tag:blogger.com,1999:blog-55068725611878892922024-03-12T20:41:06.255-07:00Fighting JoeyMy Life's JourneyAnonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.comBlogger193125tag:blogger.com,1999:blog-5506872561187889292.post-3035716167649915742013-07-27T16:53:00.001-07:002013-07-27T16:53:59.656-07:00Hi my name is Joey and I'm 8 years old............<br />
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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).<br />
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Why is it ironic that I like swimming, well........................<br />
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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.<br />
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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.<br />
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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.<br />
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Here are some things that aggravate me and especially aggravate my mom:<br />
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<li>Look at ME and ask ME what I want, my mom will answer for me.</li>
<li>Say Hi and Bye to ME. Remember I can hear and UNDERSTAND you.</li>
<li>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.</li>
<li>DON'T assume that I don't want to play. </li>
<li>DON'T assume I don't want or like to go to the movies.........I love the movies.</li>
<li>DON'T assume I don't understand when I didn't get invited to your birthday party. It hurts my feelings.</li>
<li>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.</li>
<li>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.</li>
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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. </div>
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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. </div>
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So I have one favor to ask you.........Please treat me like a typical 8 year old, I like it better.</div>
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Side Note - Read 'Out of my mind" by Sharon Draper about a girl with CP, true story.<br />
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Also watch this news report about a girl with severe Autism, <iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/xMBzJleeOno" width="560"></iframe></div>
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<br />Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-5532958413085477222013-07-08T12:00:00.000-07:002013-07-08T12:00:10.213-07:00HERE WE GO AGAIN ON OUR OWN...............................<br />
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I'm already tired and I haven't done anything yet.<br />
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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.<br />
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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.<br />
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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.<br />
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Please send positive thoughts our way for a great therapy session and for boredom not to set in.Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1tag:blogger.com,1999:blog-5506872561187889292.post-63689857040186634912013-05-21T19:58:00.000-07:002013-05-21T19:58:02.977-07:00<b><br /></b>
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<b>THE MAGIC BULLET</b></div>
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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.<br />
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Did you read that? I said WAS.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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So I am not giving up the Magic Bullet completely. I am now just going to use it for my Margarita's.<br />
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<b>CHEERS!</b>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1tag:blogger.com,1999:blog-5506872561187889292.post-76474748300925546922013-03-12T21:25:00.003-07:002013-03-12T21:25:53.403-07:00PHEWWWWW..............<div>
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Phewwwwwww.......................things are finally starting to get back to normal. <div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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Nice to get back to normal. PHEW!</div>
Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-5974748554727373372013-01-31T08:30:00.001-08:002013-01-31T08:30:24.647-08:00<br />
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Well 2013 started off with a BANG!<br />
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">On our way home Sunday.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Chilling at home before the return to the hospital</td></tr>
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">First day of rash.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://fbcdn-profile-a.akamaihd.net/hprofile-ak-ash4/c38.38.475.475/s160x160/295343_10200337924392209_285382230_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Julie Martin Stafford" border="0" class="profilePic img" id="u_jsonp_2_5" src="https://fbcdn-profile-a.akamaihd.net/hprofile-ak-ash4/c38.38.475.475/s160x160/295343_10200337924392209_285382230_n.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Joey and Buba</td></tr>
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">We got a quick smile.<br /></td></tr>
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That is were we stand now. I will update once again in another week or so.Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-7829382287762971432013-01-01T13:06:00.004-08:002013-01-01T13:06:44.564-08:00BYE BYE 2012.......HELLO 2013<br />
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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.<br />
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<span style="font-size: x-large;"><b><i>JOEY</i></b></span><br />
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.<br />
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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.<br />
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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.<br />
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Like always, Joey is the happiest kid alive.<br />
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<b><i><span style="font-size: x-large;">JACK</span></i></b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rw-bLGSRxYpP4n2B0GK4jAt4k_JWyNPQoFO89sW-iBiASo25fx1xKc5vLCHFATZ6Tv6LO3tl5gABhTsxYgshT8qj_AtqJYq0_pC3srBFRsQdom5i8sIHTcObDLyGXDExWuwXBv8Vfh8/s1600/IMG_2644.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8rw-bLGSRxYpP4n2B0GK4jAt4k_JWyNPQoFO89sW-iBiASo25fx1xKc5vLCHFATZ6Tv6LO3tl5gABhTsxYgshT8qj_AtqJYq0_pC3srBFRsQdom5i8sIHTcObDLyGXDExWuwXBv8Vfh8/s320/IMG_2644.jpg" style="cursor: move;" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiinyIWHzja5S8NHKbsMmC4VhCfArrt6GoyFnQX_e5Eo32Ni2NDR3GE0wgeP-XBT-AFQDtvORqvSZmysvzMMdiuETAYMTDNvLnP64TVpD02cNallXG5Zm3UA0GE_MXdIdWR2PadTKydjXc/s1600/SAM_1133.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiinyIWHzja5S8NHKbsMmC4VhCfArrt6GoyFnQX_e5Eo32Ni2NDR3GE0wgeP-XBT-AFQDtvORqvSZmysvzMMdiuETAYMTDNvLnP64TVpD02cNallXG5Zm3UA0GE_MXdIdWR2PadTKydjXc/s320/SAM_1133.jpg" width="240" /></a>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.<br />
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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.<br />
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He is turning into such a young man, however I don't know that I'll survive the teenage years.<br />
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<span style="font-size: x-large;"><b><i>JESSICA</i></b></span><br />
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.<br />
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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.<br />
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<span style="font-size: x-large;"><b><i>JEREMY and I</i></b></span><br />
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.<br />
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<span style="font-size: large;"><b><i>2013</i></b></span><br />
