Large Elite™ Reclining Shower Chair

Good Day RettGirls!


This week at RettGirl.org we are featuring the Large Elite™ Reclining Shower Chair!


You can find this wonderful back saver in our Product Reviews under Bath / Toileting!


I absolutely love this chair and wish I had known about it before I had our insurance pay for a non mobile one.


Recently, on a trip, I watched a family of a RettGirl lift her into this chair, roll her down the hall into the shower and roll her back to her room and slide her onto her bed. She is completely immobile, and this chair has been such a great thing for them and for her.


For those of you with girls that are getting too heavy to carry and have roll in showers this product is really worth it. My friends informed me that their insurance covered it completely and it only took a few weeks from order to home. Their daughter is 5'2" and 104 pounds. She was all smiles as she rolled back down the hall out of the shower! So great to see!

No more lifting from the bed, down the hall, then lowering into a tub or onto a seat just to repeat the process all over. Makes my back hurt just thinking about it!

================================================================

From the Company Website:
NEW from Columbia Medical, the Elite™ Reclining Shower Chair Only is uniquely designed to maximize safety during bathing. Until now, caregivers and parents of children and adults with special needs have had to make up to as many as 4 or more transfers to get them from their beds to wheelchairs to bathtub and back again when bathing has been completed.


The Elite™ Reclining Shower Chair Only is a rolling shower chair frame that offers recline features for children with mild to more severe levels of physical involvement. The Elite™ Reclining Shower Chair Only offers an independently adjustable backrest and leg rest to improve positioning support for each individual that uses the bath chair. These features ensure proper positioning for even those with more severe physical involvement to be transferred directly from bed to bath chair.


The shower chair is small enough to roll through most standard doorways, making it easy to go from room to room with little effort.With its standard features, the small Elite™ bath transfer system is designed to offer optimal positioning support for children with mild to moderate levels of physical disabilities. Optional accessories can be added to increase support at the trunk, head, and lower body for children with more severe levels of physical involvement, too. The maximum weight capacity is 200 lbs. (91 kg). The small size is recommended for children up to 80” (200 cm) tall.

================================================================

Have a wonderful week!

http://rettgirl.org/2011/05/large-elite%e2%84%a2-reclining-shower-chair-only/


TerriV~For RettGirl

Crocs!

Good Day RettGirls!



This week at RettGirl.org we are featuring Crocs! Why Crocs you ask? Because they absolutely are one of the best shoes for SMO's and AFO's. Without the special needs, adaptive pricing we all know and love! You can, of course find these in our Product Reviews under Clothing/Shoes.


We came by this by way of our daughter's Orthotic Specialist. A few fittings ago she was showing us the catalog of shoes that are suggested for AFO's and telling us about the size difference when she looked down at my Crocs. She kind of nudged me and said, "You know, I think those are the best things to wear over braces."


I gave her that confused Chiwawa head tilt. "What?"


She then explained how the shoes mold over the brace for a snug fit without being tight or causing pressure sores. She even told us that between sizes we can just take a hair dryer to the inside of them for about 30 seconds and stretch them a bit more when needed.


This year when it FINALLY quit snowing I was super excited to put my own daughter's Crocs back on. Her pressure sores on the inside and outside ankle bone were better the first day and gone within a week.


I do recommend consulting with your orthotist/therapist first. If they agree for your daughter's situation, then it's best to take your child with you and try the Crocs out with the braces on. You will need to go up 2-3 sizes from her actual without-brace shoe size. Keep in mind that these shoes are going to have a bit more bounce, so if she is ambulatory it may take her a bit to get her feet back under her. It took my girl a few minutes and she is very wobbly.


Have a great week everyone.


Happy shoe shopping!


http://rettgirl.org/2010/08/crocs/





Terri V~For RettGirl

Very Special Camps

Good Day RettGirls!

With summer almost upon us we wanted to make sure all of you know about a website called Very Special Camps. You can find this at Rettgirl.org in our Product Reviews under Travel/Camps

I have checked out this site and am thrilled at all the information they have here about camps that are just for kids like ours and their families!

We have been invited to several camps over the last few years and I have always been leery. I'm just a tad over protective as I'm sure most of you are!

I do know 3 families personally that go to camps listed on this site and they always talk about how incredible they are.

At this website you can find camps that deal with specific needs or specialized therapies.

