Thursday, June 30, 2011

Should plastic therapy cups be labeled? What do you think?

SRJ cut out cups do not have the food safety symbol on them


What do you think?  I would like to know your opinion and thoughts on this matter;

I  personally like it when I go to the store to buy plastic ware or cups and see the labels on the bottom, like where it was made, if it is BPA free, is it safe for hot/cold, can it be microwaved, and is it recyclable and graded for food safety consumption.  I would like to see Sara Rosenfeld-Johnson's cut out therapy cups labeled.  Their representative does not seem to share my concern or have the same opinion as I do.  There is so much cancer in the world and a lot of research points to chemicals that leach out of the plastic cups and bottles into our water/juice.  Since these cut out cups are used for the special needs population I feel they need to have these labels showing the parents that these cups are safe and that the company cares.  A lot of special needs children have weaker immune systems and we need assurance that the cups are safe with proper labeling.  At this time the cups only have their address and not even where they were made.


Thank you
Ivana

Cookie Dough will not be walking in the parade

6/27/11 Monday
We bought Cookie Dough more of his senior food that he enjoys to supplement his alfalfa cubes and pellets that we soak.  Raven gave him a nice bath from main to tail.  His eyes seem a little red and weepy.  Jewel has been doing her speech games and snowdrop's tailored activities for her development.  We are working on her walking better in the gait trainer and it is going slow.  It is very hard for her and that is okay.  Jewel and I are learning to relax and breath deeper, this seems to help both of us when we achieve deep breathing, it takes my edginess away and brings softness to her body.    Jimmy worked on massaging Jewel for she has been very tight.  He said she had rocks in her pocked and butt.  Later on in the day when I was taking her to the bathroom she said, "why rocks in butt?!"  Then I explained to her that her muscles were so tight they felt like rocks and she replied, "don't get it!"  She is so observant and thoughtful, her little speech brings so much dimension into our world and a little insight into hers.  I am glad you can speak Jewel, keep on talking to us, we love you very much xxx
6/28/11 Tuesday
We are still having Jewel in her AFOs and wheel chair, hip-adductor brace at night, stander in the morning and gait trainer.  We had her in the gait trainer agin and are just working on stepping correctly with out loosing her posture completely and just tilting and sliding to move the gait trainer, it is hard and she likes to tell me so.  It is slow and hard work for all of us positioning her legs in proper form and range of motion but not impossible :)  We are so very grateful for her gait trainer!  Took her to the hot and cold pool this evening, she loves the water.  My life and moments revolve around Jewel and my girls and I would not have it any other way xxx
6/29/11 Wednesday
Wow, this week has gone by fast.  So much has happened and the moments to posting crept away to quickly.  Billy aka Cookie Dough is under the weather.  His eyes have been droopy and dripping with tears and his spirits a bit low.  Yesterday his front hoof seemed alarmingly sore as he hobbled on his way.  We decided right off that bat that riding him in the parade was out of the questin, I felt so many emotions well up in me.  We have become so close to this wonderful creature and it is heart-wrenching to see him in discomfort.  My friend Carrie the horse-whisperer, cleaned out his hooves and checked his legs and she was not able to see anything or determine the source of his pains.  Raven and Carrie groomed Cookie Dough and put fly spray on him, we loved on him and Jewel watched closely.  He is so shinny since his bath :)  We fed him and Carrie gave him horse aspirin to aid in his comfort.  A horse this age has more aches and pains.  The owner gave him a gentle work out the day before and this could have been too much.  Walking is all Cookie Dough is able to safely do now.  We love you Cookie Dough.  We put him in the round pen which has sand bottom and it will be gentler on his legs. xx  We decided that we would not take Cookie Dough to the parade for trailering him may be too much and detrimental to his health and recovery.  At this point he is not well and it is not safe for him or us to be riding on him.  We are grateful to all the Aunties that have made this experience possible for Jewel.  For she has benefited in so many ways already, her world has become larger and enriched by her relationship with Cookie Dough.  Her hips have been saved from another surgery, she has been able to see from way up high, hight above the crowd, high for her eyes to wander and go where her legs can not take her.   So we will wait and trust that a way for Jewel will come and if not at this time, it shall be fine, for she is just as concerned for Cookie Dough's health and well-being as we are.  If it is meant to be it shall be.  We let go and trust.  For our love and relationship with Cookie Dough is not just about Jewel's dream to ride in the parade.  Jewel's dream grew out of her Aunties caring for her and sharing Cookie Dough with her.  They  opened the door to this wonderful world of hippo-therapy, and out of this deeper relationship with them and the horse came the dream to ride in the parade.  It is not the beginning or the end all, just a blossom in the garden of love,  possibility and opportunities that were made available to Jewel.

Tuesday, June 28, 2011

helpful face book pages for cp

Mario Vittone replied to my post;

Hi Ivana,
Mario Vittone - Boating & Water Safety commented on their Wall post.
Mario Vittone - Boating & Water Safety wrote: "Ivana: Children with CP can make significant gains in body awareness through swimming, and of course, swimming is widely used as an effective muscular development activity for special needs children. Your question is about safety, particularly articles on that subject, are going to be a tough find. For now, know that closer is always better than farther away - and watch constantly. That's true for every child though."http://mariovittone.com/2010/05/154/ -this is his face book page
I am loving the positive information about the gains made in the water.  I know that the body fights gravity but in the water there is less gravity for the parts submerged.  The hot tub is great for relaxing the muscles and warming them up before stretching (but never stay too long for it dehydrates the body) and now the body awareness is what I want for Jewel, lovely!

This is a page with information on ipad apps as an educational tool for children with special needs like cp
http://a4cwsn.com/2011/02/language-builder/
http://www.lilliespad.com/


Here are some face book pages that I think are helpful to families with members who have cerebral palsy;


https://www.facebook.com/pages/Lillies-Pad/165711900130473
http://www.facebook.com/thecoffeeklatch
http://www.facebook.com/pages/Danielles-Foundation/109808883408
http://www.facebook.com/MyChildWithoutLimits
http://www.somethingspecialmagazine.com/
http://www.facebook.com/EndtheWord
http://www.facebook.com/unitedcerebralpalsy
http://www.facebook.com/pages/Snowdrop-Child-Development/117924511618593
http://www.facebook.com/home.php?sk=group_120024420466

photos from Camp Imua 2011

Here are belated photos from camp imua.
Jewel agreed to pet the mini horse's Ginger and Feather.  She felt like she would be cheating on Cookie Dough if she rode on another horse.  She enjoyed petting their noses, it is very sensory stimulation for their noses are super soft and cushiony with tickling whiskers <3  Thank you to the Piiholo stables fro bringing their horses to camp for five days, you guys are awesome xx


This is Jewel and Ava, Jewel called Ava her best friend, she met Ava at camp three years ago. :)  We all love and adore Ava.  She is very inspiring and an amazing spirit.

