Joey is FAMOUS!

Joey has been very popular the last couple weeks. A couple weeks ago Joey was in our local paper for his challengers baseball league. Then yesterday Joey, his therapist Michelle and I were interviewed regarding drowning. Here are both articles. I want to say I got my 15 minutes of fame, but I think it is actually only maybe 1 minute. Joey just eats up the camera.



TEAM SPIRIT—Six-year-old Joey Stafford of Simi Valley laughs as he crosses home base with help from his partner during a game. Photos by IRIS SMOOTAcorn Newspapers

I know it has been a few months since I have updated about Joey, so I am going to try and catch up now.


Joey has been doing fabulous in school. He has many friends and loves riding the school bus.  During his most recent IEP meeting, I have found out that he has met most of his goals, Whoo HOO! Next year he will begin 2nd grade,  he will have a new teacher, but same school. He just got a larger gait trainer and is getting another chair so he can sit with the kids at the desks in school. He has out grown his other ones.


Then most recently, Joey has lost his upper left tooth. That makes 3 teeth now. His bottom left permanent tooth is already growing in. My daughter says he looks like Shmolie from the movie "The Boy with the Stripped Pajamas". Guess I need to see the movie now.


Back in March Joey did another round of Botox and serial casting on his legs. Well the concern this time is that it didn't really work. He got new braces that don't have any, whatsoever, bend/give. He also got special night time braces to wear. So he is in his braces approximately 23 hrs a day. This seems to be working well. We are going to do another round of botox and casting in September with a higher dosage of botox and cross our fingers that it works, otherwise we discuss surgery. Yes, surgery the last resort. We will have the surgery discussion in January. So again, cross your fingers everyone that the braces and botox work.


Alright, that brings us to present time. We are having a change in Joey's therapy. His PT is moving on to bigger things, not better, just bigger. ha ha ha So with that, Joey gets put on a waiting list for a new PT. Who knows how long this will take. This also means no more Hippotherapy (horse riding), his PT was the one that did that with him and they do not have another PT that is qualified to do it with him. Good news is though that I have a friend that has 3 horses and she said we can put Joey on her Blue whenever we want. Also Joey begins speech therapy. We have been on the waiting list for speech therapy for 1 yr. He begins in June. We also head back to Arizona in June for more Movement Lessons with Michelle Turner. This therapy works amazingly with Joey. I just wish we could go more often. Then in August we go to San Diego area for 3 weeks for some intensive therapy session. He gets to work with one of his original occupational therapist, the best around. He will also attend summer school for 4 weeks. Yes, he is very busy.


And on to some every exciting news. I have signed Joey up for summer camp. The camp is for special needs kids only. It is run through a Jewish Foundation, so you have to be Jewish, yes we are Jewish. The camp cost us nothing. The kids go on a few field trips. Joey will get to go on a special helicopter ride. He also gets to go to Disneyland. Actually our whole family gets to go to Disneyland. The camp pays for a room for us and everything at Disneyland. The best part is this trip falls on Joey's Birthday. Yeahhhhhhh for Joey.

Heading out on a camping trip over Mother's Day weekend

Well that pretty much sums up Joey over the last couple months and his future plans.

A Poem

My daughter had to write a poem for english class about a child who's childhood was interrupted. So of course she wrote about Joey. I got teary eyed listening to it. Here it is:


Joseph Andrew

Joseph Andrew so cute and sweet
He is definitely someone you’d be lucky to meet
So smart, that even at one year old he could bulid a perfect fort
Never knowing that one day his innocent childhood would be cut short

Who knew that one curious kid and one wide open gate
Would ever determine the little boys fate
It was a families worst nightmare came to life
This feeling of sadness was worse than being stabbed with a knife

The pool in which he did drown
Brings nothing but a hidden frown
But thanks to god and the miracles he’s made
My little boy’s life did not fade

His smiles and laughs bring sudden joy
He will always and forever be my little boy
I love this kid with all my heart
And I know that no matter what happens we will never part

He may not do what most normal kids can
But to me he will always be better than them
The strength and endurance he had to push through
Has made me want to be a better person and sister for Joseph Andrew

NORMAL!

Everyday starts with getting out of bed, waking all three kids and begin getting ready for school. It takes Jessica over a hour to get ready, Jack takes about 30 min. and Joey takes about 45 minutes, this includes eating breakfast. Pretty NORMAL right! Off to school they all go and off to work I go. At about 1:30 I begin my rounds of school pick up, first Jessica, then Jack and then Joey. From school they all go to there extracurricular activities, Jessica softball, Jack track and depending on the day Joey either has horseback riding, baseball, or therapy. Pretty NORMAL right! OK maybe not to 80% of society, that going to therapy is NORMAL, but in my world, it is very NORMAL!


