carseats

Aloha,
Well we are still looking for a car seat for Jewel.
I found this great blog just on car seats!
We are looking into the possibility of getting Jewel the Roosevelt car seat.
Check out this amazing blog just on car seats;

http://carseatblog.com/1838/transporting-special-needs-children-its-ez-with-the-roosevelt/

cerebral palsy does not define you

Jewel had a lovely 11th birthday with her family, Aunties, and her friend Ava.
She received a wonderful piece of original Art by Sophie, it is a drawing of Jewel and her dog Grace.
Ava gave her dragon books and the Aunties gave her dolly clothes.
Jewel loves events to be simple where she is able to converse and socialize one on one.

Lately when Jewel wakes up, she opens her eyes, smiles and says; "oh yeah!"  What a fitting welcome to each new day!

Sophie has a exceptional calender of original Art workt, that she put out at Christmas.
www.domusproject.org  is where you can get more information on this amazing artist and all the proceeds of the sales go to the Domus Project which helps the homeless.  Please check out both these sites. Sophie's Art can stand alone as great work but when you realize that Sophie is non-mobile and that she needs a lot of assistance, she is doing the "impossible" by her determination and passion for Art.
www.dreamsonpaper.com is Sophie's Art web site.  Sophie has cerebral palsy and is non verbal but she has never let that stop her from living a fullfilled life.  She has never let her cerebral palsy limit her or define her.  She is my hero and inspiration.  Sophie gives me hope, thank you Sophie!

eleven

2/1/2001

Happy 11th birthday sweet Jewel!

How wonderful to be at a place where all my children are healthy.  Every day is a gift  with 86,4000 seconds given to us each day .... to hone our skills, to be kinder, to find our purpose and once these seconds are gone, they are gone forever.  My desire is to rise up to each occasion and live my life with integrity and love for we will not have the exact opportunity again.
A few weeks ago someone asked me, "what the prognosis was for Jewel, how long did she have to live?"  I did not like the line of questioning since Jewel was sitting on my lap at a barbeque, so I removed my self from this person and tried to calm my nerves.  I was not ready for that kind of questioning.... but since then I have an answer.  Jewel will live a long and prosperous life, full of meaning and love.   That is my wish for Jewel and all the special needs children / people out there.  Our lives are richer and more meaningful because of you <3  Jewel has taught us how to be more patient, compassionate and always reaching a little higher to achieve a goal, dreaming a little bigger  and digging a little deeper into our souls.  Thank you Jewel for just being you!  May God bless and keep you in His perfect care always.

Jewel has been up super early, and is calling, "wake up" to her sisters.
"I am eleven" and yes Jewel you are an amazing eleven year old, now lets go enjoy our day given to us :]

car·pe di·em/ˌkärpā ˈdēˌem/

Exclamation:

Used to urge someone to make the most of the present time and give little thought to the future.

responsibility - we are all responsible for our day

Aloha and Happy New Year!

1/11/2012    Wednesday

We have entered briskly into this great new year and we are finding our footing on a lighted path.

Instead of posting daily, I have taken time to reflect more and just be with my children, for every time
I am on the computer, it is time away from them.

This new year we have new and old goals, but most important we are cultivating and implementing a new attitude of participation specifically for Jewel.

We are still working on mastery in all areas for these are the building blocks for gains and new pathways.

Possibilities abound and all is good.

We are living in the present and feeling very grateful at our good fortune.

We have always done family as a team and now we are heading into a new direction.  Makena and Raven are preparing to graduate high school and their activities are taking them towards their goals.  They are still and integral part of our family and team but times are changing.  Jewel is learning to take on more responsibility.  We are explaining everything to her but the new part is how she needs to be a part of her health and healing.  We are learning alongside her, what exactly is her part.   It is amazing both of us, just how much more she can do!  She needs to be actively participating in her life, her lessons, her therapy time.

These are empowering and such exciting times for all of us.