Smores after the camp bon fire and songs.

These lovely people took 200 people out on the water all day long on our beach day at camp.  Here is Makena and Jewel going out on Jewel's first kayak ride, yippee !

Jewel eating lunch while sporting a plumeria lei that one of the great camp caregiver's Dillon gave to her.  Thank you Dillon :)  Thank for the awesome photos Makena! xxo Mom
Gary always makes us learn the Hawaiian meanings of names that we use, so here is the definition of camp Maluhia, this is a boy's scout camp that camp Imua (to move forward) uses.
Pronunciation:
mah-loo-hee-ah
Gender:Boy Name
Origin:Hawaiian
Name Meaning:Derived from the Hawaiian maluhia (peace, serenity, calmness, quiet
Imua is an ancient Hawaiian word meaning “To go forward with Spirit"

Monday, June 27, 2011

SRJ cut out cups do not have the food safety symbol on them

6/26/11 Sunday
We just go one of Sara Rosenfeld-Johnson's cut out cups from talking tools and noticed something alarming, none of their plastic cups have food safety symbols on them, like the 5 with the chasing arrow triangle symbol representing it is safe for food and drink, and the food symbol and the bpa free symbol, why?!
I did e-mail her talking tools web-site and her blog, I think that these plastic cups that our children are using should have the food safety and BPA free symbols on them, since our children's health is at stake.  We will not be using our cut out cup because the plastic is not safe.
Please read the links below to inform yourselves about safe plastic eating ware for your children are family.  These links explain the symbols and chemicals that can leach into the food/water that you are consuming.

http://www.ehow.com/how_2124117_buy-bpafree-sippy-cups.html 

http://www.nytimes.com/2008/04/22/health/22well.html 

http://safecups.com/
http://www.hoax-slayer.com/plastic-coding-system.shtml

Sunday, June 26, 2011

AFO shoes

We are looking to buy Jeweliana a pair of cowboy boots. She would need a larger pair, than the size of her feet, that way she could wear them with her AFOs on. We haven't found a pair of cowboy boots yet, but we did find these amazing little Hatchback shoes that actually open up like an egg so you could slip the foot in it.

drowning does not look like drowning

6/25/11 Saturday
I spoke with a special education teacher and she confirmed what an occupational therapist shared with me, that a lot of children on these Islands end up with brain damage because of a drowning experience which has left them with brain damage.  It is so important to watch our children, teach them about their limits and boundaries in the water and on land.  I found this important and informative article that I wanted to share;  Mario Vittone has a face book page and a book out, I copied and pasted the article for an easy read, we need to keep our children and ourselves safe in the water.
Mario Vittone - Boating & Water Safety
http://mariovittone.com/2010/05/154/
The new captain jumped from the deck, fully dressed, and sprinted through the water. A former lifeguard, he kept his eyes on his victim as he headed straight for the couple swimming between their anchored sportfisher and the beach. “I think he thinks you’re drowning,” the husband said to his wife. They had been splashing each other and she had screamed but now they were just standing, neck-deep on the sand bar. “We’re fine, what is he doing?” she asked, a little annoyed. “We’re fine!” the husband yelled, waving him off, but his captain kept swimming hard. ”Move!” he barked as he sprinted between the stunned owners. Directly behind them, not ten feet away, their nine-year-old daughter was drowning. Safely above the surface in the arms of the captain, she burst into tears, “Daddy!”
How did this captain know – from fifty feet away – what the father couldn’t recognize from just ten? Drowning is not the violent, splashing, call for help that most people expect. The captain was trained to recognize drowning by experts and years of experience. The father, on the other hand, had learned what drowning looks like by watching television. If you spend time on or near the water (hint: that’s all of us) then you should make sure that you and your crew knows what to look for whenever people enter the water. Until she cried a tearful, “Daddy,” she hadn’t made a sound. As a former Coast Guard rescue swimmer, I wasn’t surprised at all by this story. Drowning is almost always a deceptively quiet event. The waving, splashing, and yelling that dramatic conditioning (television) prepares us to look for, is rarely seen in real life.
The Instinctive Drowning Response – so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind. To get an idea of just how quiet and undramatic from the surface drowning can be, consider this: It is the number two cause of accidental death in children, age 15 and under (just behind vehicle accidents) – of the approximately 750 children who will drown next year, about 375 of them will do so within 25 yards of a parent or other adult. In ten percent of those drownings, the adult will actually watch them do it, having no idea it is happening (source: CDC). Drowning does not look like drowning – Dr. Pia, in an article in the Coast Guard’s On Scene Magazine, described the instinctive drowning response like this:
  1. Except in rare circumstances, drowning people are physiologically unable to call out for help. The respiratory system was designed for breathing. Speech is the secondary or overlaid function. Breathing must be fulfilled, before speech occurs.
  2. Drowning people’s mouths alternately sink below and reappear above the surface of the water. The mouths of drowning people are not above the surface of the water long enough for them to exhale, inhale, and call out for help. When the drowning people’s mouths are above the surface, they exhale and inhale quickly as their mouths start to sink below the surface of the water.
  3. Drowning people cannot wave for help. Nature instinctively forces them to extend their arms laterally and press down on the water’s surface. Pressing down on the surface of the water, permits drowning people to leverage their bodies so they can lift their mouths out of the water to breathe.
  4. Throughout the Instinctive Drowning Response, drowning people cannot voluntarily control their arm movements. Physiologically, drowning people who are struggling on the surface of the water cannot stop drowning and perform voluntary movements such as waving for help, moving toward a rescuer, or reaching out for a piece of rescue equipment.
  5. From beginning to end of the Instinctive Drowning Response people’s bodies remain upright in the water, with no evidence of a supporting kick. Unless rescued by a trained lifeguard, these drowning people can only struggle on the surface of the water from 20 to 60 seconds before submersion occurs.
(Source: On Scene Magazine: Fall 2006 (page 14))
This doesn’t mean that a person that is yelling for help and thrashing isn’t in real trouble – they are experiencing aquatic distress. Not always present before the instinctive drowning response, aquatic distress doesn’t last long – but unlike true drowning, these victims can still assist in their own rescue. They can grab lifelines, throw rings, etc.
Look for these other signs of drowning when persons are in the water:
  • Head low in the water, mouth at water level
  • Head tilted back with mouth open
  • Eyes glassy and empty, unable to focus
  • Eyes closed
  • Hair over forehead or eyes
  • Not using legs – Vertical
  • Hyperventilating or gasping
  • Trying to swim in a particular direction but not making headway
  • Trying to roll over on the back
  • Appear to be climbing an invisible ladder.
So if a crew member falls overboard and everything looks OK – don’t be too sure. Sometimes the most common indication that someone is drowning is that they don’t look like they’re drowning. They may just look like they are treading water and looking up at the deck. One way to be sure? Ask them, “Are you alright?” If they can answer at all – they probably are. If they return a blank stare, you may have less than 30 seconds to get to them. And parents – children playing in the water make noise. When they get quiet, you get to them and find out why.

