Saturday, April 30, 2011

This morning I found this sight;
http://www.cerebralpalsyblog.co.uk/2007/05/children-with-disabilities-as-happy-as-classmates/

I found this article good for thought.    I know each child and family are as individual and diverse as each snow flake crystal examined under a microscope.  I do agree that if we see our selves as worthy and feel loved and accepted it flows over into the depths of our lives.  I do see a greater need for us to respect each other's differences and for there to be no 'normal' just 'us'.  Respecting each life as the image of God, thus leaving primitive thought and ascending to a higher mindfulness.  A worthy habit to change the way we see and value each other.  So I am learning to love my neighbour as myself. xx

I do not know if it is legal but I copied and pasted the article in its entirety for those interested.
From The Independent, 30th June 2007
By Jeremy Laurance, Health Editor
Sorrow and pity are natural responses to disability in children – but they are misplaced, researchers say.
There is no need to feel sad about youngsters with cerebral palsy because they experience life much as other children do – with all its joys and sadnesses, successes and failures.
Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.
A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.
Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.
Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. “Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children.”
In earlier research, he had shown that disabled children participated less in activities than other children, because of the restrictions imposed by their disability. But they were no less happy. The new study showed their quality of life, as reported by themselves, was no different. “A father came up to me after we reported the results and said, ‘You have already made me think differently about my child’,” Professor Colver said.
The findings reinforced the need for disabled children to be integrated into society, he added. “The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children.”
Julie Johnson of Gateshead whose 10-year-old son, Nathan, was diagnosed with cerebral palsy at four months, said: “I treat Nathan and his brother the same and I have found that both of them rise to their own challenges. Nathan has problems with his left hand but quite simple steps have enabled him to attend a mainstream school. He is an active, happy child.”
Nathan said: “I like all my teachers and I have a big group of friends at school. I have a special board which helps me to write neater. At playtime we play tag and football.”

The body responds

4/30/11 Saturday

Yes, this morning Jewel awoke with another dry over night diaper!
After taking her swash hip adductor brace off, we did gentle bed dancing.  I gently worked on stretching her arms and legs, worked on diagonal movements and transitions from laying to sitting.  Her body responded and kept relaxed.  Then it was off to the bathroom with no false alarms and into her fresh clothes and AFOs :)   After self care I put her right into the wheelchair, not on the floor or soft tumble form chair where she would loose her functional body alignment.  I am catching on!

Makena brought Harry Potter on CD home for Jewel from the Library, thank Makena!
Jewel has been raised listening to us read to her and listening to books on tape and CD.
She has been sucked into the books and enjoys each disk.  Disk number four already :)

Jewel clocked in two sittings of 1hr each in her super stand, (stander) from Prime Engineering, way to go Jewel!

Jewel's body is responding to the bindings of her wheelchair, AFOs and stander!  We are so encouraged!  It feels like the gates of heaven have opened in her favour.

A family leaving the Island gave me some of their left over food which included whole wheat Matzah.  At dinner I gave Jewel some Matzah and explained what kind of bread this was and the story of passover.  Then Jewel responded; "I love you God."


We have been cleaning Grace's ears and teeth and I will dremel  her nails to keep them short.  Grace is Jewel's companion therapy dog and my fourth daughter.

I am trying to encourage Raven to write some posts from her perspective, since she and Jewel spend so much time together and they are very close.  All the girls are very close, it is something so special to watch!

I am still under the weather with my swollen throat gland.
Be well

Eating evaluation

4/29/2011 Friday
"I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much." -Mother Teresa, humanitarian

Jewel has clocked in hours in her uncomfortable AFOs and wheelchair again today.
We are so proud of you Jewel! :)
1 hour and 40 minutes in her stander today.
We had Susan come to do a eating / speech evaluation.  I just let go, and let God.
If I continue to let my fear lead surely we will be lost, and then all the girls will pick up on my negativity.
Susan was wonderful, she is a certified occupational therapist, who does swallow studies at the local hospital.  She saw that Jewel had the wrong chair, "she needs a 90 degree for hips & trunk, feet and knees."
She was able to handle Jewel's body and tone and she worked nicely with her, always talking directly to Jewel.  Susan put us all at ease.  It was a bit much for Jewel, having to eat and drink while we all stared and having someone scrutinize and evaluating everything.  But she handled and so did we,  it helped that Susan was so nice and knowledgeable.  Jewel's oral motor planing is a bit off, this is worrisome for aspiration is always a concern.  She does not have the suck, swallow and breath down apparently.  I think it is due to her lack of neck and head strength and control.  We will consider doing a barium swallow study.
Just when I feared the world was flat and I had reached its end with Crystal leaving, I find out that it is round and full of new help. phew!
I am hopeful for Jewel, hoping that she will have all the help and equipment she needs to be healthy, happy and strong.  Jeweliana you are perfect just being you, I just want to help you reach your goals and dreams.  We love you xx  You need a lot more help with your body and we are growing deeper in character and humility in our hearts due to you my juju bean.

Tonight at the Awana club, which is held at South Side Calvary Chapel, was a wonderful club evening.
Gary drove Makena to shoot the Fire Dancers at the Wailea Mariott  for the Maui News, so Raven and I were taking Jewel to Awanas.  We just finished the swallow evaluation and Loaded the wheelchair down three flights of stairs into my car.  We have no elevator in our building.  Part of the chair was sticking out of the window for we were just too tired to dismantle the chair.  We arrived late but still we made it!  It was the run through of the cars before the Grand Prix.  Jewel's balsa wood dragon car was the bomb, and it caught every ones eye.  The little green dragon was tearing up the track, cross your fingers for next week!  Actually all the cars were beautiful and it was good fun, the leaders were helping with weighing in the cars, giving tips for the wheels and just over all prepping for the big night.  The regular clubbers know and love Jewel and she feels welcomed and at home there.  Tonight some newer clubber kept asking me what was wrong with Jewel and I patiently explained that there was nothing wrong with Jewel.  These moments are like stinging nettle to me, though I am always surprised how open most children are if you keep your response short and simple.
"Thought shall be harder, heart the keener, courage the greater as our might lessens."-Byrhtnoth, 10th-century commander
We are watching clips from the Royal wedding and winding down for bed.

Friday, April 29, 2011

Mixed plate; Prime Engineering and Including Samuel

4/28/11 Thursday
Mixed plate.

Today was our last occupational therapy session with Crystal.  Another wonderful session, we will truly miss her.  Makena filmed the session and will post clips at some point.  We decided to burn the recordings onto a disk so that the whole family can watch, including Jewel.  It will be beneficial to us all, thank you Makena!  We discussed getting a weighted vest for Jewel, this will help with weight baring in the chest area.  The idea is to keep the ribs down and separation from trunk and torso.  We are still looking for the right one to purchase for Jewel.  Gold nugget; weight baring is very important in the integration and transition of primitive to functional movements. If you have a young one start today, with the guidance of a good physical and occupational therapist.  Jewel is ten and it is still critical for her to weight bare at all times!  Occupational therapy focused on hips up and the physical therapist focuses on hips down, a good therapist is worth their weight in gold!  Jewel gave Crystal a pink carnation lei with tuberose, Aloha Crystal.  Thank you for helping Jewel and teaching us how to better care for her.  May your path be blessed with all the love, care and joy you give to others.  We love you Crystal xx

All the news on the tornado that swept through the southern states makes me very sad.  It puts the little thorns in my life into a different light.  My sympathies are with those who lost loved ones and their homes.