Many have walked the road with us teaching and leading us to this point in time- thank you friends =]

words from a sister's heart

12/6/11
Raven is my middle daughter, she is best at what ever she stets her mind and heart to,... she said she will not go on to college when she graduates,... but she is taking all the college tests and I found one of her rough drafts for a college app- I wanted to share it, it is a personal statement and .... here it is. 
"My life has been made up of every moment I have lived and every decision I, and those around me, have made. The most influential and poignant moment in my short seventeen years was the birth of my little sister, Jeweliana, or Jewel for short. Jewel was born three months early, and though I was only six years old when she was born, I knew my life-and the life of my family would never be the same.
Jewel was born with cerebral palsy, and ten years has passed since she was born, she still can not sit up,roll,walk, ore even hold her head up by herself. Having a sister with a disability is heartbreaking, but I wouldn't trade her or the experiences our family has had for the world. I learned at a young age that life isn't fair, but you have to keep going. Jeweliana has taught me compassion, strength, kindness, persistence, and most important of all, she has taught me gratitude. Gratitude for all the things I have done, and can do. Jewel taught me to be grateful that I can get up and stand on my own two feet every morning and dress myself, gratitude for being able to brush my own teeth, and hold a pen in my own hand; these small mundane things, which she can only dream of one day being able to do.
I am forever grateful that-amidst the trails and tribulations that come with having a sister so dependent- I can call Jewel my baby sister, my inspiration , my hero. My name is Raven, and I am not the captain of the cheerleading squad, I am not class president, I have never won a science fair, but I have helped raise a child. I have attended hundreds of speech, physical and occupational therapy sessions, and I have taught my sister, against all odds, how to speak. While I haven't been to to a homecoming, or gone away to summer camp, I have volunteered with children with disabilities every summer. I've gotten to watch Jewel make her very first friend and say her first sentence; I have watched her live and thrive, and being her sister has made me the person I am today."

aids / help/ nurses aid

12/2/11  Friday
We got our Christmas tree on Thursday.
Jewel and her sisters picked it out.
They are all happy :)
It is in the living room and it smells so good.
We will decorate soon.

It has been a mixed plate day;

Our O/T that used to work with Jewel is visiting the Islands.
It is so good to see her, we miss her so much!
We love you Crystal <3

Today we interviewed an aid who would come into our home to help out with Jewel.
The insurance company set this up.
It was very disappointing.
The candidate, had six months of schooling with first aid and CPR.
She has not worked long in this field.
She works with the elderly and has never worked with pediatrics.
She has never worked with children with cerebral palsy.
I was shocked.
Though the lady was nice, there is no way she could be of a help with no education or experience.

Each member of our family has been daily training over the past 10 1/2 years to be of help to Jewel.
We work with her day in and out.
We are all first aid and CPR -infant/child certified and some have adult certification as well.
We all have been to almost every therapy session, so we can learn and be of better help to Jewel.

How can the insurance think that someone with out specialized training come in and help with our daughter?  How can a six month general nurses aid program equip some one to be a care giver to a child with is immobile with cerebral palsy with many other labels?!
The risk is high for aspiration during feeding and water for some one without training.
The risk to hurt Jewels hips is high with out the proper experience, education, understanding, and training.
The stakes are too high.
We have kept vigil over Jewel, keeping her safe, healthy and happy.
Good intentions are not enough.
One bad aspiration leads to infection leads to hospitalization .... not worth the risk!
We want to keep Jewel healthy, happy and medication / hospital free!

I am sorry if I sound ungrateful, it seemed like such a positive possibility for her and us but the gift was not satisfactory.

Pancakes for dinner

12/1/11 Thursday
Happy December first!
Woke up this morning to Jewel calling, "tree,tree, tree, tree, tree,...I want a tree, ... get up and get tree please, Grace wants tree, Makena wants tree, Raven wants tree!"
"Get tree now!"
At first I did not quite make out what she was saying and then I got it loud and clear.
One thing that is so wonderful about Jewel is that she is very persistent and will never give up or be broken.
So if by the fifteenth, "tree" if at first I did not understand, she would not give up until I got it. :)

I am thankful for this speech.

For dinner this evening I said, left overs for everyone, pick something and Jewel kept shouting something.
Was it, "bake cake?"  Did she want me to bake a cake?
Jewel said, "No"
Was it, "blanket?"  Was she cold?
Jewel said, "Not cold"
Back and forth I tried and tried, then I called Raven in to decipher, and still nothing.
Then she said, "look" and we looked around by the table and there was a Bisquick box with the image of a Pancake on it, and we yelled, "do you want pancake for dinner?!"
"Yes, ban cake".
Oh, the beauty of speech, to speak and be heard.
We still need to work on her "p" - this is evident and pancakes made a perfect dinner this first of December.