Saturday, June 25, 2011

Makawao Paniolo Parade

6/24/11 Friday
It is official now, we have signed up, paid and went to the mandatory meeting for our team to be part of the Makawao Paniolo Parade.
Where: Makawao
When: Saturday, July 2, 2011 at 9am!  Whoop!
Who: Jeweliana's team will be made up of; Horse - Cookie Dough
Riders - Jewel with sister Raven as a back rider
Side walkers- Carrie, Yvonne and Ivana (mom)
Leader -  Cindy will lead Cookie Dough aka Billy in the Parade
Kandi the owner will be riding Flash or Blue as Jewel calls him next to us to give support!
We will be representing cerebral palsy and hippo-therapy awareness.
Hope to see you there :)

Friday, June 24, 2011

Turning over rocks

6/22/11 Wednesday
The funds went through to the UK based group called Snowdrop.  They wrote up a plan for Jewel and e-mailed it to us.  I forwarded it on to a couple of therapists who have/are working with Jewel for their feedback.  We are studying the evaluation and starting the activities.
Jewel received a package in the mail from her friend Sophie in England, it was a music cd of Muddy Waters at Newport 1960.  Thank you Sophie :)  Jewel and all of us enjoyed listening to it, Jewel is used to classical and more pop music now due to her sisters.  This was a nice change of tone and pace.
Music is the silence between the notes - Claude Debussy
Carol came to work on Jewel today using her myofascial release and Jewel's body relaxed and responded to Carols work.  These are the silent moments between the notes of Jewel's song.

6/23/11 Thursday
I checked out the web-site called Danielle's Foundation and I found it to be legitimate.  My girls were skeptical but you have to try to turn over as many rocks as you can to find what you are looking for, at least when looking for bugs.  I am not looking for bugs but I have to try and putting forth the effort, this is what it takes, even if I come up empty handed then at least I know that I tried.  I am looking for help, inspiration and treasures in friendships for Jewel.  Trying to help her find her path in life, to actualize and fulfill her dreams.  Please go and check out Danielle's Foundation and view their web site if your child has cerebral palsy or suffers from a brain injury.  The sight is positive, sensitive, helpful and new.  It is user/parent friendly and not your typical archaic-medically-drug and surgery driven site.  I am sure as they grow and their name gets out even more they will be able to bring more help, hope, education, ideas, and stories together for families like ours.  A big Mahalo to  Danielle's Foundation.  I am hoping to apply for a grant for Jewel to receive more therapy for her.
This evening we went to the horses.  The session was good but our expectations for Jewel were high and she was feeling the pressure.  We always try to treat Jewel just like our other children and she is just like our other children but different.  There is such a fine balance before she gets defeated and gives up, walking that line with her is challenging at times.  I have to respect and understand her limits, yet I have to encourage and motivate her to aim higher, reach farther, dream bigger, try with joy and a song in yur heart.  This evening was hard for her, it was hard getting her head up and she almost gave up. Raven was a tough back rider this evening, but the Rodeo parade is just days away and she has to be as ready as she can be or we may have to reconsider.   Oh, how I miss our old O/T Crystal, she was so talented and able to get Jewel's body to respond.  She understood so much more than we do and we keep trying but some times it is just not enough compared to a person who is educated and capable to help reach the goals or stability desired in Jewel's body.  I printed and underlined, then highlighted the Sara Rosenfeld-Johnson's approach to Oral-motor feeding and speech therapy.  I read and triple read the paper available on line as a pdf.  I learnt that Jaw control comes before upper and lower lip control.  Now I have to figure out how much Jaw control Jewel has and what we need to do to get her more Jaw control.  Stability in the Jaw comes as a precursor to speech and feeding  and other more complex motor skills.  So the paper says, "... the Jaw is the basis for motor speech development."  Back to fun and games for Jewel, this is her way of learning.  I just have to keep the good times rolling in conjunction with the therapy and all will be well.  Maybe this is one of the secrets to a healthy life. :-)



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Wednesday, June 22, 2011

Grant Program

I found this information and I plan to apply but I also want to share the information with you all.

http://www.daniellesfoundation.org/grant-program/how-to-apply/


Danielle’s Foundation Grant Program: How To Apply

Funding For Children with Cerebral Palsy and Brain Injury

                                                                                                                                                 Apply For A Therapy or Medical Equipment Grant Today! 1-800-996-1148

                                                                                                                                                                                         Danielle’s Foundation realizes how difficult it is for parents of children with cerebral palsy and brain injury to get their children the therapies and medical equipment they desperately need. In an effort to provide financial assistance, each quarter one deserving family will be awarded a grant of $2,000 or more (depending on the funds available within the foundation) to help get this necessary care that insurance has denied.
The grant will be given out four times a year, with the following deadlines:
March 31, 2011June 30, 2011September 30, 2011December 31, 2011
Your child must have a diagnosis of cerebral palsy or brain injury, and you must be requesting the grant for assistance towards a specific therapy or medical equipment. For more information and to receive an application please contact our toll free hotline 1-800-996-1148 today!