If you are looking into purchasing a piece of equipment for yourself, or your child check out Prime Engineering
http://www.primeengineering.com/pages/mainPages/aboutUs.html
We got Jewel's super stand, her stander from them.
This piece of equipment helps her stand up with all the straps to keep her in place, it has helped her bones, weight baring, spine stay straight and helped with her eye tracking, since upright vision gives more distance and perspective than the lower depth of field on the floor. I can not say enough good stuff about this piece of equipment and the company.
We will be getting our gait trainer; Kid Walk, from them as well.
They are customer friendly, they care and will customize a piece for you and trouble shoot over the phone with you.  They are brilliant, amazing, creative and full of heart!!
When you call them you will always be able to talk to someone, they return calls and e-mails, bottom line is they care!  Thank you Prime Engineering staff and owners, we appreciate your excellent service and your big hearts! xx


From the film maker of including Samuel;
http://www.includingsamuel.com/home.aspx
Please check out this video clip, approximately 7 minutes.
It is 20 youth talking about how we as a society need to include the special needs,
http://www.youtube.com/watch?v=92zvN0tmFKY&feature=player_embedded
"I am Norm"
The youth dialogue that is recorded is wonderful, it gives me hope!

11pm the big girls and I were watching the beginnings of the Royal wedding.  I remember when Lady Di got married, my mother let me stay home and watch it with her.  I did not stay up past midnight but I did enjoy watching all the hats and suits.  Listening to the commentary while sipping throat coat tea, my right gland is swollen and looks like I got the mumps.  The magic of a fairy tale wedding was still present.

Friday morning and Jewel woke up with another dry diaper!!! Yeah Jewel!

Thursday, April 28, 2011

Jeweliana and Grace; matching bows in their hair

For Easter Nana sent Jeweliana two new dresses and hair ribbons. :) In these photos Jewel is wearing her new dress and her and Grace are wearing the bows in their hair/fur. xP Also shown is Jeweliana wearing her green hand splins which help promote her hand opening up, and not fisting. And for Aunty Robin, and other readers that don't know what AFO's are there is a tight shot of Jewel's legs in the shoes. AFO's help keep Jewel's foot and ankle at a 90 degree angle, instead of always flexing like a ballerina's. It also gives weightbearing and pressure to the leg. In the last 3 days Jewel has worn them almost non-stop, and we have seen a decrease in her tone. 

Enjoy the photos, and have a great day. PS for my moms sake, try not to see that the couch is not so straight in them. haha. xP




Happy trails

4/27/11 Wednesday

This is how I am feeling today, that nothing is ever enough, that is except pure love.
I was working all day, and Jewel had her second last O/T session with Crystal.
Raven said that it was an amazing session, all about the arms and weight baring.
Some of the gold nuggets that we have learnt are; nutrition is the golden key, keep the child moving at all times, keep them in functional positions - not left on back - if on floor put on side or on stomach.  Weight  baring on arms opens up hands, builds stronger bones and is the foundation for functional movements.
The 1hr session was focused on her arms because they were so tight, they looked like chicken wings.
We do not want this, her range of motion must be kept and increased. Stretching and weight baring is critical in keeping the body healthy.  Massage is good as well.  (The muscles dictate the shape of the bones, so keep those muscles balanced.  For too loose will enable bones to dislocate and too tight can deform, pull out, fracture and break bones.  This is how powerful the muscles and ligaments are.)  So we will ask Shriners Children's Hospital for a elbow brace.
It is never ending and this feel so scary once again.  So I will look at the glass being half full, I must be grateful for the session, thankful that she focused on Jewel's arms and alerted us.  It is not worth being naive to the situation, so we will roll up our sleeves and carry on.
"One never notices what has been done; one can only see what remains to be done." -Marie Curie, French scientist.
Jewel had her AFO's on most of the day, and I did not take them off even when she said that they,  "really hurt".  She sat in her wheel chair a lot despite the discomfort.  I am learning that life is full of discomfort and pain and if I continue to baby her and take her out every time she cries she will suffer in the long term.  I am learning and growing in this area, growing out of being a codependent  and enabler Mommy.  So I will toughen up and hope this will help her grow.
Jewel was emotionally sad and cried about her Da.  His choices affect her directly and yet he constantly bales out on her.  They have a strong bond of love and we are all connected as a family, so our choices directly affect each other.  It makes me angry to see people who are mobile choose not to live to their full potential.  We need to make a way for Jewel to be ambulatory, this is my driving thought.   Life happens weather you have a special needs child or not.   All we are left with is our attitude we take into the situation and hopefully we have more love in our hearts than fear, more hope than despair.  I/we have to believe in the impossible.  "Those who can see the invisible can do the impossible".  We have to be able to look beyond this moment.  Our faith is what sustains us.  Our family is not perfect.  We are very organic and real family.  We can look camera ready and picture perfect, like our Christmas card, we all looked great.  Jewel was on her horse with Raven behind her, supporting her on Cookie Dough, we all looked 'normal'.  You could not tell that Jewel had cerebral palsy in that picture, and we all looked so happy.  But behind that photo is just a family trying to keep it together, trying to help their daughters reach their full potential.   A family trying to make ends meet just like other families, a family trying to help Jewel get all the services and equipment and help that she needs to be healthy and live a full life, with love and integrity.
We are trying our best and at the end of the day this just has to be good enough, then we do it all over again tomorrow.  Happy trails xx

Tuesday, April 26, 2011

Fall down

4/26/11 Monday morning, no it is Tuesday morning, just feels like Monday.

Fall down go boom.  I am a good and attentive mommy, and this morning I did what I do every morning.
Jewel was on the bed, I was changing her and went to throw the over night diaper away, and she slid off the bed!!!!!  Yes, I know that this should never have happened, .... she silently slid off the bed and landed on her knees, it just took a second.  I was back in the room and the soft thump was like a thousand deaths.  She was fine, thank God!  It could have been breakfast at the emergency room with stitches.
The amazing thing was that she landed with correct posture.  She said, "a little scary".
Feeling like a bad Mommy,  I will not leave her alone on the bed, for the side pillows did not stop her, she slid down, feet first.  What I mean is, Jewel did not go over the side, just feet down.  She is fine, no cuts, scrapes or bruises.  She did not even cry.
I will encourage her to yell next time she needs help.
Today I feel super blessed and thankful for the angels that surround Jewel.

I am sick today, with stuffed up sinuses and throbbing head ache.  No horses today!

Learning from this morning.

