Fighting Joey

4 DAYS AGO!

2012-01-20T14:55:00.000-08:00

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

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

SCHOOL

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

HOLIDAYS

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

DOCTORS APPT.

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

THERAPY

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

Well that's about it in a nutshell.

Hoping everyone has a HEALTHY, HAPPY, and WONDERFUL 2012

Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about

2011-12-17T08:16:00.001-08:00

I stole this from another parent with disabled children.

Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about

By Roy L. Ellis (with a few modifications)

ADA (Americans with Disabilities Act): This is what those morons do who illegally park in handicap parking spaces.

AFOs (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.

CP: 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.

CVI (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.

EI (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.

HBOT (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.

HIE (Hypoxic-Ischemic Encephalopathy): Technical term for brain damage due to lack of blood and oxygen. One of the many causes of cerebral palsy.

IEP (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.

Insurance: Your new full time hobby after your company realizes your child is a million dollar baby and takes advantage of every loop hole.

I Love You: Something other parents get to hear from their child.

Legally Blind: 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?”

Mic-key: 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.

Nickjr/Disney Channel: The only TV stations you get to watch for the next 20 years.

PT, OT, and all the other ___Ts. A form of therapy designed to leave your pocket book empT.

Quad: 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.

R-word: 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.

Ramp: 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.

Sleep: Something you don't have anymore.

Spastic: One of the positions parents assume when they get their child's latest medical bill or denial in the mail every day.

SSI: A religious cult that believes someone with a higher cost of living due to a disability can live on $700 a month.

Toothbrush: 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.

Wheelchair: 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.

Fulfillment: 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.

Here are a few more that do not directly appy to me, but do to most of the world with a disabled child.

Trach: 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.

Vent: 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.

DAFOs: Slightly more Deadly version of the aforementioned AFOs.

APE (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.

Friends: Something you used to have.

Fundoplication (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.

GERD (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.

Head of Household: Your new income tax filing status after your spouse bailed because he/she “didn't sign on for this”.

IFSP (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.

NICU (Neonatal Intensive Care Unit): Pronounced Nick-You on account of that's what they do to your pocket book.

NPO (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.

SBS (Shaken Baby Syndrome): An argument in support of capital punishment.

Seizure: This is what they do to your home and personal property when you can't pay your child's million dollar medical bill.

COURAGE

2011-12-17T07:43:00.000-08:00

FRUSTRATION IS UPON US!

2011-11-21T18:19:00.000-08:00

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.

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.

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.

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.

And what about the Opthamalogist. Can Joey see any better? What can we do to help his eyesight.

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.

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.

Well that's it for therapy.

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.

HAPPY THANKSGIVING!

2011 Near Drowning Mom's Retreat

2011-10-27T21:33:00.000-07:00

Just this last weekend I went to Suncadia in Cle Elum, Washington for our 2nd 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.

BEAUTIFUL Ladies! BEAUTIFUL Leaves!

just having fun with Lisa

Yep, I'm creeping behind Joanna and Erin.

Fun times with Amy, Lisa and Lindsey

Martha Washington and her daughter Amy. LOL!

Amy, your a natural on creeping.

3 Little Piggies (Lindsey, Kehau and me)

THE MOST AMAZING WOMEN!

The beginning of our fun.

Let the good times begin.

Lunch at the Winery!

Of course I have a million other pictures, you can find many on my facebook.

Thanks Ladies for a most amazing normal, comfortable weekend.

Thank you Sue for organizing it and thank you Tiffany for letting us use your place and Thank you Amy and Yoli for all you did for us this weekend.

I LOVE YOU ALL!

and these are the DAYS OF OUR LIVES!

2011-10-15T06:59:00.000-07:00

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.

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.

In the end of August all three started school. It was a big year for all of them. Jessica started 9th grade in High School, Jack started the 6th 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 tournament over Thanksgiving. Jessica just finished tryouts for softball in high school. We should find out later today if she made the team.

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.

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 criss cross on the ground on an average of 7 minutes.

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. Whoo HOO! This is big.

As for now his therapy schedule goes as follows:

Monday - *Behavioral therapy 2.5 hrs at home

Tuesday - Hippo therapy

Wednesday - *Behavioral therapy 2.5 hrs at home

Thursday - *Behavioral therapy 2 hrs at home

Friday - Physical therapy 1hr at clinic

Saturday - AAC clinic 1 hr at clinic

He also gets two 1/2 PT and OT sessions, speech, and vision at school each week.

Thanks to my amazing babysitter I am able to get everyone where they need to be when they need to be there.

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.

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

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.

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.

So these are the "Days of our Lives". Boy do I miss watching anything but the Disney channel. LOL!

*Behavioral Therapy - is a combination of speech, PT, OT, and vision. The therapist work on getting him to communicate and initiate responses.

Old McDonald had a Farm

2011-09-21T19:39:00.000-07:00

I know I haven't updated in awhile. I will post a full update soon, but I wanted to share this with you first.

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.

TURN VOLUME UP FOR THIS ONE!

Arizona Therapy

2011-08-08T17:10:00.000-07:00

PHEWWWWWWWWWWW ARIZONA IS HOOOOOOOOOOOOOOOOOOOOOOOOOOT!

I mean 94 degrees at 8:30 in the morning and 110 degrees by 1:00. Yeah HOT!

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.

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.

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.

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.

Moms Retreat!

2011-07-27T06:54:00.000-07:00

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.

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.

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.

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.

Thank You all for being there for Joey and I. Have a great Summer!

Update on ME.

2011-06-25T08:43:00.000-07:00

Joey:

So bear with my mom, it has been awhile since she wrote and has a lot to tell you all.

Mom:

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.

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.

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. 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.

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.

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.

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.

Well I think that's it for now.

Feels Perfect

2011-05-10T20:35:00.000-07:00

Tonight before I put Joey to bed he sat on my lap and we cuddled. He snuggled into me.

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.

This was the most perfect 15 minutes I have experienced in the last 4 years.

Good Night Joey. Mommy loves you. Sweet Dreams.

Hi, my name is Joey!

2011-05-07T16:38:00.000-07:00

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.

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.

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.

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.

HAPPY MOMMY'S DAY to my MOMMY and GRANDMA'S and AUNT'S and all those wonderful Mommys out there.

"I GO"

2011-05-01T21:07:00.000-07:00

Santana and Joey Hanging Out

Joey says it best, "I GO".

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.

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.

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.

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.

Progress 4 years Later

2011-04-16T13:02:00.000-07:00

I 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.

On Wednesday I sat for 30 minutes.

On Friday I crawled.

ENOUGH SAID!

What's Next

2011-04-14T18:37:00.000-07:00

Doctors Appt., Doctors Appt., Doctors Appt.!

January and February are usually the families doctor appt months. The only doctor appt. that makes me nervous is Joey's Orthopedic appt. This is the apptt. were they check his hips for dislocation and his back for scoliosis. Well luck was on our side again and his hips are fine and NO scoliosis. Whoo Hoo! However, Joey did have to have botox in his calfs and hamstrings again to help the stretching of these muscles. He was serial casted for 4 weeks. He was also sized for new braces. He just got his other braces last June. That is how much his feet have grown. I was very proud of my husband, he took Joey to this appt. and dealt with the removal of his casts and the sizing of his new braces. He did a great job with Joey that I think I might send him on more dr. appts. Hee Hee Hee NOT!

Ok to slightly change the subject.......................or actually making a long story of my point in this blog..........................

Two years ago Joey's feeding tube was removed. He was eating great and continues to eat great as of today. He was drinking so so, not great but was getting enough. Over the last 6-8 months I have noticed that his drinking has gotten worse. He seems to choke or drown himself (ironic UH!) when drinking. Sometimes you can hear him wheezing when drinking. SO, I made ANOTHER dr. appt. Off to the Gastro doctor we went. I called the dr. requesting that we do a modified swallow study and of course he wanted me to bring Joey into his offices to evaluate him. AND what did he say when I got in there, "So I here you want to do a swallow study? Well lets do a swallow study", so why did I have to spend my time and money to see the doctor when he was just going to call for the swallow study anyways. I know why, but it's still frustrating. Well I am very nervous about this study. If it shows he is aspirating then the feeding tube will have to go back in. I am hoping this is not the case. I plan on doing Vital Stim all summer to help his swallowing. I haven't even made the appt. yet and I already am very nervous with butterflies in my stomach.

Good news did come out of this appt. though. Joey has gained 3lbs and weighs 40lbs now and has grown 4 inches since summer. Nice Joey, thats why my back and knees hurt. Thanks! So with this said, obviously he is getting enough nutrition without the feeding tube.

We also have another appt. this weekend, but not with a doctor. This appt. is with a therapy clinic to get Joey an AAC device (communication device). I am very excited about this appt. This can make a HUGE difference in the way Joey lives his life.

In a couple of weeks we are heading to Arizona for ABM therapy and a little vacation. We are very excited to do this again and pray for some awesome results.

Well that is the going ons here with Joey. Please keep us in your thoughts and prayers that his swallow study goes the right way and that we see changes with the ABM therapy and that we find the right AAC device.

Joey's Quilt

2011-03-24T10:56:00.000-07:00

4 Years ago right after Joey's accident I joined the most wonderful support group; Parents of Near Drowns. There are so many wonderful families in this group that have and are going through the same things I'm going through with Joey. One of the members in the group however does not have a near drowning child, but loves our kids so much and wanted to do something for our children to make their lives better. She and a couple women joined together to start Circle of Hope. Circle of Hope makes very special handmade quilts for our kids. Although over time I believe that it is just her making these quilts now. So 4 years ago she put Joey's name down on the quilt list and yesterday in the mail I received his quilt. When she first put Joey's name of the list she asked me what his favorite things are. So the quilt was made especially for Joey.

Thank you Kate for Joey's quilt. It is one of the most amazing gifts ever.

The front of Joey's Quilt. Theme Trucks

Back of Joey's Quilt

I'm Still Figuring It Out.

2011-03-15T18:39:00.000-07:00

My Body. I'm still figuring out my body.

4 years ago I found my head control, then found my legs soon after that. Slowly over the years my brain has reconnected to my toes and hips and shoulders and elbows and mouth. Ok well you get my point. My arms just like my eyes have taken the longest, but are slowly finding the new connections. The connection to move my arms have been hard to find. However long the road has been it is finally showing me those connections are reestablishing (kindergarten has taught me these big words, nice UH). When I would try and reach to touch something I had to use my whole body. My whole body would tense up and start to go into extension. Then my arm would barely move. I have been working so hard to just move my arm and reach. Well yesterday I was finally able to do it. I was able to lift my arm up, extend and reach to touch my talking button without going into extension. But the really cool part is that I didn't just lift my arm up like I normal do, I EXTENDED (reached out, for those of you that haven't gone to kindergarten yet) it out and touched the button.

Anyways, my teacher told my mommy this yesterday, but she has a hard time believing it if she doesn't see it herself. So today I decided to show her. She just about cried. Oh moms, they are so sappy. It is really cool to push the button. The teacher records different sayings in it, it is really funny. Makes me laugh out loud each time I hear it. So I plan on working hard to now really get my arms working good. Its hard because I am also trying to get my eyes to work better also. I'm not good at multitasking. My moms great though. Did you know that my mom can feed me, talk on the phone, post on facebook, yell at Jessica, clip Jacks nails and do the laundry all at the same time. She is amazing.

Well that's all for now. I'm tired and need to watch Mickey Mouse club some more before I hit the hay.

LIfe as Usual!

2011-03-02T18:22:00.000-08:00

Life like usual has been very busy. The months of January and February are our annual doctor appt. months. Between Joey, Jessica, Jack and I we spend 2x a week at the doctors for these 2 months.

Joey has seen the eye doctor and got glasses to help his central vision. Now we need to get a vision therapist to help some more. Funny thing is Jessica teased Joey about getting glasses and a week later she got some of her own. LOL!

Joey also saw the Orthopedic. His spine is straight and his hips are in place. He will receive botox injections in his hamstrings, calfs and abductors at the end of March. Also his AFO's (ankle and foot braces) were adjusted for a better fit. He saw the Pediatrician and everything is A OK. He has gained a 1lb and grew 2 inches in 6 mos.

Joey has decided to now sit for longer periods of time. He averages about 6 minutes, but has sat for 26 minutes numerous times. We have also been trying to get him to stand on his own. This has been difficult because he has very little control of his upper body. We finally found the Theratogs. This helps stablize his trunk. It is a special suit he wears. It fits like a hug on him. He can stand with no support for only a couple seconds right now. This is how we started with sitting, a couple seconds now and 26 minutes in a year. Joey also began Hippotherapy (horse back riding while doing therapy). He loves this part of the day.

To See or Not to See...............That is the Question?

2011-02-01T20:36:00.000-08:00

Instead of comparing our lot with that of those who are more fortunate than we are, we should compare it with the lot of the great majority of our fellow men. It then appears that we are among the privileged. - Helen Keller

I remember as a little girl watching the movie about Helen Keller over and over again. I would walk around the house with my eyes closed. I would stuff cotton balls in my ears as to not be able to hear anything. I would wonder what it would be like to not be able to see or hear or talk, but when I tripped or decided to listen to the TV that was on or speak my mind I DID.

Throughout my life I always wondered what senses not to have would be best as not to effect life to much. Well I have a friend who can't smell, this also hinders her taste buds. This is not so bad. You never really crave anything to eat, can't smell farts, yet doesn't interfere to much in daily life. I know people who are deaf. I also took many sign language classes in college and this to is not a horrible sense to lose. You can still function through life without fully depending on others to help you. Then there is the sense of touch. I can only imagine how this can be dangerous.

AND what about sight?

Well since Joey had his anoxic brain injury 4 years ago I was able to see and learn and understand the importance of all our senses. I always thought that it is not a big deal if he can't see. This however turns out to be the most important sense to have. He could hear but not normal. Through many hours and intense sessions of tomatis Joey's hearing is now normal. Through 1000 of hours of Occupational therapy he regained his sense of touch and feeling. It then took a year to get his sense of taste back to normal. Today he knows what he likes to eat. 4 Years later we are still working on his eyesight. After three doctors and two rounds of Stem Cells Joey has regained his peripheral vision. YES, this is amazing and great, but it is not normal central vision.

........Now everyone stop and just look through your peripheral vision right now. Everything in front of you is blurry and everything in your peripheral is a headache. Well that's how Joey sees. Kind of sucks UH!

On Friday he received a brand new pair of glasses. These glasses are to uncross his eyes so that his brain can learn to focus on things in front of him. The doctor gave me therapy techniques to help him. As soon as I stuck the glasses on him it was a whole new world. His eyes began to look forward and he began to focus on things farther in front of him. His head wasn't always turned to one side or the other to try and see.

I can only pray that in the future he will be able to look at something to tell me he wants it. To be able to laugh at my funny faces, to be able to watch TV and laugh at what he sees on it. To have a favorite toy because of what it looks like. To be able to look at colors and see a plane in the sky and a fish in the water. To be able to move his wheelchair in a direction he wants to go.

So everyday stop and look at the beauty around you. Lock it in your memory. This Joey never had a chance to do. HOWEVER, I promise him and myself that one day he will see it all and see it all like we can see it.

I STOOD IF ONLY FOR A SECOND!

2011-01-27T21:12:00.000-08:00

Today Joey did something that I have not seen him do in 4 years. If only for a second, he STOOD ALL BY HIMSELF! A second turns into a minute to several minutes to hours.

We stand Joey everyday. Everyday we fight him to keep his upper body straight. Over the last couple weeks we have been trying different things to give his upper body more control. Then today the therapist puts him in a Ther-a-tog suit. This is like someone giving you a tight hug at all times. It also is suppose to be like having many therapists holding on to him all the time. This suit did it. It gave him the upper body control needed to stand independently.

I posted a video a couple weeks ago of him trying to stand. Scroll back and look at that one and compare it to this one. You rocked Joey.

Orthopedic Appt.

2011-01-19T16:41:00.001-08:00

With all of the doctors I take Joey to, the orthopedic makes me the most nervous and anxious. One of the things when it comes to Joey's body we have to watch out for are his hips dislocating and scoliosis. These two are the most common problems physically when it comes to kids with brain injury.

There are some therapies that will help prevent these issues from occurring. Weight baring on his legs, stretching his legs and hips and laying on his tummy. I try to do these all day with him. I have become very cautious with how his body is positioned.

So as I am driving down to the appt., I begin to freak out. I think 'what if this happens', 'what if that happens', 'what if, what if'. During his appt. I lay him on the xray table as I try to sneak a peek of the xrays (like I can really read them). Then back to the room to wait and wait and wait. It seems like forever, but has been only about 10 minutes. Doctor walks in really fast and says........................................"It's all ok, no scoliosis and his hips are perfect." Then she walks out. So all my nervousness and he is fine. I feel like a weight has been lifted off my shoulders.

Doctor likes what she sees. His calf's have stretched out nicely from the botox back in May. In March we are going to Botox his calfs again to prevent them from getting tight again. We are also going to botox his hamstrings and abductors. He will get a brace to wear at night to stretch his abductors while the botox is in effect.

I can't tell you how relieved I am. No more worries until next year.

Conquering the Beast.

2011-01-17T21:15:00.000-08:00

Today Joey had his annual Neurology appt. The doctors asks many questions, one of which "has Joey regressed in anyway"? My answer was, "WELLLLLLLLLLL, his ATNR and startle reflex seems to be worse". This has been the beast in our life for the last 4 years. It has gotten better, but over the last few months seems to be happening more.

What is ATNR?

