Hi my name is Joey and I'm 8 years old............

Hi my name is Joseph Andrew Stafford, I like to be called Joey. I am 8 years old and I am going into the 3rd grade. I love my family. I love going to school and hanging out with my friends. I really like watching my cartoons. Mickey Mouse is my favorite. I like playing baseball and I like to play rough. I like birthday parties and listening to other kids play. I especially love when others pay attention to me. I also like to go swimming (ironic).

Why is it ironic that I like swimming, well........................

When I was 1 1/2 years old I got into our backyard and drowned in the pool. I can't remember how I got in the pool. I could have slipped, or jumped or I could have been reaching for something, but really who can remember when they were 1 1/2 years old anyways. Well obviously I survived the drowning or I wouldn't have this blog for my mom to write in. I spent 5 weeks in the hospital (that's what mom tells me, I can't remember). From drowning I acquired an anoxic brain injury, brain damage due to lack of oxygen. I can't really remember much of anything when I was in the hospital or much of anything before the age of 4 yrs. So the rest is what my mom has told me. When I was in the hospital they didn't know if I was going to live or die. The doctors didn't know what I would regain or not. As I have gotten older I have gained a lot more of me back. The doctors diagnosed me with Cerebral Palsy.

Let me tell you what I can NOT do first. I can not roll over, get to a sitting position by myself or sit criss cross by myself for more then a few minutes. I can not stand without full support,  I can not walk without full support. and I have to wear diapers. I have a hard time using my arms for anything and I can not talk much. I can not feed myself or wash myself.

What CAN I do.....................I can sit for a few minutes unsupported, I can stand with help, I can walk with help and I can vocalize. I HAVE some words that come out right, but most of my words that you hear come out wrong. In my head I am saying a lot and I'm saying it right, but my muscles don't form the words right when they come out.  When you ask if I want something, I answer you. I can't help it you don't understand. I UNDERSTAND everything you say to me. I even try to do what you ask me, but you never give me enough time to respond.  I can eat really good and love all kinds of food.

Here are some things that aggravate me and especially aggravate my mom:

• Look at ME and ask ME what I want, my mom will answer for me.
• Say Hi and Bye to ME. Remember I can hear and UNDERSTAND you.
• DON'T talk to me like I'm a baby(only Nana can).......I'm 8 yrs old, my birthday is June 28th, so next year Ill be 9 yrs old.
• DON'T assume that I don't want to play. 
• DON'T assume I don't want or like to go to the movies.........I love the movies.
• DON'T assume I don't understand when I didn't get invited to your birthday party. It hurts my feelings.
• DON'T skip over me in line. Just because I look disabled and can't communicate the same as you doesn't mean I don't UNDERSTAND.
• DON'T stare and walk away. If you are curious come talk to me and ask questions, my mom loves to talk. Sometimes I have to fuss to shut her up.

There are a lot of things I wish I could do that you do, but I can't. I would love to go down a water slide or ride a regular bike or play hide and seek or drive race cars, but I can't so I make due with what I can do. My mom is great with modifying things for me, like my bike, but know one asks me to go out bike riding. There are a lot of things I can do, but is hard because my mom has to modify things and it's hard on her and usually takes twice as long, so be patient. I do have an ipad and a really cool wheelchair. These are my favorite things. I love to eat Mac and Cheese and Ice Cream. My sister and brother play with me a lot and this makes me happiest. I could sit all day on my dads lap and watch football. My mom always know what I want to eat and when I am hungry. My mom knows how much I am capable of doing so I can't fake it around her. However I can play my dad and grandparents good, a little fussing and I have them wrapped around my finger. 

So parents, your kids will treat me the same as you do. If you ignore me or push me aside or assume I can't do something or stare, then your kids will to. No one will ever learn. 

So I have one favor to ask you.........Please treat me like a typical 8 year old, I like it better.

Side Note - Read 'Out of my mind" by Sharon Draper about a girl with CP, true story.

Also watch this news report about a girl with severe Autism, 

HERE WE GO AGAIN ON OUR OWN...............................

I'm already tired and I haven't done anything yet.

Yesterday Joey and I left on a 3.5 hour tour down to Pine Valley for 3 weeks of Intensive Suit therapy for Joey. The drive was easy with no traffic. Joey slept half the time, so that was good. Our challenges began when we checked into the motel. Joey began to fuss and fuss some more and fuss some more. He doesn't like to be out of his comfort zone (our living room). Of course going to bed was difficult, so I had to snuggle with Joey all night which doesn't allow me any sleep. Joey slept great.

Pine Valley is super super small. Three places to eat, a little market/liquor store, fire station, police station, little little library, gas station, park and motel. That's IT! NOTHING ELSE, NO KIDDING, NOTHING! I think I'm in culture shock. I will be pulling my hair out by the end of this week. Unfortunately we will have to eat every single meal out. The coffee shop employees will know us well.

