A Breathe of Fresh Air

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After being redirected by an amazing security guard through the bowels of Morristown Memorial Hospital in Morristown, NJ, we arrived at the office of Dr. Arthur Atlas, Pediatric Pulmonologist.

HI!

Good news is Josephine’s lungs are working well and present no issues at this time.

Mediocre news is Josephine’s left side of her rib cage is indeed bell-shaped, meaning the upper part of her rib cage is more narrow than the bottom (uh, kinda similar to a BELL).  At this point, it’s more of a cosmetic issue than anything else.  My thought is when she wants to correct the issue, we can DISCUSS it with her.  But if it presents no danger to her, why change it?

Dr. Atlas (also an wonderfully gentle man) wants to see Josephine in a year to make sure everything in growing in proportion to each other.

This visit made me think it’s about time to see Dr. Dreamy, er, um, Dr. Donald Putman (Pediatric Cardiologist) again.  The last time he saw Josephine was when she had just turned 1 year and he cleared her of any heart issues.  But as I understand with chromosome disorders, things can change year to year and it’s important to stay on top things.

I tell ya…it never gets old seeing Dr. Putman!

No Bones About It

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I would like to take this time to introduce to you, our newest doctor to enter Josephine’s world…(trumpets please): Dr. Mark Rieger, Pediatric Orthopedist, at The Orthopedic Center in Cedar Knolls, NJ.

I have read that scoliosis is a common characteristic of Tet 8p – about 1/2 of the kids, or 7 if you want numbers. And I’ve noticed since Josephine has been on her feet and moving more, she always leans one direction (don’t ask me which way since I can’t even tell MY OWN left and right at this point).

Besides, I was getting tired of the same old set of doctors and wanted to meet someone new…

Seriously, though…Dr. Rieger was very kind and had a great bedside manner with Josephine.

No scoliosis at this point. Straight spine. I am certainly relieved to hear that. But I also know that as she starts to walk more, her spine may change as well.  I tell ya, this gal’s keepin’ me on my toes!

He prescribed braces for Josephine – called Bilateral Low Profile SMOs – to help her strengthen her standing and walking. Josephine had her fitting last week and we should be getting them in the next couple of weeks.

Dr. Rieger also noted a rib cage abnormality, which we knew about. What we didn’t know was if it was an extra rib, bowing rib, missing rib, etc…

It was suggested that Josephine has a bell-shaped unilateral rib cage (good luck finding ANY information on THAT one…scoured the Internet for something to see, but came up short) and should see a Pediatric Pulmonologist to determine if her lungs are affected by the deformity.

Hi Ho, Hi Ho, it’s off to Morristown Medical Center we go (well, went, since I am so far behind)…

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

School Days, School Daze

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OUT OF DISTRICT!

These 3 words are music to my ears…and ones I wasn’t certain I would ever hear.  I have heard that West Orange has a great child study team that looks out for the best interest of their children, but didn’t believe it until we saw it.

Josephine’s preliminary transitional meeting was scheduled for January 28.  In attendance were our EI Service Coordinator, a West Orange Preschool Case Manager/Social Worker, our EI PT (Lana), our EI ST (Carrie), Sheldon Daddy, myself and Josephine.

Given the rarity of Josephine’s diagnosis, I was prepared to bring a 48 page Power Point presentation, complete with over 50 pages of articles about the 13 other cases documented.  After a firm reprimand from our Stepping Stones family (Josephine’s group therapy school), I decided to forgo all those pages.  Instead, I created a one page document, listing Josephine’s 4 diagnoses and 21 symptoms related to the Tet 8p.  (click on this link to access the specific document – Symptoms)

That document was ALL that was needed for the case manager to determine the West Orange program was not suitable for Josephine’s needs.  No explanation was necessary.  No fighting was needed.  Of course, it didn’t hurt to have her therapists there also – in fact, it further solidified the decision.

What was originally supposed to be a preliminary meeting quickly turned into the second meeting to arrange for the evaluation to formulate Josephine’s IEP (Individual Educational Plan) for the Fall 2011 school year.  The child study team evaluation is scheduled for March 15, 2011.

We were also told to check out several private schools and were given a list of those schools, which matched the list I already had in my head.

The schools for consideration are:

1.  The Children’s Therapy Center in Fair Lawn (already toured on Feb. 4)

2.  The Horizons School in Livingston (tour scheduled for Feb. 15)

3.  The ARC Kohler School in Mountainside (tour scheduled for Feb. 16)

4.  P.G. Chambers School in Cedar Knolls (tour scheduled for Feb. 17)

Once I have toured all the schools, I will let you know my assessment of each, along with our 1st and 2nd choices (hopefully).  I have my favorites from what I’ve read and heard about, but I am really trying to keep an open mind until after I see all of them and can compare adequately.

The good thing is we have this option, which gets Josephine one step closer to getting what she deserves:  a life that’s “Normal for Josephine”.

Weight Check at 29 Months

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Happy to report A WEIGHT GAIN since our last weight check in December!!!!

After a visit with the pediatrician, nutritionist and GI, Josephine had a weight gain of 12 OUNCES, bringing her weight up to 19 lbs., 6 oz.

Of course, my worrying back in December was for nothing, but you just can’t take ANYTHING for granted when determining things for Josephine.  Every ounce counts.  Every inch counts.  Every bite she takes counts.

But to know Josephine is gaining weight brings such a joy to my heart and relief to my mind.

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

Cruisin’ with Friends

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Well, cruising with one friend, although Josephine would disagree about the friend part, at least in this video.  Yes, she loves Lana (PT), but not that day.

Josephine transitions to 3 different surfaces, which is huge – from ottoman, to chair, chair to couch and couch to table.

Almost ready to walk.  Man, that’s so cool to say.  My little girl…walking.  Wow.  What a dream come true that will be!