Creativity

4/26/11 Tuesday
We finished Jewel's dragon balsa wood, derby car.
Uncle Don carved it out according to Jewel's ideas, I spray painted it green and embellished it with gold marker, and Raven glued red beads for the dragon's eyes.
It is a thing of beauty!  I hope Makena takes a photo so that you may see this wonderful dragon car!
In past years Jewel has chosen her car to be a cat, a dog, then a seal, and now a dragon!
She loves arts and crafts, going to Art galleries where she loves the wood sculptures best.
She loves pop music because of her sisters.
I used to play classical violin music every morning for the girls when they all still played the violin.
Makena and Raven used to play in the Maui Youth Symphony and Jewel would get a lesson with them every monday morning.  We would put her in her stander and she had her own violin and the teacher would teach her and we would assist.  We must always remember to feed the mind and nurture the soul.  She misses her lesson "a little bit".  It was a sad day in my heart when the older girls chose to stop playing the violin.  They are all still creative and express it in different ways, on to different seasons.  I am learning to let go, a little bit at a time.

Antibiotics and hippo-therapy

4/24/11 Monday
I made the decision for Jewel to go to the doctor to get antibiotics.
Her phlegm is draining thick and bright, which is a sign of an infection, bacteria most likely.
We have tried to kick this naturally but it came back with vengeance.
Makena remembered that we were at the doctors for antibiotics same time last year.
I tried to get an appointment in the area where we live but because of her type of insurance no one would take us here, so up the hill we went.  It was that or the hospital and the hospital is filthy, to be avoided at all costs.
Our doctor up the hill is sweet and close to 91years old, no kidding.
He gave her amoxicillin, seven day oral liquid course.
I picked up some mucinex to break up the phlegm.
I hate getting antibiotics but my mother's instincts tell me it is best to do it.
Doctor signed off on Jewel's camp forms so it was a two for one trip :)

Our last hippo therapy session with Crystal our O/T,  Jewel and Cookie Dough.
To put words to the session would be impossible because it was a heavenly experience.
Cookie Dough the old horse did well, and what a team Crystal and Jewel were, riding as if they were just a couple of cowgirls, which I guess they are!   Makena filmed most of the session and she will post when time allows.
Raven rode with Jewel as well and what an amazing sight!
I had to stop it after the old guy started tripping and stumbling, my anxiety gets to large, and I am sure the horse picks up on it.  I believe in him but when he stumbles I have a hard time carrying on.  During the session, I am a side walker ready to help or take Jewel at any given second, I can not look at what Jewel is doing but I just concentrate on breathing, staying calm and watching the horse's front hooves move.  I am focused on the horse, his ears, his hooves, his body language and if he needs a break or is stumbling, I call for a break and stop the ride.  I give him a lot of verbal accolades, acknowledging and encouraging him.  He is a smart and kind retired cowboy's horse.  He listens to Jewel and is aware of her at all times.
Jewel was exhausted but finished the sessions with a solo ride, pushing off the horses rear, riding backwards rear facing.  We clocked in at 40min for this horse hippo session!!  Whoop
Jewel needs to increase her stamina to be able to ride in the 4th of July rodeo procession!
Cookie Dough let Jewel pet his face, even when her fingers went towards his eyes he shut his eye and stood still so she could love him.  Jewel love's Cookie Dough and will be the first to say, "good horse" and, "I love you Cookie Dough".
I am grateful that I have daughters who are tirelessly always there for their sister, and who are always ready to help.  Thank you Makena and Raven!  I am so thankful for all of Crystal's work with Jewel on and off the horse, she has been an angel in our lives.  One more O/T session and Crystal leaves Maui off to South Africa, we will miss her beyond words and tears.  She has blessed Jewel with her amazing gift of occupational therapy work!  Thank you to Kandi who lets us use her old horse Cookie Dough aka Billy and to Cindy who had the vision to take Jewel riding and set the wheels in motion.  Thank you Cookie Dough for being the noble horse that Jewel gets to ride and love, for you are truly the type of horse people write songs about!  May God bless and keep you all safe in His perfect care.  Mahalo Nui Loa xx

Sunday, April 24, 2011

Easter Sunday

44/24/11 Easter Sunday
Jewel woke up with another dry diaper, I've lost count how many days this is now!  Being free in panties during the day is awesome!  Saves money on diapers as well but a willing body must be around to take her to the bathroom.
Took the big girls and their friend to church and left Jewel out because she has a cough.
Trying to boost her immune system and weighing the pros and cons of getting her on antibiotics.
Jewel received a basket from the easter bunny, aka Aunty Alisa :) Thank you Alisa, actually it was for the whole family, pretty impressive.
Jewel dyed boiled eggs with Makena and the girls received a easter basket from me, a very slim basket compared to Aunty Alisa's basket.  I do not like giving the girls candy because it is not healthy, weakens the immune system and promotes tooth decay.  I usually give them all new toothbrushes, one candy and pens or art supplies.
Pat and Kandi invited us to their Easter picnic with friends and family, and we were happy to be included.
Thank you Kandi and Pat!!  It was a pot luck and they had a easter egg hunt for all the kids, Jewel was thrilled and yes she ate some chocolate.  She did not want to ride in front of all the children even though it would be perfect for the rodeo preparation.  We really need to work on Jewel's stamina on Cookie Dough.  I was proud of my family, we brought Jewel's wheel chair to the farm picnic and she wore her AFO's most of the day.  She also met two amazing boys who wear AFO's all day, every day!  (Ankle-foot orthoses, or AFOs)  The two boys did not have cerebral palsy, one has spina bifida and the other brittle bones, all of the children received their AFOs from Shriners Children's Hospital.  This is a free service from Shriners and they help children all over the world, check them out if your child needs some help with their legs / bones or with burns.   You can live in Russia, Malaysia, Japan, ... it does not matter, they will help your child with needed surgeries and braces.  Support Shriners financially if you can.    
She met a lot of people and a lot of children, we all had fun!
Jewel has an amazing appetite and ate through out the day.
We put a diaper on her since there are no bathrooms at the farm, she wore her diaper and when we got home it was dry!  We took her to the bathroom as soon as we got home, way to go Jewel!
She is watching TV right now, and she is in her wheel chair and in her AFO's, we are so proud of you Jewel.  Meeting these young boys who did not whine or cry inspired her to be braver and endure the discomfort of both her chair and AFO's.
Friends do a body good!
I have to let Jewel grow and baby her less and bless her by allowing her to grow in all areas.
I will always remember this Easter for all the gifts that have blossomed in my heart.
1 Corinthians 15:4

Saturday, April 23, 2011

Relationships

4/23/11  Thoughts on Relationships
The statistics show that parents with special needs children are doomed for failed relationships and marriages.  So with that said, I would like to encourage parents to break that statistic cycle.
The child with the special label tends to consume your time, energy, and resources, and dominate your focus just by the nature of the medical condition.  Communication is important, communication with out blame, shame, anger or judgement.  There are some couples out there who have a solid marriage, and they too have to sustain and nurture the relationship.
I have no advise.
But I know that my girlfriends are like sisters to me, encouraging me and helping me.  I need my girlfriendsthem.  They are there when I need prayer, a shoulder to cry on, someone to belly laugh with, some one who understands, does not judge or demand, unconditional love.
If you had a fragile relationship before the arrival of this child it will only be amplified.
Make time for you, so that you will have something to give back.  It is too easy to run on empty,  you need to fill your cup.  What ever that is, I encourage you to start small and start with something that is free or affordable and that makes you smile, something that touches you deep within.
Do something that you love, if you have forgotten what that is, make time to be quiet and remember.
A parent is a vessel that is on call day and night, honour yourself and make time for your self, even if it is brushing and flossing your teeth well, making time to invite your friend over for tea and laughter, a shower, what ever it is do it, start small, start today :)

Friday, April 22, 2011

Transitions

4/22/11
Worms ^-^  Grace the companion dog has worms.
Off to the Vet to get medicine.  She has tape worm :(

Went to the chiropractor, I clean his office with Raven for trade in his services.  He works on Jewel after.
Her hip was out and I am tankful that he put it back in.  Trades are awesome, especially when your budget is tight.