Swallow exercise, Shaker

11/30/11  Wednesday

Today we learned a new exercise for Jewel to help strengthen her muscles for swallow control.
It is called Shaker/Shakir exercise;
"the child lies flat on back, (assist if you need to use two people to help with posture and positioning- Jewel needs this.) Encourage them to raise their head, help them as needed and slowly get them to touch their chin on chest, or as much as able to.  Their shoulders  should not raise-very important because if the shoulders come up you are using a different group of muscles. Get the child to look at their toes.  Slowly with control and a little help the head goes down.  Try stay relaxed, breathing " out" on the up and "in" on the down.  I found a great web page that has this exercise and many more, check it out.  Repetition and consistency is key to be able to see results.  If I drop the ball Jewel fails, but if I am consistent she will progress and reap the benefits.

Shaker Exercise

Lie flat on your back and raise your head as though you were trying to fixate your gaze on your toes. While you do this, make sure not to raise your shoulders. This simple exercise improves swallowing ability if it is performed three to six times per day for at least six weeks. If you get good at it, increase the duration of each head lift and the number of repetitions.

Hyoid Lift Maneuver

This is a rather simple exercise, although it may sound more like a task performed in one of those reality TV shows. Place a few small pieces of paper (about 1 inch in diameter) over a blanket or a towel. Then place a straw in your mouth and suck one of the pieces of paper to its tip. Keep sucking on the straw to keep the paper attached, bring it over a cup or a similar container and stop sucking. This will release the paper into the container. Your goal is to place about 5 to 10 pieces of paper into the container.

http://stroke.about.com/od/caregiverresources/qt/swallowxrcs.htm

The second exercise we did was with a candy cane.  She is in her wheel chair and she sees the candy can on the table, she brings her head down, like a chin tuck and you put the candy can by her mouth and she has to suck.  This is to help the muscles in the lip get stretched and form a tight lip closure.  This will help with drinking safely with out drooling and with her "p,b, m"- sounds for speech.  Some children can do other exercises to help with lip closure but in Jewel's condition this is the best exercise that will help her.  After each suck and swallow,  help the child get their heads back up and take time to catch their breath. This is very tiring for them, be encouraging and remind them; no teeth, no bitting - just sucking. :)  We have seen gains in Jewel's drinking with these techniques, this will help her get stronger and hopefully get more control thus becoming safer.  Her breathing sounds less wet and rattily since doing all her new swallow strengthening games and exercises. Staying calm and relaxed is a challenge for her but she is always making strides.  I am grateful to all the therapists who have helped teach us how to best help our daughter.  Some of these therapists are so talented and they truly have a gift and calling in their field of expertise.  They have come alongside us and changed our quality of life, thank you!  I am learning that it is me who is changing and becoming a better person because of my daughter, Jewel.  Thank you Jewel!  Thank you Raven and Makena who always come alongside Jewel and help her.  They have learned to help their sister in feeding, drinking, and speech.  Not an easy task but a worthy one.  They encourage Jewel to use a full sentence and they constantly ask more of her, daily laughing and singing with her.  Today she sang and it was truly a delightful moment.  We must take nothing for granted and always be willing to go the extra mile for our children.
-"It is the nature of man to rise to greatness if greatness is expected of him/her" John Steinbeck