Straws and speech

6/21/11
We had a great speech session, whoop!
I hate it when Jewel can not join in on the games, well today was different.
We did the whole relaxation, breath, feel your body relax, and as soon as Jewel shifted we started.
Straws were the tool.  We started on lip puckering and closure, then I opened a treat to encourage sucking but it was too stimulating for Jewel and we lost her 'soft' body.  Then I rubbed the candy on her lips and she enjoyed licking it off, this is all fun but hard work.  Then the games begun, I used a tray that a friend gave for us to use.  It has a similar surface to a white erase board so I used the dry erase markers on it to draw horizontal lines in different colors to indicate new placement and distance.  Then the speech pathologist used three white and one pink cotton ball, we lined them up the middle line and Jewel had to blow them as far as she could.  Two goals, she needs to look and keep lip closure on straw to blow.  As each cotton ball moved into a different zone we cheered her on, and she got it, she blew them all to the end.  Then she said, "again!", with a great big smile.  The pink cotton ball is heavier and no problem, she got it over the line as well.  She mastered the game and played the second round even faster.  This is all Sara Rosenfeld Johnson techniques and ideas.  There is a lot of purpose and gains to be made using a simple straw.  I will play against Jewel and she will teach her sisters, what fun playing together.  Thank you!

Rodeo application

6/20/11 Monday
We drove up to submit Jewel's Rodeo applicatio, for the Makawao Paniolo Parade.
It will be the 46th annual 4th of July Makawao Paniolo Parade.  This year's theme is "Nana I Ke Kumu", Look to the Source.
We signed up in the, most unusual entry.  I figured that there is only one Jewel and there are not many children with cerebral palsy riding with their sister, who is their back rider, in this parade.
Good luck Jewel!

Access Sport America

6/19/11 Sunday
We spent most of this day at the pool with our friends.
Jewel played with her friend John and they had too much fun with empty water bottles.
Friendship is a treasure and we cherish our friends.
Then Jewel's occupational therapist came for a session in the water, hydro-therapy.
We did hot tub first then into the pool.  Jewel pushed up on a small boogie board and watched John play with Raven and his mom.  Jewel forgot that she was working so hard because the motivation was there.  Our O/T was encouraging as she shared all the things she has noted in Jewel's progress.  Keep it up Jewel, I see that fun is your teacher.  We will have to keep the good times coming :)
We met a lovely family during the week and hung out with them a bit on Sunday evening.  Their son has cerebral palsy and is highly fit, funny, handsome, able to sit and walk with his father's aid, and much more. They are a lovely family and they give back so much to their communities.  Below is their website, please go and check it out;

AccesSportAmerica, a national non-profit organization, inspires higher function and fitness for children and adults living with disabilities through high-challenge sports and training. 


http://www.accessportamerica.org/

What I learnt from this family  is that this is a life time long distance race with our children.  Enjoy the travel and share with other families when you can, love your child and embrace each day fully.  Train and work hard with the attitude of a life time approach.  Eat for your health in mind, train for a life time.  We have found nice new friends and I wish them the very best in life.  Their road is filled with a million ups and they do have downs and we are blessed to have met them.

Every bit counts

June 15th Wednesday, 2011
A very hot day.  I spoke with Jewel about her new comment, "hard" for everything is hard for all of us until we are taught and do the work it takes to obtain mastery.
Our physical therapist came and worked her mayofascial release on Jewel.  Carol did a lot of deep stretches on Jewel and found her to be over all tolerant and relaxed.  She is so talented and she left Jewel so relaxed and stretched and calm.  Bless you Carol.
I have been taking Jewel to the hot tub at night and getting some great results, her muscles relax and she enjoys this, then I do some gentle stretching on her legs.  Water is very healing, to drink, to bathe, and to relax.
June 16th Thursday, 2011
Jewel went to her body worker and he is happy with how much her body is relaxing and opening.
He thinks we should come every second thursday from now on.  He is amazing, this man has been working on Jewel once a week since December and he does not charge us, it is his gift.  Thank you John!
We went to the horses with Cindy, Jewel go to ride by her self and it was difficult.  She did not do what we would have liked her to but non the less she did ride for a while.  When she came off the horse she was so hot and relaxed, her circulation benefited greatly from this ride and her hips as well.  Thank you Cookie Dough and Aunty Cindy, we love you and are so grateful.
June 17th Friday, 2011
Anticipating the big girls coming home brought such joy.
Today was a day of laundry and celebration.  Makena and Raven were very tired but happy.
6/18/11  Saturday came and went too fast, I can not remember much of this day but I am sure it was a good day.

Sara Rosenfeld speech pathology

June 13th Monday, 2011
We loaded up the car and came back home.  With upside down smiles we silently drove back home.  It was sad to leave her sisters and friends, new and old at camp.  We unloaded the car up three flights of stairs and I went to pick up Grace.  Jewel cried off and on in the evening.  The house was so quiet compared to camp and our hearts ached.
June 14 Tuesday, 2011
Jewel had a great speech session with a new speech pathologist.
She opened a new window for us, she uses Sara Rosenfeld's approach in speech pathology.  She uses straws as a main tool.  She said the Beckman oral approach was not best for Jewel because of her high tone.  Beckman uses a lot of hands on manipulation.  First she spent a lot of time just encouraging Jewel to breath and feel the sensation of being relaxed.  Then she introduced the straw.  Jewel is comfortable and familiar with straws and she caught on fast.  Straws are fun and non threatening, we worked on lip-rounding and hope to see improved tongue retraction, speech clarity will be a side effect.  I am not familiar with Sara Rosenfeld's approach and I am happy to be learning new information and tools to help Jewel.
 www.talktools.com/site/files/.../SRJ_Therapies_Article.pdf



