinda right when they told me that developmentally, he'd be half his age...all his life.
Yeah...this is the part that is hard to swallow for me. I've been on the brink of tears since the meeting. At the meeting, I was supermom...I got into the car and it hit me like a ton of bricks.
Don't get me wrong, I really took in everything great he was accomplishing in my heart.
He is really striving to be the best he can be. He really wants to learn and is working so very hard. Just, part of me thought that I'd prove all those doctors wrong. They cant tell me that my little boy, who fought to live, is going to be learning at such a slow pace with such a low dare they! I still want to prove them wrong...but today, I am feeling defeated (just for the time being...see...still a little bit of left in me).
The tests and evaluations are showing that Kenny is between the ages 22 month-4 years developmentally in several different areas. His ataxia is showing more as he is getting older as well. He gets very shaky when he is trying to do something. He still cant write, he is using all sorts of sounds, signs, gestures and pictures to communicate...which is sometimes still very hard to understand. Its a lot like charades on an hourly basis here! hahaha. 
He still switches between his left and right hands as his primary hand to use (now...I am very insistent that he is actually a lefty...but they're insisting that they want him to use his right, that's what they're making him use at school.
I am just letting him use whichever hand feels the most comfortable to him.
His attention span is very, very short, so the PT at school wanted to dismiss him until he can concentrate more on working with him. Which I can totally understand. He is wasting her time and is cutting into his learning time when at PT and doing nothing.

The evaluations, as a whole really explains why we feel that he is going through the "terrible twos" here at home. He has been putting holes in the walls by slamming the doors back against the walls. Getting into everything...I.mean....EVERYTHING. I cant take my eyes off of him even for a moment because he's either cutting something important up, scribbling on it furniture, walls or important papers. Emptying Rubbermaid bins that hold either shoes or lets say...cherished items from my past that hold lots of meaning and memories...all over the back room floor so he can put all his stuffed animals in and carry them downstairs to set up...
...or even deciding he's going to make himself...
Its a never ending worrisome job Tony and I have. The meltdowns that he has when he comes home from school or gets ready for school...has made my blood pressure go into the high range...and it has never been high. It honestly is the hardest thing, next to burying Nick, that we have to do. 
Like I said earlier, I feel so, so...sooooo blessed to have him in our lives, but our lives and the rest of our kids lives have been on high alert for so long, that I don't think we know how to just breathe and relax. We are a big, loud and very stressed out family. LOL.

In closing, we are very fortunate that (knocking on hard as I can) he has not been sick this winter...which is amazing! At least that little bit of stress has been erased for a bit! We will continue to work with him to read, write, learn and behave as much as a typical child as possible. It is getting harder as he is getting older because he doesn't know personal space and love to hug everyone he meets. He clearly is starting to show the developmental delay...and to me, its sad because I don't want people (strangers and peers) to look at him differently...but I see it happening more and he gets older and older. I know how cruel life can be and its eating me up that his pure heart might get hurt because of being made fun of for being younger (developmentally) in an older body.

I sometimes used to question my parenting abilities...but now...I am always question my parenting abilities with raising a special needs child, along with 6 others (from an 18 yr. old down to 7)
I...we love them all so much and want the best for them. We've never really gone on a family vacation together...and because of that, I am sad...and wish I could turn back time. With so much that has happened with Kenny, it has been pretty much impossible to even think about going out to eat at a restaurant...let alone a family vacation for a few days to a week. I know the kids resent us for add another stress-er to the mix! haahaa!
I want my kids to become adults with great big hearts and love to share. With a faith that wont shatter and the ability to live a well balanced, financially stable life from honest hard work. Not to mention having a very close family at hand...immediate and is so important to us that our kids are close with cousins and aunts and uncles...and never lose that bond!

My husband and I are tired...very, very tired from this journey that we are facing alone, but will never give up on any of our kids.