The asymmetrical tonic neck reflex (ATNR) is a primitive reflex found in newborn humans, but normally vanishes around six months of age.

It is also known as the "fencing reflex" because of the characteristic position of the infant's arms and head, which resembles that of a classically trained fencer. When the face is turned to one side, the arm and leg on the side to which the face is turned extend and the arm and leg on the opposite side bend. For example, in children with cerebral palsy, the reflexes may persist and even be more pronounced. As abnormal reflexes, both the ATNR and the TLR can cause problems for the growing child. The ATNR and TLR both hinder functional activities such as rolling, bringing the hands together, or even bringing the hands to the mouth. Over time, both the ATNR and TLR can cause serious damage to the growing child's joints and bones. The ATNR can cause the spine to curve (scoliosis). Both the ATNR and TLR can cause the head of the thighbone to partially slip out (subluxation) or completely move out of the hip socket (dislocation).

ATNR being a reflex, means Joey has NO control over it. It usually happens when Joey is irritated by anything, however it can also just happen because the wiring in his brain is freaking out.

He also has the startle reflex. What is a startle reflex?

The startle reaction, also called the startle response, startle reflex or alarm reaction, is the response of mind and body to a sudden unexpected stimulus, such as a flash of light, a loud noise (acoustic startle reflex), or a quick movement near the face. In human beings, the reaction includes physical movement away from the stimulus, a contraction of the muscles of the arms and legs, and often blinking. It also includes blood pressure, respiration, and breathing changes. The muscle reactions generally resolve themselves in a matter of seconds. The other responses take somewhat longer. An exaggerated startle reaction is called hyperexplexia (also hyperekplexia).

The startle reflex is not physically debilitating. Just an annoyance.

There are therapy tools to help in decreasing these reflexes. The startle reflex is very simple to do, however, the therapy for the ATNR is much more difficult and complicated.

Anyways, the issue with these reflexes is, WHY IS JOEY GETTING WORSE WHEN IT COMES TO THESE REFLEXES? Either something physical is bothering him and that is his body saying "OUCH". Or in my opinion, he has become more aware, so more things physically and environmentally are bothering him. I like the second outcome better, but this means that we need to find a way to easy his brain to calm the reflexes. This would mean medication. YUCK! I hate the idea of putting him on meds. If it is the first, then that's easy, find what the problem is and fix the problem, the reflexes calm on their own.

So I will take Joey to the pediatrician for a complete check up. We will then go from there.

As for some great news. Joey has been doing awesome sitting. Last week he broke his record and sat for 20 min 38 sec. He never fell over, we had to lay him down because he was tired. Then today I got the call that he sat for 24 minutes before we laid him down to rest. WHOO HOO!

It is very comforting to know that while small things hold him back, he is still making HUGE progress. 4 years since his accident and he is still improving :)

4 Years in the Making

2011-01-15T15:06:00.000-08:00

4 Years in the Making..................It has taken us 4 years to get to our new normal.

Over our lifetimes we are constantly changing our normal lives. For example; when you go from single to married and then from childless to many children. When you move to a new place or get a new job. Some peoples new normals can take a couple weeks to get use to while other normals can take years. Some people always have easy transitions between normal and others have very difficult transitions. Also everyone has different normals.

4 years ago today our lives changed. It wasn't by choose and came as a surprise. It was not a wanted changed. And it has been a very hard change. Our last transition to our new normal has taken us 4 years to adjust to. So now instead of just the worry of where to live because of school districts, we worry about the house being handicap accessible, does the weather effect Joey's body and attitude, does the school district offer special needs services, what kind of therapy does that city provide. Also do I buy a SUV or Mini Van for the family, instead we think is it wheelchair accessible, how many kids can fit in the car, and will a larger wheelchair fit when Joey grows. We don't just worry about saving for college, we also worry about saving for therapy and equipment that insurance doesn't cover and medical bills. We choose Pediatricians, Orthopedics, Neurologist, Gastrotologist, and Opthamologist based on if they are familiar with special needs kids. We don't just make an annual Peds appt., we make annual Peds, Ortho, Neuro, Gastro and Opthamology appts. We get new AFO's and leg braces every year. We are constantly filling out paper work for CCS, Medi-Cal, IHSS and IEP meetings. We always have diapers to change and special feeding chairs and medical beds, special supplements and food to make. We don't go to baseball or basketball or football practices, we go to therapy.

So with all this said you can see how it has taken us 4 years to transition to our new normal. I can't say time has made it easier, just different. We still have 10x the amount of worries, but we do get to smile a bit more nowadays.

OK now a little about Joey. Joey has come a long way over the last 4 years. He is able to be put in a sitting position and can sit independently from 5-20 minutes. He can bare weight on his legs and hold himself up for a few seconds. He can run in his gait trainer at school and can reach and touch objects when asked. He can eat anything and everything now. He can roll over from his tummy to back and can even say some words. He can see out of his peripheral vision and is getting glasses this year to help with his central vision. He understands everything and even has his own way to let us what he wants.

I still think often of the Joey that was taken from me 4 years ago, but they are great wonderful memories and I am glad I have them.

The following is a video of Joey over the last year. Enjoy!

Tickle Me Elmo and Joey

2011-01-04T21:52:00.000-08:00

For Christmas Joey got a Tickle Me Elmo from a great friend (like a great Aunt to him). Well before his accident his Grandma Marleen searched everywhere and finally found one for him. I was sure he was going to like it, but he HATED it. We would turn it on and he would go over to it and kick it across the room. Well he didn't have enough time to get use to it before his accident 3 weeks later. When he received it for Christmas it choked me up. It choked me up because of the memories it brought back. It choked me up because someone, without reservations, thought about buying him a present and thought hard about what he might want. So thank you so much Auntie Jan and Kevin. I really really appreciate it. I appreciate it more then you know.

Here is a little video of Joey and Tickle Me Elmo. As you watch it you can see he is not quite sure, but then decides he likes it until it bumps him.

Enjoy!

2010 TO 2011 HAPPY NEW YEAR!

2010-12-31T12:53:00.000-08:00

Goodbye 2010 it was nice spending time with you. I will miss you but plan on spending a lot of time with 2011 and hoping I will enjoy the time with 2011 like I did with you.

Here is a quick recap of 2010

Jessica ended 7th grade and started 8th grade. She played her last season of softball and cheered for the Simi Valley Vikings Football. She studied extra hard this last year for her Bat Mitzvah, which was in October. She did an amazing job and we all had a fabulous time at her party. She officially became a teenager. She really grew into a young lady this year. We are super proud of her.

Jack, boy did JAck change. He went from a kid to a pre-teen. He is now in the 5th grade. He has been working very hard advancing through the Krav Maga curriculum. He ended this year as a blue belt. He also played hard in football. He got to play football in the snow in Utah this year and has become very good at Call of Duty video game.

As for Joey, well he has done tons this year. He graduated from pre-school and started kindergarten this year. In April he went to Costa Rica for a second round of Stem Cells. He also had his first ABM treatment. Joey has traveled to Arizona for ABM and has done 2 rounds of intensive Neuro Suit therapy. He had botox in June and was serial casted for 8 weeks to help get his feet and ankles back into a neutral position. He is slowly but steadily progressing. However, we are constantly fighting with his body. If it is not one thing, it is something else. Always stretching his abductors so his legs don't scissor, and continue to bend and flex his ankles so his tendons don't shorten and his feet will go into neutral. Making sure he bares enough weight on his legs so his hips don't dislocate and make sure he spends enough time on his stomach on the floor so he doesn't get scoliosis. Always making sure he gets enough food so we don't have to put the feeding tube back in. These are all the daily concerns. The concerns that will follow us and him his whole life.

With all this said, it now brings us into 2011. Wow I can't believe its 2011.

All my babies are growing up and it is scary. Jack will be 11 and in Jr. High and Jessica will be 14 in high school and Joey will turn 6 going into 1st grade. I will be turning 23 again and hopefully starting nursing school. As for Jeremy he has refused to age anymore and he will be starting his military training again.

I have many many hopes and wishes and dreams for 2011. Of course I have New Years resolutions, I always do and then I like to see how long I can make it through the year. Longest I ever made a New Years resolution last was about 6 months. I am pushing for at least 8 months this year. So I would like to lose weight and get into better shape. I want to get back into Krav Maga shape. I am also going to try not to cuss so much and try to not spend so much unnecessary monies on stuff I really don't need. I plan on cooking dinner more and making the kids sack lunches more for school. I plan on working on my patience when it comes to Jack and being a nicer person when it comes to my husband. Ok I know its a lot, but I have to try at least. It's never to late to start.

In 2011 we have a few trips planned. Jack and I are going to Virginia for a school project. I am taking a quick trip to Hawaii for my cousins wedding, and the whole family will go on a few camping trips. I am also planning to meet my ND moms again on another retreat in October. The kids will go to sleep away camp again. As for Joey well I haven't decided yet where he will travel for therapy.

Making decisions on Joey's therapy is very stressful. Going on our adventures are physically and emotionally exhausting. But once I get past all this it all is worth it in the end. I know I want to do tomatis again, and IMOT and ABM and eventually Stem Cells (but not this year). So I told myself that I will not make plans until the end of January. I need to slowly ease myself into 2011. But I do plan on doing all these except Stem Cells this year (very expensive and need time to save monies).

This for the most part sums up 2010 and 2011.

I wish everyone a Happy, Healthy and Wealthy 2011.

I pray for all those special kids who need healing. I pray you will all see change this year. I pray that everyone sees a little more money in their pockets and a little less stress in their minds.

Give extra HUGS and say extra "I LOVE YOUs" this year.

HAPPY NEW YEAR!

Standing on My Own Two Feet

2010-12-22T09:40:00.000-08:00

I like to make my mom think that I am not progressing and then BAM! I pop this out and she cries and I laugh inside.
Just keeping you on your toes mom.

P.S. My therapist is just balancing my upper body. I'm doing the rest.

YOU ARE NOT SO SPECIAL

2010-12-20T07:35:00.000-08:00

During this time of the year, my biggest pet peeve is that much more prevalent.

The abuse of Handicap parking spaces and handicap access, people that have NO consideration for the handicap.

On Thursday before the rain hit, we took the family to Disneyland. Joey just loves going on the rides, and yes he can go on all of them. Because Joey is in a wheelchair, most of the rides we have to go through the exit which is wheelchair accessible. I have seen tons of groups where the handicap person sat off of the ride, but the rest of the family used the pass. CONSIDERATION PEOPLE.

We also only have one option as far as taking the tram from the parking lot to the park. We have to stand in line with everyone else, but in the handicap line where they can only get 2 wheelchairs on the tram at a time. The rest of the family has to stand in the regular line. I have no real problem with this EXCEPT for the people who think because their baby is sleeping and they don't want to fold there strollers that they can use the ramp area also. They still have to take their kid out of their strollers. So now we wait longer. As my kid is now crying because he constantly needs to be moving to not get sensory overloaded. As I am talking to the tram attended about the people who feel they can abuse the system a man pushing a stroller with his 3 yr old son in it comes up the ramp. The man clearly does not look disabled and the kid does not look disabled, but I don't know their story so I don't judge them. Well the man hears me bitching about the situation and jumps into the conversation and says he totally understands and hates when people take advantage of it. Well of course the man continues to talk and during our 15 minute wait I find out that the man and his kid are not disabled, it is is wife that is and the wife is not even with them. So before we get off the tram, I open my big mouth and say again yeah I really HATE those people that use the wheelchair access because they have a stroller, as I look at his stroller. He did not get the point and said again how he understands. UGHHHHHH!

OK, then there is the handicap parking spots. If you are disabled and have a car, not a van and have the option at the time to park in either of the spots, DO NOT PARK IN THE VAN SPOT! Really people, REALLY! Where are the people with the handicap vans suppose to park. That space is there for a reason. Think people THINK. If you are disabled and are going to walk the mall then obviously you can walk for awhile, then park 2 spots over in a none handicap spot and let someone that really needs the spot use it. I do this all the time because my HANDICAP VAN opens in the back.

If you are driving a person around that is handicap and the person is going to sit in the car and wait for you, then be considerate and DON'T use the handicap spot.

Oh and what about the people that see you pushing a screaming child in a wheelchair with one hand and carrying a tray full of food with the other hand, BUT doesn't offer to open the door for you or move a chair out of the way or even just to help, but instead look at you like you are a horrible mom for letting your child scream. My hands are full, what am I suppose to do. So thank you to the one kind lady and her daughter, out of the hundreds, that offered to help me . I really appreciated it.

As I am in the bathroom with Joey and he is screaming because the sound of the hand drier freaks him out, the lady that is drying her hands sees Joey screaming and looks over and says "whats wrong?" I said that the sound of the hand drier hurts his brain, she goes "AWEEEEEEEE" and continues to dry her hands. There are paper towels right NEXT TO YOU LADY!, but I didn't say it, wanted to, but didn't, she might not have realized that she wasn't as special as she thought.

It is not cool to think you are special and can use the handicap spots or access when you are not handicap, or when you don't really need to use it. I use to be one of these people. Obviously, I am not anymore. My SIL changed my ways a few years ago. She said to me "You are so lucky you can use the handicap spots anytime you want." I said, "You want to trade. I'd rather not be so LUCKY." I guess though that I should feel good because I am lucky that my kid is disabled, that my kid can't talk or play like other kids. WOW, I am LUCKY!

So to quickly reiterate. YOU ARE NOT SPECIAL ENOUGH TO USE THE HANDICAP SPOT OR HANDICAP ACCESS!. If you are handicap yourself, please take a second to think if you really need to use the spot or access.

Keeps Going and Going and Going!

2010-12-10T20:26:00.000-08:00

December has started off with a bang. As soon as Thanksgiving was over and we cleaned up from our camping trip, we moved onto the next event.

On December 2nd, Jeremy, Jack and I where off to Utah so Jack could play football in the snow. We drove to Las Vegas, then Utah and then back to LAs Vegas, then home, all in 4 days. We had a great time and Jack's team won. However, these trips are not so easy to plan, because it is always hard to find someone that can watch Joey. This time though it worked out great, thanks to Ashley and my stepmom.

During my time away Joey called out to me twice, "MOM".

Joey then had a great week at school. We had to meet with the CCS medical doctors for our 6 month evaluation. This is to make sure he still gets his therapy during school. The doctors noted big changes such as his ability to stand unsupported (even if only for a few seconds), and his ability to sit independently for a few minutes. His range of motion in his legs and arms are also much better.

During our time waiting for this appt., I asked Joey for a kiss and ever so softly he said "No". I then said "come on one kiss", again he said "No". So I then just took my kiss. The cool and exciting thing about this is that the "No" sounded perfect and his response time was so quick each time.

As for the rest of the week , on Wednesday and Thursday when I dropped him off at school he called out for me again, "MOM". Of course I have never heard him say it, but once when he was mad.

As for me, well I was holiday shopping and getting ready to have a spa weekend with the ladies. That brings me to today, Friday. Jeremy took the kids to school. I was off to Moorpark College to take a 4 hour test for the nursing program. I was very nervous because I haven't been in school for a long long long time. Good news though, I passed the test and did it in only 2.5 hours. After packing my bags and picking up the kids, Jeremy tells me he is in a lot of pain and has to go to the hospital. Turns out he has several kidney stones. One is making it's way out while the others are laying in wait. So there goes the spa weekend with the ladies. I will have to wait till next year. Boo Hoo, but Jeremy is feeling better, he is on a lot of pain medication.

As for the rest of December, we have a Hanukkah party this weekend, then 2 parties next weekend and a lot of Krav Maga training. Xmas and New Years, and I'm not done shopping yet.

Oh Yeah and be careful when eating Hot Pockets. I had one yesterday and the cheese leaked out and burned the crap out of my chest. I have a quarter size burn with blister on my chest. It really hurts. OOOOOOOOOCH!

GREAT NEWS!

2010-11-30T19:05:00.000-08:00

GREAT NEWS! FAITH IS WALKING!

For those of you that don't know faith, she is my niece.

In April 2008 my sister Suzanne, her daughter Paris, my mom and I flew to Guatemala to welcome my sisters new adopted daughter into our family. We were all very excited to meet Faith. We waited for her for about a year. We sat in a special hotel room on pins and needles waiting for her foster mom to bring her to us. She was 11 moths old. Then the moment came and Faith was put in my sisters arms. I have to say that there was a lot of mixed emotions. We were excited, nervous, confused and had a lot of questions. Like I said Faith was 11 months old. At 11 months old a typical child should have been sitting up on their own, crawling, holding their own bottle, babbling, well Faith was doing none of these. Before I go on about what Faith could do I have to tell you this; When my sister applied to adopt a child she wanted a healthy child. Guatemala is known for having the healthiest kids when adopting out of the USA. She even had a chance to visit Faith when she was about 6 months old.

Ok, so Faith was not a typical child. She was the size of a 2 month old. Could barely hold her head up. She didn't like to be touched, still drank out of a bottle and still woke up numerous times during the night. Loud noise and bright lights were to much for her to handle. She didn't like to touch anything with her hands or feet or mouth. When we got back to the states my sister started on a very similar journey that I was on with Joey. She took Faith to many doctors to figure out what was going on with her. Turns out she is just severely delayed. Maybe from the RSV she got when she was 8 months old, or maybe malnutrition during birth or during the time she was in foster care. We will never really know. My sister began taking her to therapies after therapies. She quickly began to improve.