We went with Cindy to go riding Cookie Dough, when we got there we found out that he threw a shoe.  We can not ride him until he has been re-shooed.   So we fed and groomed him and just worked on stationary work with Jewel, pushing off of Cookie Dough.  It was very hot and the heat can agitate people with cerebral palsy.  Warm water relaxes their muscles but hot weather can agitate them making them more spastic.  Shade and cool breezes can help calm their bodies.

Yesterday we had an O/T session with crystal and the new O/T.  Transitions.
Even after requesting that the conversation and questioning stay positive, because Jewel gets stressed when the conversation is about her as if she was not even in the room.  All this was forgotten and I had a small melt down after the session, I wept.  The new O/T is very different and I will have to find a way to make it work.   The prerequisite for every therapist has been; they have to be 1. kind, 2. knowledgeable, and 3. believe in miracles.

A special month as Passover and Easter are celebrated.

I believe in the miracles!

Thursday, April 21, 2011

4/21/11
Honouring Ikaika Suzuki.
He was battling a rare form of Brain cancer that attacked him last summer.
Feb. 6 page A1 he was featured in the Maui News.
17 year old Eagle Scout who inspired all by his positive attitude.
He lived like each day was his last, not by being selfish and self centered, rather by being brave, positive and compassionate to all he met.  He gave away his love as if it were his last, he was not a taker but a giver.
He was our hero.
We will not forget you and your bright light Ikaika.
Aloha xx

Wednesday, April 20, 2011

info. Maui - Dentistry under general anaesthesia 4/20/11

4/20/11 Wednesday
Dentist
Eeek, spell check not working, I am doomed! I can not spell, should I quit the blog now?!

Numbers and names you may need for your child/ren;

Sonia Guptaman, DDS 808 633-6931
Hospital dentistry under general anaesthesia here on Maui!
Up until this point all families with special needs children, who had to be put under for dental work,  had to fly to Honolulu.  Spread the word.

Looking into Acupuncture for Jewel.  


Want to get a Spanish tutor for Jewel and a swimming teacher for the summer.  Jewel has always spoken Spanish, thanks to public television.  When she is shy or in a mood she will say, water, hello, or thank you in Spanish.  She has always had an ear for that language and a sense of humor.

Jewel had a great session with Carol the P/T, who did myofascial  release her.  It is wonderful to see how Jewel responded and her body got so relaxed!  Thank you Carol! :)

Went to see Uncle Don, this evening he helped Jewel carve her car.  She will be racing it this friday and her choice was a dragon.  Past years it was a dog, cat and seal.  Thank you Don for taking the time to help Jewel turn her piece of balsa wood into the dragon she will race on friday!

I will write more when the spell check is working, please help me Makena!  Thx, love Mommy.
4/20/11
Gas
Gas at the cheapest gas station, 8.380 gallons at $4.799 Regular $40.22 Kihei Tesoro
I clean houses to support a family of five and a service dog, how am I meant to get around with these prices!  Yes I am spoiled, and grateful but these prices are pinching my pocket!

Apple Juice

4/19/11 Tuesday
Jewel started her morning with, "apple juice", "apple juice", "really want apple juice".
Gary said,"we do not have any apple juice", and her response was,
"make some!". So he made fresh apple juice since we had organic apples and we have a juicer.
Jewel knows what she wants and she will keep asking for it until she gets it and you are broken.
Now it is ,"egg" through out the day. Jewel is excited about Easter and wants to hold her Easter basked. Her focus can be charming until it is 2:30 am and she is still focusing on her leg,"owie leggie", or "can't sleep", this is enough to push me over the edge. Contrary to,"love is all we need" a body needs a fair protein of sleep. Sometimes I want to run away so I can get some sleep. Last night I could not cope any more, Jewel's constant jabber and whining pushed me to my edge, I migrated to the couch, my refuge, and passed out there for some deeply needed sleep. Over the past ten years Jewel has trained me to survive with broken and interrupted sleep. I can get by with a lot less sleep and even sleep with one eye and ear open, but I still need to sleep. With out it I am a grizzly Mama Bear!

Jewel did another 1 1/2 hours in her stander, yippee kay ay! :)
I took Jewel to the pool with Raven and we had an,"Ah ha moment".
First we just hung out in the pool and tried to do some weight baring on the floatie.
I am always trying to duplicate an O/T pool session, sometimes this can be stressful so I just try to encourage diagonal movements and functional body patterns, otherwise it will not be fun. I did not feel like I was in control and able to duplicate much of Crystal's last pool session with Jewel. Then I took her into the hot tub and continued to work on twists, thus separating trunk from hips and diagonals. After a while Jewel relaxed and we went back into the pool, it was cold for her so I kept it short. I said for her to find the bottom of the pool with her feet and she did! It took a while but she did! Then I asked her to find one of the steps with her feet and encouraged her to lift her own leg up, I waited a while and she did this as well! So I repeated this until she climbed the three pool steps, while I supported her trunk and head. Then I verbally queued her to get out of the pool, one more step and she did this too. After this she took three steps with lots of support and verbal queues. She said she was,"done" and Raven and I were so happy as we cheered and congratulated Jewel. Since last night was so hard for us both this may have been too much for her, so I will need to work more on strengthening her hips so she will not experience such pain after. I gave her Calm water which has magnesium and calcium and 1 teaspoon ibuprofen incase she was in pain and had some inflammation. I will reflect and see what else we can to for a successful repeat. I have joined the, I do not need much but I love uninterrupted sleep club.

Tuesday, April 19, 2011

Water therapy and horse therapy


Jewel and her awesome O/T Chrystal!

Photos of Jeweliana horse back riding are from yesterday (4/19) and her swimming in the pool is from last week.
They are stills from the video I shot, but I haven't got to formatting the video and putting it on youtube so it can be embedded in the blog.
Pardon the quality of the photos, my Nikon d700 is cringing, because I usually take much better photos. xP

(click the photos and they will get larger)

~Makena
Working on keeping Jewel's head up in the proper position.

Jewel loves doing therapy in the hot tub! It helps her muscles relax.

At the steps of the pool, standing on her legs, and working on keeping her head up. :)

Raven is on head control! Don't want Jewel to swallow water!

Floating!


Jewel weightbearing correctly with her left arm! If only we could get that right arm down!

Smiling for the camera!

"Look no hands!"

Jewel did such a great job riding "cookie dough" yesterday!

