Tag Archives: Azriel Novogroder

TETRASOMY 8p MOSAICISM is NATIONAL!!!!

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My heart is exploding with pride and joy and my eyes are crying enormous tears of happiness!  After 3 years of fighting to get the word out about rare chromosome disorders, TODAY, the dream came true!

WPIX Channel 11 Morning News aired a segment by reporter, Dan Mannarino, about J-Bean and Izzy meeting for the first time.

The PIX web site has received thousands of hits and Dan got a call from AOL.com, asking to make our story the video of the day…

Now, when you Google the title of the video, the search results show the video is on the web sites of KTLA (Los Angeles), Fox 5 San Diego (San Diego), Chicago Tribune (Chicago), Fox 59 (Indianapolis).

My hands are still shaking as I am typing!

And I just found out that a parent registered with The Chromosome Disorder Outreach because of the story.  AMAZING!!!!

Of course, I need to thank Laura Gallagher for bringing it to the attention of the executive producer at WPIX News (name withheld until I get permission to add it), Dan Mannarino of WPIX Morning News, Carmine Iacullo and the Knights of Columbus, Azriel Novogroder of Novogrow and the simply wonderful Kelley family…none of this could have been completed without each and every one of you!

Without further ado…THE VIDEO!!!

http://www.wpix.com/videobeta/e501b642-e287-404f-a081-5f2d7c0f095b/News/Two-Girls-Battling-Rare-Chromosome-Disease-Meet-For-First-Time

The Love Affair of Josephine and MEDEK

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Get ready for the premiere of Josephine, MEDEK and Azriel: The World Tour.  Yes, folks!  After many long days and nights of wishing for more MEDEK videos, the producers of Josephine are proud to show off the stunning successes from Sessions 21-27.  PREPARE TO BE AMAZED (I know I am EVERY day)!

Session 21 (The Ramp)

Session 24 (The Balancing Thingy – the technical term)

Session 25 (The Steps)

Session 26 (Out of the Boxes INDEPENDENTLY!!)

AND FINALLY…

Session 27 (Up and Down the Ramp ALL ALONE!):  I would recommend watching this one and then watching the video at the top of this post to see the fabulous progress Josephine made in 6 sessions.  Tell me this little gal isn’t INCREDIBLE!

Josephine’s School Announcement!

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I know, I know…Where have I been? What has been happening with Josephine? Where is she going to school? When is she going to school? So many questions. And all will be revealed in due time…Well, maybe not. How about now? Do you have your coffee and doughnuts ready for a nice read???

SCHOOL

I am proud to announce Josephine is the latest addition to P.G. Chambers School in Cedar Knolls, NJ!

First day of school is September 8 and that is the first day I will be a mess!  I know this is best for Josephine and for me, but my heart is still all aflutter at the thought of my J-Bean being in school.  Yes, I am counting the days until she can start this new chapter in our lives, but I also know I will be wishing for her to be back at home for the first few days…or at least first few hours…teeheehee!

I WILL be following the bus on the first day, as suggested by the head nurse and Josephine’s teacher.  And I WILL be bringing my husband along because I know I will not be able to drive to and from the school, unless I can somehow manage to hold back the tears (both of joy and sadness).

Regarding the services received at P.G. Chambers, Josephine will be getting 3 sessions PT, 3 sessions of ST, 2 sessions of OT, a bus aide, a personal aide and air-conditioned transportation in her wheelchair to and from school.  We will also continue with MEDEK privately with Azriel 2x a month.

WOW!  I really can’t believe that day is almost here.

I truly have to give major props to the caring and patient staff in the West Orange School District Student Support Services Department.  I was honestly prepared for a battle like no other after hearing about other parents’ horror stories with their districts.

From start to finish, Josephine’s placement process was top notch!  Our Case Manager, Alexis, was outstanding and went out of her way to give Josephine the schooling she needs and deserves.  The Student Support Services Director, Connie, is caring and treated us like people, not a number in the district.

Will we always have great success every time an issue appears?  Maybe, maybe not.  But I hope this thoughtful approach continues on, even if we DO have to butt heads a bit.

PT and MEDEK: A Video Retrospective

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Due to my selfishness for peace, quiet and love of movies, I confess to neglecting Josephine’s site…Sentencing is immediate and will be served concurrently…ordered to post all MEDEK videos from January, February and March in current post (of which you are reading NOW)…

ENJOY!!!!

MEDEK Session 6

6 STEPS

11 STEPS

15 STEPS

MEDEK Session 7

MEDEK Session 8

She Goes A Walkin’ After Midnight…

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I truly did not think this day would happen, from the first time I heard the words “tetrasomy 8p mosaicism”.  I thought, “What is going to happen to my little girl, my perfect little girl?  Will she ever be able to walk or feed herself or talk or get married?”.

Well, I sit here today, proud to type that my little girl IS going to walk, she DOES feed herself and she IS going to talk.

Now, let’s back up…let’s talk about the walking part…as a matter of fact, let’s not talk…WATCH!

FIRST INDEPENDENT STEPS (3 to be exact – it happens around :29)!!!!!

MEDEK…Did Someone Say MEDEK?

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The word on session 2 of MEDEK…SENSATIONAL!  The progress Josephine continues to make with Azriel is just incredible.  Honestly, beyond what I thought was possible at this time, so quickly into the therapy.

I cannot describe my emotions any more than using the word “HOPE”.  The hope that Josephine can achieve what she deserves.  Now and throughout her life.

The 7 SECOND STAND

MEDEK, Azriel and Josephine

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I don’t even know where to begin this post.  I am filled with excitement, pride, wonderment, anticipation, love, joy and just plain happiness!

After much resistance, mainly because of finances, we decided to give MEDEK a chance (a portion of the funds from the Knights of Columbus Council 3533 Pasta Dinner is funding this).

What’s MEDEK?  Click on this link for all the details… http://www.cuevasmedek.com/.

In my words, it’s a form of therapy that focuses on the use of the child’s balance and core muscles to improve gross motor skills like standing and walking.  But what I can say now can’t even express what these videos show.

And WHO is Azriel Novogroder?  The extremely patient and caring PT that has 15 years experience with MEDEK.  He was trained by the creator of MEDEK, Ramon Cuevas.  Many families must travel across the country to meet with Azriel and I feel blessed he is in our backyard (well, up the Garden State Parkway about 29 miles, but that’s better than having to travel from Wisconsin or Maryland!).

Based on Azriel’s evaluation, Josephine will see him once a week for 8 weeks, at which point a re-assessment will take place.  Azriel has already said he can see great things coming from Josephine.  Well, of course, she’s our little girl with so much spunk, drive and love.  She won’t give up and neither will we.

There are 10 (yes, 10) videos here.  Take a your time, grab a doughnut and coffee or glass of wine and some chocolate and enjoy the gift given to us this Christmas 2010.

(A word to those affected by the crying, turn down the volume because it’s loud and steady).

Merry Christmas, Dearest Family and Friends!  It truly is for us.

Azriel & Josephine Meet

***My Second Favorite:  Balance Board

The Box

Leaning on the Table

Standing and Squatting

Starting to Walk

****MY FAVORITE:  First Step and Long Squat

Sit to Stand and Stepping

Assisted Walking

End of Evaluation