Over the last 2 1/2 yrs Faith learned to sit up by herself, crawl, play with toys, eat baby food, eat regular food, she began to touch with her hands, and she even says a few words. She went from a 2 month old level to about a 1 yr old level. I know that this doesn't seem like much, BUT it is HUGE. Of course like any mother you want your child to have the best quality of life and want your child to be as typical as possible. For Suzanne, she wants her daughter to be able to walk. Well today she did. She held onto a walker by herself (this in itself is huge because she has a major sensory disorder), she bared weight on her feet and legs ( again huge because of the sensory disorder and the dislike of touching things), then she began to walk all over her therapy center. This is the first step of her walking independently. She is on her way. Way to go Faith! You can see a video of Faith walking by either going to my sisters or my facebook page.

So to slightly change the subject, I had a dream last night. The dream was about watching Joey take his first steps in a walker like the one Faith was using. I have had this dream before, but what was different this time is that I could not see Joey's face in my dream. So once Suzanne told me about Faith walking I realized that the dream I had was not about Joey, it was Faith walking for the first time. Of course right away I got sad for myself, BECAUSE I want to know that Joey will walk like Faith did. BUT one thing I have learned on this journey is PATIENCE.

All of us parents with special needs kids have once said in our child's lifetime " I wish my child could do.............". Then our child does it and as time passes you kind of forget the time when your child couldn't do it and you wish for something else. During all this time of waiting and wishing and praying, we learn patience, we learn understanding, we learn acceptance, we learn about hard work, we learn appreciation of life and of others and we learn more then most people learn in a lifetime. We learn that we might not see the big miracles that we are wishing for, but will see the other miracles that lie underneath, the miracles that are not visible to the eye.

So even though I am still sad that it wasn't Joey in my dream, I am overjoyed that my niece is starting to walk, that her quality of life has just improved dramatically. I am glad that one day my sister will think back to the time before Faith could walk and that she will barely remember those times.

Keep going Faith, and going, and going, and going! You have come an amazingly long way. We love you so much.

Faith when she was handed to my sister.

Faith today

A Happy Thanksgiving

2010-11-28T21:01:00.000-08:00

Happy Belated Thanksgiving!

Again this year we went camping for Thanksgiving. This is our 7th year camping over Thanksgiving. We go with about 6 other families, these are our best friends. We have a fantastic time.

Normally when we go camping we do not take Joey with us. He doesn't like it much and it doesn't give us time to relax. Joey is like a 6 month old baby. He has to be on a schedule, diapers changed often and fed every few hours. However we do take him every Thanksgiving. He was actually much better this Thanksgiving compared to the last 3 years since his accident.

The holidays are still hard for me. As time goes by it gets easier, but it still stings. It is hard to see the other little boys his age running and playing. It is hard to see these little boys riding their bikes and climbing trees and watching their favorite movies or playing games with the other kids. It is hard to hear the other parents talk about how their lives are going to get easier as their kids get older and they don't have to chase after them or watch them as much or make their food for them, etc. etc. etc. It is hard knowing that as their kids get older and become more independent that I will ALWAYS have that child that will depend on me 100% for EVERYTHING.

So then I start dreaming about what life would be like to be one of those moms, to see her child playing and riding their bikes, BUT I quickly shake it out of my head and begin to think about what I can do for Joey. I want Joey to be able to take a bike ride. The bike to do that costs $4500. Ok, then what about a bike trailer to take him on a ride, $800. Then my mind starts thinking about the therapies that I would like to do with Joey, more Stem Cell Therapy $30,000 and Neuro Therapy $8000. Maybe even more ABM, $1500. Then of course I start thinking about the things I would like to get for Joey, a new feeding chair (he has outgrown his current one) $600, a talker (not sure what these cost) and so many other adaptive toys.

So by this point my mind is going crazy with everything involving Joey, (school, daycare, therapy, adaptive toys and many many more things). So I have decided that today is the last time I am going to think about all this until after the Holidays when I have more time to be rational about it all.

So Happy Belated Thanksgiving to everyone. Hope you all had a great time. Be safe over the Holidays.

Blessings Always.

Normal

2010-11-16T21:05:00.000-08:00

I have thought all day about what to title this blog post. I have even thought about how to start and what exactly to say. I finally figured it out.

NORMAL

WHAT IS NORMAL? Who is living a normal life?

I am living a NORMAL life.

For the last 3 1/2 years since Joey's accident, I have constantly said "I wish my life was normal". Well after this weekend I realized my life is normal. This last Friday I got on a plane with Jill and Peggy. Jill is mom to Seth who had his near-drowning 8yrs ago. Peggy is Jill's mommy. We flew to Seattle, WA to meet up with and spend the weekend with 9 other mommies who have children that have had a near-drowning accident. 12 of us total.

Over the last 3 1/2 yrs even though I have talked to many different mommies through email or more recently through facebook, you still feel most days that you are alone on your journey. I have always called it a journey because I have never felt like it was a normal life to live. WELL, this weekend changed me a lot. For the first time ever in the last 3 1/2 yrs I have felt normal. I sat in this HUGE house with 11 other mommies and we laughed and laughed and laughed and cried, then laughed some more. We talked about our lives, our feelings, our struggles and our happy times, we prayed and sang and cheered, we held each other and just sat and listened. Even though all our kids are at different levels of healing and different levels of disability and all our stories of how we got here are somewhat different, we all felt the same. We all have experienced the same emotions. No one judged the other. You never had to explain your life. We all understood. We all were on the same path, the same journey, the same NORMAL. Being with all these mommies I realized that we lived normal lives. Normal because we have all been were the other has been. Normal because it was comfortable. Normal because we all understood each other. Having the 12 of us women in the same room made my life NORMAL.

I want to send out a few special thank yous; Thank you to Sue S. who organized and planned our whole weekend and Thank you to Tiffany V. for letting us stay at her house. Also Thank you to Amy S.(Sue's daughter) and Yoli (Sue's Best Friend) for cooking and cleaning for us all weekend. And Thank you to all of Sue's friends who volunteered their time and donated monies to make our retreat all it was.

I will miss you all, but will see you next year (hopefully). This weekend really changed me more then I ever imagined. Thank You Mommies. I LOVE YOU!

Jessica's Bat Mitzvah

2010-10-18T19:28:00.000-07:00

This Saturday my oldest turned 13 yrs old. She had her BAt Mitzvah. She did a fabulous job with her service in the morning and then partied like a rock star that evening. Her are some pictures.

Joey and Jessica

The decorated room. Well half of i.

Me, Jessica and her friends. I'm the cute blonde in the middle. J/K Ok so that cute blonde is Jessica.

How Much Does Joey Understand?

2010-10-15T07:53:00.001-07:00

This is the BIG question. How much does Joey understand? I know I have talked about this before, but many of the days we forget.

Everyday Joey does things (very small small things) that show us he understands what we ask of him. These things are so small, yet very consistent that sometimes we question ourselves about how much he really understands. Then every once in awhile he really impresses us with something new or something BIG.

He did this yesterday. When I went to pick him up from school, the teacher had a talker in her hand. She said to me, "Joey has something he would like to say to you." The teacher puts the talker in front of Joey and says to Joey, "go ahead tell her". He then lifted his arm and hit the button. The talker said, "Hello Mommy". He was so proud of himself that he started laughing and then kept hitting the button. Some of you might say "SO, he hit a button". Well normally he would not reach out and touch a button unless you said, "Joey can you reach, reach and touch the button, come on Joey reach, touch". I brought tears to my eyes, reminding me that Joey is there and does have things to say.

Well that was just the start of him impressing me. During his behavioral therapy he impressed me more. We had him in his gait trainer. We are trying to encourage him to walk, but not just walk, walk on command. So at first when we put him in he would take a couple steps. We would reward him with a bit of pudding. Then we started to ask him to take a certain amount of steps (ie. 2 or 4). He would then take the asked amount of steps and stop, then open his mouth and say "UMMMMM", for more pudding. We did this numerous times. Then we decided to step it up a bit. We said if he could walk all the way across the room then he could be done walking and could finish his pudding. So what did he do, he turned his walker around and moved his feet as fast as he could all the way across the room. He reached the end and again stopped, opened his mouth and said "UMMMMM".

I think he likes to keep me on my toes. He wants me to think that he doesn't know much and then BAM! Just reminding me that he is a typical 5yr old inside that brain of his.

I Love You my little man.

New Normal

2010-10-12T21:25:00.000-07:00

I am sitting here tonight watching the 33 miners being rescued and boy does it bring many emotions.

When the miners first got trapped and for the first week or so we all sat and watched. We prayed for them and their families. Then we moved on. We somewhat forgot about them because we had our own lives to live. Many of us probably didn't even think what happened to them. Possibly just assumed they were rescued or maybe forgot about them all together. I was one of those people. I forgot about them. Didn't even cross my mind. I moved on with my own life with my own tragedies.

I remember when Joey had his accident. That first day and even that first month everyone was around. It seemed to me that every ones lives around me stopped too. As the second month passed, then the third and fourth, then the first year went by I noticed others around me moved on with their lives. I didn't understand. Why did their lives move on the same way, but mine didn't. Inside I was soooooo mad at everyone. Mad that they got to continue their lives the way they were before my sons accident and my life was still at a stand still. WHY??????

Well I see now. It has been almost four years since Joey's accident. Yeah I know, FOUR YEARS have gone by. My life has found a new normal. It took about 2 years for me to finally move on in life. It was a very painful 2 yrs and most of the time I felt alone. There seemed to be only a small group of mothers who went on the same journey with me who understood.

Today as I sit here and watch the miners being rescued, I watched them hug their families and feel so relieved. Relieved that they get to find a new normal in their lives. AND it makes me feel angry with myself that I was one of those people that moved on with my life at the beginning. Makes me angry that I was mad and upset at the people around me 4 yrs ago that moved on with my life.

BUT today I understand and I am sorry. I'm sorry I don't stop more often and think about others. I am sorry to those that always supported me, sorry to myself for how I felt.

I pray all the miners make it out safe and I pray that it doesn't take to long to find their new normal.

The GOING On's.

2010-10-04T09:22:00.000-07:00

Where do I begin without repeating myself too much, ummmmmmmmmmmm?

It has been 5 weeks since school has started for Joey. The first week was rough, new teacher, new aid, new classroom, but now 5 weeks into school Joey is doing great. I had a meeting with Joey's teacher this last week to make sure he was getting what he needed in school. I showed the teacher his ipad, which they are going to start to use. The teacher is also going to ask the school district to get one for Joey in class. He is making a lot of friends and having a great time. He also went on his first field trip. He went to the fair and he took his first bus ride.

Joey also started a new therapy clinic. His therapist is great. After 6 weeks of working with him, she has got it down. His ability to sit with no support is progressing nicely. He sits for an average of 2.5-3 minutes when you just sit him with no stretching or prompts, however when he is stretched and prepared, he can sit any where from 7, 10, 14, to 18 minutes. At therapy last week he sat on a platform swing for 3.5 minutes without falling over. The swing was moving the whole time. He is also starting to really bare weight through his upper arms and elbows. He is talking a lot, no real words besides 'I go', but you can ask him a question and he will babble away. He really loves his music, he wants it playing all the time, he will get fussy if it is not on.

Besides the PT he receives at the new clinic and the therapy he gets at school and behavioral therapy at home he is not receiving any other types of therapy right now. We are taking a break for traveling everywhere. It has been good for the whole family.

As for the rest of us; Jack has been playing football and Jessica cheerleading. Jessica has also been studying really hard for her Bat Mitzvah in two weeks. Both kids have been doing really great in school. Jeremy is working hard and I am finally getting time to do stuff without the kids.

I have posted some pictures and video's here, but will also post more on the following website; www.dropshots.com/fightingjoey

De-Stressing! Or Trying at Least.

2010-09-03T12:14:00.000-07:00

De-stressing!!! WHAT, really, what was I thinking.

School has started and we are 1 1/2 weeks into in. Joey is doing great. They are still getting use to him and he is still getting use to them, but things are going good. Next week I plan on visiting and talking to his therapist and the teacher about the amount of time he is in his wheelchair. I think they have him in it to much. That WILL change.

Joey has started a new therapy clinic this week. It is just physical therapy. He has a new therapist. I know it will take a few weeks to get use to each other, but I'm inpatient and can't wait. He will go 2x a week for an hour. We are no longer going to the NAPA Center on a regular bases because of school and the drive. I already miss that place. It makes me nervous that Joey will regress not going to therapist that know what he needs. I am going to try and take him there on days off of school and he will also continue doing intensive therapy there when we can.

I told myself that I was going to give myself and Joey a break on doing extra therapies. I thought that by giving us a break that it would give me a chance to de-stress a little and relax. WRONG! All I can think about is what other therapies I should put Joey in. What therapies does he need to help him? My mind is nervous that by taking a break Joey will regress. I continuously say to myself, "As long as he doesn't regress I will be happy", however it is so hard to keep convincing myself of that. So in turn, I am not de-stressing, I think I have only made it worse. With that being said, I am looking into Occupational therapy and massage therapy for Joey.

Another thing I struggle with is his progress and other kids progress. I know and boy do I know that ALL kids are different. I also know that I should be happy that Joey can do this or that because other kids can't, but deep down inside I'm not 100% happy. I want Joey do be able to see and track. I want him to be able to reach out and use his arms to read and play games on his ipad and feed himself and point to things and so on and so on. I just want the best quality of life for him.

OK, I'm done being depressed. I just had to get it out.

Now on to the things Joey CAN do. He can sit for an average of 3.5 minutes, but has sat for 10-18 minutes over a dozen times. He still eats like a horse and he walks great in his gait trainer. His eyesight has improved dramatically. I am going to take him to the Center for the Partial Blind to get therapy for his vision. Oh and not to forget, but Joey has the best smiles and the best laughs.

1st Day of School

2010-08-25T21:27:00.000-07:00

So I know I wrote earlier about the 1st day of school, but now that we are at the end of the day I have more to tell.

All went pretty well dropping all the kids off this morning. I was able to go to the gym and get some work done. YEAH! At 1:00 I went to get Joey. I could hear him crying in his class room. He was screaming. He screamed in the car the whole way home and screamed in the house. It took me 30 minutes to calm him done. The teacher said he wasn't very happy all day and he didn't want to eat. WHAT? Joey always wants to eat. That's his favorite thing to do. So I think I figured it out. He had snack around 10 and then lunch was at 11:30, so he might not have been so hungry, also it was 102 degrees today. His class room was also very loud and crazy with the new kids and the staff getting organized. When I got him home he drank over 8oz of water. He usually doesn't drink this much in a 30 minute period. So he was a bit thirsty. Then I fed him the rest of his lunch. He couldn't eat fast enough. So I think I am going to stay at school most of the day to help get them familiar with Joey.

OK so my stress level only built from this point on. I had to cancel his HBOT today because I had to go into work last minute (one of my employees called in). Well I didn't have a babysitter today so my daughter had to deal with the fussy boy. Then of course I had to come home and make dinner, lunches and clean up the house and help with first day homework. Boy do I HATE homework! So because I missed his HBOT today it means I have to continue next week. I was really wanting to be done this week. It is very exhausting. On top of this all, my handicap van is in the shop and I had to take apart his wheelchair each time I put him in and out of the car. Uhgggggggggg!

Now all kids are sleeping and I'm about to turn the lights off. Good Night everyone.

2010-08-25T10:44:00.000-07:00

WOW! Where did the summer go.

I survived another summer.

Originally this summer was suppose to be very relaxing and none stressful. Well that's not how it ended up working out. We went on several trips this year, some with Joey and some without. We visited family in Idaho, went to Lake Havasu, then off to Arizona for therapy while the kids were at sleep away camp, and took a Las Vegas trip. In August the kids started football and cheer leading, while I was off taking Joey to HBOT. This is actually our last week of HBOT. We will have completed 30 dives which brings us to a total of 239 dives.

Jack and Joey sleeping in the car.

Joey's First Day of Kindergarten

Today is a great day. The kids started school. Jessica is an 8th grader, Jack is in 5th grade and Joey has started kindergarten. I walked Joey into school (ok wheeled him in). Gave all the instructions to the teacher and his aid. Then I went searching the school for his gait trainer and stander that should have been in by now. Back in June the school ordered him the gait trainer and walker and I also order him a gait trainer for home. Well when I went searching the school I found the gait trainer for home. The gait trainer for school is still in the school warehouse (go figure right!) and we are still waiting on the stander. So in the meantime he is using the one from home. His preschool teacher was in his class also this morning filling in the teacher and aid about Joey. I just loved his preschool teacher, wish she could be his teacher in kindergarten also. I then gave my big boy a big kiss and off to the gym I went.

FREEDOM!

My new license plate

Busy Summer!

2010-08-09T17:15:00.000-07:00

Every year I say to myself, "I can't wait for SUMMMMMMEEEEERRRRR". I love summer, however I think I forget that summer is just as busy as the rest for the year, but with no break from the kids.

Our summer started out with a 20 hr drive to Idaho for a week with me, the boys and my mother-in-law. Then home for a week and then off to Lake Havasu with the family and great friends. Joey stayed home for this trip. We came home from Lake Havasu to clean clothes and then off we go again. The kids went to sleep away camp for 2 and 3 weeks and I took Joey to Arizona for a week of ABM therapy. Arizona was a great trip. I was there with 2 other wonderful families. The therapy is also an amazing therapy. As for Joey though I have mix feelings. ABM reprograms the central nervous system, muscular and skeletal system. So it makes Joey irritable. Joey's ATNR becomes worse, he stops eating and his sleep changes. It took about 2 weeks for his brain to relax and for him to get back on a normal schedule with everything. It was miserable for about 1 week of this transition. I did notice though that the ABM made him more cognitively aware and his eyes seem to focus more. So I am conflicted as to whether we do this again or not.

