Wednesday, August 29, 2012

So Long, Summer!

I really can not stand the summer months!  Its too hot, too sunny, and too boring for the kids.  I lovingly look forward to September every year.  It is my official start to Autumn.  My favorite.  Without fail, I ease into September like stepping into my favorite pair of jeans(which now, sadly, have a hole in the ass).  It doesn't hurt that school starts up again, either!  Hubs decided to take a few days off from the full time job to spend it with the kids before they head back.  I love him.  Today is the first day of his long weekend, and I feel relaxed already.  Even David seems calmer this morning.
 I feel like we've been stuck in this house since June.  We take a trip down to my parents' house once a week for dinner, and we made it over to my aunt's house once or twice.  Throw in a few sleepovers, and that's been our summer.  I'm almost embarrassed when people ask the kids how their summer has been.  Honestly, its been shitty!  LOL  We don't have a pool and we can't afford day trips...so all David can do is stare blankly when the question is asked.  I am determined to try and give them a better summer next year.  Even if we do only stay home, I have GOT to come up with a way to make it less boring.  I realize that there is only so much that I can do, but I promise...I'll try harder next year!  

On a Dup15q note, we were stunned this passed weekend to learn that Fen Li, from Bead Flora and Jewels decided to donate a portion of her proceeds to the Dup15q Alliance!  She even threw in free shipping for the weekend to sweeten the deal!  My sister "met" Fen back when she was planning her wedding.  Fen HAND BEADED all of my sister's bouquets.  They were(and still are) exquisite!  Marie and Fen have since become friends, and dear, sweet Fen, hearing of Emily's diagnosis kindly "paid it forward".  I am deeply touched.

So on a sappy note, I'll leave you with a few pics of the kids that I snapped off yesterday.



 

Sunday, August 26, 2012

Blogging Vacation and a Diagnosis.

I don't even know where to begin.  I've been in a serious rut.  I haven't blogged, baked or done very much sewing.  I hate that, but I just can't seem to find the energy.  Hubs is still working obscene hours to make ends meet.  I'm on a two week hiatus of babysitting Mason while both of my kids are home for the last two weeks of summer break.  Its been a nice break, but I miss the money! LOL  School starts again on the 5th for Emily and the 6th for David.  

David has been giving me a serious run for my flippin money.  Its been an intense power struggle over the last few months, and it seems to be escalating.  I'm at the end of my rope, and I'm pretty much willing to do anything to get this kid back under control!  Bed time is the WORST!  I have to start early every night because I know its going to be 20-30 mins of back and forth with him.  Someone just recommended 60 mins of quiet time before bed(no tv, video games, ipad, etc).  I'm going to attempt 30 mins to start and see how that goes.  Its so hard being on my own @ bedtime 5 nights out of 7.  

Emily has been doing well.  She loved her summer session...she loves school...and that makes me relax.  In June she had to have some dental work done.  She had a massive cavity that I never even knew about because she won't let us look in her mouth very often.  Have you ever been bitten by a 6 year old that has super human strength?  Its no picnic!  Anyhoo, we took her to the dentist for the first time...and I had no idea HOW he was going to get a good look...but he was fantastic!  He got in there just enough to see what he had to and decided it would be our best bet to put her under general anesthesia to have all of the work done.  Well, the next day, the monster cavity decided to rear its ugly head, and the whole left side of her face was swollen!  After and seriously traumatizing trip to the oral surgeon, that was taken care of.(seriously, we've been through a lot of stuff with Emily, but this ranked top 3 worst experiences EVER!)  About a month later she had the rest of the work done, and she's good to go!   

In other Emily news, after many tests, and even more trips to clueless doctors, she has a diagnosis.  She has what is known as, Chromosome 15q Duplication Syndrome...or "Dup15q".  I was a little sad a first, because the genetic counselor couldn't really give us much information on it.  I felt as though we were still in the dark.  It is very rare, but other kids have presented with similar duplications and symptoms.  I went right home, and consulted with Dr. Google.  I found the Dup15q AllianceThere it was, right in front of me...a home for Emily...somewhere she would finally belong.  In that moment, my sadness lifted, the clouds parted, and a sense of relief washed over me.   Through their facebook page, I have been put in contact with families all over the US, and the world!  I do not have an exact number, because surely, there are kids and adults walking around that have not yet been diagnosed, but we're talking less than 1000 affected worldwide at this point and time.  Its rare.  

I feel I have a new sense of purpose.  This is what I'm supposed to be doing.  Educating, and spreading the word about Dup15q, and kids like my beautiful Emily.  Everything is starting to fall in place.  I feel my confidence rising, and my energy slowly coming back to me.  It won't happen over night, but I'm getting there.  I still miss my hubs, David still exhausts all of my emotions at bed time, and everyday has a new struggle.  However, I have decided to bring more positivity into my life.  For a while, I was full of negative energy, but I have consciously decided that I must allow the positive in, and let it take over.  Yes, some days are hard...but every moment is a chance to start over.  

video

 

Thursday, March 8, 2012

lady bug cupcakes

i've been wanting to share these cupcakes since the weekend, but my memory card crapped out!  my sister took some great pics, but i had to wait for her to upload them!  (thanks marie!)  so here are emily's 6th birthday cupcakes!  i went with lady bugs!
i used a grass tip on my pastry bag.  a little advice(that i, of course, had to learn the hard way!):  don't try to pack all of your butter cream into the bag and expect it to easily come out of this tip!  i blew out 2 bags before i realized that!(that's what i get for rushing!) work in small batches!!  the holes on this tip are small, and when you're trying to shove 5 lbs of frosting out of holes no bigger than a pencil point...you're going to have some problems! 
i got the lady bug picks, picket fence papers and mini flower sprinkles from shopbakersnook!  this is a fabulous resource for bakers of all levels!  prices are reasonable, selection is huge, and shipping is super fast!  there are so many things out there now for anyone to take a favorite cake recipe or box mix and turn it into something special and unique.
everyone loved them!
and how about a side of goofball?