Thanksgiving

11/25/11 Friday

There is so much to be grateful for, almost to much to list, but I thought I'd post a few things;
Jewel's big smile and her sparkling eyes filled with wonder.
She tells us daily that she loves us.
The laughter she shares with her sisters as it rings through our home.
The fact that she can scream for us by name from the bed room.
On the 15th of this month we went to Shriners Hospital for Children and they said that she was doing well.
Dr. said that her spine was straight and that the x-rays showed that the balls of her hips were more in the sockets than out, as shown in the prior x-rays.  He said that Jewel has always been making gains since he met her.  Such a good report!
She is reading more, and figuring out the stringing of sounds together make words.
She is starting to say, "th" correctly.
She does not have accidents and is completely potty trained~ Yes!
She takes, Calm a relaxing magnesium supplement by Peter Gillham.  This balances calcium intake and restores healthy magnesium levels.  Thus the result is a calmer body and less ridged tight tone and spasticity.   I make three ounces each morning with a teaspoon of powder and as the drink cools, she takes sips through out the day.  Jewel calls this, 'terrible water' because of the taste but it has an amazing calming affect on her body's muscles.
She has made some huge strides in math, finally showing a comprehension of simple addition.
When she does not understand, she is quick to tell us, "don't get it."
She is medication free.
She lives at home and is able to home school.
She has a friend Ava, whom she loves :)
Her temper tantrums have subsided because she is able to tell us what she needs and we can mostly understand her speech now.
She is bluntly honest.  When we were talking about my orange sparkled painted toes, she said; "look like doo doo, sorry.  I like dark purple better."
I am grateful for Jewels delight in Christmas and her ability to beg for the Christmas lights to go up.  She found a co-conspirator in Raven and two weeks ago the Christmas lights were hung off our lanai/balcony and inside our living room.  Every night she demands that the, "out side lights on, lights on please!"  She had the lights up in the beginning of November and she had Makena write her Christmas list for her.  Days ago she got some one to hang the stockings up.  She can be so focused and a little task master, as she daily calls for; "play doll, dance!"

I am grateful for my family who is committed in keeping Jewel healthy, happy, strong. -Thank you Gary, Makena and Raven.
I am grateful for the gift of prayer and miracles. -Thank you to all those who have and still keep Jewel in their prayers, thus constantly cover her.
I am grateful for how she has changed me into a better person. -Thank you Jewel.
I am grateful for those professionals who have taught us all how better to help her. - Thank you Carol, Susan, Miguel, Crystal, Beth, Mathew, Angela, Angie, Amanda,... and some I can not recall at this time.
I am grateful for those in our community who have come along side her to help her.  Some do not charge for their services because they want to help and they believe in her.  -Jimmy, John, Kim, John C., Cindy
I am grateful for Jewel's dream to be a Hula dancer.
I am grateful for Cindy taking Jewel horseback riding years ago and teaching us so much.  She tirelessly has come along side us and pushed us all.  She was the reason Jewel go to achieve her dream of riding in the fourth of July Rodeo parade!
Thank you for the team that helped Jewel and Cookie Dough aka Billy in the parade; Kandi, Cindy, Carie, Yvonne, and Raven.
I am grateful that Cookie Dough still is able to take Jewel riding on his back.
I am grateful that our neighbor is happy to help lead the old horse so that Raven and Jewel can keep on with our Hippo-therapy. -Thank you Lindsey.
I am grateful that the owner of the horse believes in Hippo-therapy and has helped us keep Jewel's hips healthy.  She has never charged us, she just opened her heart to us.  -Thanky you Kandi.
I am grateful for the couple who bought Jewel her gait trainer.  -Thank you Gill and Marian Levitt.
I am grateful for Jewel's dog Grace and those who trained her and us at HCI, Hawaii Canines for Independence. -Mo, Kate, Kathy, Elise, Kimmy, Donna, ...
I am grateful for Camp Imua and the experiences it has given to Makena, Raven, Jewel and myself.  Thank you Imau Family Services all the staff,  sponsors & donors.
I am grateful for all the lessons and trials for they have brought us all closer as a family and as a community.  We have grown stronger, kinder, more compassionate, more patient, more understanding, filled with more joy, laughter and forgiveness and so much more.
I am grateful for Shriners and Dr. Pellette.
I am grateful for Dr. Mc Donald.

I am grateful for today and all the gifts it brings with it :)
Let us take nothing for granted for even the smallest act of kindness can make the largest impact!