We returned on a Thursday from Arizona to start his 40 sessions of HBOT. We drive 45 minutes away 6 days a week until we complete 40 session. Some of the days we then also have to head an hour and a half in the opposite direction after his HBOT to do physical therapy, and then back to HBOT. I'm exhausted just thinking about it. HBOT is not a relaxing therapy as one might think it to be. Joey moves and squirms the whole time. He fusses and cries and just wants to be done. Thank god my babysitter Ashley takes him once a week or so to HBOT.

Now the other children are home from camp and chaos has begun again. Football practices and cheer practices, therapy, registration for Kindergarten and doctors appointments. Work meetings, dog trainers, lost bunnies, amusement parks, LAS VEGAS BABY! and bat mitzvah planning. Dress shopping, school shopping, decisions on school for me, wow, it just goes on and on and on.

So to sum things up, amongst our busy summer schedules, Joey is still making progress. His eyes are coming around even more and he is cognitively more aware. He laughs and talks all day long.

Dreaming of a Better Day

2010-07-27T21:27:00.000-07:00

I guess you don't realize how good you have it until it starts to go away.

I'm in a rut. Well I guess that is what you would call it.

Joey has a reflex called ATNR that affects his whole body. The definition of ATNR is:

The asymmetrical tonic neck reflex (ATNR) is a primitive reflex found in newborn humans, but normally vanishes by the child's first birthday. It is also known as the "fencing reflex" because of the characteristic position of the infant's arms and head, which resembles that of a classically trained fencer. When the face is turned to one side, the arm and leg on the side to which the face is turned extend and the arm and leg on the opposite side bend. In children with cerebral palsy, the reflexes may persist and even be more pronounced. As abnormal reflexes, both the ATNR and the TLR can cause problems for the growing child. The ATNR and TLR both hinder functional activities such as rolling, bringing the hands together, or even bringing the hands to the mouth. Over time, both the ATNR and TLR can cause serious damage to the growing child's joints and bones. The ATNR can cause the spine to curve (scoliosis). Both the ATNR and TLR can cause the head of the thighbone to partially slip out (subluxation) or completely move out of the hip socket (dislocation). When abnormal reflexes persist in a child, early intervention involving extensive physical therapy can be beneficial.

Ok, now you know what I am up against. Over the years since his accident, his ATNR has gotten so much better. It was only affecting him when he was really really mad, he could become irritated, but it wouldn't affect him. In Arizona during ABM, he starting showing the ATNR all the time. Even with very slight irritability. He goes into ATNR almost 50% of his day now. He is in slight pain when he goes into ATNR, it twiks his whole body. He also has a startle reflex. this has been more persistent, but not to bad. Now that we are home he is still having very bad bouts with his ATNR. He is also not eating much. If any of you have seen Joey eat you would understand that eating is Joey's favorite activity. I am having to force the food down him during lunch and sometimes during breakfast. Ok and to top it off he has decided to change his bed time. He use to go to bed at 8:00p, you just laid him down and night night he went. If it was up to him, he would stay awake till midnight. I have been putting him down between 9-10 and letting him cry. He will scream bloody murder from 30-60 minutes before he falls asleep. This is a heart breaker for me, but it is the only way he will fall asleep.

So some people have suggested that maybe Joey is sick or something. No that is not the case. The ABM reprograms his nervous system and messes with the brain. His brain just has to integrate all the information he got from the ABM sessions. Last time we did ABM it took a few weeks for him to get back to normal. The good thing about the ABM is that is eyesight is much better. He is also cognitively better.

All this does not make for a happy mommy. It is very hard to see your child not happy. I want to head back to the gym and want to diet again. I want to go meet my friends and talk on the phone. I want Joey to just be happy and not irritated all the time. So what do I do when I'm in a rut, I EAT! I can't help it food loves me, I love food. I get every depressed. Guess I just have to ride it out and know that this is not the worst he has ever been.

Currently we are doing HBOT. We head out to Ventura, a 45 min drive, everyday, sometime 2x a day. Right now I'm ok with it, I'm sure I will so been tired of the drive soon enough. My babysitter is going to help and take him some of the days to give me a break.

I also miss my other 2 kids. They are at sleep away camp and will be home on Saturday.

Well enough of my moaning and groaning. I am going to sleep now and going to dream of a better day for Joey and I tomorrow.

Anat Baniel Method (ABM)

2010-07-24T07:48:00.000-07:00

We are finally home. Seems like I haven't been home in weeks. During the week of July 17th, I took Joey to Arizona for ABM therapy. My friend Pam from Colorado joined us with her whole gang, 1 princess and 3 boys. We had a great time hanging out. Joey went swimming a lot and got to play with the boys, which he enjoyed tremendously. I also met a new friend from Yuma, AZ, Michelle and her son DJ, who has Autism. I learned a lot about autism this week. Most important thing I learned is not to refer to the child has being Autistic, but to say he has Autism. (hee hee hee, inside joke, love ya Michelle)

Anyways, Joey received 2, 1 hour sessions of ABM a day for 5 days. At first I didn't notice any changes, but over the last couple days I noticed his eyes are focusing more. We now take a week break of physical therapy, start HBOT on Monday for 40 sessions and then school will start on the 25th of August. After about 6 weeks if I see significant changes, I will plan another trip to AZ, probably around x-mas break.

Pam and I made a video of one of our days in Arizona, I guess you can say it is a vlog. Here is our vlog of 1 day in Arizona.

ABM Vlog from makenziesmiracle on Vimeo.

My other 2 kids are at sleep away camp for one more week, so it will be nice and quite in the house, with very little mess. Whoo Hoo!

OK, time to start my day. Talk to you soon.

Summer Vacation

2010-07-08T07:41:00.001-07:00

I thought vacations were suppose to be relaxing. Well I'm sure they are, however I'm not on vacation yet, so the stress level and craziness is high.

On Saturday we leave for 5 days to Lake Havasu, we get back on Thursday and then Joey and I leave on Saturday for AZ and the kids leave for sleep away camp on Sunday. I have a lot of preparing to do. Not only do I need to finish packing the RV and head to the grocery store, Joey has therapy, Jessica has tutoring and Ortho appt. and Jack has uniform fitting for football. Then Jessica and Jack both have a doctors appt. next Friday and I also have to take my minivan in for repairs. Amongst all this I have to figure out what is going on with the invitations for Jessica's Bat Mitzvah, finish getting address's ready, finish her montage and sign in book and do a lot of work for our kids program at work. Oh and I can't forget about getting the Rx and insurance info and therapy evaluations to the new therapy clinic for Joey. WOW I'm exhausted just thinking about it.

OK enough about my craziness. As for Joey, he sure has changed a lot over the last 3.5 years. He has grown a ton and is the size of an average 5 year old. He moves constantly and babbles non-stop. His sleeping patterns are always changing and not for the better either. He has decided now not to go to bed till about 10:30 pm and wants to fall asleep in daddy's arms. What am I going to do when Im in AZ and daddy is not with us.However his appetite is the same. He weighs about 37 lbs now. His casts are off and his braces are on. His feet look great. Insurance and Medi-cal have finally approved Joey's gait trainer (walker), so now he will have 2 of them. One at school and one at home. I am very excited about this. He can walk up and down the street now. I can take him to the mall so he can walk. WHOO HOO!

I bought Joey a cool floaty for the pool this summer. It goes around his neck to keep his head above water. He is able to kick and use his arms to swim. I don't even have to hold onto him. He loves it. We spent about an hour in the pool on 4th of July. He was so relaxed. I love it.

As for new changes in Joey since Costa Rica stem cell, weeeeellllllll? I have seen improvements, mostly with his mouth and his sucking. His body is much looser and his arms are more functional. I don't think he has hit a plateau yet in improving from the CR SC, but the improvements are so little at this point, it is hard to say what I see. Overall his body feels and looks awesome. In August Joey will start his HBOT. This will help the stem cells function. He will also start kindergarten and a new therapy clinic. This I am nervous about, the new therapy clinic. We have been with the same 3 therapists for the last 2 years and they are incredible with Joey. I just love how they work with him. They know what his needs are for each particular day and they know what he needs to improve. It will take the new clinic months to figure this out. I will however save money and miles with not have to drive so far for therapy anymore. So there is a plus in all this.

Well it's time to get up and start my day. Have a great day everyone.

Forgetting What to Say

2010-07-01T22:24:00.000-07:00

Where do I start. I feel that so much has gone on in the last couple days with Joey, but for some reason I have forgotten what I wanted to write about.

Lets see. Sunday we had a little bday party for him. That went great. He got a lot of nice gifts. Monday he got his casts off and his new braces on. On Tuesday Joey went back to therapy after missing a week due to our vacation in Idaho. Usually he is really stiff and it takes us a week of PT to get him back to normal, but that is not the case this time. He is very loose, way looser then ever before. Today I took the boys to the movies to see Toy Story 3. Joey loved it. He talked the whole time and ate a half bag of popcorn and m n m's. Joey is also in summer school/camp 3 days a week for 4 weeks. He really loves playing with his friends. Tomorrow Joey has 2 dr. appts. One for HBOT and the other for his braces.

Oh I know now what I wanted to say. I got a call from the mobility company. They finally got full approval from my insurance and medi-cal to order his gait trainer. We will place the order next week and it takes about 6 weeks to get it. I am so excited about this.

On Sunday we are going to a friends house for the 4th. I am very excited because they have a pool and I got Joey a new floatation device. I can't wait to use it.

Ok well I know I have more to say, but I'm drawing a blank. I'll blog more when I remember what it is.

HAPPY 4TH OF JULY!

HAPPY 5TH BIRTHDAY JOEY!

2010-06-28T07:36:00.000-07:00

5 years ago today I gave birth to my third child, second son, Joseph Andrew Stafford. Today that baby has turned into a big boy. He is 5 yrs old today. Were has the time gone. 5, he can't be 5, really he is 5, OMG he's 5! He even looks 5. I think he grew over night knowing he was turning 5 today.

So much has happened in the last 5 yrs. He learned to talk twice and sit up twice, laugh and smile twice. He is learning to walk for the second time and learning to give kisses and hugs twice again. He has gained weight and lost weight. He has grown in so many ways. Even though he is a big boy now, he will always be my baby. Ok so I'm done dealing with diapers and feedings, but if that is what is keeping him my baby I'll take it.

Yesterday we had a family birthday party for Joey. We had hamburgers and hot dogs and a chocolate toy story bday cake. Today will be his first day of summer school/ camp. He will go for the next 3 weeks on Mon./Wed./Fri. half days. Ok, so im using this as a little babysitting time, but he does love all the kids and laughter and music.

HAPPY BIRTHDAY JOEY! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY DEAR JOEY! HAPPY BIRTHDAY TO YOU!

Joey's Bday Party

2010-06-27T21:21:00.000-07:00

Today we had Joey's B-day Party. It was just a family thing. It turned out great. All his grandparents came, his aunts and uncles and all the cousins. He had a chocolate Toy Story b-day cake, and got some nice presents. Thanks you to all my family for coming and celebrating today with us.

Also today my 8 yr old nephew had his championship all star game for baseball. He told his mom earlier today that he was playing the 2 games today for his cousin Joey. Well he won those games and received a 1st place trophy. He gave his trophy to Joey. He brought tears to my eyes.

Anyways, I'm to tired to write much so I'll post it in pictures.

Blue Rose

2010-06-23T07:07:00.000-07:00

So every once in awhile as I am reading through my friends blogs I read something truly inspirational. Sometimes what I read are things my friends have wrote or are things they got from other people. Either way they are amazing and touch my heart.

Here is one of those stories.

Blue Rose

Having four visiting family members, the wife was very busy, so I
offered to go to the store for her to get some needed items, which included
light bulbs, paper towels, trash bags, detergent, and Clorox. So off I
went.

I scurried around the store, gathered up my goodies, and headed for
the checkout counter, only to be blocked in the narrow aisle by a young man
who appeared to be about sixteen-years-old. I wasn't in a hurry, so I
patiently waited for the boy to realize that I was there. This was when he
waved his hands excitedly in the air and declared in a loud voice, "Mommy,
I'm over here."

It was obvious now, he was mentally challenged, and also startled as
he turned and saw me standing so close to him, waiting to squeeze by. His
eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's
your name?"

"My name is Denny and I'm shopping with my mother," he responded
proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but
my name is Steve."

"Steve, like Stevarino?" he asked.

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over
from the next aisle.. "You're fifteen-years-old Denny; now be a good boy
and let the man pass by."

I acknowledged her and continued to talk to Denny for several more
minutes about summer, bicycles, and school. I watched his brown eyes dance
with excitement because he was the center of someone's attention. He then
abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking
the time to talk with her son. She told me that most people wouldn't even
look at him, much less talk to him. I told her that it was my pleasure and
then I said something I have no idea where it came from, other than by the
prompting of the Holy Spirit.

I told her that there are plenty of red, yellow, and pink roses in
God's Garden; however, "Blue Roses" are very rare and should be appreciated
for their beauty and distinctiveness. You see, Denny is a Blue Rose and if
someone doesn't stop and smell that rose with their heart and touch that
rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked,
"Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion but I sure
love living in God's garden."

She reached out, squeezed my hand, and said, "God bless you!" and then
I had tears in my eyes.

May I suggest that the next time you see a BLUE ROSE, don't turn your
head and walk off. Take the time to smile and say Hello. Why? Because, by
the grace of GOD, this mother or father could be you. This could be your
child, grandchild, niece, or nephew. What a difference a moment can mean to
that person or their family.

From an old dandelion!

Live simply. Love generously. Care deeply. Speak kindly. Leave the
rest to God.

"People will forget what you said, People will forget what you did,
but people will never forget how you made them feel."lue Rose

Continues to Amaze Me!

2010-06-21T06:21:00.000-07:00

On Friday we left Los Angeles to head to Sacramento, our layover stop to Idaho. The trip took us about 8 hrs. We had to stop every 2 hrs to feed Joey and gas the car up. On one of our stops for lunch, Joey decided to amaze me. We went to a restaurant to sit and eat. I put one of those thick, plastic, bendy straws that come in the kids drinks in Joey's hand. His hand was resting on the table when I put the straw in his hand. Right away he bent his arm and brought the straw to his mouth. He continued for about 10 minutes sucking and moving the straw around his lips. He had the straw in his mouth most of the time. His arm was bent the whole time and not resting on anything. He was really great to watch. When he was done sucking on the straw, he moved his hand back to the table and put the straw back on the table. WOW! Pretty amazing. Just when I think that I have seen all of what Joey is going to regain, he amazes me more.

When we got to Sacramento, we head to my aunts house for dinner and then to the hotel for bed. Uncle Dan, cooked us a great dinner. Thanks Nana and Uncle Dan. We started our second leg of the trip at my aunts house for Dan McMuffins. yum, yum.

Our drive from Sacramento to Idaho took us 10.5 hrs. And again we had to stop every 2 hrs for Joey. We got to Idaho with no complications. Joey went to bed about 9:30 at night on our first night in Idaho. This is late for him, but it stays light outside till that time so it is hard to put him to sleep earlier. Also when we are on vacation I have to lay with him to put him to sleep. This is not the norm, so my sleep has been crappy.

We are visiting all the restaurants on man vs. food, hee hee hee and having a great time with my sister-in-law and my niece and nephews. It is definitely a bit crazy in the house with 4 boys running a muck. However they all love Joey and are very caring.

We have 3 more days here and then we head home. Here is a picture of Joey and his straw.

Life!

2010-06-15T08:08:00.000-07:00

The PLEDGE OF ALLIGIANCE

My Team

My Friends really like me.

Getting my trophy and year book and thanking the firemen.

My TROPHY

Life is filled with so many twists and turns. Just when you think things are going to settle down and your life and mind are not going to be so stressed and chaotic, there is a twist in the road.

On Friday Joey finished his 3 weeks of IMOT (Intensive Model of therapy). He did a great job. He is so much stronger. He did the whole 3 weeks with his casts on. Speaking of cast, 2 weeks ago when we went in to get them changed, the dr. put on removable cast. These are just regular cast that were cut down the sides and ace bandaged closed. Friday afternoon I had to take Joey to get fitted for his new AFO's (braces). When we were done and his cast were put back on they just didnt fit right. By Saturday morning he wiggled out of them. So I dedcided to put on his old braces. These are just a little small, but didn't look to bad or seem to bother him. Well I was wrong, by 2 oclock in the afternoon he began screaming and pulling his legs in. This is what he does when he has to go to the bathroom. So I assumed he had to go o the bathroom. He cried all day and most of the night. At about 5am Sunday morning I decided to put him in the tub to help relieve his so called tummy pain. As soon as I took his braces off all was well. He took a bath and then was a happy camper. It was a very frustrating day. It hurts when you can't figure out why your child is in pain.

So with that all being said, Joey is no longer wearing his braces or casts. His feet are already starting to point again. We don't get his new AFO's until 2 weeks. I take him back to the dr. tomorrow for new casts possibly. I just hope we don't lose all that we have tried so hard to gain with his feet. I keep stretching and stretching and stretching him. Please PRAY that is all works out the way we need it to be.

Also on Saturday before his crying began, he had his allstar game and closing ceremonies for baseball. The challengers league is such a great league. I love that my son can play baseball like other kids his age. There are so many types of kids with disabilities in the league. It is the most none competetive, hard working, dedicated league of baseball anywhere. The Simi Valley Youth baseball league along with the Amanda McPherson foundation is trying to raise monies to build the challengers their own field. I cant wait for him to play again next year. He had a great time.

