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).
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.
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!
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!
Lauren (our amazing DI) and Daddy had a surpisingly easy time with Josephine and finger painting today.
Because of her hypersensitivity issues, Josephine typically gags at the sight of anything she dislikes or doesn’t know. It could be food, dolls, crayons or paint.
Taking a chance, Lauren broke out the finger paint and Josephine dove right in! No hesitation at all. But both Lauren and Daddy noticed Josephine drooling quite a bit and it seemed to get a bit worse as time went on.
Lauren found out from Kim (the OT goddess) that the drooling is a sensory defense and would soon be followed by gagging or vomiting. Fortunately for Lauren and Daddy, the gag came soon after the drooling.
But what is so impressive is that Josephine not only dove right in; she tolerated the paint for more than a couple of minutes.
Josephine had a great time visiting Santa at West Orange Town Hall. And I have to say the Mayor Rob Parisi and Recreation Director Bill Kehoe were very kind. They were more than happy to help carry Josephine in her stroller up the steps of Town Hall (no handicapped entrance in the front) – and even “snuck” us in to see Santa before all the other kids got in there!
Josephine watched the tree lighting ceremony, enjoyed a Christmas cookie and the fresh December air with Sheldon, Mom and Dad.
Josephine’s 1st time (of many, I am sure) at Disney World was truly magical and full of happiness.
The Senek Family joined The Randles/Holland/Stephens/Burns Families to celebrate my dad’s 70th birthday (Happy Birthday, Grampy!). One full week of rides, food, characters, sun, food, walking, food, fireworks, parades…Oh, did I mention the food??!
Reasonably, I imagined chaos and meltdowns while on vacation. I am proud to say no chaos ensued and only 1 meltdown, to the horror of another mom, on the monorail (get over it, Lady!).
There is so much to write about, but I will be concise (I know that’s rare for me) and focus on the highlights.
PLANE TRIP
Josephine could not have been a better flyer. A real pro. No crying, no meltdowns, no fidgeting or squirming. A surprise for all of us.
DISNEY
We chilled at the Animal Kingdom Lodge and even took a swim before heading out to dinner and then EPCOT.
Josephine did well in the water, but I was very aware of how long she should be in the pool, particularly since the pool was NOT heated. I saw the blue undertones beginning to surface, which was my cue to hang out and watch The Sheldons poolside.
After dinner at Kouzzina (scrumptious Greek cuisine) on The Boardwalk, it was off to EPCOT.
So, I had heard about this “GAC” card and how wonderful it was and went to Guest Relations to get one for Josephine.
Let me tell you this GUEST ASSISTANCE CARD is the BEST THING EVER!!!!!! This magical card is what made our trip what it was.
All I had to do was tell them why Josephine needed this card and it was issued. No doctor note needed, no blood work needed, no diagnosis needed. Just your honesty.
Because of this card, we only had to wait a maximum of 20 minutes for any ride, but the average wait time was 5 minutes. If the wait time was 110 minutes, we waited maybe 10 minutes. All access pass to any ride, either using the handicapped entrance or the Fast Pass entrance.
The Guest Assistance Card is a MUST for anyone with a disabled child and I made to sure to share the wealth with everyone I met. Why not help other families have a wonderful vacation too?!
The characters were a real surprise also – Josephine loved all of them. Well, all except Eeyore. And Josephine wasn’t freaked out by him. She just pulled away, which said, “Uh, nah. Maybe not.”
Josephine was able to ride many of the rides. The coolest part about some of the rides is she could go on them IN her stroller!
Two rides in particular that go above and beyond – Toy Story Mania and Buzz Lightyear’s Space Ranger Spin.
Both rides converted the existing car into a car “built” for Josephine. The car was disassembled and reassembled to accommodate her stroller. This was perfect because it allowed Josephine to be independent from us and enjoy the ride on her own. And, of course, it allowed Sheldon Daddy and I to enjoy ourselves, while enjoying Josephine’s independence. Even Sheldon 3 got a kick out of watching Josephine.
Check out this video of J-Bean on her FAVORITE ride of all, It’s a Small World (it’s dark in the beginning, but be patient…it get brighter around :10).
There were a few other rides like this one where J-Bean could ride independently without the need to convert the car. The cast member would “order” a wheelchair boat or car, which required us to wait about 5 minutes, but it was worth the wait.
Another ride that comes to mind is Living with the Land at The Land in Epcot’s Future World. Same idea as the It’s a Small World boat.