Velva soft weighted pressure vests

9/21/11 Wednesday,

We are looking into getting Jewel a weighted vest.
This vest can act like a pressure vest due to the design.  It velcrows together at the sides and on top of the shoulders, making it easy peasy to put on.  You can make the sides and top snug thus increasing the pressure and helps with calming.  I figure that we can put in either weights or ice packs in the inside pockets to cool the child or add weights for sensory proprioceptive feedback and stability.

 http://www.velvasoft.com/velvasoft-weighted-vest.html

This weighted vest is made of koolnit technology, looks like the top vest but helps with children who tend to overheat and children with cerebral palsy tend to overheat.  When children can not regulate their temperature they can dehydrate thus risking hospitalization.  The Koolnit is 6.8oz 100% polyester mesh fabric that is light weight, durable and washable. 
http://www.velvasoft.com/koolnit-weighted-vest1.html

Seems like e-bay and amazon have used vests but not many of this brand.  An occupational therapist brought one over and it seems like a nice fit.  I am seriously considering ordering one, check it out.  Shipping to Hawaii is what kills us on this end.

used pediatric equipment for sale

9/21/11 Wednesday
I found this site this morning, this page lists used pediatric equipment for sale.

http://www.rehabequipmentexchange.com/pediatric_equipment_for_sale

the Zaky pillow calming hand

9/20/11 Tuesday
Have you heard of the Zaky hand?
It is more than a pillow an amazing hand with healing results.


http://www.nurturedbydesign.com/en/thezaky/parents-healthy.php

I just remembered about the Zaky hand when I was researching a couple of days ago.
I am looking to purchase a used Velva Soft pressure weighted vest sized Small.
Then I remembered about the Zaky hand, it has an amazing history, design with so many helpful results in the neonatal care unit and with babies in general.  I want to get a used one for Jewel, new from the site is spare change short of $100 and can be purchased on Amazon for much less.
It has clinical studies and evidence based that this hand calms the child, helps reduce Apneas/bradycardia, promotes brain development with deeper sleep, aids with self temperature regulation, children cry less, feel safer, helps with correct positioning when the child is sleeping or in a car seat, and much more.
It is designed by a parent which makes it perfect in my eyes.
My friend had one given to her baby in the NICU at Kapi'olani hospital a few years back and she said it worked.  She would keep the hand on her to pick up her scent and then leave it on her son when she went to go  pump her milk :) nice hey!  Hospitals can opt to have the Zaky hand in their NICU and full term nurseries.
I have Jewel sleeping with me and most of the night she is on one of my arms and I thought I may just try get a used Zaky hand to see if this will help her and give my arm a rest, at least for part of the night.
The hands come in different colors and are filled with some sort of safe beans that will not smother the child.  Go check it out, they even have the Kangaroo Zaky for home and hospital Kangaroo Care!  Awesome!!  And for you crafty people out there who can not afford the prices of this hand you should look into making your own!  I do not know what you can fill it with but buck wheat comes to mind, they have great buck wheat pillows out there that people use, they stay cool all night and have some weight to them.  I may try this myself.  We all need a helping hand.

2400 Spirit Adjustable Positioning System APS Car Seat

2400 Spirit™ Adjustable Positioning System™ (APS™) Car Seat
US Patent # D636,190 S

Additional Photos

Columbia Medical has redefined the adaptive car seat industry with the launch of its new Spirit 2400 Adjustable Positioning System (APS) Car Seat that features optional swing-away trunk and hip supports normally found only in complex wheelchair seating systems. The Spirit APS is designed for users between 25-130lbs., and up to 66 inches in height. It comes standard with features such as soft-padded head support, low profile sides to make transfers of passengers easier, plush machine-washable upholstery, 5-point harness for safety and a recline bar to provide optional recline (tilt). Also, installation is made easier as the vehicle shoulder belt can be used as the tether in most installations.
For users requiring additional positioning, the Spirit is the only car seat that offers swing-away trunk and hip supports that are individually adjustable and can be fitted exactly to the user's specifications. The support assemblies, along with the pads, can be ordered in various sizes to accommodate varying trunk and hip widths. The swing-away latch mechanisms enable a full 180 degree range so that they swing completely out of the way during transfers of the individual in and out of the seat.
The Spirit was designed to enhance the lives of children with special needs by providing a car seat for support and comfort. Columbia Medical invites you to "Let the Spirit Move You.(TM)"

MSRP: $995.00

2500 therapedic integrated positioning system IPS car seat

2500 Therapedic™Integrated Positioning System™ (IPS™) Car Seat

Additional Photos

The first choice of parents and therapists for the safe transport of  individuals with disabilities. The Therapedic Model 2000 accommodates individuals weighing between 40 - 130 pounds and between 54 - 66 inches in height.