kayaking

June 13, 2011 Monday
Waking up is refreshing amidst the clouds.  Jewel and I shared a bunk on the bottom and she hogs the bed, next year I want to sleep in a tent, then maybe I'll get some sleep. :)
Every morning at camp is started with a circle time, and they have their own way of blessing the food and we file in to the cafeteria.  We always take our breakfast meal outside where it is calmer and more serene.
Today is beach day with tons of activities awaiting at the beach.  First we board five buses to get to the beach, thank goodness Ava and Jewel's chairs dismantle and fold up.  Awaiting at the beach are the flower lei makers and the bubble entertainer.  Soap bubbles are such fun.  Then the kayaks arrived and this company took children out all day.  (Remember there are 52 campers and 150 volunteers)  They even took Jewel out, Makena sat with Jewel for I would have said for them to turn back far too soon.  Once they were vested up with life vests off they sailed like a fish into the ocean.  Then my heart sang with joy and then they left my sight and I cried with joy and fear, it was all good living in the moment.  Jewel and Makena enjoyed them selves and Jewel's smile can always launch a thousand ships.  Jewel kept wanting to touch the water.  They had a life guard on duty at the beach and a craft  corner, a place to make string leis and flower leis.  Lunch was served and Jewel ate a whole turkey sandwich.  Then they commenced with their annual cardboard box boat building and race.  Jewel kept saying, "not fair, not fair" because she wanted to help and race.  But it was just for the boys until the craft lady helped one of the girls put her lotus boat together!  Jewel wants to do so much and her body just doesn't comply but we have to find a way to circumnavigate to her desired destination, regardless of her physical condition.  Beach day was amazing and left us all satisfied and full of fun.  Most of us slept on the bus ride back to camp.  Thank you to all the volunteers, staff, organizers, vendors and donors who made this blessed camp happen one more year, this is Camp Imua's thirty fifth year!  Love, gratitude and blessings from our hearts to yours. xx

Best times

Oh my I have fallen off the Blogger's horse and I figure I better get up or I'll never get around to posting again...
So here is a short capsule;
June 10th Friday, 2011    The big girls go off to Camp Imua as camp leaders, this means you arrive a day early to set up and stay a day late to strike the camp.  Gary went to pick up Raven in the evening for she had her ACT test in the morning.  We went to the pool with Jewel in the evening and she loved the night time, she kept telling us to, "be quiet, and look at moon and tars."

June 11th Saturday, 2011     Raven wrote her ACT test and then back to camp.
Jewel was missing her sisters tremendously and Harry Potter books on cd came to the rescue.  She has finished listening to six of the books now.

June 12th Sunday, 2011     I dropped off Jewel's service dog at a friend's home.  She looked after Grace when she was a puppy and nursed her back to health after she ate something that almost killed her.  Grace was with another service dog and a family that loved her.  We go to camp with wheel chair, too many things and gait trainer.  Makena is there to greet us, she is on our team and has made a lovely welcoming sign with Jewel's name on it.  If ever there was a heaven on earth this is the place.  It is a haven of possibilities, amidst community of friends.  Jewel got to bunk with her friend Ava and Jewel got to wear a permanent grin.  Sarah was there to greet Jewel as she always does in her special welcoming way.  We are happy to be at camp.  Off to the Arts and crafts pavilion.  Jewel got to make necklaces for Grace and Sarge and a key chain for her Da.  She picked out the colors and beads and Makena and I threaded them on.  Then we visited the horses, Jewel felt like she would be cheating on Cookie Dough if she rode on a different horse.  She settled for just petting the minnies on their noses.  Thank you Feather and Ginger.  Then to dinner and the food was healthy and tasty this year, real mash potatoes from potatoes, salads and tons of fruit for snack and at every meal, awsome!  Thank You to all the kitchen helpers and volunteers and people who donated food!  After dinner it was off to the bonfire, and we sang camp songs in rounds as the evening grew snug around us, flash lights and fire entertained us, as songs filled our hearts.  To end this wonderful event we roasted marshmallows and ate smores. ( graham cracker with a slice of chocolate and hot melting marshmallow with another graham cracker)
After this sugary treat it was off to bed, but Ava and Jewel would not shut their eyes.  They talked, and giggled, colored and played with their flash lights.  Best times xxx

Saturday, June 11, 2011

dance info

so you think you can't dance,
http://www.mychildwithoutlimits.org/?page=dance


"Lee says dancing is not only a great form of exercise for children with disabilities, but it also has many social benefits.'"
"Emotionally, dance stimulates the 'feel good' endorphins through the incorporation of music and self expression," she said. "It is a way to mix socially with other people in a fun filled relaxed environment. We also include "buddies" which gives all participants the chance to meet new and interesting people from all walks of life."

Keep dreaming, keep believing, keep trying, keep living, keep smiling, keep on doing what you do best.

wishing for a tail-

6/9/11 Thursday was all about packing and buying snacks for camp.
Jewel wants to take all her barbies and is all about packing her black suitcase.  She has her own ideas for packing and what she would like to bring and ware.
Makena practiced taking Jewel's gait trainer apart, she has convinced us to take it for the two days that we will be at camp.  So we will be taking wheel chair and gait trainer.  Thank you Makena for you have a giants and champion spirit.
The occupational therapist came to do another session with Jewel on strengthening for chewing and swallowing.  All the stretching was done on the face, cheek and lip area.  The stretches were slow and gentle. I got a lolly-pop from the health food store for this session.  The therapist worked on assisting Jewel to be able to "suck" the lolly-pop, the rules were simple, no biting.  Jewel had to first find the 'food' and keep that eye gaze.  This was new to Jewel but she caught on fast.  We are meant to look at the food first, this is done with the eyes and the eyes will help Jewel learn to position her head in a safe neutral position,(mid-line).   The eyes are meant to lead the activity of eating.  As we see the food we start to salivate and this starts the digestive process right in the mouth.  Jewel has to learn to keep the eye gaze and by doing this she will strengthen her eyes and learn about the space in front of her.  This is about spacial awareness.  We encourage complete lip closure and we give her time to swallow.  We encourage nose breathing, and give her little rests.  The therapist guides Jewel's hand with her hand-over-hand and gives her support on her elbow.  Who knew that so much was going on while sucking on a tasty treat!  This took about an hour.