As 2013 comes around, we already have a lot on our schedule.<br />
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!<br />
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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
Then in October Jessica turns 16 yrs old and will get her drivers licsense. OH MAN!<br />
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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.<br />
<br />Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1tag:blogger.com,1999:blog-5506872561187889292.post-90236699902563281532012-06-16T08:50:00.000-07:002012-06-16T08:51:05.829-07:00Joey is FAMOUS!<br />
<br />
<br />
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.<br />
<br />
<img alt="
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 " class="image image-preview " height="250" src="http://www.simivalleyacorn.com/sites/www.simivalleyacorn.com/files/images/2012-06-01/30p3.preview.jpg" title="
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 " width="250" /><br />
<br />
<span class="Apple-style-span" style="color: #222222; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: 12px; font-weight: bold; line-height: 18px;">TEAM SPIRIT—Six-year-old Joey Stafford of Simi Valley laughs as he crosses home base with help from his partner during a game.</span><span class="Apple-style-span" style="color: #222222; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: 12px; font-weight: bold; line-height: 18px;"> </span><span class="Apple-style-span" style="color: #222222; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: 12px; font-weight: bold; line-height: 18px;"><span class="image-caption" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 12px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Photos by IRIS SMOOTAcorn Newspapers</span></span><br />
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<script src="http://KPHO.images.worldnow.com/interface/js/WNVideo.js?rnd=139377;hostDomain=www.kpho.com;playerWidth=630;playerHeight=355;isShowIcon=true;clipId=7405909;flvUri=;partnerclipid=;adTag=Video%2520Player;advertisingZone=;enableAds=true;landingPage=;islandingPageoverride=false;playerType=STANDARD_EMBEDDEDscript;controlsType=overlay" type="text/javascript">
</script>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1tag:blogger.com,1999:blog-5506872561187889292.post-1565613255735002032012-05-23T19:19:00.002-07:002012-05-23T19:19:41.770-07:00<br />
<br />
<b><i>I know it has been a few months since I have updated about Joey, so I am going to try and catch up now.</i></b><br />
<b><i><br /></i></b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi76GhdXK9qKr9DvC5JM5XhMhoUTzfI7H6SUEhJQrfB_GZRO7Yp_LwZNlWhcyU2f7Ne-L9LvJ-KhQhOYFn1bPLXdBJsfZDyWNGqEmW5LBJsy7Iie0BbwjZKIuUvNBHUZiNVgctQgAOOHw8/s1600/IMG_1929.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi76GhdXK9qKr9DvC5JM5XhMhoUTzfI7H6SUEhJQrfB_GZRO7Yp_LwZNlWhcyU2f7Ne-L9LvJ-KhQhOYFn1bPLXdBJsfZDyWNGqEmW5LBJsy7Iie0BbwjZKIuUvNBHUZiNVgctQgAOOHw8/s200/IMG_1929.jpg" width="149" /></a><b><i>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.</i></b><br />
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<b><i>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.</i></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy3MBdkLkQg3k62aYA3ChoK6JzSEV4t4hQfWTNy5ZGnuEIQGUHWUGf2T5NxMysCLScJScPqLgi6kKkfaGpgEnEg4DYECGvsO9v0xJVYjfnKbT-6mDqlt39BKXInzgUjeJ7T3gWsqvEcXQ/s1600/IMG_1908.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy3MBdkLkQg3k62aYA3ChoK6JzSEV4t4hQfWTNy5ZGnuEIQGUHWUGf2T5NxMysCLScJScPqLgi6kKkfaGpgEnEg4DYECGvsO9v0xJVYjfnKbT-6mDqlt39BKXInzgUjeJ7T3gWsqvEcXQ/s200/IMG_1908.JPG" width="200" /></a><b><i>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.</i></b><br />
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<b><i>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.</i></b><br />
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<b><i>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.</i></b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDJpntr_OmQiqB5Td1E1A3BR-H9MV6r0b_dejB8cAOvkl4B4rl9nadrHlX20WqnW8exBgnd6FkGvoDug4BTWHjMvPSjY8IWl_M1L8LQoeHDxY9fvWYeyTCGjmZLZNm0OhruqkIqdJtuGM/s1600/IMG_1917.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDJpntr_OmQiqB5Td1E1A3BR-H9MV6r0b_dejB8cAOvkl4B4rl9nadrHlX20WqnW8exBgnd6FkGvoDug4BTWHjMvPSjY8IWl_M1L8LQoeHDxY9fvWYeyTCGjmZLZNm0OhruqkIqdJtuGM/s640/IMG_1917.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span class="Apple-style-span" style="font-size: small;">Heading out on a camping trip over Mother's Day weekend</span></b></td></tr>
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<b><i>Well that pretty much sums up Joey over the last couple months and his future plans.</i></b>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-37087294914681252082012-05-03T20:51:00.001-07:002012-05-03T20:51:29.897-07:00A Poem<br />
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:<br />
<br />
<br />
Joseph Andrew<br />
<br />
Joseph Andrew so cute and sweet<br />
He is definitely someone you’d be lucky to meet<br />
So smart, that even at one year old he could bulid a perfect fort<br />
Never knowing that one day his innocent childhood would be cut short<br />
<br />
Who knew that one curious kid and one wide open gate<br />
Would ever determine the little boys fate<br />
It was a families worst nightmare came to life<br />
This feeling of sadness was worse than being stabbed with a knife<br />
<br />
The pool in which he did drown<br />
Brings nothing but a hidden frown<br />
But thanks to god and the miracles he’s made<br />
My little boy’s life did not fade<br />
<br />
His smiles and laughs bring sudden joy<br />
He will always and forever be my little boy<br />
I love this kid with all my heart<br />
And I know that no matter what happens we will never part<br />
<br />
He may not do what most normal kids can<br />
But to me he will always be better than them<br />
The strength and endurance he had to push through<br />
Has made me want to be a better person and sister for Joseph Andrew<br />Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-6585156064132155092012-04-09T07:46:00.000-07:002012-04-09T07:46:06.951-07:00NORMAL!<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">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!</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">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!</span><br />
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</div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-size: x-small;">Joey being NORMAL!</span></div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">MY LIFE IS NORMAL!</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">UH! you ask! How is that all NORMAL?</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Well for 20% of Americans, this is a NORMAL life. </span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinupfZm1BaOJGk56KpRv7hlIVUg5zFroSQ4aZsk3qfP6fz39zEFfjFildALtleVtRVg29XK5_KDtZxce76T9Si-pxaa17Wzoleyq6KsfK4xf3X_kNLXHYEYeBjuYCuSp6HyQIPX0TsC64/s1600/IMG_1729.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinupfZm1BaOJGk56KpRv7hlIVUg5zFroSQ4aZsk3qfP6fz39zEFfjFildALtleVtRVg29XK5_KDtZxce76T9Si-pxaa17Wzoleyq6KsfK4xf3X_kNLXHYEYeBjuYCuSp6HyQIPX0TsC64/s320/IMG_1729.jpg" width="239" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-size: x-small;">Jack being JACK! NORMAL!</span></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">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! </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">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.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-size: x-small;">Jessica, love her!</span></div><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">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!</span>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1tag:blogger.com,1999:blog-5506872561187889292.post-69087076805624210512012-02-23T13:17:00.000-08:002012-02-23T13:17:13.297-08:00My AMAZING Son!