When she rides by herself she likes wearing her helmet. Look at the way she is pushing off the horse with her hands to get that helmet on! :D


no filters

4/19/11 Tuesday
Jewel has been sleeping better and her body has been more relaxed.
Yesterday we all noticed how loose and relaxed she was on the horse instead of that high tone kicking in.
We are grateful for this.
I have noticed that Jewel has no filters, at 10 she is completely honest with no social pressures to say yes when she means no.
If she does not like a gift she will say, "no tank you", or "give away", regardless if this is socially acceptable, if she is able to express her emotions in a word she will let you know. (We are teaching her to be aware that she can hurt peoples feelings and to say thank you to the giver). She is very free with letting you know that, "I love you" or "tank you". She has let us know that,"hate grey", she strongly has an opinion on grey. Her favorite color has always been yellow and second choice has been green as of a year ago. She wears all colors, and will ask to wear, "black, brown,purple ..." She chose the color of her gait trainer that is in the mail, and it was not yellow or green, which were some of the choices. Instead Jewel picked, "red", good choice Jewel! Makena is very conscience of Jewel's limited ability to control her world. In respect of this Makena and Gary will both always let Jewel pick the clothes and the color, downs to the panties. Jewel let her Da know that it is called' "panties" not underwear!
When she is in pain she says,"I like to cry".
There are no social restraints on her ability to express her feelings.
Her face will always tell the truth and her words though few will back that face up!
She has always relied on eye gazed to communicate and we have relied on her facial expression to interpret her speechless emotions. Her smile has always been able to launch a thousand ships, and her eyes are as clear as crystals letting you see her heart & fireworks. Though sometimes those clear eyes look deep into your soul. Jewel had cold blue eyes up until she was four and then somewhere by the time she was five her eyes had turned a pale green. When she is tired she gets a faraway glazed over look, like a dull chandelier. We have worked on her ability to look at our face/eyes/or nose head on, because she would always avoid looking directly at our face. This would bring me to tears when she was younger, why would she not look at her Mama. I used to take this so personally, but once again the speech and language pathologist would work on this aspect of communication with us. As a little girl Jewel did not like any toys or T.V she just preferred humans. She preferred us to be constantly around her, so she could see and hear us, this made her happy. She still tends to look at you through her peripheral vision. We have been working a lot on this, trying to get her head in midline and her eye gaze to be direct and verbally prompting her to look at the object or at her hand, explaining that the eyes and head lead the body.
Well I guess I do not mind that Jewel speaks from her heart in truth, we tend to sugar coat and confuse what we need or want to say. Jewel there is no judgement, we love that you speak from your heart's truth. You are a girl that speaks what she means and means what she says. :) Thank you for this, I remember when we were still in the Neonatal Intensive Care unit they said that there were no guarantees that you would ever speak. I was wondering why you were not crying, because you cried at birth and there after, before being intubated insert a tube into (a person or a body part, esp. the trachea for ventilation).  But each resident doctor in training got to practice on the little babies every night. Each resident doctor in training would get x4 tries intubating the child. Sometimes Jewel got x10 practices done on her. We were not aware of this until much later and then we enforced our parental rights to stop this. We learnt a lot about this teaching hospital. I am thankful that she is able to speak, even if it is a few words, even if the speech is not clear or it sounds strange. I know she needs more breath to make the speech sound better, stable trunk, stronger neck and head control, and more practice. We tend to take all this for granted until we look at Jewel, she reminds us that every function of the body and every moment is a gift. Thank you for teaching us so much Jeweliana! We love you! xoxoxoxoxo I encourage you to speak directly from the heart, It will not fail you!

"The race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favor to men of skill; but time and chance happeneth to them all." Ecclesiastes 9:11 (King James Version)

Monday, April 18, 2011

Creative

4/18/11 Monday
I asked Jewel if she has something to say and she said,"no".
She had a lot to say this morning.
She told her Da that she "hated" him.
She was cross that he did not come home to go to the movie with her as planned.
Raven told Jewel that, "it is not good to hate".
So Makena decided to get Jewel to do some "angry art". Jewel chose two colors, blue for sad and red for mad/angry.
I like how Makena redirected the focus to something constructive and still allowed Jewel to express her emotions.
We all depend on each other yet we have to be able to find our own center inside, that place of peace and love that will help us carry on. We can not allow these destructive emotions to corrode our hearts.
This is a tough one but with our help we will support Jewel to be better and not bitter.

Hippo therapy with Crystal our O/T was amazing. She has been able to maintain her work with Jewel on Cookie Dough aka Billy.
I see muscle memory being built and a foundation being lade. 30 min w/ Crystal on the old horse, thank you Cookie Dough. His tripping causes great anxiety and stress to Raven and I, but Crystal is always able to stay focus on the session and she just trusts in the process. Makena filmed most of the session and she will transfer this on to a CD so we can study it. Thank you Makena and Raven for always giving from your hearts, you are blessings to both Jewel and I. Doing family as a team is the only way.

A new word for Jewel today, she said that she was,"creative!", and it was said clearly as we all heard and understood her.
Yes, Jeweliana you are very creative! :)

A good day homeschooling, everyone chipped in and Jewel did 1hr 20min. in her stander. This piece of equipment is the super stand from prime engineering.

Sunday, April 17, 2011

Soul Surfer - Movie

4/16/2011 Saturday
Jewel is much more relaxed and has gotten much needed sleep and so have we.
Good sleep helps the body grow.
Rushing to get tax paperwork together. -Eek
4/17/2001 Sunday
Got my taxes done and electronically filed, deep breath and feeling lighter.
Get together with good friend, Kathleen and John at pool side.
Planning to go to see Soul Surfer.
Nap - quiet time.
Thanks Anne for taking me and the girls to see Soul Surfer!
Nothing like the big screen and amplified music, with loads of sweet treats and pizza!
An amazing and inspiring movie of Bethany Hamilton, and I agree with the line in the movie that says that LOVE is the most important thing! Go Bethany!
http://en.wikipedia.org/wiki/Soul_Surfer_(film)

Saturday, April 16, 2011

"God Help"

4/15/2011
Friday the 15th was full of pain for Jewel.
She cried, "God Help!"

These moments when your child is in pain are consuming, the minutes are endless and it becomes emotionally draining.
It is important to remember to be positive and know that this to shall pass.
"Be positive regardless" says Wally Amos www.wallyamos.com
When our primitive instincts kick in due to being sleep deprived and temporarily defeated, we can only raise above the circumstances with the attitude we bring to the table. We have to train our primitive mindset with practicing positivity and faith.

"Hope ... is not a feeling; it is something you do." - Katherine Paterson, American writer


I was talking with my oldest daughter Makena, about her ideas that the special need community should not be boxed into labels of above average - genius and below mental average. She just wants people to see each other as people and not separated into boxed labels. She wants people to get to know each other, become friends and see each other from the heart. My friend who is a doctor said that this is how the brain works. The primate brain sorts and separates into these labels with out thought. There is scientific research and evidence to support this neurological function. I find this research limited, for I have personally experienced that children imitate what their parents, family, peers and community models. A child can be taught to be excepting and a child can 'catch' this form of thinking if it is modeled by the community / society. Just because some say that our brain categorizes and sorts people into separate boxes of prejudice, this should not stop us from learning to be more humble and get to know and love our neighbors. Love your neighbor as your self, ancient words that still apply in our times.
Small actions create big change!