I have some great news. I talked to the HBOT clinic to schedule his appt's. They are only charging me $100 a session. This saves me a $1000. Whoo HOoo! We start in Aug.

Ok thats about it for now.

End of Suit Therapy

2010-06-11T20:15:00.000-07:00

Today was the last day of Joey's three week intensive suit therapy. Joey did great. He had his casts on for the whole time and still kicked butt. He is holding his head up so much better now and is bearing weight through his arms when he sits all the time. We also did Vital Stim therapy which helped him to close his mouth around the spoon/fork when fed. He also began drink more from a straw and sippy cup. He did a really great job.

I posted a couple of videos on www.dropshots.com/fightingjoey

I did not take any pictures this time. I have tons and tons of pictures of Joey and his suit therapy.

Our next therapy adventure is to Phoenix, AZ for ABM therapy. We will be going in July for a week. I am very excited to see the results from the ABM.

Today after his graduation from suit therapy he got fitted for his braces (DAFO's). I am very excited to get them. They will be ready in 2 weeks. At this time we can throw away his casts. WHOO HOO!

We thats my little update for now. I'm tired and going to bed.

Night!

Let Summer Begin

2010-06-07T09:11:00.000-07:00

June has started off very busy.

For Memorial Weekend we went away with our group of friends. We had a great time. We did a little antique shopping and played a lot of Volleyball. However, Joey doesn't make it very relaxing. He keeps us busy. He is not to fond of being away from home.

Then this last week we have been busy getting ready for our garage sale. We had a very successful garage sale over the weekend. I would like to send out a BIG THANK YOU to a lot of people; first to all my wonderful friends and family and even strangers that donated items to our garage sale, then special thanks to my mom, sister, dad and step mom for helping with the setup and break down of the garage sale. I couldn't have done it with out you guys. Thanks to Leah and Paige, Carey, Brandon and Kanan, Taylor's Grandma and Grandpa, my father in law Stan for helping with the selling of items at the sale, my daughter Jessica and her friend Madison for selling the lemonade and rice krispie treats and for handling the cash register, my son Jack and his friend Austin for the security and my wonderful husband for supporting me and helping with everything. I love you all very much and really appreciated your help. Thanks to Trish for making the special rice krispie treats and my dad for making the lemonade. Thank you to Patrick and Dessie for your generous donation. You all really ROCKED this weekend. It really means a lot to me and Jeremy. Ok so I know the big question is "How much did we make?". We made half of what I need to pay for Joey's HBOT. I will be able to make payments are the rest.

THANK YOU ALL VERY VERY MUCH.

This is the last week of school for the kids. Whoo Hoo! I leave with my MIL, Jack and Joey on Saturday for Idaho to visit my SIL and niece and nephews. Then when we get back Joey start summer school. It is just an extension of his pre-school for 4 weeks. He has the same teacher and aide he had during the regular year.

Joey has had his cast on for about 3 weeks now. About 4 weeks ago Joey received botox in his calf's so that we can stretch his muscles and tendons. He is then serial casted for 4 weeks. He gets fitted on Friday for his AFO's (ankle and feet braces). It was very painful for him when we replaced the cast after 2 weeks. His legs really spasmed. However we are more than half way through this casting time now.

As far as Joey's improvements since this last stem cell in August, well, it's hard to tell. What I do see is his ability to suck and move food around in his mouth is better. He also moves his arms so much more. His cognition is a lot better. He understands more so has more tantrums. Great thing, but very exhausting.

This is our last week of Intensive Suit therapy, then in July we go to Arizona for a week for ABM therapy ( this is the same therapy he received in Costa Rica). I am hoping to start his HBOT in August. I am very excited. Then we will take a little break through the holidays.

Well that's about it for now. We are all doing great. Thank you for your support and prayers.

Wonderful Strangers

2010-05-24T09:01:00.000-07:00

Yes, we all know that there are special people in the world that will do most anything for most anyone, however we rarely meet these people. Some of these people will even do for others they have never meet. Well I got the privilege to have come across a couple of these people. One of them I was able to meet and the other I have not meet.

About a week ago when I was at the car wash with the boys I met a gentleman who was very curious about Joey. He saw Jack playing with him and started to ask questions. I love when people are curious about Joey and ask questions. Well to make a long story short, he asked how he can help. He owns his own business and wants to get the word out about Joey and the HUGS Foundation. So he has begun to help. He has spread the word on his Facebook and told all he knew about Joey and the HUGS Foundation. Thank you Patrick. Patricks website is www.simplefy.com

Then a few days later one of our friends meet a very generous man who wanted to help us. He is donating a bird cage to our garage sale and has also donated 4 dozen personally engraved hair brush's for me to sell to raise money for Joey. I have never meet this man, but appreciate him so much. I do not even know his name.

I am selling these brushes for $20.00. I will gladly ship them to you, please add an additional $5.00 for shipping. The back of the brush is engraved with the following "The Journey is Everything" Joey, and on the handle it is engraved with his website. They are very nice brushes. He normally sells them in the stores for $30 without the engraving. You can click on the right side to purchase them.

Thank you to all the WONDERFUL STRANGERS out there.

P.S. Just a reminder, on Wednesday May 26th, the HUGS Foundation is having a dinner benefit to raise awareness and monies. The summer is upon us, so please please think water safety. No child or family should have to suffer the fate our families have to suffer and endure on a daily basis.

P.S.S. Then on June 5th I am having a garage sale to raise monies to buy Joey a gait trainer (walker) and to get him HBOT treatments. The total cost of these two items are about $6200. So if you have items you would like to donate to the garage sale I will love to take them off your hands or if you are up and awake early on Saturday morning I could surely use the help at the garage sale.

Thank you to everyone for your support and prayers.

Swimming with Clothes On!

2010-05-21T21:57:00.000-07:00

Tonight I went swimming with clothes on, shoes and everything.

WHY!

BECAUSE, a parent wasn't watching their child.

Ok, so here's the story. I was at a BBQ tonight. Parents were eating and chatting on one side of the yard 10ft away from the pool. A dozen kids swimming. A 2 yr old playing in the pool on the baja step, no floaties or anything. The child is a big kid. When I first saw the child, I thought he was about 4 and could swim, because mom wasn't near by. The baja step is on the farthest side of the yard with palm trees around it. Very hard to see the area where the child was. I was only planning on being at the BBQ for 30 minutes because I was going to go to temple with Jessica. As we were leaving, I walked past the area where the kid was playing. He was still on the step, but close to the edge. As I got to the back gate, I gave one last glance toward the pool. Child was already under, head was no longer bobbing, hands were barely above the water. I ran the 10 yards yelling "get him, get him". I was in that pool and had the child out of the pool before another adult was there to help (that's how far away the adults were from the pool). Jack was the closest to me because he also dived in. Jeremy helped me out of the pool I was in shock, I began to cry. The mother of the child was in shock and speechless. She started crying about 30 minutes later and then left quickly .

Most of these people at the party know my family and have met Joey. Some of the fathers are police officers and paramedics and firemen (we live in Simi Valley, that's all that live here).

Because of Joey I have become paranoid around the pool. Doesn't mean when I'm around that I'm going to watch your kid for you. WATCH YOUR KIDS! WATCH YOUR KIDS! If you are having a BBQ, make sure the parents know to be responsible and watch their own kids. Doesn't matter how old your kid is. Accidents happen. Kids play rough in the pool. Older kids can hit their heads or can get jumped on. DON'T be one of those people that say "OH it won't happen to me".

This family, this child does not deserve the same fate our family and Joey have endured. This mother and child have no idea that Joey was watching over them tonight. He was their living ANGEL. Through me Joey saved that little boy.

Thank you Joey.

So my one plea to everyone, whether you have kids or not. If you have a pool, don't rely on the gate or the alarm or another parent. Watch your CHILD! Get a lifeguard if you are having a party. Think of my son Joey. It CAN happen you YOU!

My 35lb Pack.

2010-05-19T06:15:00.000-07:00

I had one of those days.

What kind of day you ask?

One of those days about self pity. One of those days where you feel alone. One of those days where you just feel you can't go on anymore. One of those days that everyone bothers you. One of those days where you are jealous about what everyone else has and you don't. One of those days knowing that no one really understands what you go through.

I just had ONE OF THOSE DAYS!

Let me explain.

Before Joey had his accident. I had plans, I had dreams about my future, I had things I wanted to do in life, I had MYSELF.

As soon as Joey fell in the pool. the universe hit a bump and I fell out of the wagon. Other family members and friends fell to, but they still held on and were able to climb back in. I was never able to get back in the wagon. I had to gather up all my emotional strength and physical strength and had to go on a journey by myself. Well not completely by myself. Joey fell out to. He also couldn't get back in the wagon. The Joey that was traveling with me was severely handicap and had to overcome even more then I would have to overcome. So I'm on this journey with a 35 lb pack (Joey) on my back. My job on this journey is to protect this 35 lb pack., to make sure it was safe and healthy and always happy. It didn't matter so much what condition I would be in, as long as my pack was safe.

During my journey I still had to be a regular wife and mom and friend and family member. The chores still had to be done, the school work needed help, the money had to be made and the bills paid. Decisions about my other kids future and the future as a wife still had to be decided on. However, I did have some help with these decisions. My husband would jump out of the wagon here and there along the journey to help, but he still had his dreams and passions to pursue, so back in the wagon for him.

As I began to take a few steps on my journey, I felt the weight on my back, but the journey was fresh and I had the energy to take off . Slowly as the journey gets more tedious, I began to struggle. However, I have learned to smile and laugh again. So now as I am walking I can laugh and joke. I learned to slow down and enjoy the scenery. I am able to decide what paths are best to take. Each decision I have to make on a new path or to step over or walk around a new boulder is just as stressful as when my journey began. My decisions are solely my own to make. Every once in awhile I see a wagon with family and friends on it. Sometimes they will hop off for a second to pat me on the back and say encouraging things, or give me advice. But what it comes down to is I'm all alone on this journey.

What bothers me the most about my journey is that no one asked me if I wanted to take it. I always felt that I fell out of the wagon. Maybe God thought I was the strong one, maybe I was the one who could handle this better then anyone else in the wagon. As time goes by I learned that I was pushed. I didn't have a choose. Someone made that decision for me. I had to figure it out myself. Everyone in that wagon kept on going. They still had their dreams and hopes for the future. There decisions about the future weren't solely made by the pack they were carrying. They could follow their dreams and if they made a wrong decision or a decision that didn't work out they knew it won't effect the very delicate 35 lb pack. (Now, I'm not talking about a regular family with kids who have regular decisions they have to make about their children or their financial being or their jobs or their regular lives, because I still have to make all these decisions also, I just have to do it with a 35lb pack on my back.) Don't get me wrong. I would do anything and everything to make sure my 35lb pack was cared for perfectly. That it felt loved and was happy and even if it didn't care or realize, that my pack would get all the chances in life to get back on the wagon.

Along my journey with no final destination insight, ever, I began to lose myself. Lose who I was, who I wanted to be, what I wanted to do. With no relieve from the stress and never able to catch up from the tiredness, I have very little left of my self. I don't belief that I will ever completely lose myself, there is always a piece of myself deep down inside the 35lb pack I'm carrying. I also believe that one day as the 35lb pack begins to climb back onto the wagon that maybe he will take me with him and I can have the chance to refocus on myself. That I can pursue new dreams I have. The dreams and passions and future that I once had when I was on the wagon are forever gone. I say forever gone, because my 35 lb pack now gets a say in my future. Even when my 35lb pack gets back on the wagon I still have the job to make sure it is safe and happy. He will ALWAYS need my help in making the decisions about life, which in turn means I will never be able to fully get back on the wagon, however I will settle for just hanging on for the ride.

I am tired of walking, but each day the 35lb pack gives me the strength to keep one foot in front of the other. Some days I even have enough strength to run.

THE JOURNEY IS EVERYTHING! I have to make the best of it, so I keep on trekking.

So Many Decision to Make

2010-05-18T09:44:00.000-07:00

So much is going on right now. Actually so much is always going on.

Joey had his botox injections last week and everything went great. I am able to really stretch his calf's now. Tomorrow he will get his casts on. He will be serial casted for 4 weeks to stretch his calf's. Then we will be able to get his AFO's (braces) on his feet.

During this 4 week time we got a lot going on, Fundraiser Garage Sale for Joey, Jessica graduates from Hebrew school, school ends, a trip to Idaho and then a trip to Lake San Antonio. Sometime between the trip to Idaho and San Antonio Joey will get his cast off and his AFO's on. This means a lot of work for me and stress for me, but I'm really learning

now how to do it all pretty smoothly. 2 weeks after we return from San Antonio, we are taking a trip to Lake Havasu. We will be there a week. Then Jessica and Jack will go off to sleep away camp the weekend we get home for 2 weeks and I will head to Arizona with Joey for ABM therapy for a week. The day I return from AZ, Jeremy and I will spend the weekend in Las Vegas. Once we return from Las Vegas my schedule will be cleared up, besides some dr. appt's and regular therapy appt's. By being so busy, our summer will go by fast.

Joey will start kindergarten in August and will be in school 5 days a week all day. I have to really make some major decisions about his therapy. We will not have the time to drive the hour down to his therapy clinic. Not sure what I'm going to do yet.

I want to take Joey to do HBOT (hyperbaric Oxygen Therapy), I just have to find time to fit in into our lives. HBOT is a 2 month adventure.

As far as our results from Costa Rica, we have seen some changes. Joey is really trying to use his mouth to suck. He has better trunk control. I am really praying that his eyesight comes around more. The major change is his cognition. He is so aware that he demands attention by crying. So he cries more then he did before. VERY FRUSTRATING (the crying)

All this makes it SOOOOOOO hard to diet. Stress makes me want to eat. Why can't I just take a pill to look like a super model. That would make it so much easier.

Ok peeps, I have posted the flyer to our Garage Sale. Please pass this information around. I would really appreciate it.

Thanks

I Made it Through the Day.

2010-05-13T20:12:00.000-07:00

I am so exhausted. We made it through the day. It was a busy day. Way more stressful for me then for Joey. Joey just went with the flow.

We were up and out of the house at 7:30 this morning. I dropped Jessica and Jack at school, then off to Santa Monica for Joey's botox injections. Going to the appointment I was very nervous for Joey. I thought it was going to hurt him. He was to get two injections in both calf muscles. Before we left the house this morning I put numbing cream on the sites of the injection. When we got there, the doctors did a quick reevaluation and then he laid across me on his tummy as the two doctors proceeded with the injections. Well he did flinch, but NO CRYING! He was fine, he didn't even get tense. So that was it, he was done. In and out in 20 minutes. He will get his casts on next week.

Then back home for a snack. Grandma Janet came over and babysat Joey as I went to his IEP meeting. So while Joey and Jack and Grandma went to get ice cream. I was in a 2 1/2 hour meeting planning Joey's future in school. The meeting went great. The school is going to get him a stander, new gait trainer, a couple communication devices and a special brace on his hand to help him write. He will be in a special needs class all day except during P.E., recess and lunch. He will be with the typical kids during these times. He will also get educational PT and OT, and he will get adaptive P.E. hours. The vision and speech therapists will also see Joey more hours during the month. As far as medical PT and OT, he gets 1 hr a week of each from CCS. I will be having a meeting with them to see if we can add more therapy time.

I still plan to pursue more PT privately. I still have a lot of thinking about what to do with Joey regarding his PT.

So all in all, everything went great. I am looking forward to kindergarten, however I am still a little nervous. What am I going to do with my days.........ummmmmmmmmmmm! Guess I'll find a little of me again.

P.S. I wrote in an earlier post about our garage sale, so if anyone has items to donate to us that would be great. We could also use the help each day.

Thanks everyone for your thoughts and prayers.

The Month of May

2010-05-11T08:21:00.000-07:00

The month of May is busy.

Joey has been doing really good since we got back from Costa Rica. He is sitting independently for an average of 5 minutes. His trunk control and head control is much better. He is also using his arms a lot more now. He can grip and release on command. Also again his eyesight has improved. He really watches tv now. It is awesome.

On Thursday I have a couple very important appt's. Joey will get botox in his calf's to paralyze the muscle so we can stretch his muscle to get his feet set in a more natural position. His feet point because of his tone (muscle contractions). Even though we will have topical pain medicine on the area were the injections will be, you know its still going to hurt him. My poor baby. About 2 weeks after this procedure he will get serial casted. Meaning we will put casts on both legs (like if he broke his legs). He will have to wear them for 4 weeks. The first few days of this he will be miserable. I am not looking forward to this. The only thing that keeps me pushing forward with this procedure is that his feet will no longer be deformed. UGHHHHHHHHH!

On the same day I go for Joey's IEP meeting. This meeting, for those of you who don't know, is a meeting with the school to set his plan for schooling and therapy. Joey is entering kindergarten. Why I am nervous about it is because I am going to be asking for several things that the school district doesn't give easily. It will be a fight. I just open it goes smoothly and we can all come to an agreement without to much hassle.

Then on memorial weekend we are going camping with our friends for a little rest and relaxation and a bit of swimming. This is an annual trip. Unfortunately because Joey will have his casts on he will not be able to swim. And boy does he like to swim.

Then for all you who live in Southern California near us, I am having a garage sale. All the monies raised I am going to put in Joey's acct. I need to raise money so that Joey can begin HBOT ($5000) and so that I can buy him a gait trainer/walker ($4100). The garage sale will be June 5th and 6th. If anyone has any garage sale items they would like to donate I will come around with a uhaul that week before and pick up your items. I could also us the help early in the morning if you would be interested in volunteering. We will also be selling coffee in the morning and lemonade and cookies in the afternoon.

