A life less lived

Calgon take me away

Who knew that two adorable little kids could turn into coughing oozing mucus machines??

Still sick, made a second trip to the doctor's office. Prescription cough meds and antibiotics for Autumn who now has an ear infection too . Green stuff just pours out of Aidens nose like a slime river. It's been 6 days and still counting. Great winter break :-)

New Year

4:17 PM Edit This 5 Comments »

There was a time not so long ago when New Year's Eve was my favorite holiday. My parents always had plans on New Years Eve. As a young child I remember spending the night at my grandparents home so my parents could go out. I started celebrating with my friends at sixteen and never looked back. Christmas was ok, hannuaka too, halloween was only good if there was a party and even then it lost its luster when I became too old to trick or treat. Never cared much for valentine's day either. New Years Eve was the night I looked forward to all year. Good friends, good food, lots of drinks and bar hopping in Manhattan. Music was always involved, what band was playing where. Fast forward to parent hood. My last New Years out was five years ago. I've been OK with it up until this year. The kids are both sick. I mean SICK. Coughing, fever,dripping nose, pink eye, (with all the glorious eye boogies) vomit and let us not forget to mention the perforated bleeding ear, ear infection that decided to join in on the fun today. My poor man always has to up the anti. At the doctors office his ear started bleeding. Needless to say I held it together in the office but I am seriously freaked out. They are on all types of medication and now I worry about this being a reoccurring thing with Aiden. One more problem to add to the list all before he is even two and a half years old. So my day today after the doctor was wiping noses, cleaning eye boogies and trying to force fluids into both the ozzing mucus factories. I forgot it was New Years' Eve until I was trying to figure out what to do about dinner! Now the kids are in bed (coughing) my plans for tonight are to medicate the kiddies in another two hours and probably sleep on the couch. They had me up so many times last night it almost doesn't pay to go upstairs to bed. I really need a vacation! Maybe when this all blows over my husband will take me away somewhere for a weekend.( if you are reading this Mike hint..hint..Mohegan Sun) My birthday is coming up and that would make a great gift.

Well happy New Year to all and to all a good night.

December

5:08 PM Edit This 4 Comments »

I can't believe how long it's been since I've blogged. I always have time to peek in on my WS friends blogs but never get around to updating mine. I always have time for others and rarely take the time for myself. I was supposed to go out tonight for some grown up time with a girlfriend but she wasn't feeling well. I have been looking forward to it for weeks. So here I am 8pm on a Saturday night, at home about to put my pajamas on! I need a life seriously.

My next big scheduled night out won't be until february. The WS Tri State area fundraiser. I have the sitter lined up and I'm looking forward to wearing heals and carrying a purse not a diaper bag!

The house is starting to look festive. A tree would be the finishing touch. With everything going on last year we didn't get one. Autumn is looking forward to getting one, this will be Aiden's first. I love the smell and decorating it. Growing up we never had one. It's still a novelty for me. Real beats fake any day even with the messy clean up.

Aiden seems to be coming along. Had questionable tests results lately that put a dark cloud over the holiday season. The hormone test I had done for growth factor came back low, the pediatrician was not worried but I have been trying to get ahold of Dr. Morris to discuss it. Haven't heard back from her ,it's been a few weeks. At our recent cardio visit they noticed what might be a new area of stenosis. The cardiologist said it was probably a miss read sine his BP came back normal. She said come back in 6 months but I want to retest much sooner. I called her after the appointment but she was at a conference. The misread thing is not sitting well, he had one open heart surgery and each cardio visit is nerve racking for me. I was just starting to relax when this new glib appeared. I hope it is only a misread. We are on month two of LCarnitine, I'd love to say he looks like superman but really haven't noticed much change. It does help with the constipation and I think it is boosting his appetite. Our IFSP meeting is in two weeks. This will be our last since by this time next year he will have aged out of E.I. I don't understand why they can't keep him until school age (5) . It will mean a whole new set of therapists and the end of home sessions. Seems like a long ways off but they get the ball rolling months before his third birthday.

I'm excited to say he has started labeling things. Today he pointed to and labeled fish,stars, doggie and cup. People other than myself are starting to understand him, another huge milestone. I love my mini man.

Halloween Pictures

5:20 PM Edit This 6 Comments »

Stephanie and Sportaceus from Lazy Town

For the Moms

4:57 PM Edit This 2 Comments »

The Heart of a Child

Author Unknown

Whatever you write on the heart of a child

no water can wash away

The sand may be shifted when billows are wild

and the efforts of time may decay

Some stories may parish, some songs may be forgotten

But this graven record time changes it not

Whatever you write on the heart of a child

A story of gladness or care

That heaven has blessed or earth defied

Will linger unchangeable there

Why we do what we do, day in day out with little thought and often taken for granted.

Kentucky

5:43 PM Edit This 1 Comment »

Aiden and I just returned from our Mecca to Kentucky. We met with Dr. Mervis and Dr. Morris. It was our first time meeting Dr. Morris. She was extremely thorough and gave us some good advice. She is concerned with his size (small even for a WS kid) and his low tone. Dr. Mervis suggested more OT to work on the low tone and fine motor issues. We even got to meet a few other kids. There was Hannah (teenager) and a small fry like Aiden named Ella. The other kids I saw in passing. Ella and Aiden shared a snack and Aiden tried to steal her crayons. Sorry I forgot her parents names but it was nice meeting you. We are so busy there for two days that there wasn't much time to talk with you . The traveling was the hardest part. One hour drive to airport ,two hour flight, taxi to motel and shuttle van to the university. I bought a great airplane seat belt harness for kids. It was a life safer , two minutes into the flight and Aiden wanted to "go up". The harness kept him seated and then it was just up to me to keep him entertained. I went through every toy I pack, every snack and I even stooped to barf bag puppets. We survived the flights with minimal crankiness.

TWO

6:29 PM Edit This 8 Comments »

Happy Birthday to my special little boy! Tomorrow is the big day. It will be a family party at home . I'm so done with the hassle and expense of party places. Can't wait for him to open his new toys. Typical boy loves cars. Autumn took her allowance money and went out with Dad today to buy her brother a birthday present. I'm so proud of her.

Next week we are making another trek to Kentucky. Looking forward to it but not the traveling alone part. I always learn alot of helpful information there so it is worth it.