================================================================
From their website:

AD/HD Camps AIDS Asperger's Asthma Autism Burn

Cancer / Oncology Celiac Cerebral Palsy Cognitive Disabilities Crohn's Disease Cystic Fibrosis

Developmental Disabilities Diabetes Eating Disorders Epilepsy Enuresis (Bedwetting) Deaf and Hard Of Hearing

Heart Disease Learning Disabilities Leukemia Camps Multiple Sclerosis Muscular Dystrophy Physical Disabilities

Social Skills Speech Impairments Spina Bifida Substance Abuse Tourettes Syndrome Vision Impairments

=================================================================
You can also search by state:

Alabama (3) Arizona (2) Arkansas (1) California (17) Colorado (8) Connecticut (3) Delaware (1) Georgia (10) Florida (7) Idaho (2)

Iowa (2) Illinois (2) Indiana (2) Kentucky (1) Louisiana (2) Maine (3) Maryland (5) Massachusetts (10) Michigan (12) Minnesota (10) Missouri (1)

Nevada (1) New-Hampshire (3) New-Jersey (10) New-Mexico (2) New-York (19) North-Carolina (8) Ohio (7) Oregon (6) Pennsylvania (14)

South-Carolina (2) Tennessee (2) Texas (9) Utah (4) Virginia (6) Vermont (2) Washington (6) Wisconsin (11) Wyoming (1) British-Columbia (4) Ontario (6) Washington-DC (1)

=================================================================
The first thing I did tonight was go to my state and and was thrilled to see all they offer so close to home for the whole family.

I found that most have 2 staff for every 3 campers. And many have many great therapies available that include:

Hippotherapy
Hydratherapy
Sensory Rooms
Physical Therapy
Occupational Therapy
Music Therapy
Animal Therapy

As well as nursing, lifts,and total accessibility to all buildings and vehicles.

Not all camps will be the same or have the same features or activities. Please do your own research and checks on each camp you are looking into.

Good luck to all of you considering sending or taking your girls to a camp this year. If you are thrilled with a camp ... as always, please let us know so we can share your recommendation!

Good luck!

http://rettgirl.org/2009/08/special-needs-camps-website/

Terri V~For RettGirl

I Wish ... I Could Communicate

Good Day RettGirls!

This week we have a guest blogger, Kate Ahern. Kate is very familiar with Rett Syndrome and is someone we have been working close with, and has been advising us either personally or through her incredible website, Teaching Learners with Multiple Special Needs!

Last week she did a workshop in MA titled Eyegaze for Education-Women and Girls with Rett Syndrome. This week she is sharing her latest blog post with us which features a wealth of information about wish granting agencies.

Just yesterday I had been conversing back and forth with Ms. Ahern about frustration in finding a common ground with my daughter's education team, lack of funding for eye gaze devices, and pretty much anything else we may need for her.

This morning I awoke to her posting a blog on "wish granting" after her telling me there is so much more out there than many people know about. Last night she told me that our daughter's greatest wish is the ability communicate.

You can find her website at RettGirl.org under Websites, Communication, and School Stuff! We encourage you to consult her website whenever you need to learn more about anything that comes up about educating our girls!

Welcome Kate Ahern!

Wish Granting Agencies

On occasion a family will ask for information about wish granting for their child. A few things to know include that children's wish agencies generally, but not always, ask that the child be ages 3-18 (sometimes 21), have a life-limiting condition (as documented by an MD), have no prior wishes granted and be able to communicate their own desire. There are wish granting agencies in nearly every country from Canada to Pakistan to Singapore. Every state in the USA has one or more chapters or self-contained wish granting agencies. Some wish granting agencies are for specific age groups, conditions or even have to be recommended by a specific person. Let families know they can search the web, talk to their doctor, social worker or other medical professional for more information.

Here is a resource you can email or print and share:

National Agencies

Wishes for Children and Teens:

• Sunshine Foundation grants wishes to children from 3-18 who have serious, chronic or critical illnesses or disabilities and child who have survived abuse
• Children's Wish Foundation grants wishes to children with life limiting diseases up to the age of 18 (children under 3 or who cannot express their own wish enter a program called Young Minds)
• A Special Wish grants wishes for children with life limiting conditions up to age 21
• Kids Wish Network grants wishes to children 3-18 who have a life limiting condition (have granted many wishes to children with seizures, Down Syndrome, Rett Syndrome, Cerebral Palsy)
• Make-A-Wish grants wishes to children ages 2.5 to 18 who have life limiting diseases and who have not had a prior wish
• The Granted Wish gives wishes to anybody of any age who is in need of a wish

Wishes for Adults:

• Dream Foundation for adults with life limiting conditions
• The Granted Wish gives wishes to anybody of any age who is in need of a wish
• Adult Wish Foundation grants "reasonable" wishes to adults with life limiting diseases

Wishes for Senior Citizens

• Twilight Wishes grants wishes for those 68+
• Second Wind Dreams grants wishes to the elderly
• Never Too Late grants wishes to those 65 and up