6/10/11 Friday morning took the big girls to camp, as camp leaders there is a lot more set up & organizational work involved.  This has been an emotional morning for Jewel, she cried this morning.
She said, " I love Makena and Gecco (Raven), I miss Makena and Gecco."  Then she cried, "I need Gecco and Lala, (Makena.)  We talked about camp and how long until we will see the girls again and Jewel was not liking it.  We talked about her sisters leaving for college one day and she said, "forever."  We will have to work on this concept a little at a time,  but thankfully Harry Potter came to the rescue.  She has just finished listening to the unabridged Harry Potter and the Order of the Phoenix, two more books to go!  Raven had to be picked up from camp at dinner time because she has a test to write tomorrow morning.  We went swimming in the evening.  Jewel kept saying, "be quiet and look at moon, look at tars (stars)."  She was fascinated with the moon and night sky.  We all pretended that we had tails, Jewel loved this.  I think this is why she loves and identifies with mermaids, the fact that they can not walk just like her. We decided to look up at the stars and make a wish, Raven told Jewel not to tell us or it will not come true.  Jewel just had to tell us that she wished for a tail.  After 15 minutes outside in the water, Jewel said,"scary, night time."  It was very quiet out and the small noises sounded and felt different to day time noises.  Being in the water with out constraints and less gravity is a good thing for Jewel.   I realized that I do not take Jewel out at night much and I think that she quite liked it, I will have to do this again.  :)

6/11/11 Saturday and Raven is off to write her three hour test.
Makena is loving being at camp with her friends, today the other caregivers and volunteers arrive.
Tomorrow we will go with all the rest of the campers.  More packing today and Jewel keeps talking about making a necklace for Grace, her dog and about Ava her friend.  We are ready and excited for camp!!  Thank you Camp Imua and to all those who financially supported camp and to all the volunteers.

Camp WAMP for kids with disabilities

I found some a sight for summer camp;

Ten years ago, when Steve Wampler found out that his childhood camp was closing, he and his wife set up Camp WAMP (Wheelchair Adventure Mountain Programs). “Wamplar Kids” is the name that camp participants are known by. Wampler believes “that kids with physical disabilities can do more than they can imagine if they put their mind to it.” Part of his goal for climbing the mountain is that people would learn more about the Steven J. Wampler Foundation. Part of Camp WAMP’s mission is that no child would have to pay for attending.
http://blog.ncpad.org/2011/02/28/steven-j-wampler-foundation-helping-all-children-experience-summer-camp/#more

http://www.wamplerfoundation.org/
Steve Wampler’s extreme quest to be the first person with Cerebral Palsy to climb El Capitan in Yosemite was an achievement in human endurance. 


http://www.youtube.com/watch?v=IERFjVK4Z84&feature=player_embedded
Wampler Kids provides residential adventure programs for youth with physical challenges such as Muscular Dystrophy, Spinal Cord Injuries and Cerebral Palsy in the High Sierras of California.


Every day I am so inspired by people's ability to break down the walls of limitations and help others live fuller lives.  The way Steve lives his life and gives back to children at his camp is amazing.  I guess we can all do more than we realize and that is a good thing!

Wednesday, June 8, 2011

be happy :)

6/8/11 Wednesday

Jewel wants to say, "Be happy.  Don't be sad, be happy."

I viewed the x3 video clips from the cerebral palsy conference in Paris, by Frederic Gues, Essentis and I absolutely love their holistic approach.

I viewed the spastic cerebral palsy clips from CHOC, (children's hospital of orange county) and found them informative.  I did learn a lot and at times found myself looking where Jewel would be placed on their charts and this made my heart break.  Most times I just see Jewel as a whole person and then there are the fractured moments where I see her in her medical condition and label and these times feel cold and isolated, they hurt.  But I am now more able to move past these moments back into the warmth of her smile in the present.  I am grateful for Jewel and the wonderful and complexed nature of the whole of her being.  I love all my children.  They rock my world.

We went to see the horses today.  My friend Carrie came along, she is good with horses.  Cookie Dough seemed sore and stiff so we ended up stopping our work with him and just enjoyed our time together.  We took care of Cookie Dough and Carrie worked with one of the other horses.  Jewel just enjoyed watching and being in the garden.  It is important that we listen and watch the horse, this is the way we take care to avoid accidents.  Taking care of the horse shows that we appreciate all that he has give to us and we show care, respect and gratitude.  Hippo therapy is a wonderful therapy but sometimes we need to allow ourselves just to be in the moment and enjoy being alive with out putting a task on to create some sort of meaning.  Our lives are meaningful just as they are.

I hate labels but we use them to identify and learn more about each other's needs.  Some times labels tend to isolate and alienate us from each other.  Jewel has the label cerebral palsy, this makes her different to some people, but she is not less.  If you spend time with her you will find that she is more like us than we realized.  It is important to always take the time to see the whole person and not just the medical label.  And remember that love, joy and laughter is always good medicine.




Tuesday, June 7, 2011

spastic cerebral palsy conference, CHOC 2009

spastic cerebral palsy conference video clips found on youtube from CHOC, (children's hospital of orange county);

part 1; Dr. Michael Muhonen
http://www.youtube.com/watch?v=cYHW5QwnePE

part 2; Dr. Samuel Rosenfeld
http://www.youtube.com/watch?v=ocIOCJXWzeo&feature=relmfu

part 3; Carolyn Huang, P/T and Melina Dumpit, O/T
http://www.youtube.com/watch?v=xYWKmzm1RYQ&feature=relmfu

part 4; Lauren Miller Beeler, P/T, PCS
http://www.youtube.com/watch?v=dAcEMQTHhTc&feature=related

I plan to watch these but I will post now to be able to share. :)

6/8/11   I just viewed the first part of the conference, it is interesting and informative.  It is totally opposite to how we like to treat Jewel.  Their approach is very invasive, we tend to be more conservative and holistic in our choices and approach.  We use food and therapy instead of surgically implanted medicines.  I am glad that we have so many choices.

part 2, is very informative and the power point moves rather fast and there is a lot to comprehend, again it talks about surgeries which in most cases would be last on the chain of help available.

Part 3, focuses on physical therapy and occupational therapy, they briefly touch on other modalities and touch on myofascial release.  I can comprehend and relate to this segment because we have been doing this with Jewel for so long and I understand the benefits.

Part 4; talks about life style and life span/prospective & management.  They acknowledge the team approach and the key being the family.  Interesting and meaningful.

I was impressed by this conference and the body of knowledge presented.  They are in a field where they daily care for our children and I could still see Lauren Miller Beeler's passion for this community.

Thank you for who ever posted these video clips on Youtube, they are very educational and  worth watching.

Taking care of Cookie Dough

6/7/11 Tuesday

Jewel woke with a wet diaper and had an accident, I share this to show that accidents happen and life is not perfect.  All in all Jewel's progress is wonderful and we will just carry on, it is still a success on the home front of being potty trained.  The big picture is what I will focus on. :)

Four days until camp!  Yes, Jewel and the girls are so excited, Jewel and I will go to Camp Imua for two days and the girls will go as camp counselors and care givers.  Makena and Raven will be there a day before and after for set up and shut down, besides the five days they volunteer.

