Monthly Archives: October 2010

Words Just Rollin’ Off the Tongue

Posted on by
Reply

Josephine has added more words and signs to her vocabulary…every day amazes me.

New words, signs and directives are in bold green.

SPEAK:  brown bear, bird, ball, fish, woof, go, round, book, bye bye, hi, down, all done, purple, mama, dada, more, milk, cookie, tickle, again, apple, bus, open, up, stop, kick, yeah, watch, cat, shh, eye, boo, quack, bubble, pop

SIGN:  all done, ball, fish, book, sleep, bye bye, dada, sheep, music, hug, kiss, bird, bear, read, eat, more, milk, cookie, change, diaper, again, apple, up, Grammy, hungry, stop, shh, bubble

Directives:  Give Me, Turn Page, Give Kiss

Watch the video for a glimpse of her language development. You should be able to catch “up” and “down” in there somewhere.

She is perfect!  Enough said.

Stuffed with Spaghetti!

Posted on by
Reply

Love.

That’s the only way to describe how I felt after Josephine’s benefit at The Knights of Columbus (www.kofc3533.org).

Generosity, kindness, love, joy and support filled the room to the gills.  Literally.

There were approximately 125 people in attendance.  Tables were added.  Standing room only.  45 POUNDS of pasta was served!  Just to give you an idea…the average pasta event serves 10-15 pounds.

I was so moved (and still am) to see so many people (friends and family – my parents surprised us and attended as well) attend on such short notice.  I was speechless and that’s saying a whole lot coming from me.

So, THANK YOU to Carmine Iacullo, the Grand Knight of The Knights of Columbus Council 3533!  Thank you to our family!  Thank you to our friends!  Thank you to everyone that has been supporting our little girl.

Your actions, prayers and thoughts mean more to us than you will ever understand.

Benefit for Josephine: All You Can Eat Spaghetti Dinner

Posted on by
Reply
The local Knights of Columbus Chapter will be generously hosting a benefit for Josephine this Sunday, October 17, from 4:00-7:00 PM at the Council Hall (299 Eisenhower Pkwy, Livingston, NJ 07039).
Below is the posting from the Knights of Columbus web site.
The benefit is an All-You-Can-Eat Spaghetti Dinner and is $10 at the door.  There is also a cash bar available (soda and non-alcoholic drinks are included).
We will be there for most of the event.
Please feel free to email me if you have any questions.  My email is klract@aol.com.
Thanks for the support and we look forward to seeing you on Sunday, October 17!
Best,
Krysta Senek
Mom of Josephine Senek, 2 years old
(Tetrasomy 8p Mosaicism, ACC, Trichotillomania, Trichophagia)
www.normalforjosephine.com

Pasta Dinner – Sunday October 17, 2010

Our first Pasta Dinner for the 2010-2011 Columbian Year will be on Sunday October 17, 2010 beginning at 4pm at the council hall.  The proceeds of this dinner will go to benefit a 2 year-old girl named Josephine Senek.  Josephine is afflicted with a chromosome disorder called Tetrasomy 8p Mosaicism and is 1 of 20 in the world that is diagnosed with this condition.

The Senek family are parishioners of St. Raphael’s Church in Livingston and has called upon us for help.  I know that our council will do their best to support this event and the family.  If you would like to donate, please send a check payable to K of C 3533 and write “Josephine Senek” in the memo line.

Our Lady of the Mountains Council 3533
Knights of Columbus
299 Eisenhower Pkwy.
Livingston, NJ 07039

Not the 26 Leads I Was Looking For!

Posted on by
Reply

Now as a Realtor, you can imagine how exciting it is when I get a lead for a listing or a buyer.

Unfortunately, this post is not about those leads.  This is about J-Bean and her tumultuous relationship with the 26 electrodes attached to her head for a 48 hour period!

NOT FUN!

Before Josephine was diagnosed with Tetrasomy 8p Mosaicism, when Josephine was about 9 months old, we went to the neurologist, Dr. Aviva Bojko, to determine the reason for Josephine’s developmental delays.  Dr. Bojko prescribed an ambulatory EEG and a brain MRI to see what was going on.  Let me tell you…the difference a year makes!

The first time around, applying the electrodes was awful.  Josephine screamed and screamed.  But afterwards, she was fine.  I don’t think she was aware of her surroundings and her body, so it was no big deal.

That is NOT the case at 2 years old!  This time she was wonderful when the leads were applied.  Afterwards, at home…screaming, crying, sleepless nights for the hubby (thanks, Sheldon) and lots of daily frustrations for me.

Thankfully, the EEG was removed this morning and we have our Principessa back.  Granted, she is tired and grumpy.  But I will take that over what happened during the last 2 days ANYTIME!

We will have her results on November 8!  Keep those fingers crossed!

Ma, Can I Use the Phone?

Posted on by
2

OK.  So maybe that’s wishful thinking, but…

I am proud to say Josephine has started toward a new milestone with a vengeance – TALKING!

Yep.  You read it right.  Our little gal is saying words, signing words, communicating needs and making jokes (no joke!).  In fact, she’s got quite a little personality!

Granted, most of these words are hard to hear because the speech is just emerging, but each one is recognizable to the Josephine-trained ear.

Here’s a list of words, both signed and spoken, as of October 4, 2010:

SPEAK:  brown bear, bird, ball, fish, woof, book, bye bye, hi, down, all done, purple, mama, dada, more, milk, cookie, tickle, again, apple, bus

SIGN:  all done, ball, fish, book, sleep, bye  bye, dada, mama, sheep, music, hug, kiss, cat, bird, bear, read, eat, more, milk, cookie, change, diaper, again, apple

Keep an eye out for the speech updates.  I am certain I will be adding many more words soon enough.