"go away yukie", said Jewel. She still has some mucus, though it is not infected and colored.
"yogurt, (this is what she calls me) thank you new sock!" :)
Jewel always remembers to say thank you, "tank you". I am inspired by her gratitude, she always tells Grace her service dog, "tank you" and then she looks at me and says,"dog cookie" which means: Mom give Grace a dog cookie please :)
I bought her new socks, thicker ones to help slow down her skin break down in her AFO's.
Also her old pairs are Maui dirt stained from standing in the dirt when we go to the horses.

Grace has been a great Nanny. When Jewel gets up, so does she. When I have traveled back and forth from the bed to couch these past nights, Grace has faithfully followed. She is a most loving and excepting companion to Jewel. They are aware of each other and their needs, their love and faithfulness is very enduring. Thank you Grace xx

Remember; There are no small acts of kindness.

Never under estimate the power of your SMILE ;-)
On Wednesday we went and saw the sunrise in celebration for Mom's bday. :) Jeweliana wanted to bring Grace with us, but Mom said no. lol


Makena I look Yukie! Thanks for doing all you do for our family in your unique and talented way. Thank you for putting this blog together and uploading all the pics, you are awesome! I love you Makena xoxo Mom

Friday, April 15, 2011

Pain and spasms

4/15/2011 Friday
Jewel has been in a lot of pain due to the spasms and tone and weak muscles in her hips, her legs have been tight and she has been getting charlie horses in her calves :(
We have been massaging, stretching and using Arnica Montana gel and homeopathic remedies, along with all her other supplements.
Makena sat up with Jewel so I could get some sleep, thank you Makena!
Jewel could only get some sleep in the upright sitting position.
I have been running on very little sleep and so has she.
This afternoon I picked up some children's Ibuprofen and gave her one teaspoon after her lunch.
She went to sleep shortly after and it has greatly benefited her overall comfort and personality.
I hate to use anything outside of whole foods and natural herbs but there is always a place and time for other aids to be given.
The children's oral suspension (liquid) Ibuprofen worked.


Found an interesting article on Josh Blue the comedian with Cerebral Palsy and thought someone may enjoy reading it.
http://www.disaboom.com/entertainment-general/josh-blue-unleashes-his-blue-magic
Disaboom is a sight for people with disabilities.

Thursday, April 14, 2011

Daughter by Mark Stewart-Jones

I wholeheartedly recommend this book;
Daughter by Mark Stewart-Jones
You can special order it and Amazon books has it, so check it out!
The back cover reads "Whatever happens now, beyond these moments, whatever is lost, whatever may have been denied us, there are the two words that I will not let anyone take away from us. Ever. Father. Daughter. Sophie has cerebral palsy. She was born with no verbal communication, virtually no physical movement and, according to the 'experts', little or no chance of developing cognitive intelligence. yet, for Sophie's father- novelist and former journalist Mark Stewart-Jones -it is a new beginning, the start of a remarkable journey that will change his and Sophie's lives for ever." This book is not fictional and worth reading!

Sophie will be turning 21 this April 27, 2011.
Happy 21st Birthday Sophie! :-)
We wish you all the very best!!

Check out Sophie's website;
http://dreamsonpaper.com/page2.html
It has her Art work and some pieces are still for sale.
The renderings are amazing! I love you Art Sophie, you are talented and an inspiration!

It is important for me to read and learn more about other people's stories, their journeys teach us. I hate the medical sights on cerebral palsy because they dehumanize the person to just a label. I deal with the limits of cerebral palsy every day, yet I want Jewel to be free to dream with out boundaries. I want to scream at the medical economics machine, take it down as David took down Goliath. We are human and we need hope, we need to color any way we can, we need the stories of the brave individuals and their families who have trail blazed before us, so we can find our own courage to find our own paths. I have been labeled, 'systems resistant' and this is fine with me, because I am always looking for an alternative that is more humane, gentler to the drugs they offer to us. Give me Hope! This is where my faith has sustained me, my daughters have stood by me, my girlfriends have laughed with me and wiped my tears, and the champions like Sophie and her Dad have inspired me. If you have a child with cerebral palsy pick up this book in support of this lovely family, it also makes a good gift.

Helping hands

4/14/2011 Thursday
Makena got her top two wisdom teeth taken out this morning, owie :(
When she got her bottom two taken out I opted for pain free and said they could give her local anesthetic, it turned out that her heart rate was real low. This could be Makena's base line but never the less it scared the surgeon, and seeing him so concerned left me worrying and so uncomfortable. I swore I would never put any of my children under just to avoid some pain, the risks and variables can turn against your favor. I would rather have my child safe and in pain, than with no pain and in high risk! Pain is a part of life and a big part of ours.
While we were at the oral surgeon, Jewel was at John's house getting her body work done.
Thank you John ! It is so humbling to see the people come rallying along side Jewel, trying to aid her to be pain free. Jewel has been so knotted up lately, the pain in her hips and the pinching in her muscles has its mark on us. I would love her to be pain free but at what cost, everything has such a high price in her life.
Pool sessions are so fun. Jewel had her occupational therapy session in the pool, mostly in the hot tub since she was so tight and her shoulders seemed stuck and frozen stiff. After an hour in the pool, hot tub and pool again, her body loosened up and her mind was able to briefly travel to banana bread. Crystal the o/t said to Jewel to think on something that makes her happy, "try to visualize it". Then Jewel smiled and said,"banana bread" :) She got it!
The session was amazing, Makena filmed part of it and hopefully some day we can post some segments of these sessions. Thank you Crystal for your passion to help and your healing hands. Jewel listens to Crystal and follows through on her verbal directions, it is lovely to watch how this student teacher relationship has grown and it has all been built on love. Crystal always proceeds with love. I wish I could hook an iv up to myself and Crystal and download all her knowledge, making me a better Mommy. I have learnt a lot but never enough, sometimes it is too much to bare but today is a gift. I delight in my children, take a deep breath and carry on.
Sometimes Jewel cries when I am sad, it is like we are somehow deeply connected.

Wednesday, April 13, 2011

Keeping the Joy

4/13/11 Wednesday
Most days are equivalent to at least a week in our household.
I share just a moment in this blog, about something that I want to savour or a thought I think would encourage, mostly positive and productive stuff.
Then there are the peaks and valleys in between, even dark caverns, splatting into a puddle of tears, rock bottom, anger, and more as I fight inside to stay positive.
I daily have to fight fear, despair , negativity, despondence, depression, hopelessness, being overwhelmed, self-pity, the Why questions, the HOW to questions, and on it goes.
I never feel like we are doing enough, achieving enough, it is very self defeating because this is when I am measuring Jewel by some one else's yard stick.
I am told these feelings are natural, or normal. I am told not to be so hard on my self.
But I want the world for her, I want her to continue to grow in health, be educated , delight in her days, master functional movements and patterns that will help her to be more independent, speak clearer, and the list goes on.
I guess I do best in the present moments, other wise I snow ball into the what ifs?
Plans help me stay grounded and focused.
Having a measuring stick that is made up of Joy and delight, peace, hope and love may be best for me.