In my world, taking my child to get botox and casting (BTW he has casting now and is doing great with it) every 9 months is NORMAL! Going to therapy 5 days a week is NORMAL! Meeting with various people for evaluations all year long is NORMAL! Going to a Neurologist and Orthopedic and Optometrist and Pediatrician a couple times a year is NORMAL! Having a stander and walker, special bath chairs and feeding chairs, sensory toys, my special blender and chopper for food is all NORMAL! Having diapers and wipes for the rest of my life in my house and having a handicap accessible van is NORMAL!

Joey being NORMAL!

MY LIFE IS NORMAL!


UH! you ask! How is that all NORMAL?


Well for 20% of Americans, this is a NORMAL life. 

Jack being JACK! NORMAL!

It gets really frustrating hearing other people always wish their lives to be NORMAL! NORMAL is what YOU make your life, not what defines your life. It might not be the same NORMAL as your neighbors or friends or family around you or even 80% of people in your life, but it is your NORMAL, embrace it. Learn to live your life your NORMAL, because your NORMAL will never be the same as anyone else's NORMAL! 


For all my friends and family that don't think their lives are NORMAL, stop for a second, stop for a minute, STOP! Your life is NORMAL! Your life is what you make it. Make yourself happy and everyone around you will become happy. Do for yourself, so that your family can live a NORMAL life.

Jessica, love her!

My family is NORMAL! I love our NORMAL! I don't even know that I want to deal with someone elses NORMAL. I have a very happy NORMAL!

My AMAZING Son!

4 DAYS AGO!

4 DAYS AGO! I can't believe that 4 days ago life just went on like normal. The last 4 years I would have gotten all emotional and would have been slightly depressed, but not this year, not on the 5th year. January 16, 2012 marked the 5th year since Joey's accident. Even though the day went by like any other day and I didn't realize what the day meant on that day in 2012 doesn't mean I have forgotten. It seems that I refer so much of my life to 'before the accident' or 'after the accident'. However, I am glad that life has become normal, so normal that the good anniversary dates precedes over the bad anniversary dates.

So much has changed over the last 5 years, SO much that I am not going to go through everything. I'll just talk about the last several months.

SCHOOL

Joey is in the 1st grade. He loves school. He loves all the kids, but he loves the bus ride to school the most. He is meeting all his IEP goals and is really learning a lot. He has a great teacher and great aides who really cares about him.

HOLIDAYS

We had a very busy holiday season. We do Hanukkah with 1 side of our family and Christmas with the other side. My SIL from Idaho and my 3 nephews and niece came to stay with us. Joey had a great time with all the noise in the house. However about 4 days into vacation Joey got sick. This is the first time in 2 years he got sick. It lasted about 1 1/2 weeks. Poor guy was so miserable. His body gets so tight and its hard for him to clear his throat. Of course he was better by the time school started.

DOCTORS APPT.

At the beginning of each year we do our rounds of dr. appt's. We started with the regular pediatrician appt. He grew a couple inches and has gained 5 lbs. He is a growing boy. He is in the 25 percentile for his age, which is really good for a child with CP.
Then we saw the Neurologist. The Neurologist gave him a clean bill of health and sent us on our way. We don't need to see him until next year.
The most dreaded appt.'s of all is his Orthopedic appt.  This is the appt. were we check his hips for dislocation and his spine for  curvature. Xrays show that all is perfect. He does have to have botox again. We need to do botox every 6-8 months in his calf's, hamstrings and abductors. Then we do serial casting on his legs for 4 weeks. So the dreaded appt. turned out to be not so bad.

THERAPY

Therapy for Joey continues. He gets private PT 1x a week and Hippo therapy 1x a week, then in school he gets 1 hr of PT and OT a week and gets about 30 minutes of vision and speech in school. He also gets CME (Cuevas Medek Exercises) therapy for an hour a week. I am also trying to get Joey to Arizona for ABM therapy every 4-6 months. At home he gets Behavioral therapy 3x a week for 3 hours. However, his behavioral therapy is more like a combination of all the therapy listed above. He is continuously progressing. He can sit by himself for about an average of 12 minutes. He is learning to reach and touch his ipad for communication and he is learning to express his wants through speech. His cognitive ability is increasingly improving. He is also walking everywhere in his gait trainer at school. He is working really hard.

Well that's about it in a nutshell.

Hoping everyone has a HEALTHY, HAPPY, and WONDERFUL 2012