<div class="separator" style="clear: both; text-align: center;"><object width="320" height="266" class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlWN0TIPlUC6ZVFfybWJXeSINdVegTXZT6pHGA6_630NgB8IgtWNpmoDqKeHJibjVrDmeg8IJ5wCFNi2BD3Shtd4MbrjEthQjLKH7Us3jMtm-dZ7Tg5RDWTL_C2kcHTDmYXBs72adQgdg/s0/7B131D78-177C-4C17-B69C-B4C8B9A4E085.MOV"><param name="movie" value="http://video.google.com/googleplayer.swf?videoUrl=http://v2.nonxt1.googlevideo.com/videoplayback?id%3De219a91d44922c2e%26itag%3D5%26source%3Dpicasa%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1330049872%26sparams%3Did,itag,source,ip,ipbits,expire%26signature%3D52C3D641D0356A8A9F0C7F63E18AEF361714D8CE.A708518020CE53A162F1357F3A0183FD28517D7D%26key%3Dlh1" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://video.google.com/googleplayer.swf?videoUrl=http://v2.nonxt1.googlevideo.com/videoplayback?id%3De219a91d44922c2e%26itag%3D5%26source%3Dpicasa%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1330049872%26sparams%3Did,itag,source,ip,ipbits,expire%26signature%3D52C3D641D0356A8A9F0C7F63E18AEF361714D8CE.A708518020CE53A162F1357F3A0183FD28517D7D%26key%3Dlh1" type="application/x-shockwave-flash"></embed></object></div><div class="separator" style="clear: both; text-align: center;"><object width="320" height="266" class="BLOGGER-picasa-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjztRCuRsAfTxDPToptAN9w477yc27CvUS1ex-DB0xiT1G9w3g0OvZmngKsMo7iJkv0eFw8x1Wz5kmxJx6lWLQQk-BHHwqSga2HoQMYvi8FxB1EdB6yL7VNVx8gXXIh40pz-quw2DEYjAk/s1600/IMG_1657.MOV"><param name="movie" value="http://video.google.com/googleplayer.swf?videoUrl=http%3A%2F%2Fv10.nonxt6.googlevideo.com%2Fvideoplayback%3Fid%3D5cf3a0df38932536%26itag%3D18%26source%3Dpicasa%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1330050043%26sparams%3Did%2Citag%2Csource%2Cip%2Cipbits%2Cexpire%26signature%3DDB31A5653A7BAE576399C6BA7029950A1188D687.D8DDF7B60FCE7C83AC056AD7C25090B4E3AB6788%26key%3Dlh1" /><param name="bgcolor" value="#FFFFFF" /><embed width="320" height="266" src="http://video.google.com/googleplayer.swf?videoUrl=http%3A%2F%2Fv10.nonxt6.googlevideo.com%2Fvideoplayback%3Fid%3D5cf3a0df38932536%26itag%3D18%26source%3Dpicasa%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1330050043%26sparams%3Did%2Citag%2Csource%2Cip%2Cipbits%2Cexpire%26signature%3DDB31A5653A7BAE576399C6BA7029950A1188D687.D8DDF7B60FCE7C83AC056AD7C25090B4E3AB6788%26key%3Dlh1" type="application/x-shockwave-flash"></embed></object></div><br />
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</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-90373450253697612192012-01-20T14:55:00.000-08:002012-01-20T14:55:53.781-08:004 DAYS AGO!<b><i>4 DAYS AGO!</i></b> 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.<br />
<br />
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.<br />
<br />
<b>SCHOOL</b><br />
<br />
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.<br />
<br />
<b>HOLIDAYS</b><br />
<br />
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.<br />
<br />
<b>DOCTORS APPT.</b><br />
<br />
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.<br />
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.<br />
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.<br />
<br />
<b>THERAPY</b><br />
<br />
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.<br />
<br />
Well that's about it in a nutshell.<br />
<br />
Hoping everyone has a HEALTHY, HAPPY, and WONDERFUL 2012Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-78537066116070815462011-12-17T08:16:00.001-08:002011-12-17T08:34:32.623-08:00Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about<span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; ">I stole this from another parent with disabled children.</p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><br /></p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; "><h2 class="uiHeaderTitle" style="font-size: 16px; color: rgb(28, 42, 71); margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; ">Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about</h2></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><br /></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; ">By Roy L. Ellis (with a few modifications)</p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><b>ADA</b> (Americans with Disabilities Act): This is what those morons do who illegally park in handicap parking spaces.</p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>AFOs </b>(ankle-foot orthotics): Lesser known martial arts weapon designed to inflict maximum body damage on the parent or caregiver of a disabled child when they're spasming and kicking the #$%^ out of you.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>CP</b>: Some say this stands for Cerebral Palsy. It's pronounced See-Pee on account of that's what the parent does for the rest of their life, well that and the chunky brown stuff too.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>CVI</b> (cortical visual impairment): Loss of vision caused when the eyes work OK but the brain doesn't. Most commonly seen in parents of children with brain injuries when the parent leans over to kiss a child in a wheelchair thereby triggering the child's startle reflex resulting in parent's eye being gouged.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>EI</b> (Early Intervention): Government program designed to keep parents from strangling the so-called experts who think they know more about their child than they do.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><span><b>HBOT</b> (HyperBaric Oxygen Therapy): One of the more creative ways of putting additional pressure on families with a severely disabled child. The theory is that if they squeeze you enough they can get more money from you.</span></span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><span><span><b>HIE</b> (Hypoxic-Ischemic Encephalopathy): Technical term for brain damage due to lack of blood and oxygen. One of the many causes of cerebral palsy.</span></span></span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><span><b>IEP</b> (Ignored, I mean Individualized, Education Plan): This is a document that supposedly describes what your special needs child will be doing in school all day. A group of experts employed by the school district comes together once a year to make guesses as to what your disabled child will be doing a year from now. They then list highly specific and individualized therapies and procedures to assure the child actually achieves that and put them into a document that suspiciously ends up looking exactly the same as everyone else's IEP. They then mail copies of the document to everyone who promptly ignore them.</span></span></p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><br /></span></div><b>Insurance</b>: Your new full time hobby after your company realizes your child is a million dollar baby and takes advantage of every loop hole.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>I Love You</b>: Something other parents get to hear from their child.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Legally Blind</b>: A condition that causes stupid adults to approach a disabled child's parent and say, “I don't know if you know this but did you know your child can see?”</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Mic-key</b>: A plastic, button looking, thing that is inserted in a hole in the child's stomach wall. It is designed to do 4 things. 1) Connect a feeding tube to the child. 2) Give the child something to yank on so, once pulled out, they can spray stomach contents on everyone and everything. 3) Trick the parent or caregiver into thinking the feeding tube is firmly attached thereby assuring maximum spilling of sticky pediatric formula. 4) Allow the child to make cool fart noises through their belly button.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Nickjr/Disney Channe</b>l: The only TV stations you get to watch for the next 20 years.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>PT, OT, and all the other ___Ts</b>. A form of therapy designed to leave your pocket book empT.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Quad</b>: Short for quadriplegic. This doesn't mean the person is paralyzed in all four limbs. It can also mean the child kicks and punches the #$%^ out of you when you try to get them dressed because they can't control their spasms. Or can mean their muscles in their body are always so contracted that their body twists and turns in every direction causing scoliosis and hip dislocation.