MSRP: $1,734.00

200 therapedic integrated positioning system IPS car seat

2000 Therapedic™Integrated Positioning System™ (IPS™)Car Seat

Additional Photos

The first choice of parents and therapists for the safe transport of individuals with disabilities. The shell sides, along with positioning pads, provide "integrated" lateral support. The Therapedic Model 2000 accommodates individuals weighing between 20 - 102 pounds and up to 60 inches in height.

MSRP: $995.00

car seat links

Here is another helpful link on car seats,
http://pediatrics.about.com/od/carseats/a/special_needs.htm

I am finding that almost all these special needs car seats start at $1000.00-$3000.00 plus shipping.
Unless you can find one used or use a regular car seat and custom fit it to your child with rolled up towels, and small pillows and neck pillows.  Yes all this is extra work and will make the child hotter but this is what we have done for Jewel all along.  We have never had a special needs car seat for her.  Up until now she has fitted into regular car seats with rolled up towels, folded towels and her sisters in the back seat giving her support.  They help re position her, put her legs in criss cross position when her hips are spasming and they put her head back in the car seat when she flops out.  God bless sisters!

... still looking at car seats and cost

http://pediatrics.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=pediatrics&cdn=health&tm=159&f=10&su=p284.12.336.ip_p1051.4.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//www.preventinjury.org/SNTtrainedPpl.asp

The Automotive Safety Program has collected a list of child passenger safety technicians who have attended the training, "Safe Travel for All Children: Transporting Children with Special Health Care Needs." Individuals who have met the requirements to instruct the training are noted with "Instructor" after their names. Select a state or all states below to view the list. on the site you punch in your state and it will give you a listing like this one for  Hawaii.

John Kaizuke Dept. of Health Hawaii State 1582 Kamehameha Ave. Hilo, HI 96720 808-933-0911 jtkaizuk@mail.health.state.hi.us

J. Mike Meyer Shriners Hospitals for Children - Honolulu 1310 Punahou St. Honolulu, HI 96826 808-216-9989 jmeyer@shrinenet.org

Jill Taosaka Kapiolani Medical Center for Women & Children 1319 Punahou St Honolulu, HI 96826 808-483-4917 jillt@kapiolani.org

Mary Jo Sweeney Kauai Community College 3-1901 Kaumualii Hwy. Lihue, HI 96756 800-742-9606 maryswee@hawaii.edu

more car seats

9/15/11
Car Seats,  we are still looking and found this one;
It is a Special Tomato car seat for the special needs child.
For those who have a bigger budget for car seats check out this site;


http://www.specialtomato.com/specialtomatompscarseatsmall.html
Item# ST9288SCS 
Price:$1,270.06
 Copied and pasted from the site; "The Special Tomato Multi-Positioning Seat (MPS) can now be used in the Car! The special needs car seat version provides proper seating support for your child that has been crash tested and is safe for use in the car. The Special Tomato Car Seat is a soft, lightweight and durable seating surface with cushions that allow for customized support. The cushions move up and down on a hook and loop track allowing for growth of your child and length of use of the Car Seat. The cushions are made from a latex free material that is peel and tear resistant and impermeable to fluids. The cushions are supported by an outer shell that maintains position. Included with the Special Tomato Car Seat is Hip-Flex® adjustment that provides 30 degrees of pivot. This provides the proper alignment of your child's pelvis while using the special needs car seat from Special Tomato. The perfect solution to your car travel needs from Special Tomato!

Why is the Special Tomato Car Seat Perfect for Your Child?

• Choose from 2 cushion sizes to lengthen the life of the car seat by an average of 7 years
• Choose from 2 headrest options:
  
  - Standard Headrest
  - Headrest with Laterals
  
• Hip-Flex includes 15 degree hip extension and 15 degree hip flexion
• 5-Year Warranty
• Small Size Weight Capacity is 80 lbs
• Made from Latex Free materials
• Impermeable to fluids
• Peel and Tear Resistant
• Included with the MPS Car Seat are:
  - Adjustable Seat, Head and Back Cushions
  
  - Seat Shell
  - LATCH Strap
  - Tether Strap ® must be used
  - Safety Attachment Straps ® For use outside the vehicle
  