Tuesday, April 12, 2011

Mitzvah for Jewel and Resolution

4/12/2011 Today, Tuesday is may B-day
My how time flies when you are living in the moment.
The girls made me wear a tiara today and I don't know why I do not wear one more often!
And you should see the cake that Raven baked from scratch, mmm mmm! Thank you Raven ! :-)
There are so many blessings in my life, and I am truly grateful for them all!!
My girls are my joy and my girlfriends cheer me on, really these are the treasures in life!
Raven made a huge cake from scratch and it is maple and caramel,  yum!
Sugar is not so good for Jewel but we all need to celebrate :)

Yesterday, 4/11/11 is huge blessing day, Gilbert and Marian gifted Jewel with a Gate Trainer.
They gave her a Mitzvah which is a blessing, really, this truly happened.
They are thankful that they were safe during the Tsunami and they wanted to give back and bless Jewel.
Thank You Gil and Marian, I accept this gift for Jewel with my whole heart and I thank you for your generosity and love.
Such joy and humility, so our garden of dreams abound.

Found Jewel's New year's Resolution list for 2011
She made this with her speech pathologist and us.
-Sit up by self
-Read
-Write book with Raven
-Be able to stand
-Walk
-Read all "How to train a Dragon" books with Makena
-Improve my "R" sound

Goals are important and so are dreams. A girl with a plan, plans to succeed! Jewel is working her plan and now she has help with her Gait trainer on its way!

photos!

Photos!!!! (If you click them, they get bigger. :D )

Here is a picture of Jewel and her therapy service dog Grace lounging around.






A photo of Dad telling Jewel a story on the couch. :)





Last Saturday when Jewel got to see our friends rock band "Visibly Shaken." Jewel totally loved the concert! One of her favorite things to do is listen to music and dance to it. :)




Love this photo of Jewel, thank you for posting these Makena xoxox Mom
Posted 4/12/11

Dreaming

Today i took a nap because I was really really tired from this weekend, (raven and I slept over at a friends and didn't get any sleep). When I slept I had a dream that Jewel was sitting in a chair, feeding herself cake. I remember that we were all around her watching her feed herself, and then Dad said something and she stopped. lol

When I told Jewel my dream, she smiled and her immediate question was "what kind of cake?" I told her I didn't know, and she said "what color?" I still didn't know, but I assured her that it was really yummy.

Jewel had a great hippo-therapy session with her occupational therapist Chrystal, and I got some awesome footage. I'll upload it soon. The horse ride must have tired her out (she rode for 40 minutes) because it is 9:12 and she is asleep. It is amazing.

Sunday, April 10, 2011

Owie Hip

4/10/11 Sunday
O/T, Crystal came over to work on Jewel's hips.
The work done was very slow and controlled, always supporting the hip with your hand to anchor it. Crystal went through the Basic Range of Motion on Jewels legs. Always anchoring the hip in place, encouraging Jewel to breath and relax, constantly asking her question regarding pain. She started with Jewel lying on her back and then moved her onto a wedge working on her, as Jewel lay elevated on her stomach. We watched trying to soak it all in, trying to understand and memorize so we can duplicate it when the therapist leaves at the end of the month.
Jewel's hip muscles are so weak and they need to be strengthened through stretching and then weight baring. This will keep the hip in place and maybe with strong hip muscles, they will over ride the tone. Then Crystal worked on stretching Jewel's arms with the same Basic Range of Motion principles, slow and controlled, always anchoring the shoulder blades. Then she had Jewel in a nice sitting position, Jewel had her legs criss-cross with a wide base, and Crystal showed us how the back is divided into; the cervical, thoracic and lumbar. We need to strengthen the thoracic to get more neck and head control. Thank you Crystal for coming on a sunday to work on Jewel with such short notice! Now Jewel's legs are the same length and her hips are in line :-) Tip: If one leg is suddenly longer and the child is miserable, the hips are most probably out. Be well xx

Rock and Roll

4/9/11 Saturday
Jewel loves Rock and Roll!
My girlfriend's daughter turned 15 and invited us to come celebrate with them.
A local young band called, Visibly Shaken played at the birthday party.
From the onset Jewel was taken in by the band and the live music!
She said they were "great", and I think she thought the boys were "cute", since they are mostly fifteen and sixteen years old.
I held her as she stood erect & flat footed on a chair for three songs, smiling from ear to ear.
She became an instant fan last night, what a fun evening for all of us.
There is something so wonderful that takes place when a band enjoys playing together and for an audience. These guys were great! Jewel wanted to go up on stage and sing with them, so we compromised by dancing to one of their songs together with Aunty Cheri, their original songs are just as good if not better than the covers they play. Dina's husband made a lovely stage with a disco ball, colored lights, white tube lights, red laser lights, a slide down one end of the stage, graffiti and all, it was an amazing back yard party.
Jewel did not want to leave and said it was,"unfair" that her older sisters got to sleep over :)
I think she popped one of her hips out from all the dancing and it was an intense night for her and I, her hip is better now.
Jewel had a fun evening, one she will not ever forget!
Let the music play!

Saturday, April 9, 2011

Express Yourself

Express Yourself!
Discussions are important, to be able to voice your ideas to another coherently.
To have a voice, to be heard.
I have always encouraged my children to communicate, voice your feelings / ideas, do not stuff them, because they are important. I want to know what they are thinking, what they are feeling, it is important to be validated.
Two of my girlfriends have been praying for Jewel for years, for her to have a voice, for her to be able to speak, talk, express her self. This is such a selfless and deep way of showing love, I did not ask for these prayers, both these women felt it on their hearts to pray specifically for Jewel this way. What a calling and commitment of love towards my daughter, thank you Doris and Kathleen!
This is where the speech and language pathologist comes in. This therapist is most critical to start working with consistently as soon as possible. They work with the child on communication, asking questions, pointing - if your child can, teaching and using sign language - if your child can use her arms and hands / fingers to communicate. They use eye gazes as well and this is what we used with Jewel to communicate with, Jewel's facial expression, especially her eye gazes is how she communicated during these sessions, how she picked her answers.
The Oral Beckman exercises are the golden key people, do them with your child faithfully and you will see results. Even if it is just seeing the drooling stop! These Oral Beckman exercises will help to teach you how to manually exercise your child's mouth, there by strengthening, stretching, and stimulating all the muscles. The games are fun and all purpose full, they aim to aid in control in drinking so as not to aspirate, aid in chewing and swallow control, nursing helps this as well. The games aid in helping to eliminate drooling and controlling the suck, swallow, breathing technique that is imperative to master. I can not say enough about this, work with a speech and language pathologist forever if you have to, it is worth it!
Then they also aid in sounding and shaping the lips for speech and communication.
Jewel has come along way with the help from her speech pathologists that have come alongside her. Thank you speech pathologists, especially Beth that has worked with her for years now!
Now the endless crying and frustration both from Jewel and us has drastically diminished because we are now better equipped to understand Jewel and figure out what she wants or needs, where it hurts and what she does not want to do. It was such a powerful moment when Jewel learnt to say "NO"! xx

http://www.beckmanoralmotor.com/
http://www.beckmanoralmotor.com/about.htm

Friday, April 8, 2011

Friendship

4/7/11
Thursday, such a full day.
Another amazing 0/t session, which Makena filmed.
We will be reviewing session to learn from. Thank you Crystal

