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

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

FRUSTRATION IS UPON US!

Frustration, it hits only every now and then with Joey. Our new normal is well established now. Life is moving at a good pace right now, however my kids are growing up to fast.

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

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

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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!

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

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

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!

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.

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

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!

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"

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

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

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

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.

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!

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?

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!

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.

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.

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 :)