• Has been successfully tested and approved for aircraft travel (FAA approved)
PLEASE NOTE: NHSTA School Bus Rules/Regulations do not include special needs car seat regulations for children over 40 lbs. The MPS Car Seat is not tested for INSTALLATION DIRECTLY INTO A SCHOOL BUS SEAT. Please note that we do offer the Push Chair Kit which conforms to WC19 standards for use with a tie down system in transport. PLEASE NOTE: The Car Seat does not come with a Footrest. The Footrest cannot be used while the seat is being used in a vehicle. PLEASE NOTE: The Car Seat cannot be used in Canada. PLEASE NOTE: There is a 10-year Expiration Date for the MPS Car Seat and the MPS Push Chair Kits for use during transportation! The MPS Seat itself can be used beyond 10 years with the Wooden Mobile Base or attached to a standard chair for more than 10 years!"

CAR SEATS

9/15/2011 Thursday
Still researching the issues with car seats;
Jewel has out grown her $50 Walmart car seat, we have found great tall supportive booster seats to replace this one but they all do not come with a 5 point harness.  Jewel needs a 5 point harness to keep her safe in the car.  Even though Jewel is 10 and tall,  her muscle control  is pretty much like that of an infant, so she needs the support of the straps to keep her in the car seat.
Special needs car seats are crazy expensive putting almost all of them out of our reach.
So we have been researching on line, on face book and asking around.

I went to our local auto parts store the other day because the owner has been a part of the drag race circuit for years.  I enquired about enlisting his help with ordering a 5 point harness and installing it in my car, since the drag racers have to do this all the time for their vehicles.  I think this is a brilliant and affordable, viable, and sustainable idea.  Someone should start this, it will save the special needs community tons of money, as long as it is done with safety standards and integrity in mind.  Someone out there should become certified to install 5 point harnesses in our cars for our children.

Britax was one of the car seats that some families mentioned on face book.

They have head safety technology and you can custom fit your child, you log in your child's age, weight and hip measurements and they will fit you with a car seat!  Pretty awesome, I love this part of fitting the car seat to your child's measurements, brilliant and logical!!!! =]
It will cost you around $400 plus shipping.  If that is in your budget or maybe you have a community of support go and check it out.

http://www.britaxusa.com/car-seats

helpful face book pages for the special needs families

9/14/11 Wednesday,

I wanted to share some of the more helpful face book pages that I have found for the special needs community;

I love EXCEPTIONAL FAMILY, they are family friendly and full of great posts, run by a family for families.

MEDICAL SUPPLY EXCHANGE, is a face book page where families advertise medical supplies they are willing to sell for cheap, some families just want you to pay for the shipping through pay pay and other posts are families looking for medical supplies that their insurance will not cover or they can not afford.  It is an amazing and creative way to help this community.

ZACK'S LIST;your pediatric equipment exchange source from Canada

SPECIAL NEEDS SWAP MEET; have to request to join

DANIELLE'S FOUNDATION, a great non profit created for cerebral palsy and brain injured children.

MY CHILD WITHOUT LIMITS

THE COFFEE KLATCH, for all special needs, lost of information.

SNOWDROP CHILD DEVELOPMENT

BEST BUDDIES INTERNATIONAL

FRIENDSHIP CIRCLE OF MICHIGAN

ONEVOICE

A4CWSN-iPad apps

MOMSWITHAPPS

LILLIE'S PAD

APP STORE

DAN HABIB; he promotes inclusion for our children in schools, he made Including Samuel documentary and others he is working on, he has conceived and promoting I am Norm campaign to redefine normal.

INCLUDING SAMUEL; documentary made by Dan Habib on inclusion.

CERTAIN PROOF; A QUESTION OF WORTH; about the documentary being hosted and screened in your neighborhood or school.

CAMP IMUA; special needs camp for Maui counties school aged community.

IMUA FAMILY SERVICES, Maui counties therapeutic servesis for birth to three years of age, they are the only early intervention available on Maui that specializes in pediatric therapies.

UNITED CEREBRAL PALSY

CEREBRAL PALCY FAMILY NETWORK

Maybe you will make a face book page that will help other families :)

..... and there is so much more, new pages being made by families daily!  It is easy to get lost and loose track of time on the computer so I go early morning when the house is sleeping and this is when I do my research.  Happy trails on the quest to connect to the large cyber community out there.