All the other rides that were appropriate for her were very accommodating by allowing us access through the handicapped entrance. Most of those rides allowed us to wheel the stroller all the way up to the loading of the ride. The rides I can recall are (in no particular order or location) Pirates of the Caribbean, Journey into Imagination, The Haunted Mansion, Spaceship Earth and Finding Nemo.
As for the performances, stationary attractions and 3D movies, again, we used the handicapped entrances. The shows that stands out the most for exceptional service were Finding Nemo: The Musical and Talk Time with Crush. Cast members went above and beyond to make Josephine feel comfortable and also seated us in the best spot to see the show.
Here’s a video of Josephine enjoying her front row seat at the street show, Disney Channel Rocks!, at Hollywood Studios…Man, I love this girl!
DINING
There were some glitches with our dining reservations and handicapped seating, particularly the Hoop De Doo Musical Revue.
We were very inconvenienced because our reserved tables were in the balcony and there was no elevator to get to that level. Keep in mind we made it clear when making the reservation that Josephine needed her stroller (code word: wheelchair) to eat. So, not only did we have to carry the stroller up a large flight of steps, our tables were high and our seats were bar stools. This made it very unpleasant for Josephine because she couldn’t be part of the group and couldn’t see the revue at all, unless someone held her. It was at this point that Josephine started to melt down and when I started to melt down. After all, I knew why she was upset and no one gets my baby girl angry!
Needless to say, the manager was very patient and understanding. She immediately offered us 10 passes to return, at no charge, to the revue, within the next 5 years. At $75 a ticket, that’s a decent compensation. Although not having to deal with the issue at would have been better!
FRIENDS ALONG THE WAY
On our last day, the whole family had many snacks and even some meals left on the our dining plan. As we did the on trip before, we agreed to “pay it forward” to other guests. I waited in line and when a guest was paying cash, I offered to pay with my dining plan and the guest got a free meal or snack.
I did that for a thankful, but not needy, travel agent and felt moderately satisfied.
But it wasn’t until I met Esmeralda and her parents that I felt complete.
I was waiting at the cash register and saw this beautiful family waiting to pay. I could see right away that their daughter had some diagnosis, but obviously couldn’t figure out which one (who can?). Immediately, I knew this was a great day. I offered to pay for all 3 of their meals. They were gracious and understandably surprised. I said it warmed my heart to know, as a parent of a special needs child, that I was able to help another family with a similar child. And I went skipping on my merry way…OK, so I walked casually back to our patio table and excitedly shared the news with The Sheldons.
We then realized we still had 14 snacks we had to use before we left for the airport in 45 minutes. I went back to find Esmeralda and her family!
I found the family and spoke briefly about our children: Esmeralda has a disorder called Cri Du Chat Syndrome or 5p Minus (www.fivepminus.org). Interestingly enough, I had never heard of this disorder and they had never heard of Tetrasomy 8p Mosaicism. How amazing it is to have found a family with the same struggles and successes when handling a child with a rare chromosome disorder! I was sorry we weren’t able to stay with them longer – it would have been nice to hang with them and learn more about each others lives (which reminds me, I need to send them a follow up email!).
PLANE TRIP to NEW JERSEY
The trip home was a bit rougher than the first leg (even MY ears were popping like crazy!). But that’s not what stuck in my mind…
Once again, fate struck us positively, as we were seated next to a woman and her mom, also sitting in the handicapped row.
It turns out the young woman, who was my age, had CP because of the doctor’s negligence at birth. Jennie was very pretty, with long red hair and a very energetic spirit. The entire plane trip was spent talking with both Jennie and her mom. We shared stories about the diagnoses, the therapies, the successes and the failures. One theme, however, kept creeping up: Never underestimate the power of strength, faith and love. Don’t worry about what the doctor’s prognosis. Don’t focus on the diagnosis. Focus on what matters most – our daughter. After all, if Jennie’s mom had listened to all the doctors in her life, Jennie would not be a funny, caring, giving and spirited woman with an 11-year old son and a full time job!
DISNEY in a NUTSHELL (I know, FINALLY!)
What can I say? It was wonderful to get away and spend a week with no schedules, no therapies, no appointments, no school, no Weight Watchers, no restrictions.
But what I will always remember is this: We are NOT the only family living with a rare diagnosis. We are NOT the only family proving everyone wrong about our little princess. We are NOT alone in this fight to give our daughter the best life she can have.
We are part of a small and wonderful world with wonderful kids celebrating the wonderful gift God has given us.
The gift to share Josephine with the rest of the world.