Today we went with Cindy to ride Cookie Dough and take care of him.  He looks good, and it is always nice to see him and the other animals.  Besides his regular grooming and feeding the horses, Cookie Dough got his first shot in a series of seven.  Cindy administered the shot and he just stood there like the gentle giant that he is.  We love you Cookie Dough, and thank you Cindy and Martha.  This is a gift from of Martha and it is to help with his arthritis.  Jewel rode with Raven for 15 minutes.  Cindy has come along side Jewel for years now, she has consistently taken Jewel riding.  Now she is taking care of Cookie Dough aka Billy.  We were talking about the rodeo today, and how soon it will be coming up.  Being a part of the procession will be up to Cookie Doughs health and his owners. Be well, take care, keep dreaming and doing the good work.xx

Paris conference - cerebral palsy 2009

Conference on cerebral palsy - Paris 2009

part 1;
http://www.youtube.com/watch?v=1lHZZAeLy7c

part 2;
http://www.youtube.com/watch?v=D2XbF2dYFCA

part 3;
http://www.youtube.com/watch?v=Mu4vS3XaMGI&feature=related

I found these on youtube this morning and wanted to share, I have not had time to sit down and watch but  I will as soon as I am able to.  It is in french with english subtitles.  I wanted to post this because it may help some one and I did not want to loose the clips.  Be well and remember knowledge is power but love is part of the ingredient.

"The Essentis method is an intensive, efficient and personalised program adapted to the patient suffering from Cerebral Palsy or other neurological disorder.

During the sessions, the patient will go through different workshops in which his condition and symptpms will be evaluated by the different therapists of our team (osteopaths, acupuncturists, homeopath, psychologist...) to establish a personalised program adapted to his needs.

The therapists work together within the centre which allows a great reactivity regarding the patient's daily needs.

The approach is holistic: the patient is considered as a whole (physical mental, emotional and social elements, current symptoms and past medical history...).

We emphasize the practice of « intensive » osteopathy: numerous dysfunctions that could be easily addressed interfere with the balance, coordination, posture, freedom of movement, and are not considered. Our experience has showed that those dysfunctions should be taken into account for a better progress.

In contrast to classical rehabilitation treatment, a great consideration is hence given to the preparation of the tissues to optimise the exercises done later: work on the joints to free them from any restriction and allow a full range of movement, cranial work...

The center has perfectionned and precursory rehabilitation equipment: Spider therapy, Therasuit, Universal exercise unit... The aims of treatment:

1.Decreasing spasticity.
2.Rehabilitating the musculature, stretching or strengthening the muscles according to the needs.
3.Working on balance and motor coordination (the ataxia decreases when we use kinetics to work on the patients: when offered the « technical » posibility of being stable during active exercise, he can reinforme his cerebellum and vestibular system of the correct position of the body in space).
4.Working on self-confidence and dealing with anxiety, work on the parachute reflex.
5.Improving the posture, with particular focus on the straightening of the spine and head support (both factors essential for walking).
Frédéric GUEZ, Ostéopathe D.O. France
Membre du ROE N°82
Directeur et créateur de la méthode ®

fgosteo@hotmail.com

www.metodoessentis.com

Travessera de Gracia, 81, 1°,1a
Barcelona Spain (00 34)637 90 58 67"  directly copied and pasted.



6/8/11  I just viewed the Paris conference and love their holistic approach to the body and health.  I like how they call the child, the classic instead of normal.  I enjoyed watching the spider therapy on youtube.  I found the three sessions very interesting to read and I shall be reading them again.  They encouraged me, and I think that we are on the right path for Jewel.  It is nice to know that we are not alone in our thinking and approach.  :)

documentary inspiration "Beyond Limits" - cerebral palsy

This is my mornings inspiration for today :)
I have not seen this documentary yet, though I rent it, go check it out :)

  

Beyond Limits Trailer

http://www.youtube.com/watch?v=rimod7zfQNY


"At 19,340 feet, Mount Kilimanjaro is the tallest freestanding mountain in the world and a daunting climb for any person to attempt. But Bonner Paddock isn't just any person.

Born with cerebral palsy, Bonner has limited motor function in his lower body, spastic leg muscles, and no sense of balance. Not a mountain climber by his own admission, Bonner's encounters with kids with CP inspire him to take on Kilimanjaro in order to raise awareness about cerebral palsy and to raise funds to build a comprehensive center for children with disabilities.

With months of training under his belt and driven by his own determined spirit, it seems Bonner can't fail. But Bonner soon learns that there is no preparation for what he finds on the mountain. Over 8 days and 64 miles, the steep climbs, freezing temperatures, and ever-thinning oxygen test not just his physical abilities, but his will. Ultimately, in order to summit Kilimanjaro Bonner will have to go beyond the limits -- physical and mental -- that we set for ourselves." - copied and pasted from Youtube

athetoid cerebral palsy

Here is a you tube link that I found that simply explains athetoid cerebral palsy:
Jewel has spastic cerebral palsy with athetoid and tonic movements and other stuff, but this is not who she is, it is just a part of what her brain is doing due to her brain injury.  This explains what and why her body does, Jewel is an amazingly brilliant, talented, creative and loving human, my youngest daughter.

http://www.youtube.com/watch?v=_pP1P1an490

Talking about the United cerebral palsy foundation;
http://www.youtube.com/watch?v=jEFLggnw3LI&feature=relmfu

Beach

6/6/11 Monday

Jewel had a full day of being in her equipment; wheel chair, stander, gait trainer.
Apparently the couple of therapists working with her notice a considerable change in Jewel's body since we have been taking her off the floor and keeping her AFOs on and putting her into her equipment that supports optimal posture.  (We used to allow Jewel more floor time thinking that she would eventually push up more or crawl but it was just strengthening her primitive patterns which are un-functional, we did not think that all these restraints were good for her.  Now she is ready and so are we, it is tough love now.  She no longer throws up when being put into her equipment and we are moving on to higher ground :))  They notice that Jewel has less tone, and that she is more relaxed!  Yes!
They also noticed that she is able to quite down and feel calm sooner and they are able to work with Jewel with more results during the session.  One therapist said it took her about 45 minutes just to get Jewel to a place of ease to be able to do more focused work with her, now they are able to get her into these positions 5-10 minutes into the session.  This makes my heart happy.   I thank the families that have helped Jewel get her equipment because it is through their gift that she is making gains.  From my heart to yours I thank you.