Tuesday, March 6, 2012

bad irish girl...BAD!

i should be ashamed of my white irish hiney!  they only thing i'm good at when it comes to st. patrick's day is making a mean batch of corned beef and cabbage. followed up the next day with a nice pan of hash!  i dress the kids in green, but i am just too lazy to decorate!  and honestly, i'd rather spend my money on easter stuff!  

this weekend is daylight savings time!! WOO HOO!  over the last few weeks, i've noticed the days getting longer.  love it.  also love not having to wait in the dark for emily's bus!  it was a little scary...and just weird!  as if the poor thing doesn't have a long enough day, she was climbing the steps to the bus without the sun even being up! 

the girls that hubs works with have been asking for baked goods, and who am i to deny a craving?    i haven't sent them in anything since christmas, so they're due for a fix.  i found caramel cups @ the dollar store today...think i can make them work! 

david will be home soon, i think i should try to be a little productive! 

Friday, March 2, 2012

six.

my beautiful emily marie turned six yesterday!  my oh my!  i can't believe it was six years ago that our world was flipped upside down with this wonderful creature! 

your smile lights up my world, sweet girl! :o*




Tuesday, February 28, 2012

busy week

did i really get my whole house cleaned before david got home from school?  you bet i did!  not sure how, but i'll take it!  ok, so i dusted everything yesterday, but hey, whatever works!

i don't love busy weeks like this.  i tend to get a little scatter-brained and overwhelmed.  tomorrow i have to
*go to shoprite
* bake a million cupcakes for emily's birthday on thursday
*and i have parent/teacher conferences @ emily's school.
action packed for sure.
 then on thursday i need to
*deliver those cupcakes
*attend the parent group meeting
*emily has therapy after school(we're helping someone earn her master's degree!  exciting for her, but also anything that will benefit emily is a bonus of course!)
*and i have to figure out dinner...i'm thinking pizza at this point.
 really wish i had the patience for meal planning. 

super excited about my secret opportunity that i'm scared to talk about just yet!  the pessimist in me says "keep your mouth shut, or it will blow up in your face!"  the optimist in me says "EFF YOU PESSIMIST, shout your news from the rooftop!"  let's see who wins over the next few days lol

how 'bout some recent pics of the kids.  gosh, they're getting big!

 Emily recently donated another 8 inches of hair to Pantene Beautiful Lengths
David is just a big old goofball!  His new favorite thing is singing and dancing to New Kids on The Block's "Hangin' Tough".  I kid you not.

Monday, February 27, 2012

phases

every time david goes through a new phase, i want to crawl under a rock.  this latest one is a battle of wills!  i will come out victorious child...you better believe it!  bed time MEANS bed time!!   you already went pee, you had your sip of water, you have your 5 blankets--in the proper order, your fan is on, and lightening mcqueen is ON!  now SLEEP! 
...oops, i think i forgot to turn mcqueen on...oh well...SLEEP ANYWAY!   






Sunday, February 26, 2012

its been a while!

wow, i haven't blogged in so long!  i come back, and i have over 11,000 page views?!  nuts i tell you! 
i miss my little 'ol blog.  i'm hoping to start writing again on a regular basis. 

emily is about to turn 6...SIX!  where does the time go?  before i know it she'll be taller than me and want to drive the car!  i can't take it.  she is currently sporting a black eye due to a mishap @ school!  the poor thing!  par for the course!  she has started transitioning into the next class at her school.  i'm sad to have to let her first teacher and new little friends go, but its time for her to move along.  she'll only be across the hall, she'll still see them!  love her school.

david is doing terrific in school!  they moved him up to the inclusion class already!  he is still receiving speech 3 times per week, but he's moving right along!   i am told that all of his peers love him(YAY!) oh--and he's potty-freakin'-trained!  100%!  i didn't think i'd ever see the day.  thought he would be in his LUVS til he was 30 for christ sakes! LOL

hubs is still working his balls off.  its still difficult to only have him home 2 nights a week to help me with the kids, but it has gotten easier over the last year.  he loves his part time job, and thank goodness for that!  if he hated it, we'd probably hate each other too! lol  one day at a time.  luckily the kids have finally adjusted, and its been easier for all of us to get through a night. 

what about me?  i'm not killing myself with baking, and crafting, and sewing and.... 
i was doing much too much, in a small window of time.  i was burnt out.  still am a little.  i'm trying to work on me.  make myself happy, and not do things because i feel like i have to.  part of me wants to get back to that...part of me doesn't.  thanks to pinterest, i have a new interest in this blog, and my creative side.  people are pinning me.  say what?!  it blows my mind, it really does!   i've also started watching my friend's son 2 days a week(soon to be 3).  its nice to have a little one in the house again, but i get to send his cute little tush home at the end of the day! lol  the money is nice too! 

i've also had an opportunity come up that could be pretty cool...thanks to this little blog.  don't want to jinx myself though, so that's all i'll say for now!! :o)