I am asking for everyone prayers on Thursday during our appt's.

Thank you to everyone for being so supportive.

Playing the Drums!

2010-04-29T21:34:00.000-07:00

Yes Joey was playing the drums. He was lifting his arm and banging on the drum.

I noticed after our trip to China, his cognition improved greatly. Well I know that it has been only a couple weeks since Costa Rica, but his cognition has improved even more. He is not just understanding what we say and what is going on, but he is following directions now. I never thought he would have the ability to follow directions. I also didn't think that the neuro connection in his brain worked with his arms and hands very well.

Well today he showed me. Yes, he showed me. Before Costa Rica and China, if you grabbed his arm or hand he would pull away (reflexive reaction). He didn't like when people touched his arms. He also would not hold anything in his hand unless you shook his hands and stimulated his arms. Lately he has been more tolerable.

Today during PT, his therapist walked him up to the drum set in his gait trainer. She put a drum stick in his hand, and What did he do? He held it. We then asked him to lift his arm and hit the drum. After about 5 sec. he would start to grunt and look like we was concentrating really hard. Then he would lift his arm up and hit the drum. He did this about a dozen times before the session was over.

When we got home, he did the same with reaching and touching during his Behavioral session. He would start grunting and then would reach and touch.

WOW! I am so impressed with his progress. He is a smart boy and working hard. You Go Joe!

My Son SUCKS!

2010-04-27T19:52:00.000-07:00

Changes are beginning to happen.

Today at therapy I was talking with a couple other moms and our OT about vital stim. Even though Joey can eat anything and everything I am going to try a few sessions of the vital stim. I was teasing with the OT and said 'Hey, can you make Joey suck'. I really wanted him to start sucking out of a sippy cup and straw. Within that minute I decided to get up and get a sippy cup to see if Joey can do it yet. Usually he just bites down with his teeth to get the water out. To my surprise he began sucking. He didn't use his teeth at all and kept his lips closed around the cup 95% of the time he was drinking. Tears began to come down my eyes as I turned to the OT and said 'Well guess I don't need you anymore". Hee hee hee Throughout the rest of the day I gave him his sippy cup and he continued to suck on it.

I also got a straw sippy cup. He can't suck that yet, however, when we were in Costa Rica he was able to suck out of a straw on a juice box. So I am going to buy a million juice cups so he can practice. Thanks Gracie for showing Joey how to do it.

So now I can officially say that the stem cells from Costa Rica are working. He is doing so great. First the sitting, then the walking and now the sucking.

Yeah my kid SUCKS!

More good news, I have been trying for a year to get my insurance company to pay for Joey's gait trainer (walker). They finally got back to me and they are going to pay about 80%. Whoo Hoo. Now I only have to come up with $1100. Yes, gait trainers are very expensive. I'm so excited, I am a step closer to getting Joey to walk up and down the street.

Thanks for all your prayers and thoughts. Please keep them coming. We can never get to many.

What Do We See...........................

2010-04-22T16:23:00.000-07:00

When are you going to see results?.....................That is the question everyone is asking us since we have been home from Costa Rica. My answer is 'I don't know'.

When we were in China, I saw changes 2 days after Joey's first injection. His eyesight improved right away. Then we consistently saw new changes for up to 6 months after we returned from China. Then after those 6 months he took what he gained and built on that. His sitting went from an average of 3 sec. to an average of 1.5 minutes. His response time improved greatly.

We have now been home from Costa Rica for 5 days. And yes I have seen changes already, however I don't know if I can contribute that to stem cells just yet. When we were in Costa Rica Joey received ABM therapy. He got 1 hr a day for 5 days.

As for the changes I see:

-He is sitting up and forward a lot now in his wheelchair and feeding chair. He did this before, but not to the extent he is doing know.

-He is also sitting for an average of 4 minutes, over these last 5 days. He sat for 10 minutes today.

-His response time in everything increased dramatically.

-He is making different sounds with his mouth. Moving his tongue differently. He is really trying to say a lot of words now. It is still sounding like retard talk, but he is trying really hard and he has increased his vocabulary by tons. It is really awesome to hear.

-He is also starting to suck through a straw on a juice box only. Not mastered yet, but he didn't do this before Costa Rica. I'm sure he will master this soon enough.

-He is walking in his gait trainer much better and faster. Because he has regained much of his eyesight, he sees where he wants to go now. So he has some motivation to move faster.

-He will let you touch and hold his hands and arms now. He used to pull his arms away when someone would try and hold his arms. He loves it when you hold his hand and walk him in his wheelchair.

So to reiterate, I don't know how much of this is actually from the stem cells from Costa Rica, or from China or just from his ABM therapy in Costa Rica. BUT, no matter where it is from, I'll take it.

I am so proud of him. He is really working hard. He is a really great sport.

Headed Home.

2010-04-18T11:07:00.000-07:00

WHOO HOO we are HOME!

Yesterday we started our travel home. It was a bitter sweet kind of day. So glad to get home but sad to say goodbye to our friends.

We left the hotel this morning at 7am. What a sight to see. 6 suit cases, 3 wheel chairs, 2 car seats, backpacks, purses, 3 kids, 4 adults, 1 van. I should have taken a picture of that one!

We got right in to pay our taxes so that we could leave the country... yes... airport tax...you don't pay....you don't leave! When we got up to the counter to check in the attendant was looking a bit frazzled. They had our plane load from the tarmac... no jet bridge. She was trying to arrange a bus to get us to the plane. As she checked us all in she jabbered on the phone with ... well ...who know trying to figure it all out. In the end they where able to change the gate and get a jet bridge.... all for us! WOW!!

We loaded the plane early as they were trying to push us off the gate and the bridge to make room for another plane. It was raining but that didn't slow us down at all. Joey was very fussy the first 2 hours of the flight. I almost put a parachute on him and throw him off the plane. He finally ate breakfast and slept for the last hour

We arrived in Dallas almost and hour early. This gave us a 4 hour layover. We grabbed a bite to eat with Makenzie and Pam, then said our goodbyes and sat around waiting. Out flight left 30 minutes late, but still got us home on time.

Our second leg was about the same flying time. Joey did a repeat of the first flight. When we got off the plane, Daddy and Jack were waiting to greet us. It felt so nice to be in my husbands arms again. Joey had a HUGE smile on his face the whole ride home.

When we got home I went straight to bed while Joey and Daddy spent time together. Joey wasn't as tired as I was due to the 2 naps he took.

I want to say a HUGE THANK YOU for all of the thoughts and prayers! This trip was amazing and will not soon be forgotten! Please keep praying for the new stem cells to bring much healing to Makenzie, Joey, Brock, and Gracie!

(Thanks Pam for the post.)

Personalize your own free digital slideshow

Last Day in Costa Rica

2010-04-16T19:25:00.000-07:00

Today was our last day in Costa Rica. We woke and ate our typical breakfast of scrambled eggs, pineapple, and some kind of potato's.

Then at 10:30 we had our finally appt. at the ICM clinic for his 4th and last Stem Cell injection. Joey's IV was placed in his foot, because that was the biggest vein. So they had to put a cast over part of his foot and leg to prevent Joey from kicking and slamming his foot down on the IV catheter. After the finally injection they began trying to remove the cast. Finally they decided that they couldn't do it, so off to the hospital emergency room to remove it. Boy, are the hospitals here different. The ICM doctor meet us in the front and we walked right into the back. No filling out paperwork or anything. His cast was off and his IV out and badged in 10 min.

Then back to the hotel. Once we got back we ventured to Burger King for lunch. After lunch Joey had his last session of ABM. For dinner the 3 families remaining and the ABM practitioner headed to Rosti Pollos for dinner. Our farewell dinner. Yeah time to go home.

We leave around 7 in the morning to go to the airport. I fly from Costa Rica to Dallas with 2 other families, then from Dallas to LAX. I get home just intime for bed. WHOO HOO!

Thanks to my friends, Pam and Makenzie, Jennifer, Scott and Gracie, and LIsa, AL and Brock this was a fun trip. I will miss you all so much, but remember we will always have .....................but we have F'N Walmart.......with a Deli.......on the Eastside! (inside joke).

Now we pray the stem cells to some work.

A slide show will be coming soon.

5th Day in Costa Rica

2010-04-15T06:11:00.000-07:00

Today was a great day. Joey finally calmed down. I figured after he went to the bathroom 4x yesterday that today would be better =)

Today was much the same as yesterday, ABM, lunch, stem cells, hanging by the pool.

The food sucks here. We have gone to Subway (yuck) and Burger King (Yuck) and Rosti Pollo (a chicken place, not to bad), but it just doesn't taste the same. Service takes forever. My diet went out the window. I'm sure I have gained almost all my weight back. It is hard to eat heathy here. So I will just start the diet over again when I get home.

Our hang out place.

Hanging out.

Goofing around.

I have seen great changes in Joey from the 3 sessions of ABM already. He sits forward all the time now. His head control is so much better.

Working with Tanya (ABM Practitioner)

Waiting for stem cells. Sitting up great.

We probably won't see changes from the stem cells for a few weeks at least. Pray we see changes.

I can't wait to come home. I miss my bed and my dogs and kids and hubby.

Today Joey has his 3rd injection of go-go juice.

Thanks to all for your continued thoughts and prayers.

Go-Go Juice - Day 4 in Costa Rica

2010-04-13T19:18:00.000-07:00

Today Joey was scheduled for his first injection of go-go juice (stem cells).

Joey had a rough night last night. He didn't sleep well, which means I didn't sleep well. He then continued to be fussy all day.

At 9am he started with his ABM session which lasted an hour. I have already seen changes in Joey with just the 2 sessions he has had. Joey's body is normally in extension (meaning every inch is extended). Since the 2 ABM sessions, Joey is bringing himself into flexion more. For Joey this is a great thing.

Joey, Brock's Daddy Al and I ventured to the market when Joey was done with his session. It is about 1/4 mile away. The markets here are just the same as the ones in the states. Then back to the hotel to gather the rest of the gang and off to lunch at Rosti Pollo. After lunch we headed to the ICM cl

inic for his 1st injection of go-go juice. First it was Makenzies turn, then Brock and then Joey. Joey moved so much, we had to lay him down on the table and I had to lay across his body to hold him still. He continued to be fussy the rest of the day. I changed 4 poopy diapers and he finally calmed down around 6p. We hung outside with our friends until bedtime.

Joey, Makenzie and Brock parked in Handicap parking.

Tomorrow will be the same schedule as today, but hopefully not with a fussy kid.

Time for be, I am exhausted.

3rd Day...Hospital Day...Costa Rica

2010-04-12T19:56:00.000-07:00

Today was our 3rd day in Costa Rica. Joey slept great last night. We got up early to get ready. We had a lot to do this day. At 8:30a he started his first of 5 ABM sessions. It took him about 30 min. to get use to it and then he calmed. He did great. Then off to the ICM clinic for our meeting with the doctors and of course to give them the MONEY. The doctor answered all my questions, of course I didn't have many since this is our second time doing stem cells.

We then hung out by the pool with Pam and Makenzie and our new friends Lisa, Al, and Brock.

Then off to the hospital at 11:30a to get the catheter put in for the Stem Cells. Poor Joey, he wasn't allowed to eat after breakfast because he is going to be sedated for the insertion of the catheter. By 1:00p all our friends were at the hospital waiting their turn. Finally at 2:30p Joey was taken back for his turn. The procedure including being sedated only took about 30 min. When he woke up from the sedation, he woke up screaming. He screamed for approx. 30-40 minutes. Boy does he have some lungs on him. The doctors put a partial cast on his leg where the port is so that he won't pull it out.

The day finally ended around 7:30p for him. He was exhausted.

Tomorrow Joey will have his first stem cell injection.

2nd in Costa Rica

2010-04-11T20:24:00.000-07:00

Today is Sunday in Costa Rica. We started off the day welcoming the ABM practioner, she came in really early this morning. After breakfast and some goofing around we decided to go have some lunch and site see. We went to the butterfly garden. It is a beautiful place.

We all had a great time together. Then back to the hotel for a little relaxation. Ok, so maybe not much relaxation. Joey again today was very fussy. Whether I held him or not he was fussy. My back is starting to ache real bad. After dinner he finally calmed down a bit. Our friends came to hang out in our room and we starting goofing around some more.

Tomorrow (or today depending on when you are reading this) Joey has his evaluation at the ICM clinic in the morning, then his ABM session, then off to the hospital for this catheter insertion for the Stem Cells. I am getting very excited know JOey is going to get more stem cells.

Please pray Joey will calm down and not be so fussy anymore.

P.S again I have posted more pics and video on www.dropshots.com/fightingjoey

1st Day in Costa Rica

2010-04-10T19:54:00.000-07:00

Today was our first full day in Costa Rica. Joey slept crappy during the night (I knew he would, we are in a strange place for him). We took our time and got up and dressed. Joey and I hit the continental breakfast, runny eggs, I love um.

Then around noon we went with our friends, Pam and Makenzie, Jennifer, Scott and Gracie, to subway for lunch then arcoss the street to the park. We had a great time at the park.

We then spent the rest of the afternoon in Gracie's room discussing, Farkle and Bejeweled and our kids funny habits and strollers and wheelchairs. Joey was a wreck by this time. He was

so fussy. He finally fell asleep listening to me playing bejeweled (he loves the noise the game makes), as Scott and I discussed stem cells, waiting for Pam and Jennifer to get back from the market. I thought the nap would help, but not so much.

We then got ready and went to an adjacent hotel for dinner. Joey was not a happy camper, however he did eat a ton. Then the challenges of changing a childs diaper who is too big for a changing table in a bathroom with no counter. WOW, that was a fun experience.

Then back to the room. Joey finally was calm and is almost ready to go to sleep.

I have taken tons of pictures and I am unable to post them all on thi blog, so if you want to see more pic, go to www.dropshots.com/fightingjoey

Stolen Posts

2010-04-10T09:08:00.000-07:00

So many times I read other peoples blogs and steal some of their posting. Here is one I stole.

Disability Beatitudes".

Blessed are you who take time to listen to defective speech, or you help us to know that if we persevere, we can be understood.

Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.

Blessed are you that never bids you "hurry up" and more bless are you that do not snatch our tasks from our hands to do them for us, for often we need time rather than help.

Blessed are you who stand beside us as we enter new ventures, for our failures will be outweighed by times we surprise ourselves and you.

Blessed are you who ask for our help, for our greatest need is to be needed.

Blessed are you when by all these things you assure us that the thing that makes us individuals is not our peculiar muscles, nor our wounded nervous system, but is the God-given self that no infirmity can confine..

Blessed are those who pick thing up without being asked.

Blessed are those who understand that sometimes I am weak and not just lazy.

Blessed are those who forget my disability of the body and see the shape of my soul.

Blessed are those who see me as a whole person, unique and complete, and not as a "half" and one of God's mistakes.

Blessed are those who love me just as I am without wondering what I might have been like.

Blessed are my friends on whom I depend, for they are the substance and joy of my life!!!

Costa Rica........We made it!

2010-04-10T05:43:00.000-07:00

Gracie eating her Brownie

Pam stretching Makenzie

Joey sitting like a big boy with the airplane tether.

Well we finally made it. We left LA at 915 yesterday and had a 3 hr flight to Dallas, 3 hr layover, then 3.5 hr flight to Costa Rica. We meet up with Makenzie and Gacie in Dallas. Joey did fantastic on both flights, however as soon as we got to Costa Rica, he had a break down. He screamed for about 1.5 hrs. We got to the Hotel, checked in and went to bed. Joey doesn't do goos sleeping other places. Its morning now and only after 6 hrs of sleep we are awake. That is just not enough for me. We now have a couple days to rest.

On Monday Joey has his first appt. at 10am for a check up and then another at 2p for the insertion of his iv catheter.

WOW! I can't believe we are here for more Stem Cells. I am very excited.

Thank you to all for your thoughts and prayers.

2 More Days till Costa Rica.

2010-04-06T21:41:00.000-07:00

2 more days until we head to Costa Rica.

I am starting to get a little excited. I just have a lot of home planning to do before we leave. Jeremy will be home with the kids and with the help of my family everyone will get to were they have to be. I will probably start packing Thursday night. Hee hee hee Go figure!

I am going to Costa Rica with 3 other families. I am meeting 2 of the families, Makenzie and Gracie, in Dallas for our layover to Costa Rica. We will be sharing a hotel room with Makenzie and her mom. Brock will be joining us on Sunday. I am very excited to spend time with all this great kids and parents. It is a very special world we live in together.

We will also have the chance to try ABM (Anat Baniel Method), a type of therapy, when we are in Costa Rica. An ABM practitioner will be joining us in Costa Rica to work with all 4 kids. I am very excited to see how Joey responds to this. I would like to continue the ABM when we return home.

We will only be in Costa Rica for 1 week, unlike the 4 weeks we were in China. The protocol in Costa Rica is different then China's, so I am also interested to see how Joey responds.

I would like to extend a HUGE thank you to my dad and stepmom and my sister and brother-in-law for there generous donations in helping us get to Costa Rica. Unfortunately I did not raise all the monies needed, but we have found ways to move our monies around to help Joey get his stem cell treatment.

Thank You to everyone for your support and constant thoughts and prayers.

Spring Break!