</span><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>R-word</b>: This is something, that if you say it, some parent is going to bitch slap you. For the uninformed, we don't say retarded anymore because of its association with that most awful of insults, calling someone a “retard”. We now say intellectual disability or cognitively impaired.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Ramp</b>: Something you put in the front of your home to alert your homeowner's association to watch you extra closely for creative ways to fine you. Also used to alert criminals that your home is an easy mark.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Sleep</b>: Something you don't have anymore.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Spastic</b>: One of the positions parents assume when they get their child's latest medical bill or denial in the mail every day.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>SSI</b>: A religious cult that believes someone with a higher cost of living due to a disability can live on $700 a month.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Toothbrush</b>: A device designed to make a brain damage child gag and vomit immediately prior to their school bus arriving thereby assuring the child always wears a clean set of clothes to school.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Wheelchair</b>: 1) A device designed to instantly widen doorways and to give your home a custom “lowrider” wainscoted look, that fashionable ring throughout your entire home approximately 12 to 18 inches above the floor. 2) A device designed to double your car payments.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>Fulfillment</b>: What you now have in place of fun. Not a bad trade, all things considered, because fun lasts a moment and has to be repeated over and over again whereas the fulfillment you get from loving a severely disabled child lasts for eternity.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b><i>Here are a few more that do not directly appy to me, but do to most of the world with a disabled child.</i></b></span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><br /></span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>Trach</b>: Similar to the aforementioned Mic-key but it's used to connect a breathing tube/ventilator rather than a feeding tube. It comes with the added benefit of depriving the parent of sleep because you have to suction slime from your child's airway every few minutes 24 hours a day so they don't choke to death.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>Vent</b>: This is what the irate parent does when the stupid caregiver doesn't know how to operate the child's ventilator and is too proud to admit it.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><b>DAFOs</b>: Slightly more Deadly version of the aforementioned AFOs.</span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>APE </b>(Free and Appropriate Public Eduction): This is what happens to special needs children at school. They get Faped by the other kids who think it's fun to bully them. Of course, the teachers do nothing to protect your special needs child and sometimes even engage in a little faping themselves because, after all, FAPE is mandated by the government. The best thing about getting Faped, of course, is it's free.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>Friends</b>: Something you used to have.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>Fundoplication </b>(or Fundo or Nissen): Revenge of the GERDs. A surgical procedure designed to prevent the child from barfing all the time. It comes from the Latin phrase for Funds Depletion.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>GERD</b> (</span><span><span>GastroEsophageal Reflux Disease): For the rest of us it's called heartburn but, for the disabled child, they give it a bigger, fancier name so they can charge the parents hundreds of dollars a month for what the rest of us pay $10.</span></span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><b>Head of Household</b>: Your new income tax filing status after your spouse bailed because he/she “didn't sign on for this”.</p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><br /></p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><b>IFSP </b>(Individualized Family Service Plan): This is the baby brother to the IEP. It takes a lot of practice to foul up an IEP in exactly the right way so, prior to your child being old enough for school, they get to practice for 5 years while your child is still a preschooler.</p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><br /></p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>NICU</b> (Neonatal Intensive Care Unit): Pronounced Nick-You on account of that's what they do to your pocket book.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>NPO </b>(Nothing By Mouth): OK, so it's the Latin equivalent of nothing by mouth but, if they just said nothing by mouth they couldn't charge you as much.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><br /></span></p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>SBS </b>(Shaken Baby Syndrome): An argument in support of capital punishment.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span><b>Seizure</b>: This is what they do to your home and personal property when you can't pay your child's million dollar medical bill.</span></p><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "> </p></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 16px; "><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 11px; line-height: 1.5em; "><span> </span></p></span></div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-21519632353868259412011-12-17T07:43:00.000-08:002011-12-17T07:47:20.433-08:00COURAGE<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6FYXJJI5cbOpr69KQgRuFj5ExKwsFF6Qwo_pXFqCeUf7ckxMUJsFS9KG8eQeMoIPOj5WkqOlSL_0EdZZ6KwlTUtCYtNXMgKxCFbI09r29GOvMIRfaTywUMTOzHnoZCHCTu_S5CqG2Kd0/s1600/377383_328691563809133_222198517791772_1357888_1249440889_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6FYXJJI5cbOpr69KQgRuFj5ExKwsFF6Qwo_pXFqCeUf7ckxMUJsFS9KG8eQeMoIPOj5WkqOlSL_0EdZZ6KwlTUtCYtNXMgKxCFbI09r29GOvMIRfaTywUMTOzHnoZCHCTu_S5CqG2Kd0/s320/377383_328691563809133_222198517791772_1357888_1249440889_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5687124299462497090" /></a>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-83608106589905601302011-11-21T18:19:00.000-08:002011-11-21T18:51:04.158-08:00FRUSTRATION IS UPON US!Frustration, it hits only every now and then with Joey. Our new normal is well established now. Life is moving at a good pace right now, however my kids are growing up to fast.<div><br /></div><div>This time of the year is probably the hardest for me when it comes to Joey. This is when all his dr. appts. are, when all the paperwork for all the services he has is due. </div><div><br /></div><div><ul><li>The appt. I dread the most is his Orthopedic. Is there the beginning signs of scoliosis? Are his hips subluxed at all? How bad has his tendons in his calfs gotten? Are his abductors pulling in to much? Do we need to botox and serial cast AGAIN? This appt. is so stressful. Even though Joey is very healthy and happy I will for the rest of his life struggle with dealing with the orthopedic side of his injury. </li></ul><ul><li>Then we have the Neurologist appt. Does he need medication? This is the question that is always asked. Usually though it is not that stressful.</li></ul><ul><li>And what about the Opthamalogist. Can Joey see any better? What can we do to help his eyesight.</li></ul><div><br /></div><div>So my first thought is "Am I doing enough for Joey". Do I add more therapy? How much more can he or I take before it pushes us over the limit? So the answer to my questions are, yes we can do more, but just a little more. I am going to enroll him in speech therapy outside of school. Over summer and the first half of fall I took JOey to a clinic at CSUN to help him with an AAC device. Lets just say that they are not ready for a child like Joey yet, it didn't work good. He can't use his arms well enough to use a switch to communicate and his eyesight is not good enough for him to see what to touch or to even use an eye gaze device. So that leaves us with speech. We need to get Joey to TALK. That is going to be his best form of communication. So start TALKING Joey.