Thursday, April 24, 2014

When to let go? The joys of parenting a preemie

We're coming up on Kenny (and Nicks) 7th birthday...holy cow, where has the time gone?!!! I mean, it seems so long ago, but it also seems like it was just yesterday! The daily medications, doctor appts weekly, therapies and watching over him like a toddler who's gonna get into trouble the minute you take your eyes off of them. So how does a mom "let go" and let a little boy whom I've been there every step of the way...done everything for and has taught him do I help stop to break negative behavior? I'm lost. This is my downfall as a mom and a person. Kenny's OCD of having to do things himself, repeatedly, and exactly seems to stem from the fact that I'm letting him "get away with it". So to break the cycle, I'm to not do things and switch things up a bit...even if that means temper know, the ones I see 60% of the day. The ones where we can't go to church, stores, restaurants or even the rec center. I'm lost. This is the behavior part of the micro preemie thing that I've heard of, and now, have come to realize that it's very true. My son has always been one for tantrums...hence the helmet when he was a baby because of slamming his own head to the floor when he was mad or frustrated. It's a fine line to draw, because on one hand I have to be his eyes, ears and voice. I still have to help him dress, get cleaned up and sometimes feed him. I have to watch him outside when he plays because he has no sense of danger. We have medicine time which i try to make fun, backpack time for his tube feeds, and I understand him when no one else, where and how do I draw the line and set him free?
If he starts screaming and crying because he didn't shut the front I let him cry for an hour or longer or just let him shut the freaking front door? I am seeing how this can and will turn into bigger issues when he becomes a teen (remember, I have teens now...and well...The pattern is forming unfortunately). So...The World's Worst Mother Award goes to...ME!. I'm too caring and diligent. Wanting to keep peace and harmony in the house all the while teaching my kids that it's ok to throw a tantrum to get what you want.  I want to help my kids and be there for them. But I need to let go, say "no" more often...let them get mad at me and yes, throw a tantrum...all with a smile on my face and the hairs on my head turning gray. I better up those anxiety meds stat.
So....I'll take a diamond encrusted gold crown with this award...thankyouverymuch!

Ok, enough of my self are pity party, here's an update on life at the Tomecko house...
1) We moved into a big and perfect (for us) foreclosure (and it was not expensive at all). All the hard work that hubby and I...and yes, even the kids did with paying our debt down and foregoing on vacations and shopping at thrift stores...we got our credit scores high and were able to get the house that was perfect. We're still trying to figure out why it was sitting for so long without a buyer. So I guess everything does happen for a reason....even though I despise this saying passionately! I mean, all that hoping for Extreme Makeover Home Edition to help us...and the disappointment when we helped instead of being come down to finding this diamond in the the right place (down the street from the police dept, rec center, city hall and fire dept. and around the corner from the good schools for the kids for next year) at the right time (see above about working hard to pay off bills). It also helped that we had awesome realtors fighting for us, and many of our family/friends praying for us.  It makes us feel good to know that we actually made it happen!

2) Kenny had a seizure a few Sundays ago. He was fighting a fever when it happened. It wasnt a full body seizure but one where his eyes went from side to side really fast, grabbed my arm and just started lasted for about 5 minutes. Five long minutes. We had the ambulance come because ...well...that's what his doctors told us to do, and we went to the emergency room...where we waited for 3 hours. By that time, his fever broke and he was feeling much better.
We went for a checkup last week and we are raising his seizure medicine dose and I'm to video tape his seizure if he has another one. Ugh. 
We are still fighting diarrhea with him as well, so they're testing him for celiac disease...
We also went for a hearing test...and he is still at the moderate to severe level...which it is what it is.
We are really trying to figure out his speech issues and are trying to get him some help in theat dept. because the behavior specialist feels that the not being able to communicate is his biggest issue. He's feeling frustrated about not being able to talk and express himself and his wants/needs...yep...all going back to that mommy award...yay me.

3) I'm trying to get Kenny into summer day camp...but the prices are crazy outrageous! He would love something with horseback riding, and I honestly, need some down time.

4) Our oldest son, Tony is now on JV high school baseball...yay. He now wants his See the pattern...this momma doesn't want to admit defeat with the kids growing up. Hmmm.

5) Our family will be walking for The March of Dimes this Sunday. We didn't go nuts asking for donations or advertising it much because, well...I've been slightly busy with the kids and house...but yes, Team Tomecko will be honor of all our kids being born early and in memory of our angel, Nick. (I better get gong with our t-shirts)!

Life has been crazy trying to make this house feel like home. The kitchen has finally come together...and it's beautiful. Next is the yard and our vegetable garden.
To be honest, it still feels like we're staying at someone else's house...and yes, I do feel an urge to want to go home to our old house even though it was tiny and was still our house for 19 years and I sort of (in a weird way) miss it very much, but don't tell my husband this...I just got us back into a 30 year mortgage...better get a move on with my cupcake/tshirt/headpieces businesses and maybe a roadside vegetable stand this summer! hmmmm...not a bad idea...(note to self...extra empty lot thats just sitting there....a big garden (or farm), kids that need to keep busy this summer  and...hmmm....

Saturday, April 19, 2014

Easter blessings 2014

We are slowly getting settled into our new home, just in time for Easter! With any foreclosure, we are slowly finding out what "as is" means. It means finding that the back and front doors don't stay closed and locked (so new doors are in order. It means having to take care of carpenter ants...and yes...we finally got rid of them thanks to Terry the Bug Man. It means having to deal with rooms with no lights (just wires and holes in the ceilings). But it also means tons of space..I mean, Kenny can be screaming like he always does, I can go hide in another room (yay)! It means making this house ours in every sense of the word...from the kitchen to the yard!
This is our kitchen that had absolutely no appliances. we still have to put in the hood vent, light fixture and new faucet..and also, eventually an area for a coffee nook. Personal thanks to my know why.
And here is the front was all over grown, so we took it all down. This summer there will be a vegetable garden in the back (and maybe on the side of the property), hydrangeas, lilacs and many cone flowers and perennials (just like at our old house...boy tht sounds strange). We do "stalk" the old house, and I noticed that all my spring bulbs I planted last fall are all blooming...and it looks wonderful! I can't wait for this house to look as lived in and loved as that one!!!
Anyhow, Tony's shop...aka...ArtPro Graphics is finally in a spot it should a warm, dry our house...yes, the basement is all his! His dad made two huge work tables and he's been slowly but surely making it nice. No drywall yet, but I say that by next fall/winter, when work tends to slow down for him, we will be making it comfy and cozy for him!
Kenny has already welcomed us to our new house...yep...he had a seizure last Sunday. It was a focal seizure, but we called the fire/rescue because I wasn't sure about it. We got to Metro and after 4 hours were released. He was fighting a fever and bad cold. Monday we have an appt. with his neurologist, so we'll see what he says. I hate this for him. Speaking of his health, I want to direct you to one of my friends who lost her son, Jon. A fellow micro preemie/blogger who lost one of her twins early on after their birth and now had to face the hardship of losing her surviving twin son, Jonathan jonathan25weekmiracle. My heart has been with them ever since this happened. I wake up and go to bed thinking of her. This is how freaking fragile our micro preemies are...even many years after their nicu stay! It really sucks.
So, speaking of Kenny, I would like to share with you how religious my little guy is. He loves church, loves people and has a special relationship with God.
Here is the picture he scribbled a few years back...
Is an angel! I want to think he drew Nick!
And here is him watching tv. He turned this station on himself. My hubby caught his and recorded his passion for Jesus and God!

So may this Easter bring comfort and much love to all my friends. God bless!