2010-04-05T03:08:00.000-07:00

The holiday's and spring break are here again. Softball and baseball are on hold until after spring break. Jessica and Joey are doing great. Passover and Easter have been great. We celebrated Passover with a special service at temple on Friday night. Jack's 4th grade religious school class ran the services. Jack made his own Talus. It was a nice night. Then on Sunday we had a family gathering for Easter with my husband side of the family. Boy have I eaten WAY to much. Back to the gym on Monday.

All kids are out of school this week, however Joey still has therapy to go to. On Friday we leave for Costa Rica. Guess I better start getting our stuff together. I am very excited, but just a little stressed with trying to get organized. I am very excited to see our friends and get a chance to hang out with them for the week. I'm aslo excited about the ABM sessions we will be receiving when we are there.

Joey has been doing good these last few weeks. No major improvements or changes lately, however he is a very happy man. I am hoping these stem cells will give him another little boost. In May Joey will receive botox injections in his calfs and then will be serial cast to help stretch his muscles and tendons so that we can get his AFO's on his feet without him being in pain. He will then stat an intensive session of therapy soon after that in May.

Happy Holidays' to all. Blessings.

LIfe........I'm Stressed!

2010-03-24T02:37:00.000-07:00

Have you every gotten good news just to hear the bad news soon after? Well that's been my life the last few months.

As most of you know I am taking Joey to Costa Rica for Stem Cell Therapy in a couple weeks. I have not done any fundraising for this. My dad and step mom said they will give a little, and I have saved some and well over the last few months there is be a foundation that has offered to help, then change there minds. First the foundation said no they can't help (ok, Im not disappointed at this time, I'm ok with it), then they change their minds (say they are going to help, WHOO HOO!), then I get the call that insurance will cover the whole thing (double WHOO HOO). After talking to the insurance company and the foundation that has set it up, wrong information was communicated and insurance is not going to help. So now I'm going to Costa Rica and I don't have enough money (URGGGGGGGGGGGG!) I'm sure I will figure it out and I will have the money, but until then I'm stressing. I leave in 2 weeks.

Then we have a house for sale (short Sale). After 6 months of the bank doing their thing and it getting approved, the buyers back out. Back to square one. I am also trying to sell my car. Got my hopes up, had a couple people look at it, make offers, then back out.

Ok enough venting on my part. Thanks for listening.

I leave tomorrow on a 4 day girl cruise. This should destress me and get me back in control. Every 6 months or so I need to destress or I really start to spiral out of control. However, the stress organizing everyone for my departure is almost a killer. I think I have it all organized now. Daddy will be home with the kids so I know they are in good hands, my house on the other part, ........................."OH MY POOR HOUSE".

Joey has started baseball and it is so great. Jack, his brother, is his buddy during games and practices. It has been a great bonding experience for them. Joey has hit a little plateau, however he is greatly improved since summer (before stem cells). He is using his peripheral vision to see. He can sit unsupported (criss cross applesauce) on the floor for a few minutes compared to a few seconds before. Cognitively he is so much more there. He is doing great.

The one stressful thing about a brain damaged child and their lives is...........welllllllllll..............there is a lot of stressful things. Because their brains heal and change so much over their lifetime, so does their bodies. I look back at pictures and videos of Joey a couple years ago. Pictures of him sitting great and baring weight through his legs and commando crawling, and walking in his gait trainer a lot and fast. These are some of the things he seems to struggle more with now. However, I do know why. A lot of what he did before was because he was frustrated and his brain told his body to get tight (spasticity). You can stand better when your legs are ridged. He would crawl out of frustration. He hates being on his tummy to long. Well he doesn't do this so much anymore, because yes he can roll himself over, or he finds his fist and sucks on it. He doesn't walk so much or so fast in his gait trainer anymore because he is more aware and doesn't like it. Before he did it because he didn't know what was going on. He knows now. He knows if he cries we will pick him up (I need to stop picking him up). As he grows, it is a constant battle with keeping him stretched. His muscles shorten and tighten and then it really makes it difficult to move. His muscles are so tight. There isn't enough time in the day to do all the therapy that he needs to keep his muscles loose all the time. A it is he get about 2 1/2 to 4 hrs of therapy a day.

Kindergarten starts in the fall for Joey. He will be going to school 5 days and almost full days. I will have his transition meeting in the next month or so. I am looking forward to this somewhat. On a more selfish level, I will have a lot of time to get things done. My stress level will drop dramatically. However, Joey will get less therapy and much of his therapy will be in the afternoons after school. He will be exhausted, I don't know how we are going to manage. I hoping to really be able to step up and do a lot of his therapy on my own. I also will also have to find a new PT. We will not be able to travel to LAX area to the clinic where he goes now. Just to far that late in the day (BOO HOO!)

Ok I know I'm jumping around a lot, just please bare with me.

When we get to Costa Rica, Joey will be getting a new type of therapy called ABM at the same time as the stem cells. I have a friend that lives in CO that does this with her daughter all the time. Her daughter is doing so great with it, it makes me jealous and makes me want to be able to do it a lot too. There are no therapist in SO. CAL that does it. I would have to travel up north to San Rafael or down to San Diego, both would cost me about $5000 to go.

As for my other kids. Jessica is doing great in softball. She is a pre-teen going onto adulthood it seems. She stress's me out when it comes to her school work. She is very smart, but very into her social life. I am in the process of planning her Bat Mitzvah, another stress, but with help from my mommy it will be great. Thanks MOM! As for Jack, he is just Jack. He is doing great in school, no stress's there. He is Jeremy Jr., loves the military, loves anything about guns, is a great fighter (Krav Maga) and is a FUNNY FUNNY guy. He is my comedian. I just love this lillte man. We went on a date date the other day. There was a mother/son dance at school. He is very much a gentleman.

I am very blessed to have my wonderful kids and husband, family and friends. I love you all.

Playing Baseball!!!!!!

2010-03-13T13:14:00.000-08:00

Ok bad pitcher, PITCHER! hee hee hee

Wheeling into home plate.

Playing second base.

Joey and Jack, What a team

So much, but so little going on. Ok so this week hasn't been that crazy or out of control, just normal life stuff.

Joey decided to help himself out of his wheelchair on to the concrete the other day. On his way out he hit his head on his chair. At first it seemed like he was going to have a HUGE bump, but after 20 min. of an ice pack he only have a very small bump. He ended up landing on his back. As he fell he got stiff as a dead dog. The good thing about this is that he didn't hit his head because his neck got so stiff, it was like he kept his chin tucked. No injuries beside the small bump on his head. I don't think he is going to try that again soon.

He has been sitting in ABA therapy for 1-4 minutes each time now. He has also been rolling from his tummy to his back in a matter of seconds when asked to do so.

Today was his first baseball game. His brother helped him all day. He played second base for his team and hit a couple of home runs that brought a couple runs in. hee hee hee It was a great game. No losers. The division and people who volunteer to run it are awesome. Thank You all for letting my son play baseball.

In 4 weeks we go to Costa Rica for stem cells. Some good news regarding our trip; The foundation that originally declined financial aid to help is now going to help some. I posted about this in an earlier blog. Also an ABM practitioner is going to also go to CR to treat our kids. There are four of us families going. Gracie, Mackenzie, Brock and Joey

Well that's kind of it for Joey.

My turn to vent a little. So I saw a news video about a 17mth old boy that drowned in a bath tub because the mother left him unattended. After a few weeks in the hospital, being vented and a special new therapeutic hypothermia treatment the child walked out of the hospital. No physical or cognitive issues at all. WHOO HOO! I am thankful that the therapy worked and he didn't suffer any ill effects from the drowning. I am glad another family doesn't have to live my life.

Ok, so this it what pisses me off. The news interviews the family and talks about this wonderful therapeutic hypothermia treatment. The family is also interviewed by other networks and magazines. Not once is anything mentioned about her leaving her child unattended.

So maybe it's just me having a problem. Maybe it's just because I wanted that miracle. I wanted Joey to wake up and be ok. I didn't want him to spend his life in therapy or worry about his knees turning in, his feet not being flat, his wrists not straight, or worry about him not seeing or understanding, or if he can sit or feed himself, or if he will choke when he eats, or what wheelchair do we buy or therapy to spend our money on. I wanted Joey to play in regular baseball and to be in a regular class in school. I wanted that MIRACLE, I WANTED JOEY WITHOUT the DISABILITY.

OK, I feel better now. I shed a few tears and can move on.

I'll do Anything to Make You Happy!

2010-03-01T19:48:00.000-08:00

This post is mainly about my other son Jack. He is an amazing little man. He just wants to make everyone happy and laugh.

Before Joey's accident, he would play with Joey all the time. He taught him how to play video games and how to wrestle. He would ride him around on his motorized tractor. They would fight with Jack's swords. Jack would even wake up in the morning and sit in his crib with him until I got up. Jack loved being a big brother. He loved making Joey happy. Well then things changed when Joey had his accident. Jack felt he needed to blame someone. At first he blamed his dad. Then he blamed himself. One of Jack's swords was in the pool and he swears that is what Joey was reaching for when he fell in. No matter how we tell him, or how often we tell him that Joey wasn't reaching for the sword, and that no one is to blame, he still blames himself. Jack was very depressed for the first 1 1/2 yrs or so. He lost being a big brother. He missed Joey terribly. He didn't interact with Joey at all. He wasn't sure about everything. As Joey got better, so did Jack. Finally after about the first 1 1/2 yrs, Jack found different ways to make Joey laugh. That is all Jack needed. So he continues to find different ways to make him laugh. He loves to hold him and cuddle him. He helps him sit and stretch. Joey just loves all of Jack. Joey smiles the biggest when you say Jack's name. When Jack walks in the room, Joey lights up. This has changed Jack. Jack feels like a big brother again.

OK, so all that brings me to this. Joey started baseball and it is Jack who is helping him bat and Jack who is wheeling him around the bases. Jack getting the chance to heal and be the big brother he always wanted to be. It is the best thing in the world to see. Then this evening Jack was eating ice cream and he decided on his own that Joey wanted some. So he got down on the ground and they shared a 1/2 carton of ice cream. Jack laughed every time Joey made a funny face because the ice cream was to cold. When Jack laughed, Joey laughed harder. Jack said to Joey "I'll do anything to make you happy!" and then kissed him on the forehead.

My boys are healing. One physically and one mentally and they are doing it together like brothers should.

Aspiring for More!

2010-02-27T06:49:00.000-08:00

What do I do every morning and night? I read all the updates on my friends blogs about their kids. This is the only way I can keep up with everyone. Every parent has different views on living with a special needs child and the meaning of their life and how to cope and so on and so on.

I want to share with you all a post from another mother. This says it all. She has summoned up my life as well as hers.

Before I share it with you, I want to give a quick update on Joey. He had his first baseball practice yesterday. He loved batting. He was so tired from it that he fell asleep an hour before his usual bedtime and slept 11 hrs last night. OK that's it for now.

Aspiring for More!

I must admit that I am an Olympics junkie. There is something astounding about these athletes that have trained and sacrificed so much for one goal.......to be the best! I can't even imagine giving up friends, school , and even family to train as an elite athlete. Then you have their families........what have they given up to fuel the dreams of their children? Some have done without for so long......while others have worked two and three jobs to finance their young hopefuls.........It really is almost overwhelming.

However, I got to thinking tonight that we parents of Special Needs children really aren't much different. I have traveled great distances, spent weeks away from home, quit my job, spent endless hours researching treatment, hours of therapy, hours giving therapy, and heartbreaking times fighting for my son. Why, because I believe in him.....I believe.

We parents will probably never be featured on national television, and our children won't be gracing the pages of Sports Illustrated. Still, we press on....some of us trying to teach our children to walk, talk, eat, or learn to be human. Daily.....all around us these struggles continue. Our medals are not Gold or Silver, they are smiles, tears, and triumphs for things most parents take for granted.

I never realized that I am an Olympian. Not a sports figure.....but in spirit because I believe that with tremendous hard work and effort AND faith.......my son will have a future! I carry my torch daily with so many of my special friends with special children.

If you know one of us......give us a congratulatory hug......our journey is long and for some of us it will never end....but we believe and we have faith! All we ask for is a little encouragement......our finish line is often far away and we need to hear the cowbells and cheers to push us along the way!

Sitting Around!

2010-02-24T19:05:00.000-08:00

Joey is just sitting around. .40 sec, 1 min, 2.35 min, 3 min. UH, you ask! Joey has behavioral therapy 5 days a week/ 2hrs each day. During therapy the therapist will sit Joey up, legs crossed (Indian style) not propped with anything. We will do this twice during his session. At the very beginning and then again after about 10 minutes of stretching. Each time we would time him. So before China he was sitting an average of about 3 sec. Then in Oct, Nov, Dec. an average of 12 sec. In Jan. an average of about 19 sec. Well then all of a sudden this last week and a half he has been sitting and average of 2 minutes. We have started reading books to him during this sitting time and he is able to sit longer. Another new thing is now when he falls over he will pick up this arm and try to place it on the ground (protective response). He doesn't do it every time and he doesn't get his hand all the way down, but he sure is trying.

So I guess the Stem Cells worked. hee hee hee We are going to Costa Rica in about 7 weeks for more, I can't wait. When we are in CR we will also be doing ABM (Anat Baniel Method). A therapist from Colorado is coming to CR to work on Joey and his fiancee and other friend. Even though Joey and I will be traveling with no other member of our family. We will meet up with Joey's fiancee and her mother on the connection flight. We are going to room with each other. I'm so glad she in my life. Love you Pam and Mackenzie!

Today we went to see a new Orthopedic doctor. I need to get new AFO's (ankle and feet braces) for Joey. My concern though is that he hates them, so what would be the best way to go about getting the AFO's on him and stay on him. We have decided that a little botox in his calf muscles and some serial casting will do the job. So at the beginning of April he will get the botox and then 2 weeks after, the casting will go on. He will wear them for 4 weeks, then his AFO's will be ready and he should have no problem wearing them. Also at the time when the casts come off, he will start an intensive session of Neuro Suit therapy.

As for the rest of the family.................Jack's 10th birthday is this Saturday. Jessica started softball. I finally found a couple new babysitters, what a relief. Jeremy is taking his Black Belt test in Krav Maga this weekend. Oh Yeah, I signed Joey up for baseball. Challengers league. He starts practices this Friday and has his first game on Saturday. We were a little late signing him up. He is on the Cardinals. I will post pics and videos next week.

Well that's it for now. Blessings to everyone.

It's All About How You Say NO!

2010-02-19T05:52:00.000-08:00

Yesterday, I was judged. A committee board judged my life based on a piece of paper.

This organization is a great organization, they help many and have helped us before. So we submitted an application to ask for some more help with Joey's Stem Cell therapy. We have to write our financial responsibilities down on a 2 page application. Then it is taken to the board for review. Well they denied us. I wasn't mad that they denied us, especially because they did help us once before. I was mad and pissed off on their reasoning and their response. They just need to know the proper way to say NO! Here is what they said:

Julie after reviewing your case with board of directors yesterday, it is there determination that you and Jeremy should do more to reduce your monthly bills, ie get out of your house payment motorhome etc which would free up your income for more of the medical expenses. The purchase of a 43K dollar vehicle this month etc did not help, I am sure that was a van but selling the motorhome to cover that might have been the way to go. I am sorry to inform you of this information and wish you and Jeremy the best.

Here is my reply:

Well thanks for trying. I figured your board wouldn't understand. Most people don't understand what it's like to give up all you have to take care of your disabled child and try to keep life fairly normal for your other kids that were affected by this accident.

So getting a job, selling our rental property and two of our cars, and holding a fundraiser just is not enough? Also the new car, which is a handicap accessible van, my father bought for us.

I'll pray for you all. Thank you for your help.

The person in charge of responding to the applicants needs to learn to say "Sorry you have been denied". Thats it, nothing more. I also can't believe that a group of people can judge my life on 2 sheets of paper listing my financial responsibilities. At least call us in front of the board and talk with us in person. URGGGGGGG! Ok, thanks for listening I'm over it now.

On a happier note, during Joey's behavioral therapy, which happens 5 days a week 2 hrs a day, Joey did awesome. The first thing done when the session starts is they sit him up and time how long he can sit for. Then they will stretch him and will sit him again. His average sitting time on the first sit is about 12 sec. His average time for the second sit is about 20 seconds. Well yesterday he decided to blow us away. The first time he sat for 40 seconds. Also during these 40 seconds, he began to fall over and so he put his hand to the side to stop himself. That in its self was HUGE. The therapist and I were beaming and jumping out of our skin. Well it gets better. The second time Joey sat, he sat for 2.35 minutes. Yes that's right, he sat for 2 minutes and 35 seconds. Everyone started talking to him and he was looking around and he just loved it and sat and sat some more. It was awesome. Well I knew he could do it because his PT says he does it all the time and school teacher says he does it a lot also, but this was the first time I saw him do it. I'm so proud of him. Way to go JOE!

Well that's all I got for now. Best wishes to everyone.

Just Another Busy Week.

2010-02-15T06:53:00.000-08:00

Life is always busy around the Stafford home. Jessica started softball, so we have practices to go to 3x a week now. Jack taking Krav Maga 3x a week also. Joey has his usual routine. School Mon., Wed., and Fri's, therapy Tues and Thurs's and then Mon.-Fri therapy at home 2 hours each day. He is also back doing equestrian therapy on Sunday's. Amongst all this running around with the kids. I have been working 4 nights a week for the last month and a half. Jeremy is crazy busy with all his different jobs and training for his Black Belt test next weekend.