</div><div><br /></div><div>Then in January or February I will take Joey back to AZ for more therapy there. This usually helps him cognitively and hopefully wll help his tone in his body to keep him for having to have more botox. I need to keep up on this therapy and try and do it every 3 months or sooner.</div><div><br /></div><div>Well that's it for therapy. </div><div><br /></div><div>Joey loves school. He takes the school bus every day. I think this is his favorite part of school. He is a very happy boy and is growing up fast.</div><div><b><br /></b></div><div><b>HAPPY THANKSGIVING!</b></div><div><br /></div><br /></div><div><br /></div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-49454008548480736432011-10-27T21:33:00.000-07:002011-10-27T21:58:21.477-07:002011 Near Drowning Mom's RetreatJust this last weekend I went to <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Suncadia</span> in <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Cle</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Elum</span>, Washington for our 2<span class="blsp-spelling-error" id="SPELLING_ERROR_3">nd</span> ND Mom's retreat. This year there were 15 amazing mom's and 2 helpers. It was the best most normal weekend ever. Just check out my pictures.<div><br /></div><div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ-moDQHswTKZm0uzwgKj78g_bDA0UphaR9zV4BnU_74gmXUwOMJJ6KbYJGg1wsotK4JGlyMA6aydXRnMu1nNXdHcCdaCtmmZfCfkiltCXRkG8luFBInAUiYqhVcTxVwWXfY6Enif158c/s1600/297449_10150372147359063_757114062_8255348_421039828_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ-moDQHswTKZm0uzwgKj78g_bDA0UphaR9zV4BnU_74gmXUwOMJJ6KbYJGg1wsotK4JGlyMA6aydXRnMu1nNXdHcCdaCtmmZfCfkiltCXRkG8luFBInAUiYqhVcTxVwWXfY6Enif158c/s320/297449_10150372147359063_757114062_8255348_421039828_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668400159458515234" /></a><div style="text-align: center;"><b><i>BEAUTIFUL Ladies! BEAUTIFUL Leaves!</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLcUjqr5Or3hGPH9eaumPQHBaStoJ5twcMcQPXlLdkuyupPeMCMHcIpNV7CVlVIx08JiqX0jAnQlvhx2_ix18QDx9uf8GnVpMYoaNM0iz2Ekef4rU1CPL4n3bxp0UTB-OQJz-jRx9rDgM/s1600/319244_2505087517110_1550689360_2682261_611188095_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLcUjqr5Or3hGPH9eaumPQHBaStoJ5twcMcQPXlLdkuyupPeMCMHcIpNV7CVlVIx08JiqX0jAnQlvhx2_ix18QDx9uf8GnVpMYoaNM0iz2Ekef4rU1CPL4n3bxp0UTB-OQJz-jRx9rDgM/s320/319244_2505087517110_1550689360_2682261_611188095_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668400054814700834" /></a><div style="text-align: center;"><b><i>just having fun with Lisa</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG5-pn3Z4s3uMz-6fvM_XAYley4_y3WLrL0_X3yzLq87_MMi8eLiZMa9bovMrJeBeuqCypAc6iS70MrxiKdO2tgLLXtMdiaLEgbnzPuElaHHTU3aw5AC12h94M-q5zvETH-SzVu6yOYdQ/s1600/313124_2505091317205_1550689360_2682268_887159750_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG5-pn3Z4s3uMz-6fvM_XAYley4_y3WLrL0_X3yzLq87_MMi8eLiZMa9bovMrJeBeuqCypAc6iS70MrxiKdO2tgLLXtMdiaLEgbnzPuElaHHTU3aw5AC12h94M-q5zvETH-SzVu6yOYdQ/s320/313124_2505091317205_1550689360_2682268_887159750_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668400052660061842" /></a><div style="text-align: center;"><b><i>Yep, I'm creeping behind Joanna and Erin.</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE7jtZKXNXHKvHZUR1TZv7XU8vD6TFdzhxfyRrK69JZ6vgqNOI7yLoRNMtojDMQauZEID8LUFCGnQNndA1omvOpzPLvAZo7cfsQkNEDyjmJhpMJcjLp8WJwjPk4TScVdR4uoGI-1vm4BE/s1600/293500_2505108437633_1550689360_2682302_1379040002_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE7jtZKXNXHKvHZUR1TZv7XU8vD6TFdzhxfyRrK69JZ6vgqNOI7yLoRNMtojDMQauZEID8LUFCGnQNndA1omvOpzPLvAZo7cfsQkNEDyjmJhpMJcjLp8WJwjPk4TScVdR4uoGI-1vm4BE/s320/293500_2505108437633_1550689360_2682302_1379040002_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668400037481236834" /></a><div style="text-align: center;"><i><b>Fun times with Amy, Lisa and Lindsey</b></i></div><div style="text-align: center;">.</div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWeaj2002IT5g1SjQLmtnHU5vZdJlpsuxiempRvQiPPMICvSiJr8ymeIq3DasnuIq4mDCi-l9orOdj7G0FqoCcWd_ZGIMjoAU8HFiKkXyjQDq7LWdcWTCt8t0jtXKFPm3H61gOShxiDD0/s1600/312860_2505110237678_1550689360_2682306_583602768_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWeaj2002IT5g1SjQLmtnHU5vZdJlpsuxiempRvQiPPMICvSiJr8ymeIq3DasnuIq4mDCi-l9orOdj7G0FqoCcWd_ZGIMjoAU8HFiKkXyjQDq7LWdcWTCt8t0jtXKFPm3H61gOShxiDD0/s320/312860_2505110237678_1550689360_2682306_583602768_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668400037768076082" /></a><div style="text-align: center;"><b><i>Martha Washington and her daughter Amy. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">LOL</span>!</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifLCJBz3mC9Wjfb8m_IAZDX2Z6Uh0T6xFygEevqpLGqnPznovl61ePCTNL5k9JAcJvG2JHvMo4NvXLUEPxGye0HiVRaruEW5AHN6GyrsykemMIlHqhXPz-wLZ3cpchfkU7YG7ams7Uc6o/s1600/IMG_1401.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifLCJBz3mC9Wjfb8m_IAZDX2Z6Uh0T6xFygEevqpLGqnPznovl61ePCTNL5k9JAcJvG2JHvMo4NvXLUEPxGye0HiVRaruEW5AHN6GyrsykemMIlHqhXPz-wLZ3cpchfkU7YG7ams7Uc6o/s320/IMG_1401.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668400032843201490" /></a><div style="text-align: center;"><b><i>Amy, your a natural on creeping.</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8SjwTbX8_8ExUd0d8zz5cSKybErZoy0tYLzqv3CAykA3COsKg_fqe6GEwFO6TtHI-SvgloXf7jBu9b1tbKeiezNO7d9ZAF4NBn83-QRxIZacEgf6GA38PG-8QVsUhcsurB1HT36VxQgs/s1600/IMG_1393.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8SjwTbX8_8ExUd0d8zz5cSKybErZoy0tYLzqv3CAykA3COsKg_fqe6GEwFO6TtHI-SvgloXf7jBu9b1tbKeiezNO7d9ZAF4NBn83-QRxIZacEgf6GA38PG-8QVsUhcsurB1HT36VxQgs/s320/IMG_1393.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668399512541156962" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqZAoppKRCje5DZepLytQ0wEunhT0jpPKrF5ORhdSFfDab-NcpmTM0WaG__9gjN7Cdw0kym24zVObyIW0rjcMLw_ndI0mYAn-bMl11SDSqEGO24qW9N9Yte4SE1iESoKKUanlLBqcBPxw/s1600/IMG_1389.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqZAoppKRCje5DZepLytQ0wEunhT0jpPKrF5ORhdSFfDab-NcpmTM0WaG__9gjN7Cdw0kym24zVObyIW0rjcMLw_ndI0mYAn-bMl11SDSqEGO24qW9N9Yte4SE1iESoKKUanlLBqcBPxw/s320/IMG_1389.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668399484493235538" /></a><div style="text-align: center;"><b><i>3 Little Piggies (Lindsey, <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Kehau</span> and me)</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi11veFUctWhhQiVtlCZKzgR-IIGAV9lP8m7yLG0tVRz2oEzqr0yGzjK8MQdxidOaVg7Adyadx6vKD-rGNMrRH6B54RBplruR6qMn3kDhryxsorZowljZJj44b_9OyGlfwtx11BxkdFvA8/s1600/SAM_1084.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi11veFUctWhhQiVtlCZKzgR-IIGAV9lP8m7yLG0tVRz2oEzqr0yGzjK8MQdxidOaVg7Adyadx6vKD-rGNMrRH6B54RBplruR6qMn3kDhryxsorZowljZJj44b_9OyGlfwtx11BxkdFvA8/s320/SAM_1084.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5668399483888050130" /></a><div style="text-align: center;"><b><i>THE MOST AMAZING WOMEN!</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6wrvs4C20DAEUpFCVbze2kLCoBC-LAuD0Kql1kJ7U0XlOdTwalR7GYbSiX3hOFpy5fH4bBP5aB7tPmXF6m66txydJBPjWaoCCI8EIDflVXW-10bv1F2M4ExLFhntIE9nJTzG6OGCb5nc/s1600/IMG_1381.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6wrvs4C20DAEUpFCVbze2kLCoBC-LAuD0Kql1kJ7U0XlOdTwalR7GYbSiX3hOFpy5fH4bBP5aB7tPmXF6m66txydJBPjWaoCCI8EIDflVXW-10bv1F2M4ExLFhntIE9nJTzG6OGCb5nc/s320/IMG_1381.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668399469075714994" /></a><div style="text-align: center;"><b><i>The beginning of our fun.</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsttIRpa-4LyIgSZ-UYBojZUcXkX_etp2VKKqXec4VWxMkxYibP6pUdNJaMtfSewXhmTDTOvxzN7iNdwExAYKP0Q6JSODPBGnOm5fxo8xTL0zFXtPKTQOwP1ZA0Aq68cqkOIm2ne6ubEM/s1600/IMG_1377.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsttIRpa-4LyIgSZ-UYBojZUcXkX_etp2VKKqXec4VWxMkxYibP6pUdNJaMtfSewXhmTDTOvxzN7iNdwExAYKP0Q6JSODPBGnOm5fxo8xTL0zFXtPKTQOwP1ZA0Aq68cqkOIm2ne6ubEM/s320/IMG_1377.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668399464418596258" /></a><div style="text-align: center;"><b><i>Let the good times begin.</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTVUdsKURgxe-zjt7KrY6c6ymbUYBvUOPKtOVlGfwN74brDMLgLrtVGRbbg02mrX0CgutDlK_rno9G_vRTX09u0Ilz7vBExXR1EArAfLmsAswUB88qtqYipa5u5w9TYAUgO8aiPG_oWpE/s1600/303736_2542027231475_1277520050_2997969_2048237036_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTVUdsKURgxe-zjt7KrY6c6ymbUYBvUOPKtOVlGfwN74brDMLgLrtVGRbbg02mrX0CgutDlK_rno9G_vRTX09u0Ilz7vBExXR1EArAfLmsAswUB88qtqYipa5u5w9TYAUgO8aiPG_oWpE/s320/303736_2542027231475_1277520050_2997969_2048237036_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668398643626546322" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCkaQU-AikNq0WyGFG0ZIRQ028JDKzcv0bbUHKTgTmbJ60qq5c1w9cIN7fHh5k7DLkdrZ7_AScilMoo6uGrWRjRFg20Qo8x1ohKUycG8Riu5OCOGt0cwerqCV_fm7aVF7peNDRFqiLQoA/s1600/IMG_1414.