I am very nervous about how Joey will do. It has been a few years since we have done this therapy. Joey's body has changed so much and not necessarily for the better. He is more cognitively aware which is great, but means he will fight us more.

Please send positive thoughts our way for a great therapy session and for boredom not to set in.

THE MAGIC BULLET

The Magic Bullet, the best invention EVER! Many years ago one of my BESTEST friends gave me one. You can use the Magic Bullet for many things, such as mixing drinks, making salsa's, making baby food, grinding food, etc. I used the Magic Bullet for Joey's food for 5 years. I used it religiously. At first I had to grind and mix his food so it could be administered through his feeding tube, then had to make it into mashed potato consistency, then got to the point where I only had to use it for his protein (red meat, chicken, etc). It traveled with Joey and I all over the world. When we finally blew the motor on it, I suffered without it for about 3 days before a new one was delivered to my door (again from my BESTEST friend). If someone didn't wash it right or put it away wrong I would stress out. That is how important the Magic Bullet WAS in my life.

Did you read that? I said WAS.

Living with Joey, watching him grow, is like watching grass grow. You look at your lawn everyday and it is hard to tell how much it has grown, until someone points out the fact that it is time to cut your lawn.  Well this is what happened with the Magic Bullet. I didn't realize I haven't used the Magic Bullet since before January until my babysitter asked me about it.

What does this mean? It means that Joey is growing up, he is progressing, he is improving. He does not need me to grind up his meat anymore. Yes, he can eat a chicken nugget and he can take a bite of a hamburger and he can NOW chew red meat long enough to swallow it without choking. I no longer need to feed him like a baby.

Many might think SO WHAT! Well 6 years ago when his feeding tube was put in and Dr's said it would never come out and he would always be tube fed and will never be able to drink and will not do much of anything, that's WHAT! His feeding tube is OUT and he can eat whatever I can eat.

People will always ask how Joey is doing and it's hard for me to see that he is improving. Remember, living with Joey is like watching grass grow. Then I get little reminders that he is always changing. He has NEVER really hit a plateau in his healing, just when the obvious is not showing, the less obvious is healing.

So I am not giving up the Magic Bullet completely. I am now just going to use it for my Margarita's.

CHEERS!

PHEWWWWW..............

Phewwwwwww.......................things are finally starting to get back to normal. 

January 25th Joey had tendon release surgery. The surgery went good. He was put in long leg casts with a bar between his legs keeping his legs spread. He was miserable. He was in the hospital for a total of 7 days between the surgery and the allergic reaction he got from his medication. For the first 2.5 weeks after surgery he was miserable. It took us that long to control his pain and even then I don't think we did a very good job of controlling it. When his long leg casts came off at 2.5 weeks, short leg casts were then put on for 4 weeks. He managed to tolerate this much much better. He started to get his smile back. We ran into a couple complications after surgery, nothing major, but things we had to constantly keep an I on. His nerve in his left leg was going haywire, it has now gone back to normal. Also one of his incisions opened up. It is still open, but no infection and is getting better.

So that brings us to present time. Today Joey's casts finally came off. It will take approximately 6 months for him to get back to normal. We will know within the year end if the surgery worked the way we intended it too. He will need a lot of therapy to get him where he needs to be. When school is over he will start an intensive session of PT in San Diego for 3 weeks.

Joey just started baseball again for the spring. He played 2 games already and wasn't a happy camper. So we will see what happens. I also have been having some issues with his teacher in school. So I called and spoke with the principal and she had him moved to a new classroom in less then a week. I met the new teacher today and I love her. So all is good there.

The family is now getting ready to go on a vacation for a week. Joey will stay home with a babysitter, he does not like leaving the house, which brings us to selling our RV. It's hard to take Joey camping anymore so the RV is going bye bye. Maybe in 5/6 more years we will get another one when the kids are grown up. We sure did have great times in that RV. It will be missed.

Nice to get back to normal. PHEW!

Well 2013 started off with a BANG!

On January 25th Joey went in for tendon release surgery on several areas of is legs. The surgery went great. It took a little longer then originally stated (2hrs longer), but everything was great. The hard part was seeing this super happy boy laughing and smiling and talking up a storm before surgery to a little boy who is in pain and fussy after the surgery. Joey was casted from groin to toe.  He will be casted for 3 weeks in long casts then 3 more weeks in half casts. He has to lay flat and over a 3 week period slowly get him back to a sitting up position. We were then sent home on Sunday morning.

On our way home Sunday.

Chilling at home before the return to the hospital

Well the excitment then begins............we noticed a rash on Joey's body. We are aware that he has an allergy to meds, so we stop his meds. We were a bit to late. The rash got worse very very fast and the pain kicked in and we ended up in the emergency room and them addmitted back into the hospital. The rash progressively got worse in the hospital. They have him on a topical steriod cream and an oral antihistamine. So now we just wait it out. Still in the hospital, hopefully go home before Saturday.

