My AMAZING Son!

4 DAYS AGO!

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

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

SCHOOL

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

HOLIDAYS

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

DOCTORS APPT.

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

THERAPY

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

Well that's about it in a nutshell.

Hoping everyone has a HEALTHY, HAPPY, and WONDERFUL 2012

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.