Tag Archives: MEDEK

Josephine and Isabelle – Looking Back

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The Meeting of Josephine and Isabelle (Tetrasomy 8p Mosaicism)

by Krysta Senek

(Originally Published in CDO Newsletter August 2012, Issue No. 68)

Waves of emotion filled my gut. The fear of the unknown started to settle in my heart. This was July of 2009 — the day I got Josephine’s diagnosis of Tetrasomy 8p Mosaicism (Tet 8p). So many questions raced through my brain … Tetra what? What does the “p” stand for? What does this mean for our girl? Are there any other kids with this disorder? How can I meet these families? All I was told by our genetic counselor was “don’t go on the internet because there isn’t anything out there that you want to read.”

The genetic counselor was wrong! In fact, there was a VERY important person “out there.” A little 4-year old girl from Iowa named Isabelle Kelley and I found her by registering online with The Chromosome Disorder Outreach (The CDO).

Isabelle’s mom, Lori, and I shared stories about our girls, always comparing one to the other, especially since neither of us had contact with other families with Tet 8p. While in the back of my mind I always hoped we would be able to meet each other, in reality, I figured it would be in the distant future, if ever. After all, I have no family in Iowa and Lori has no family in New Jersey. I was wrong. Happily wrong.

You see, Josephine has a “guardian angel” by the name of Carmine Iacullo, the Grand Knight from The Knights of Columbus in Livingston, NJ. After a chance meeting one crisp day in October, a pasta dinner benefit was quickly organized by Carmine to give Josephine the specialized physical therapy she needed to walk. One benefit and $5,500 later, Josephine was attending MEDEK (www.novogrow.com) in New Milford, NJ and learned to walk independently. I saw one miracle appear with my little girl and knew another miracle could be created for another. Once again, Carmine and The Knights of Columbus agreed to fund the MEDEK therapy for Isabelle.

That brings me to June 9, 2012. I was driving to Newark-Liberty International Airport, with butterflies swarming around my belly. I was about to meet the Kelley family… and Isabelle. Again, questions raced around in my head … What are they like? Will they like me? What if Josephine and Isabelle don’t get along? Will I constantly be comparing my girl to theirs?

All doubts lifted quickly upon first site of the Kelley family. That first embrace with Lori felt like I was home. I was in the arms of another mother who “got it.” Then, looking into the beautifully deep blue eyes of Isabelle, I found my Josephine. Everything felt right and all those questions I had in July of 2009 disappeared.

The week that followed was one of the most rewarding and profound experiences of my life. I went from wondering what was going to happen to marveling in the similarities of our girls. Josephine had Isabelle’s smile. Isabelle had Josephine’s eyes. Both girls had each other for the first time. And Lori and I had each other. There were no apologies or explanations for our girls’ loud outbursts of anger and frustration. There was no embarrassment because of how our girls walked and talked. There were no judgmental looks wondering what was “wrong” with “those kids”. The entire week was filled with acceptance, joy and successes. In fact, after 10 sessions of MEDEK, I am overjoyed to share that Isabelle is now walking independently! The second miracle happened, just as I had hoped.

Looking back on that short week of my life with Isabelle and Lori, I think of where I was emotionally during that first year after Josephine’s diagnosis. I hardly recognize that mom who was full of doubt, questions and mourning. I have grown to not only accept Josephine for who she is and what she has yet to accomplish, I have also realized I am not alone. Josephine is not alone. We are part of the rare world of chromosome disorders. A world like no other. And I would never trade that in for anything. Ever.

Visit this link to watch Josephine and Isabelle’s news story, featured on NYC’s WPIX Channel 11, http://www.wpix.com/videobeta/e501b642-e287-404f-a081-5f2d7c0f095b/News/Two-Girls-Battling-Rare-Chromosome-Disease-Meet-For-First-Time .

For more information on Josephine and Tetrasomy 8p Mosaicism, check out our web site, www.normalforjosephine.com .

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