Regional Wish Granting Agency Listings

• The Association of Wish Granting Agencies
• Dream Factory has a number of local chapters granting local children 3-18 who have chronic or life threatening diseases wishes
• Wish Granting Organizations Listings

Respite, Camp, Retreat and Vacation Granting

• Believe in Tomorrow has three adventure programs for bullriding, flying and racing as well as respite and hospital housing.
• Starlight Foundations Great Escapes allows families with a seriously ill child to spent time together away from a hospital
• Give Kids The World grants children with critical illnesses and their families trips to the Central Florida theme parks
• Deliver the Dream creates retreats for families who have a family member with a life threatening disease or disability

Other Agencies

• A Warrior Wish grants wishes when someone in the military or their family has a life limiting condition
• Dream A Little designs and install fantasy bedrooms for children with life limiting diseases
• Room to Dream creates custom healing environments in rooms in hospitals and homes for those with chronic illness
• MORGAN Foundation offers financial support for families to get to medical conferences and/or for families who need equipment not covered by other sources of funding

Tips!

Good Day RettGirls!

We hope everyone is enjoying the beginning of spring! ... those of us who have experienced it anyway!

This week at RettGirl.org we are featuring a Category instead of a product. Our website offers so much and we are still building ... thanks to all of you!

An extremely underused and maybe unknown category at RettGirl.org is our Tips! Here you will find those little tidbits of advice that only another RettMom knows. Through trial and error and advice from others along the way we have brought you this category to help with those "What am I supposed to do here?" and hopefully provide a few "Aha" moments.

TIPS: (here is what is there now! be sure send in your tips for us to add in!)

Paraplis Umbrella Holder for Wheelchair-Keep an Umbrella with you at all times. Right on her wheelchair

Heated Throw- Ward off the chillies after bath or preheat that bed at bedtime

Snuggie-Inexpensive buy almost anywhere alternative to a wheelchair blanket

Fun finger food-Tasty and sensory for snack and therapy time

Huge Self Inking Stamp-Help her sign her own name

Heat and Bond Vinyl For Bibs-Waterproof your own bibs at home

Diaper Doubler-5-22 oz of extra protection without the mess

Elbow Splint Tip-Homemade Brace

Toy Adapter-Adapt any top to switch accessible for only $7.95

Communication during bath time-Homemade waterproof communication board at bath time

Help with poor circulation in legs-Burt’s Bees Mama Bee Leg and Foot Creme with peppermint oil and rosemary leaf extract

High Top Sneakers -Leather for stability for those waiting on or not getting Orthodics. Crocs also work great with Afo and Smo’s.

Wall Padding – to cushion the falls

Using a TV screen for computer monitor

Litterless Juice Boxes

We are sure many of you have incredible advice you would love to share with everyone that we don't have listed. Please do so today by clicking here

Hope everyone has a great week!

Terri V~For RettGirl

Nitey Night

Good day RettGirls! And some good nights may be on their way! What is this of which I speak? Can it be? Yes it can and you can find it at RettGirl.org in our Product Reviews under Sensory and Sleep!


Do you have a daughter that falls asleep during EVERY car ride but lies in her bed tossing and turning for half the night...every night? Maybe you have toyed with the idea of hiring someone to drive your daughter around for the night?


At RettGirl.org, we have listed a possible solution - one that it is working in this writer's home! Soon that checked baggage under my eyes might look like a couple of small carry ons!


The Simmons Beauty Rest Sleep Massager!!! Can I get a "Hallelujah?" This massager turns any bed or piece of furniture into a vibrating massager! Just tuck it under, plug in, turn on and zzzzzzzzz.


I have absolutely looked forever for something that would work and have never come across anything that even comes close. The first night I was skeptical and had a real cranky pants on my hands. I had her Dad set it up, turn it on and tuck her in. I no sooner packed her bag for the next day and went back to check on her and she was snoring. SNORING! Woot Woot! Yes, I am that excited! Thinking about getting one for myself!


===============================================================

From the Company Website: Easy to install, it turns any bed or couch into a massager. Wave, steady and pulse settings allow you to customize your full body massage. Soothing motion pulses throughout your entire mattress, reducing stress and fatigue. Works on all types of mattress's and cushions, couches, chairs, innerspring, foam, or air. Any size mattress or sitting cushions.
===============================================================

I am so excited to share this with you. Here's to many restful nights to come! http://rettgirl.org/2011/04/simmons-beautyrest-sleep-massager/
Terri V~For RettGirl

Yes/No by Simplified Touch

Good Day RettGirls!

This week at RettGirl.org we are featuring the Yes/No HD app for the iPad by Simplified Touch. This app and more can be found by clicking on our iPad review button on our home page or clicking here.

Below you will find a video demonstration of this incredible app and all its features!

Enjoy!

Terri V~For RettGirl