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCkaQU-AikNq0WyGFG0ZIRQ028JDKzcv0bbUHKTgTmbJ60qq5c1w9cIN7fHh5k7DLkdrZ7_AScilMoo6uGrWRjRFg20Qo8x1ohKUycG8Riu5OCOGt0cwerqCV_fm7aVF7peNDRFqiLQoA/s320/IMG_1414.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5668398637205789362" /></a><div style="text-align: center;"><b><i>Lunch at the Winery!</i></b></div><div style="text-align: center;"><b><i><br /></i></b></div><div style="text-align: center;">Of course I have a million other pictures, you can find many on my <span class="blsp-spelling-error" id="SPELLING_ERROR_6">facebook</span>.</div><div style="text-align: center;">Thanks Ladies for a most amazing normal, comfortable weekend. </div><div style="text-align: center;">Thank you Sue for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">organizing</span> it and thank you Tiffany for letting us use your place and Thank you Amy and <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Yoli</span> for all you did for us this weekend.</div><div style="text-align: center;">I LOVE YOU ALL!</div><div><br /></div><div><br /></div></div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-88285244535244679662011-10-15T06:59:00.000-07:002011-10-15T07:50:23.028-07:00and these are the DAYS OF OUR LIVES!and these are the "DAYS OF OUR LIVES". Growing up I use to watch this soap opera religiously. When I was in high school and then college I would tape it. I would never miss a show. <div><br /></div><div>I have now not seen the soap opera in over 14 years. WHY? KIDS. OH my kids.......I love them to death, but boy do they keep you busy. </div><div><br /></div><div>In the end of August all three started school. It was a big year for all of them. Jessica started 9<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> grade in High School, Jack started the 6<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> grade and my baby, Joey, started 1st grade. Jessica started softball and Jack kind of started football. He broke his arm 1 week before the first game, so he hasn't played, but still goes to every practice and every game. His cast just came off this last week and is healing great.We are hoping he will be ready to play in a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">tournament</span> over Thanksgiving. Jessica just finished tryouts for softball in high school. We should find out later today if she made the team. </div><div><br /></div><div>Then there is my little man, Joey. Like I said he has started 1st grade. His 1st grade teacher is the same as last year. The class in kindergarten/ First grade split. I really like this, because it took about the first 3 months to even figure out Joey and for him to get comfortable in the classroom to actually learn. So now that he has been with the teacher and his aide for a year now, He just picked up from where he left off last year and it has been great. Only difference with school this year is that he rides the school bus and is gone an additional 2 hours a day. However he has adjusted well. I think his favorite part of school is the bus ride. He loves the bumps and all the kids singing. </div><div><br /></div><div>At school, he is walking everywhere in his walker. He even dances when he is in his walker. He uses a Big Mac button to help answer questions and sits in a cube chair independently during circle time. His sitting has improved so much. He can sit in a cube chair for about 2 minutes, and can sit <span class="blsp-spelling-error" id="SPELLING_ERROR_3">criss</span> cross on the ground on an average of 7 minutes.</div><div><br /></div><div>When Joey started school I increased his food intake by a few hundred calories. he has gained 3 lbs since school started. He now weighs 44lbs. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Whoo</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_5">HOO</span>! This is big.</div><div><br /></div><div>As for now his therapy schedule goes as follows:</div><div><br /></div><div>Monday - *<span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">Behavioral</span> therapy 2.5 hrs at home</div><div>Tuesday - <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">Hippo therapy</span></div><div>Wednesday - *<span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">Behavioral</span> therapy 2.5 hrs at home</div><div>Thursday - *Behavioral therapy 2 hrs at home</div><div>Friday - Physical therapy 1hr at clinic</div><div>Saturday - <span class="blsp-spelling-error" id="SPELLING_ERROR_9">AAC</span> clinic 1 hr at clinic</div><div><br /></div><div>He also gets two 1/2 PT and OT sessions, speech, and vision at school each week.</div><div><br /></div><div>Thanks to my amazing babysitter I am able to get everyone where they need to be when they need to be there.</div><div><br /></div><div>I am planning on taking Joey back to AZ hopefully in January or February for more ABM therapy. I need life to slow down just a tad before I run away to AZ for a week with Joey.</div><div><br /></div><div>I am also planning on doing another garage sale in the spring to raise monies for Joey. He is getting big and needs some new equipment to help with his everyday needs. So start saving your things. Thanks</div><div><br /></div><div>As for Jeremy and I , well we get alone time with or without each other whenever we can. Just enough to keep our heads out of the water. We are both crazy busy working carrying numerous jobs each. </div><div><br /></div><div>This next weekend I leave for my Moms retreat in Seattle. I get to hang out with some amazing moms that are on the same journey as I. We all have kids that have had a near drowning. It is a great weekend and I look so forward to it.</div><div><br /></div><div>So these are the "Days of our Lives". Boy do I miss watching anything but the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">Disney</span> channel. <span class="blsp-spelling-error" id="SPELLING_ERROR_11">LOL</span>!</div><div><br /></div><div><br /></div><div><br /></div><div>*Behavioral Therapy - is a combination of speech, PT, OT, and vision. The therapist work on getting him to communicate and initiate responses.</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-43832560982820210832011-09-21T19:39:00.000-07:002011-09-21T19:50:51.613-07:00Old McDonald had a FarmI know I haven't updated in awhile. I will post a full update soon, but I wanted to share this with you first.<div><br /></div><div>Joey is practicing his sitting in a cube chair with no support. The therapist is singing to him and he decides to sing along to . Listen for the "E I E I OOO" at the end of the song.<br /><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/Y6PuTJV2a0o" frameborder="0" allowfullscreen=""></iframe><br /><br />TURN VOLUME UP FOR THIS ONE!</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-45152487258856478342011-08-08T17:10:00.000-07:002011-08-08T17:19:51.500-07:00Arizona TherapyPHEWWWWWWWWWWW ARIZONA IS HOOOOOOOOOOOOOOOOOOOOOOOOOOT!<div>
<br /></div><div>I mean 94 degrees at 8:30 in the morning and 110 degrees by 1:00. Yeah HOT!</div><div>
<br /></div><div>Joey had his first sessions of ABM today. He had one at 9:00 and the other at 1:00. Just from these two sessions, his body became sooooooooo lose. </div><div>
<br /></div><div>Then we took a bath in the pool.........................the pool was so hot that is was a bath. NOT refreshing at all, but great therapy for Joey. I put on his swimming ring and off he went. He had a blast kicking his legs and flapping his arms. Then the ring broke. I put him in a life vest, but he didn't like it as much and I have to hold onto him the whole time. Finally I took the life vest off and just held him under his arms. His body was the loosest I think I have ever felt it. His whole body was a noodle. He was SOOOOOOO relaxed.</div><div>
<br /></div><div>I plan on taking him swimming everyday we are here. I feel we are going to have some great results between the therapy and the pool.</div><div>