About five days ago Gary had Jewel on the floor with no AFO's or brace on and she reverted back to those primitive un-functional patterns and it is very sad for my heart to see this.  She gets so stuck in her body and is unable to do anything.  If we give up she fails.

We took the whole family to the beach in the afternoon.  It was not a safe beach for Jewel, with high surf advisory we stayed under the shade of a Kiawe tree.  It is said that the missionaries to Hawaii brought these seeds and planted them, so that the local Hawaiians would wear shoes.  But most of the local kids just run around on the beach barefoot any way :)   I love the smell of Kiawe wood fires, and the shade of these trees.  The thorns are big and they hurt if they penetrate your slipper.  I played mermaid barbies with Jewel and we made a stick fort for them.  Even though she wanted me to dig, I used this play time to exercise her and do therapy on the sly.  The big girls went to run the beach with their friends.   Unbeknown to Jewel  I had her sitting in criss-cross position and had her do diagonal trunk rotation, then stretching out her arms on these rotations, encouraging her to reach for her barbies.  We dug a small hole to burry her ken barbie.  She loves to hold large sticks, like the girl who likes to run with scissors.  I can only handle a few seconds of this for I  am scared that she will poke her face or my face.  Then I had her over my legs and encouraged her to weight bare on her forearms.  My hands stayed very soft and relaxed when touching her or placing her arms back into correct positioning.  Arms need to be directly under shoulders, the 90 degree law, ( Keep the joint in 90 degree angles)  and encourage hands in open positioning is optimal.  I just focused on weight baring because I would loose all of the good posture when fiddling with her hands.  We have to pick our battles and sometimes it is easier to pick out the weeds when they are big for we tear out the flowers with the weeds when they are small.  The flowers need to get bigger and stronger to with stand the weeding.  I am slowly getting it.  Jewel had to keep lifting up her head and she did so well.  Helping Jewel dig is great for her sensory assimilation as well, it is a great texture.  Her athetoid tendency makes it difficult for her to coordinate movements smoothly and to maintain body posture.  It looks like she is swaying her head and saying NO but she is not saying No, it is an involuntary movement.  Jewel worked so hard and she just thought she was playing at the beach.  Every position I put her in was intentional, with the hopes that it would help her body and bring about some normalcy, as far as healthy and correct posture/positioning and weight baring.

Beach time and then off to feed the horses and water the garden.  So much fresh air and being together as a family does our bodies good.  What an appetite she had for dinner, though she does enjoy her food on a regular basis.  When I put her to bed, we lay there and repeated the oral motor/swallowing exercises form the night before with great success.  Jewel was relaxed, and laying down she was supported with out having to fight gravity.  Her focus and volition were together and she did great.  She did better at lip closure, holding lip closure and nose breathing.  We kept it fun and short.  Four times per exercise, with praise and encouragement.  False praise does not work because she is too smart for that, but something like, "that was very hard to do and you had a great attitude, thank you or wow, what an improvement from yesterday, you are amazingly talented, I love you, .. you get the picture :)"  Good end to a lovely day.

Monday, June 6, 2011

adjusting

6/4/11 Saturday was Makena's 18th birthday :)

Today I am amazed at the things our children have done and their wide range
of interests.  They are all living their lives and not the ones I would have planned
for them.  But I have learned that their lives are theirs, not mine, and in living
their own lives they have given me experiences and an education I would never
have had if I’d been fool enough to make them do what I thought they should do.

Bernie Siegel

I found this quote on letting go of control.  This weekend was about Makena and celebrating her birthday with her friends.  We had a surprise gathering with some of her friends and Aunties to celebrate with us.  We had the makings of soft tacos, water mellon and home made cake.  It was hard for Jewel to keep the 'surprise' and she kept telling Makena, "surprise" through out the week.  Makena was very curious but she did not want in on the surprise.  We had nine 'older girls' at the party and it was a bit difficult at times for Jewel to share her sissy with all her friends.  The weekend brought lots of fun, friendship and letting go and just being.  I have to let go more and trust and allow for the older girls to grow.  Jewel is learning as well and she had a bit more tear going on.  I am proud of who my daughters are and I cherish every moment with them.  I love and respect them.  Makena pushed my buttons a little and worked with Jewel and a snorkel in the pool.  I am very uncomfortable with this since she has weak lip closure but she did well in spite of my fears.  I am afraid she will swallow too much pool water and get sick or aspirate pool water.  Jewel had fun with Makena and they both enjoyed watching me squirm. Thank you girls for growing me into a better Mother xx (keep the pennies going for my therapy jar, not kidding.)

6/5/11 Sunday
The big girls went to the beach with their friends.
Jewel had a great session with her O/T and it was all about relaxing and self feeding.  I may say that we have seen an improvement in Jewel's body and her ability to settle down into the session faster.  She wants to grow and do so much, her brain has signals that mess up her volition.  The work was great, she ate a cliff fruit leather twist vine.  She did not care for it as much as if it was black licorice, but she was a good sport and ate it to be able to practice eating.  The twist was a bit sour and she made funny expressions that I have never seen before.  I need to get health snacks for her to eat during these sessions, ones that will not crumble or be to labour intensive.  She was very content after this session.  This is one of her goals and ours as well, for her to be able to achieve self feeding.  We discussed her wheel chair needs and the obstacle of us living on the third floor with out an elevator or ramp.  Jewel got to do ball work, side sitting and side lying work.  She got a bit frustrated at one point and we were able to narrow it down to, "tired."  We go through about five options to yes and no, too may options will just frustrate her more.  I used the HALT  acronym, to help us.  (hungry, angry, lonely, tired)
Jewel cried a little again in the evening and we just allowed her to express her self, we all gave her attention but she only wanted her sisters attention.  She settled down in Raven's arms. xx  Thank you Raven :)
I did Jewel's swallow exercises in bed and incorporated tooth brushing and some Beckman oral.  She did exceedingly well, I was so surprised and proud of her.  She does well will praise and keeping it short.  I led her in some nose breathing and it was foreign to her  since she is a mouth breather.  I will work the swallow and speech and nose breathing in together.  I think that Jewel needs to learn nose breathing and I am sure that there will be many benefits to achieving this task.
It was a lovely and full weekend.

"Today you are You, that is truer than true.  There is no one alive who is Youer than You."  Dr. Seuss