First day of rash.

During Joey's adventure, back at home his great grandma was dying of cancer. Back in Novemeber she was diagnosed with cancer. Dr. gave her 6 months to a year, well she must have been in a hurry to see her hubby. Saturday morning she passed away. She was an amazing woman. Stronger then any other 90 year old I knew. Her memorial is this Saturday.

Joey and Buba

So between Joey and Grandma, Jeremy and I are working on little sleep. My nights have been spent in the hospital with Joey. We are both emotionally and physically drained. We are hoping that in the future we look back at this and laugh, ok probably NOT! However we know like everything else we encounter, we will conquer and over come.

We got a quick smile.

That is were we stand now. I will update once again in another week or so.

BYE BYE 2012.......HELLO 2013

And another year comes to and end.......we all became a year older. Joey turned 7 in June, Jessica is 15 and Jack is 12.

JOEY
Went from 1st grade to 2nd this year. He is working alot with switches in school and walks in his gait trainer all over the place. He loves the bus rides to and from school the best. He continues to improve in physical therapy. He also goes to Hippotherapy (horse back riding) and gets behavioral therapy. We took a few trips to Arizona for ABM therapy and started and stopped speech therapy.

Joey has decided that he DOES NOT like camping anymore. He rather stay home. So the dogs babysit while we go camping. He did however go to camp for the first time this year. He went all day and got to go on some great field trips. He also went surfing for the first time ever. He had a great time and ironically loves the water.

Joey has grown tremendously over this last year. He is approx. 50lbs now and 46in. He got new braces for his legs and new sporty glasses. We even had to expand his wheelchair. He also got a new gait trainer at school. He has been outgrowing his clothes before he has a chance to wear them all.

Like always, Joey is the happiest kid alive.

JACK
Had a great year with school. He started middle school this year and is in the 7th grade. He is doing very well in school. Jack had his best year of football yet. His team went to Las Vegas for the National Championships and won for the third year in a row. Talk about growing. Jack grew about 6 inches and is now just taller then me. He wears the same size shoe as his daddy now and he is only 12.

This summer Jack went to sleepaway camp for a week while the rest of us went to Lake Powel on a house boat (Joey stayed with babysitter). He had another incredible time. He also has been studying really hard for his upcoming Bar Mitzvah.

He is turning into such a young man, however I don't know that I'll survive the teenage years.

JESSICA
She started the 10th grade. Ended 9th grade with a 3.8gpa. She has a lot of AP, CP and Honors classes this year. In spring she played softball for her high school team, but injured her shoulder so didn't get to play more then a few games. After our summer lake trip she had surgery to repair her shoulder, no more softball for her.

She is growing up fast and started her first job at our Martial arts studio. She is a hard worker and doing great. Very typical teenage girl and loves to go shopping all the time and hangs out with her friends every chance she can get.

JEREMY and I
Just booking right along. During the summer we hosted a couple teenage girls from China and had a great time showing them around and learning about each other. We also took the kids to San Francisco to see the kids first NFL game. Had a great time. Trying to soak it all in before it passes us by to fast. We celebrated our 16 year anniversary and went on a few little trips. Like usual, we are working hard and enjoying life.

2013
As 2013 comes around, we already have a lot on our schedule.
On January 16, it will be 6 years post accident. Jack will ask many times what our life would be like if Joey didn't have his accident......I don't know. I can't even imagine it anymore. Our lives are very happy, just a bit more difficult to handle many days and takes more time to figure stuff out and yes there is a lot we can not do because of the limitations with Joey, BUT we do our best and have smiles on our faces. Everyone is HAPPY!
At the end of January, Joey will have surgery on his legs to realease his tendons. It will be rough going for a couple months. Joey will be casted from hip to toe for 6 weeks and will not be able to sit up in his wheelchair for awhile. He will regress slightly in his physical abilities, but with a lot of hard work he should bounce back fairly quickly.
Just as Joey's cast comes off, the family will be going on a cruise to relax from it all. Joey again will stay home with the babysitter, he prefers this.
Joey will be signed up for baseball and Jack will begin track and field again. Jack will also do some football conditioning to get him ready for the football season.
At the end of April Jack will have his Bar Mitzvah.........after 8 years of studying, he will be finished with religious school. We will have a big party to celebrate.
I am hoping that in June I will be able to take Joey for some intensive physical therapy to help recover from his surgery. Also head to Arizona for some more therapy.
Then in October Jessica turns 16 yrs old and will get her drivers licsense. OH MAN!

My hopes for 2013 is that Joey has a very sucessful surgery and recovers quickly. That he stays very healthy and happy. I hope the other kids continue to do well in school and have fun in their sports. I hope our business continues to grow and that Jeremy and I can not stress so much about life. I pray all my friends stay healthy and happy this year.