<br /></div><div>I want to send out a HUGE thank you to my cousins The Mitchells for letting us stay at your house. I really really appreciate it.</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-78515164136551010012011-07-27T06:54:00.000-07:002011-07-27T10:28:35.024-07:00Moms Retreat!First a quick update on Joey. He just finished a three week session of Tomatis (listening therapy). He now babbles a ton more and moves so much. He moves so much that he has fallen out of bed a few times. I now have 2 rails up, so far so good. He has been going to an AAC clinic at CSUN. This is so we can find a communication device for him. Nothing yet, still working on it. We leave in a couple weeks to Arizona for ABM therapy for Joey. Then when we return he begins 1st grade.<div><br /></div><div>I have picked Jessica and Jack up from sleep away camp this last weekend. My house is a mess again and the amount of noise has increased 10 fold. Jack started football and is rocking it. Jessica will start softball in a few weeks. School starts for all kids at the end of August. We are also in the process of remodeling our downstairs bathroom and bedroom. We are making the bathroom larger and handicap accessible. When it is all done, we will move Joey downstairs. This should help prolong my back from falling on me.</div><div><br /></div><div>In October I am going to meet up with an incredible group of women. I am going to Seattle WA on a moms retreat. However this is not just a regular retreat. All these incredible moms live the same life I do. We all have a child that had a Near-drowning. Ok so a little back story about our retreat. All of us moms constantly talk over facebook about out lives and kids. When we are deep in our conversations it feels very normal to us. These mommies understand our lives like no other person could understand. They live our life, our happiness, our sadness, our daily emotional and physical struggles. So finally after a lot of talking and a lot of planning, a couple women decided it was time for a gathering of the mommies. Last year we had our first retreat. One mother did most of the work. She made sure we had everything we needed. We did not have to pay for anything. With help from her friends, they provided the transportation to and from the airport (about 1.5 hr drive) and all our food. We had such a great time, we laughed a lot and cried a lot. We stayed up way to late and woke up way to early. It was such a great trip no one want to leave. The 12 woman that went formed a bond that will last an eternity.</div><div><br /></div><div>This year we are having our 2nd retreat. We have 18 mommies going this year. Some of these mommies have NEVER left their ND child (hard to trust someone to take care of them). They are coming from all over the country. We want to make sure that these new mommies have the same wonderful experience that we all had. So I am asking for your help. Some of the things we need for our retreat is food money and gas money. We could use gift cards to any gas station and money donations. We are looking to raise about $1500. This will cover all our food, a night out on the town, game prizes and gift baskets. If you can help make our retreat something we will never forget we will be forever grateful. Our retreat this year is Oct. 21st-24th. You can mail donations to me or donate through the donate tab on Joey's website.</div><div><br /></div><div>Thank You all for being there for Joey and I. Have a great Summer!</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-32441174587795397662011-06-25T08:43:00.000-07:002011-06-25T09:42:22.385-07:00Update on ME.<div style="text-align: center;"><span class="Apple-style-span" style="font-size: 13.2px; "><b><span class="Apple-style-span" style="font-size:large;">Joey:</span></b></span></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">So bear with my mom, it has been awhile since she wrote and has a lot to tell you all.</span></b><div><b><span class="Apple-style-span" style="font-size:medium;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY57OLe8391Q5XmOpp8i7T0KCHVDsXxZJERevOosawbMaAje8w-oZgLjaXXVOgMxPbQ8ee_CA_lgLFB5dqXdYdFPilIILL-YNfC4FTrxgwwqh95GpsxDlNS2Sro2S2kTi1wNRFcJGzi88/s320/IMG_0890.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5622197292754384114" /></span></b></div><div style="text-align: center;"><b><span class="Apple-style-span" style="font-size:large;">Mom</span><span class="Apple-style-span" style="font-size:medium;">:</span></b></div><div style="text-align: center;"><br /></div></div><div><b><span class="Apple-style-span" style="font-size:medium;">School is out. Joey completed kindergarten and is going into 1st grade in the fall. I can't believe my baby is going into 1st grade ;( Kindergarten was a great year. He learned so much and did so much in school. He has a gait trainer (walker) he uses and walks all over the playground and classroom. He also has a stander in his classroom and he is working on sitting independently in a cube chair. The goal is to get him to sit for 15 minutes in it. This chair has NO support. Its all him. He can sit for 3 minutes now in the chair. The teacher and aides have been working great with his switches to get him to communicate. He reaches and pushes his button to talk. He is doing great using his special crayon to color me a million pictures. In the 1st grade he will have the same teacher and aides which is great because they know him already and its not starting from the beginning again. Right now he is in summer school for 4 weeks with the same teacher. He loves hanging with his friends.</span></b></div><div style="text-align: center;"><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">In March he had botox on his hamstrings and calf's again to help loosen him up. It works fantastic with Joey. He grew so much in the last year that we had to get him new AFO's (ankle foot braces). He has set a new record when it comes to sitting independently. He can sit on the floor criss cross applesauce for 36 minutes now. He reaches outward now to grab and touch. He walks in his gait trainer all over now. We don't even count the steps anymore. </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">In January Joey got glasses as a therapy tool to help uncross his eyes and get him to use his central vision. Well, it is working. He is tracking and focusing so much better. Still can't figure out the extent of his eyesight though. </span></b><b><span class="Apple-style-span" style="font-size:medium;">In June Joey started an AAC clinic at CSUN. This clinic helps determine which is the best communication device for Joey. We are only 3 days into it and he is already making choices. It was great to see him use his button to make a choice.</span></b></div><div style="text-align: center;"><b><span class="Apple-style-span" style="font-size:medium;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioiHClpC6rAjJXdQzeUT3VbIFNgMT5FR7urmW6Sn8dsD8mQzQKyRcE3LFKIWucupqq-eyQhpKsuXIOA8aLPmZTxgfQn0vOtQHCApecqj30Gpy5YXqh9hQuevtGlgZXECCR5To2BvM7_T4/s320/IMG_0918.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5622197288896612882" /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">In April, my mom and I went to the abilities expo here in LA. A convention for the disabled. We found a fantastic bike for Joey, but unfortunately the cost was way to much ($3700). I know right just for a bike. Well at the same time we saw this bike, a friend contacts me asking if I want to buy a bike for Joey that his son has outgrown. AND guess what? It was the same exact bike we saw at the expo. So Joey has a new bike. He loves it so much. He uses it almost every day.</span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 239px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhiYIFljy8g7HGc2TsftGfw627n0YZxYWuasGk18z8udeDf-vzDSeLJ2QnlbdZ-gQVD0QwAjEDXmnQv4U9YoxfFA7GttaCCd4_N6jBhSEq6fclXKGwIPtb87WiqV2wVhcxXabUnQan0PE/s320/IMG_0944.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5622197281592502722" /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">Joey will start Tomatis (listening therapy) and Vital Stim (swallowing therapy) in July for 3 weeks. It is an intensive program in which he will go everyday. The Tomatis will help him organize himself and the Vital Stim will help him drink better. Both therapies will also help his speech and voice better. When this is done we will be heading back to AZ for more ABM therapy. Joey was so loose after this therapy. He did really great. So we have a full busy month of July. </span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">Tuesday is Joey's B-day. He is turning 6 yrs old. We are having a little b-day party for him on Sunday. I will post pictures of his party this next week.