As far as Joey's healing. He is doing awesome. No more HUGE changes for the last several months, but he sure is building on the changes he has made. His eyesight is really coming around. I'm praying that after our trip to Costa Rica for more SCT his eyesight will be completely restored. He is a lot more cognitively aware. His response time is much quicker and he is saying a ton more words. A few weeks ago we got Joey's wheelchair. He loves it. It makes a big difference in his posture. Joey is a very happy boy. I am very very pleased with his progress.

We leave for CR in 8 1/2 weeks. We are going with two other moms and kids. When we are there, he will also receive ABM therapy. this looks similar to PT, but it works more on the neurological level. Then when we get back from CR we will do more Intensive Suit Therapy at NAPA Center and hopefully more ABM.

I finally got a new van this weekend. What a convenience it is. The ramp is in the back. Joey sits in his wheelchair for the ride. I'm sure my back will be saved.

I'm still trying to raise monies for our Costa Rica trip. Please help! You can donate through paypal on the link on the right column.

Blessings Always

Sometimes You Just Have To Laugh!

2010-01-31T20:54:00.000-08:00

WOW! What a month. I can't believe we are already at the end of January 2010.

Work, Therapy, School, Extracurricular Activities, Household stuff and just life has kept me extremely busy. The kids started back at school and so did the homework and projects. Jessica has started softball practice. Joey is heading to therapy 2 -4 hrs a day after school and Jack is practicing his Krav Maga. We got Joey's wheelchair so that has lead me to searching for a conversion minivan. So if anyone is interested in buying my Ford Expedition EL, it is for sale now.

I have also been working like crazy. Teaching at the studio 4 nights a week and Saturday mornings. Also have been putting in more work from home during the days. Jeremy is also working and training for his Black belt in Krav Maga.

My mind has been going crazy thinking about all the things I have or would like to do with Joey. Therapy, Fundraising, our Costa Rica trip, and all his upcoming Dr. appts. There is just so much, Sometimes You Just Have To Laugh, because if you don't laugh you cry. hee hee hee

This weekend just put the cherry on the top for the month of January. Joey woke up this morning with his eyes swollen shut. I took him to urgent care and he has pink eye in both eyes and a double ear infection. This is actually the first time in awhile that he has gotten sick. So while we were at urgent care I had the doctor check the rest of us. Turns out Jessica has the very beginning stages of pink eye also. Jack and I are cleared.

Sleeping at the mall in his wheelchair.

We then hit the mall. Joey is sitting in his wheelchair with his eyes swollen shut looking pretty messed up. He totally looked like a blind, severely disabled child. You felt sorry looking at him. Oh, he was also crying the whole time. We go into a store and a lady comes up to Joey (eyes swollen shut) and says "Hi Honey, LOOK at this monkey it dances". I stopped doing what I was doing and slowly looked at her holding this dancing monkey about 6 inches away from Joey and said "He can't see, he is blind". I'm thinking to myself, 'Look at him lady, his eyes are swollen shut, he can't see.' Really was I the only one that could see that. Sometimes You Just Have To Laugh!

After the mall I hit the market and pharmacy to pick up the kids prescriptions. Right after the first 2 drops in Joey's eyes he took a 1 1/2 hr nap and then woke up with both eyes open. Then a couple hours later daddy came home from work and Joey made a total liar out of me. Joey started laughing and eating again and you would never know he was sick a couple hours earlier. hee hee hee Sometimes You Just Have To Laugh!

So with all that is going on in our crazy life, everything is actually not to bad. Joey is physically better (besides the little sickness) then he has ever been. His body is sooooooo loose. His head and trunk control are awesome. He is doing fantastic in his recovery.

Thank you to all my family and friends who help out in my life. I appreciate you all. Thank You

New Wheelchair.

2010-01-20T21:24:00.000-08:00

When Joey first had his accident, it was our hopes and dreams that he would learn to walk again very soon. Then the time came to get a seat for him. I got him a push chair (Hybrid, wheelchair/stroller). I was hoping he would stay in this until he could walk. It has been very hard and has taken us three years to come to terms that it would be a long time until he will walk again and when he does walk , it will be very restricted. During our trip to China, the airlines broke our push chair. So at this point we had to make a very hard decision. Do we order Joey another stroller or a wheelchair. We ordered Joey a wheelchair. The wheelchair is a better choice, because it will actually help him to sit better and be more comfortable. Then the really tough decisions had to be made, what color wheelchair and how did I want his name printed on it :)

I am very excited to say that we got his wheelchair today. My intrepidation's about getting one has all been overcome. My back will be under less stress, Joey will be more comfortable and we are all happy about it. Now onto a conversion minivan. I have been looking for a few weeks and hopefully figure it all out soon.

Have a good weekend all and for my So. Ca. friends and family, try to stay dry.

What's Up This Year!

2010-01-19T21:27:00.000-08:00

What's up this year? SOOOOOOOO much.

Joey is just booking along in his Physical therapy. He is doing great. His body is nice and loose.

There is a new therapy we are going to try called ABM (Anat Baniel Method). This therapy really works the child's neurological development. I found a practitioner here in Santa Monica and then one of the head practitioners from the main center will be down in Santa Barbara in March. I am very excited to see his results from this. I know some other kids who have done this and they have seen some nice results.

Then in April I am taking Joey to Costa Rica for more Stem Cells. WHoo Hoo!.

In June, we are going to have a fundraiser for Joey to help offset some of his cost of therapy. Also in June Joey will have another intense session of suit therapy.

In August we plan on doing more ABM as long as we see results from the ABM we do in MArch.

Joey is going to see a new Orthopedic dr. This doctor specializes in Cerebral Palsy kids. I am also working on getting a handicap minivan so that I can save my back from breaking any further.

Ok that's about all I have planned, because that is also all I have monies for,

I will continue keeping everyone updated on Joey and his progress and therapies.

Thank you for your prayers and thoughts. Please continue to pray for Joey's healing.

3 Years Ago Today.................................

2010-01-15T22:22:00.001-08:00

3 Years Ago Today................. my life changed forever. I lost my son that I loved for 9 months of pregnancy and 18 months of life. I watched my child die right in front of me. 3 Years Ago Today................... was the last time I heard him laugh or cry or smile or walk or play or feed himself as a typical child. 3 Years Ago Today................... our family was changed forever. We lost the people who we were. The light blew out in our beings. 3 Years Ago Today ...................... OUR JOURNEY BEGAN.

Over the last 3 years I have grieved the son I lost and rejoiced in the fact that I still had a child. I have adjusted to our new life. I have learned to appreciate our journey and make it happy. However, I am still trying to figure out how to turn the light back on within us. Each year I'm getting closer. I have learned a lot about life these last three years. I have met some wonderful people, who without them along my journey, I would have not survived.

However, no matter what, no matter what I still have, no matter what I learned, no matter what I have gained. I would trade it in less then a split second to have my typical son back.

I love my son Joey. I love all his abilities and appreciate all he has and if he did not improve any more from today on, then I will still be very very happy. However, I will continue to do everything in my ability to help his quality of life and to always work on bringing back the light in our selves.

I posted a few posts ago a little summary of the last three years. I also posted videos. You can also go to www.fightingjoey.blogspot.com to see pictures showing our journey as far back as three years ago.

Thank you all for caring for Joey and us. Your thoughts and prayers are always welcomed and appreciated.

Love always

Progressing Right Along......Keep's going and going and going!

2010-01-13T21:12:00.000-08:00

OK lets see where do I start.................In 2009 Joey was receiving Behavioral therapy 3 days a week for 2 hours each. What is behavioral therapy you ask. Well for each child it is different depending on their issues. For Joey it is Physical, Occupational, Speech, Feeding therapy and play time. The therapists keep data on everything within the session. Every quarter they do a quarterly report putting all the data together. This last quarter was a bit different because they only saw Joey in July before stem cells and then the quarter ended in November. Here is a brief summary of his progress

'Joseph has improved in several of his goals since returning from his two-month trip to China. Although there was a substantial pause in services, Joseph has demonstrated maintenance of many of his goals and improvements in others. In November 2009, Joseph's physical reaching average increased by 16%, while his ability to say "goodbye" increased by almost 20%.'

When the therapist first arrive, they would sit Joey up. In July he would sit for an average of 3 sec. This was with no prepping. In November his average sitting time was 9 sec. (up 6 sec.). As of Dec. is average is 15 sec (up 6 sec. more). So far in Jan. his average is 24 sec.(up 9 more sec.).

HUMMMMMMMMM! I wonder if the stem cells worked! Hee hee hee

Then today I went to the market and forgot Joe's stroller. This meant I either carry him and break my back or go home and get the stroller. Well I wasn't about to do either. I decided to sit him in the cart. Previously (before stem cells), he could not sit. He would fall back or to the side. However, today was different. He SAT. Yes he SAT. He did not once fall back or to the side. Instead he sat straight up with hunching forward once in awhile. As he got tired sitting 20 min. He would lean forward and grab onto my shirt. I think he just wanted kisses. HA HA HA!

His body overall is very loose. His weight bearing on his arms and his standing are so much better. He can sit in circle time at school for 15 min. with little help. He sits in a square box like chair. No support the whole time.

In April we are going to Costa Rica for MORE stem Cells. I am so excited to see the changes from this.

Ok that's about it.

Blessings to everyone

MAKE LEMONADE!

2010-01-12T21:56:00.000-08:00

MAKE LEMONADE!!!!!!!

The Lemonade Award is given as appreciation for those people who have been given lemons in life but have been able to make lemonade out of it all. I received this award from a good friend of mine, Pam, that blogs about her family's journey on her blog Makenzies Miracle.

So here are the rules..

*Put the Lemonade logo on your blog or within your post.
*Nominate at least 10 blogs with great attitude or gratitude.
*Link the nominees within your post.
*Let the nominees know they have received this award by commenting on their blog.

*Share the love and link to the person from whom you received this award.

Here are my nominations:

Charlie K

Well that's it for this post. I will post more about Joey tomorrow. I have a lot to tell, but not enough time right now.

Night, Night!

To Cuddle!

2010-01-07T07:27:00.000-08:00

What does a little cuddle mean to me? A cuddle, to cuddle, means the world.

There are those kids that always want to hug and sit in your lap and want to be held and then there is the kid that never wants to hug or cuddle. You have to threaten the kid that if he/she doesn't hug you then you are just going to have to take a hug from them. However, these kids will still cuddle, when they are sick and need their mommies. Then they're are the kids that can't cuddle or hug. I have had the experience of all these kids. My first was not a cuddlier, my second at 9 yrs old still cuddles, and my third child for the last 3 yrs could not cuddle.

When you have a child that can't cuddle, it hurts. Of course it hurts the mommies and daddies the most. Every mom and dad wants to grab their child and have their child hug back or hold on tight for a cuddle. When your child can't do this it hurts the heart.

Since Joey's accident he has not been able to cuddle or hug. If you held him to close he arched back (went into extension). This was just a reaction his brain told his body to do. His respond was not his chose either.

Well since stem cell therapy things have changed. One of my greatest joys has come true. Joey will cuddle now. His body no longer goes into extension every time you hold him. He will curl his upper body into you. His hands will lay relaxed on your shoulders and he will then demand kisses with the movement of his head and mouth. You can tell he is pleased with himself that he is able to do this now.

His cuddle is the most priceless thing in the world to me right now. I get teary eyed just thinking about it. I will hold him until my back goes out, just to be able to cuddle with my little man.

I pray that all my friends who have kids that don't cuddle or hug will one day be able to. My prayers are with you all.

New Year, New Stuff!

2010-01-04T07:14:00.000-08:00

Why is it that as you get older, time goes by faster? I just can't believe another year is gone. January 16th is going to be 3 yrs since Joey's accident and the beginning our our journey.

Here is a recap of our journey:

January 16th, 2007 - Joey decided to go swimming without any help. Well that didn't work out to well for him. He suffered an anoxic brain injury.

Feb-April. 2007 - Joey was just trying to recover from the accident himself. He was going to therapy and HBOT. Yet was still trying to wake from his brain damaged state he was in.

May-Dec. 2007 - Joey was now awake and aware of his surroundings. A lot of changes in his body happened this year. He also began to eat and drink orally. Therapy continued 6 days a week. Special needs equipment began showing up in our house.

By the end of 2007, Joey could hold his head up fairly well, get on hands and knees and hold that position for a few seconds, eat orally, smile and laugh hysterically.

2007 was a year of understanding, learning patience, and just trying to recover and find the path to move on.

Here is the video I made after the first year of our journey.

Then 2008 began. By this time it was all about research. Research this therapy and that therapy and learning what works best for Joey. He also turned 3 yrs old this year and a lot of changes happened in our lives.

Jan.-May 2008 - Therapy, therapy, therapy. Joey was also weened from all his medications and by April I was no longer using the feeding tube for food. He crawled for the first time in February and really began using his body a lot.

June 2008 - We moved to a new house (to hard to live in the house where the accident occurred). Also the therapy that Joey received 6 days a week ended. He now belonged to the school district.

July 2008 - Time to relax. We stopped most therapies this month and went on vacations. We were all drained from life.

Aug-Dec. 2008 - Pre-school starts, new therapies start and a lot more changes began. Joey was now drinking all liquids through mouth and has finally gained weight. He also began to talk. Really talk. He could say "I go", "I love You", "I'm good", "I'm cute", "Hi", and "Hello", and every once in awhile throw in a new word. His speech however was very difficult to understand, but those around Joey all the time understood.

2008 was year of therapies and major changes in Joey.

Make a Smilebox slideshow

OK that brings us to 2009. 2009 was also another year of new therapies and wonderful changes.

Jan.-July 2009 - Joey got very familiar with school. Made a lot of friends and a lot of art projects. He continued his PT, OT, ST, Vision therapy. He also did his Neuro Suit therapy and walked a lot in his gait trainer. He began Behavioral therapy and gained a lot of new skills from this. Joey also felt that in Jan. it was time for his feeding tube to come out. So he pulled it out. He began to eat much more and better ever since.

Aug. 2009 - Joey traveled to China. We spent the whole month there and had a fantastic time. We met great people and had yummy food. Joey and I got to really bond with Grandma Marleen who went with us on the trip. Oh yeah and the stem cell therapy went great also. Right away we noticed his vision improving. He also gained 3 lbs in China.

Sept.- Oct. 2009- Joey did another round of suit therapy and tomatis. He really began using his arms during this session.

Nov. 2009 - Joey spent most of the month in Oceanside doing Sensory Learning therapy. This really improved his vision.

Dec. 2009 - Joey had all his dr. appt's. Neurologist thought joey was doing great, Orthopedic says no scoliosis and hips are not dislocated, and Neuro Optometrist says Joey can see (however not perfect and uses his peripheral vision and right eye to do most of the seeing). We then spent the rest of the month with family celebrating the holidays.

Make a Smilebox slideshow

Now onto 2010, twenty ten. WHOO HOO!

Joey is continuing with his therapy. We will do more Neuro Suit therapy and tomatis and Stem Cells (in Costa Rica this time), Sensory learning and new therapies I am researching. He will also start kindergarten this year.

I am hoping and praying for more improvements in 2010. My fingers are crossed.

May everyone have a very blessed, happy, healthy and safe 2010.

Family Video

2009-12-20T10:25:00.000-08:00

I made a photo book for my mom for Hanukah, but didn't think it would be delivered in time. So I took those pictures and made this video. My plan was to give her the cd of the video and inform her about the book. Well to my surprise the book came in on time. I still wanted to show everyone the video, however I forgot it. So here is the video I made for everyone to see.

Have We Hit a Plateau?

2009-12-17T05:34:00.000-08:00

It has been 3 1/2 months since we have been back from China. We were told that we would see the full extend of the results from the Stem Cell therapy within the first 3-6 months after the treatment. Joey has gained so much from the SCT. His vision has improved greatly. He has gained a lot of it back, however he still has a lot of vision improvements to go. His overall muscle tone has decreased. This is huge because his muscle tone is what stops him from doing so much. He eats much better and is more cognitively aware. He can sit independently for 20 seconds without being prepped first and can sit up to a couple minutes after being prepped. Before it was only about 30 seconds after being prepped. His vocalization has also increased. He says more words and phrases and will hold a conversation with you. His conversations are like having one with a baby. He mimics and googoo and gaga's. It is very cute. So this also has improved a lot. However with all this being said, I think Joey could have hit a plateau. I could be wrong because I do see him all the time and maybe I just can't see it. I don't know. I don't know what to do anymore with Joey. I feel like I have done so much, yet there is still so much I can do. I am frustrated, because I don't have the funds or the time to do it all.

I am going to take Joey to Costa Rica in April for another round of Stem Cells. After that we are kind of at a stand still. I guess I'm so use to running around with Joey that maybe we just need a break, but I don't want to miss out on giving Joey what he needs. The more therapy the better off Joey will be when he is older. I am looking into ABM therapy, but just in the beginning stages of research. Joey will be getting his wheelchair soon and then I will need to get a mini van with a ramp. This will save my back a ton. Insurance and Medical denied Joey his gait trainer (walker). We are still fighting with them. I am going to have the school district help out. Hopefully we can get him walking around the neighborhood soon.

So I was looking at some pictures of the family before Joey's accident. Boy did we look like a happy bunch. There is a light in our faces that have since vanished. My New Years resolution, besides the normal weight lose one, is to bring the light back to our faces. So much of that is personal within each one of us, so I figured if I can work on my light, then the rest will just come. I don't want to be the sad family that has the disabled kid, and poor us. I want to be the family that other people wish they could have.

Well that's it for now. Next week everyone is out of school and off of therapy. We are going to do some spring (winter) cleaning. Eat cookies and have some hot chocolate near the fireplace.

Happy Hanukkah to my peeps and Merry Christmas to my other peeps.