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
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”.
Maybe this isn’t the BEST parental decision I’ve made, but it’s too cute not to post…
I was watching The Fighter and hangin’ with J-Bean. Well, I had no idea our little girl is destined to be the next Million Dollar Baby!
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.
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)!!!!!
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
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
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!
If you would have asked me last August (2009) when we would see Josephine in this position, I would have looked at you like you had 5 heads…
But see for yourself. Our Principessa is standing during a PT session using basic MEDEK skills. More on MEDEK later.
Not a great day today.
Josephine had a weight check today and it was not what I had hoped.
She did not lose weight, but she didn’t gain any either. In 3 months, Josephine weighs exactly the same…18 lbs, 11 oz. She did grow 1/2 an inch, up to 32 1/2 inches.
I am so bummed out with this news. I know I shouldn’t be and I know it will get better, but right now, not feelin’ so hot.
My mom told me not to focus on the negative and worry about the next step later, but I don’t want to. I don’t have to.
I want to feel what I feel now and I don’t need anyone to tell me not to feel that way. I know that sounds snotty and insensitive and that’s not how it’s meant to sound, but it does.
I can’t help how I am feeling now and I am not trying to stop it. I feel like I am letting Josephine down. I feel like I let myself down.
Working at Weight Watchers, I tell people it’s not the numbers on the scale that matter, it’s how you feel inside and how your clothes fit outside.
But not my little girl. She needs every ounce she can get.
Yes, she is doing amazing things in therapy and in life right now. She’s cruising (yep, you read right!), she following simple commands (give me, put the mail in the mailbox), she’s recognizing animals and saying them by name, she’s counting to 5 (or approximating the sounds).
But she’s not gaining weight.
I am scared about what the GI Doc will say…G-Tube. Night time feedings. G-Tube. G-Tube.
We are working so hard to avoid it and I hope it doesn’t go that direction. Guess we will find out when we see Dr. Sunaryo (GI) and Mitch (Nutritionist).
Until then, guess we will be heading to Cold Stone Creamery every night!
Might as well enjoy this journey any way we can, right?! Cookie Doughn’t You Want Some here I come!