</span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:medium;">Well I think that's it for now.</span></b></div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com2tag:blogger.com,1999:blog-5506872561187889292.post-73311043293483496342011-05-10T20:35:00.000-07:002011-05-10T20:44:50.438-07:00Feels Perfect<div style="text-align: center;">Tonight before I put Joey to bed he sat on my lap and we cuddled. He snuggled into me.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">So why is this so exciting? Well for those of you that have personally meet Joey, you know how stiff his body is. He is Hyper tonic (stiff, muscles always contracted). His abductors pull in, his arms are usually straight out stiff, and his back is always very tense. Tonight as he sat on my lap, legs straddled across my hips, his chest against mine and his head snuggling into my neck, he was not tense. He was looser then I have ever felt him. NONE of his muscles in his whole body seemed contracted at all. He melted into me. We laughed together and of course I kissed his face all over. He felt like he didn't have brain damage. Nothing seemed out of place. </div><div style="text-align: center;"><br /></div><div style="text-align: center;">This was the most perfect 15 minutes I have experienced in the last 4 years.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Good Night Joey. Mommy loves you. Sweet Dreams.</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1tag:blogger.com,1999:blog-5506872561187889292.post-51478613030649500762011-05-07T16:38:00.000-07:002011-05-07T17:13:49.648-07:00Hi, my name is Joey!<div><br /></div>Hi my name is Joey. My birthday is June 28. I will be turning 6 years old. My mom is going to give me a Mickey Mouse birthday party. Mickey Mouse is my favorite. I love watching Mickey Mouse club cartoons all day long. It really makes me happy. When it is not on all I have to do is yell "MOM" and bam, Mickey Mouse is on my ipad. There are many different things I like. I love hearing my friends play. I love music and hearing people sing. I like when people hold my hand and pull me along in my wheelchair. I love when people cheer. I love ice cream and cake and pudding. <div><br /></div><div>When people see me in my wheelchair from afar, or even close up, most think I am completely disabled. Well, I'm not. Then there are those people that know me well and still judge me and think that I would not want to do what a typical 5 yr old boy would do. Don't boys like to play baseball? I am on the Cardinals and love wheeling around the bases and throwing the ball. Don't boys like to jump on a trampoline? I think this is my most favorite thing to do, especially when my brother plays with me. Don't boys like to play at the park? I like swinging on the swing. Don't boys like to pound on things and get dirty and yell and flirt? I love doing all these things too. I just do all these things a little different then most boys. I have best friends at school that are typical. They read to me and play with me and make sure I have what I need to be happy. They don't know that I am different (ok maybe a little different, but not totally different). They give me high fives and fight over who gets to push my wheelchair.</div><div><br /></div><div>I have a wish. I wish that moms and dads would not teach their kids that I am scary or fragile or not of typical mind. That moms and dads would let there kids come and talk to me when we are out and about. I like when they ask questions about my wheelchair or braces or anything about me. I wish that adults would not assume that I would not want to play or can't play or would not want to talk or can't talk. I wish adults would not judge my life and me as a person. If you have questions, any questions, ask me, my mom is there to help me with the answers.</div><div><br /></div><div>Just because I am in a wheelchair and can't talk much, doesn't mean that I am not a 5yr old boy that likes the same things all other 5 yr old boys like. THINK ABOUT WHAT I WANT, NOT WHAT YOU THINK I WANT. Ask my mom if you don't know.</div><div><br /></div><div>HAPPY MOMMY'S DAY to my MOMMY and GRANDMA'S and AUNT'S and all those wonderful Mommys out there.</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com3tag:blogger.com,1999:blog-5506872561187889292.post-61270004537703681602011-05-01T21:07:00.000-07:002011-05-01T21:51:30.832-07:00"I GO"<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJMs2AIQ4tYBLdH28oyKlAWbHy-VXI0BQT4d1Tr7FCKmIAhgH0BPEvhWCWgr1CIkA3adN-ikbAUFKyEKvjWIYmtZCgBvJf7VBmPO63JxatTye6YDnsjoUwH-Dv46CWiBOCJDs9K7WsGPs/s1600/215857_2014552764943_1277520050_2425480_2862016_n.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJMs2AIQ4tYBLdH28oyKlAWbHy-VXI0BQT4d1Tr7FCKmIAhgH0BPEvhWCWgr1CIkA3adN-ikbAUFKyEKvjWIYmtZCgBvJf7VBmPO63JxatTye6YDnsjoUwH-Dv46CWiBOCJDs9K7WsGPs/s320/215857_2014552764943_1277520050_2425480_2862016_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5601976582960627634" /></a><span class="Apple-tab-span" style="white-space:pre"><div style="text-align: center;"><span class="Apple-style-span" style="white-space: normal; "> Santana and Joey Hanging Out<span class="Apple-tab-span" style="white-space:pre"> </span></span></div></span><div><br /></div>Joey says it best, "I GO". <div><br /></div><div>Since 4 years ago Joey and I have been traveling all over the place for therapy. We have spent close to 100 hours in the air and 1000 hours and miles in the car. When Joey started Kindergarten this last fall, I decided it was time to take a break. We moved therapy to a clinic around the corner from our house and only traveled to NAPA Center in LA a few times. Well as most of you know me, I can't sit still for too long. So off and running we go again.</div><div><br /></div><div>Just this last week I took Joey, Jessica and Jack to Arizona for ABM therapy for Joey. We have great friends that opened their house up to us all. Lindsey, James, Jett 9, Santana 6 (near drown like Joey), and Tyree 3 ("What the Heck"). Jack spent time hanging with Jett. This was great therapy for Jack. Jack has never meet another boy with a disabled younger brother like Joey. So without having to say anything, they understood each others lives and bonded great. Jessica split her time between her boyfriends, Cameron (her real boyfriend) and Tyree (the younger man). I hung out with Lindsey during the day and in the afternoon took Joey to his ABM therapy. Unfortunately on Wednesday I got sick. It is Sunday and I am home and still sick. Poor Lindsey, she got sick also. On Friday, sick and all, we took the younger boys to see Sesame Street Live, then went to a Charity event for lunch, then off to therapy. Besides this, we really didn't do much in AZ. The sickness got to us and did us in. However, Jack did not seem to bored and neither did Jessica. </div><div><br /></div><div>Joey's therapy went great. He responded very well. His body is very loose. It will still take a few weeks to see the full effect of the therapy. I think I might come back to AZ in the summer and do another round of ABM.</div><div><br /></div><div>Lindsey and her family have a great house that they built after Santana's accident. It gave me a lot of great ideas for modifying our house to fit Joey's needs. Thank you again for sharing your house with us. I really really appreciate it. I will miss you all. It is nice being around another family that lives your life. It makes things normal.</div><div><br /></div><div><br /></div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com0tag:blogger.com,1999:blog-5506872561187889292.post-12257478216937808742011-04-16T13:02:00.000-07:002011-04-16T13:19:33.796-07:00Progress 4 years LaterI used a talker today to help me communicate better. I hit a button with my elbow to let my mom know what I wanted. It was really cool. I still need a lot of practice, but I'll get there. <div><br /></div><div>On Wednesday I sat for 30 minutes.</div><div><br /></div><div>On Friday I crawled. </div><br /><iframe title="YouTube video player" width="640" height="390" src="http://www.youtube.com/embed/1TXlRE3l0nA" frameborder="0" allowfullscreen=""></iframe><div><br /></div><div>ENOUGH SAID!</div>Anonymoushttp://www.blogger.com/profile/15989275006055064140noreply@blogger.com1