We had a great BBQ at the horses with Kandi and her family,(the owner of the horses), Crystal our O/T, our family, Cindy,(who started Jewel riding, and still rides with her). Taking time to enjoy ourselves and come together was such a gift, especially since Crystal will be leaving our Island. Come 5:30 we were all arriving. Flash the painted horse was out and Aunty Cindy went to pat him and Jewel and I came along side her to say hello to "blue" as Jewel likes to call Flash, since he has blue eyes. Cookie Dough saw this and got jealous, he figured away out of the back pasture and came galloping up to us, showing off, running round the round pen, it was a sight to behold. Especially since he is usually tripping about and slow moving. I guess he had us all fooled. So we gave him some attention and loved on him as well, then put him back in the back pasture to eat his food. Later Cindy put the bare back pad onto Flash and rode with Jewel and as soon as Cookie Dough saw this he made his way back out of the back pasture, only to repeat his vigor for all of us to see. So we dismounted Blue and saddled up Cookie Dough with the bare back pad and took Jewel for a short ride on him, she rode solo and gobbled up all the attention given to her. She loves attention, especially if she knows the person is a real cow boy or cow girl! Thank you dear horses and friends for this exceptional evening of fellowship :)
I encourage you to go out and make some friends, go to a barn that does hippo-therapy, even if it is a bit out of your comfort zone. Jewel is always opening doors for me to grow through, thanks Jewel! Thank You Makena and Raven for coming alongside your sister and sharing your love, hearts and world with us! You girls are the best! xxx





4/8/11
Chiropractor session for Jewel.
I clean his office as trade for his services on Jewel.
He worked on her head a lot and the rest of her body.
Jewel trusts Dr. John and all the sessions are usually great, we lightly tickle to distract her when he manipulates and adjusts her. Thank you Dr. John.

Diamonds in your back yard

I want to encourage you to look for the diamonds in your own back yard!
I am always hearing about how great it is in some other state, or country for individuals with disabilities. I think the best thing is to make a difference where you are and know that the ripple effect will influence others. I believe all the support you will need is close by. We just have to look and dig in our own back yard. We used to cry and treat people harshly when they stared at Jewel or said something ignorant. Now we know that the most powerful thing is to educate ourselves so that we may be able to educate others. Making friends with those potential foes is what life is all about. Our story has more common elements in it that include, rather than uncommon elements that separate us one from another. Share your story, and come along side another person that you may think is different. Friendship is were all the power and love is and the walls come tumbling down.

Face book fan page for Camp Imua

Here is the fb face book fan page for Camp Imua, go check it out and become a fan!


http://www.facebook.com/pages/Camp-Imua/193263960696653

Including Samuel DVD

1/8/11

We ordered the DVD; INCLUDING SAMUEL, an amazing and heartfelt educating documentary, by Dan Habib

Today we watched the accompanying DVD that comes with Including Samuel.

So worth watching, because it is not only exquisitely filmed, it eloquently gives a voice to children with disabilities in America but it also gives a voice to the families of these wonderful individuals.

I recommend this DVD, please go to www.includingsamuel.com

Check out the Institute on Disability / UCED University of New Hampshire
"The IOD bookstore, leading resource for products that support community inclusion and individual excellence." www.iodbookstore.com

Please come and visit this sight, take the time to listen and enlarge your ability to learn something new. Today we learnt about augmentative communication. We will be looking into learning more about the dynavox.

Grief

4/8/11 Friday

Books are our friends.
I love skinny books. They seem to just give you the bare bones and leave you to build on it.
I picked up this book at a yard sale, the appeal was its size, just 64pages. Printed C in1962,1971
I do not know if they have updated this book or if there are more recent printings.

The book; Good Grief by Granger E. Westber

We all go through a grieving period in life, especially parents whose children have disabilities.
This book validates our grief and encourages the reader to grieve and support those who are grieving.

Check it out.

Thursday, April 7, 2011

Camp Imua

4/7/11 Thursday
Taking Raven to get all four of her wisdom teeth out!

If I haven't told you about Camp Imua I will be, until then check out these two clips on youtube :)

Fundraiser clip for Camp Imua;


2010 Film clip about Camp Imua;


Imua is a Hawaiian word; To move forward.

Camp Imua has been a free camp for Maui County (Islands of Maui, Lanai & Molokai ) special needs school age children.
If you would like to donate money contact Imua Family Services and ear mark the money for Camp Imua.
Imua family services reaches the community's children from birth to three for evaluations, speech therapy, physical therapy and occupational therapy. These services are free.
Camp Imua is a five day sleep over camp and reaches 50-52 campers and 200 volunteers, make this happen.
High school and College students get a school credit for this.
Students from around the world fly over to make this happen, thank you amazing people!
We have nurses, kitchen staff, doctors, and college students, high school students and adults volunteering.
This is where Jewel met her first real friend, and I met such wonderful people both young and older from our community, enlarging our circle of friends, Mahalo!

Wednesday, April 6, 2011

Jewel will get to post some day!

I was informed that this blog is more like a journal/parenting book, maybe a snoozer for some, oh well that is fine with me.
If it is too long to read it, then don't.
Life is great and I have come to enjoy putting up the posts, and to think I am usually pressed for time and can only give a couple of minutes for each post. To think of what I would write if I had more time, ha ha , guess it would be put some into hibernation.
:) Warned you I was long winded. I just love my children and love to help share information and experiences if it can only help one person improve their quality of life. xx Hoping that Jewel will get to post some day soon.

Everything that we need right where we are!

4/4/11
Monday morning 8am
Jimmy worked on Jewel for a good 30 minutes; he worked on her occipital giving her an occipital relies. He said her head was all jammed in. He worked on aligning her hips, worked on her neck and gave her legs a light massage.
She surrender, allowing him to treat her. By the time we left her neck was free and she was relaxed
He said to give her a cap full of minerals from Peter Gillham's Natural Vitality, into cherry juice. so we bought black cherry concentrate from the health food store to put the minerals into. He said keep giving her the Calm water which has magnesium sulphate. He said add flax oil, it is good for the joints, and get some vitamin C. I forgot to ask him if it should be buffered C, I will text him later on this. Jimmy also said to use a tennis ball under her butt and this may help give her some relief, he suggested putting vix on the bottoms of her feet and then put socks on them. He said the base of the foot is where all the pressure points are and the vix is like a menthol / eucalyptus that will help with her congestion.
I was so close to taking Jewel into the doctor's office or emergency room, they would only give her Valium or some antibiotic, not adjust her hips and give her relief from pain by administering a gentle occipital release. This way is more natural and gets to the root of the pain! It is also done in a nurturing and gentle way, his room is small,dimly lit and smells nice with interesting Art objects all around. Thank you Jimmy xx Jimmy never charges us because this is part of his Manna, his spiritual way of giving back.
We are still giving Jewel her tonic that I listed a couple of days ago, we give her 2 teaspoons at a time or a dropper full at a time, it is nasty and hot for her, we call it dragon water, but it does work!

Jewel is back in her stander for 1 hr at a time, this piece of equipment comes from prime engineering, super stand. It aids in weight baring, correct postural support. We have still not worked out her AFO's with the orthotist at Shriners Children's Hospital, but we have decided to make the old ones work, it is better than not going into the stander. To go into the stander, it is recommended to have the AFO's on because it gives a base of proper foot & ankle support. This way Jewel will not pop out her ankle.

Our O/T session was at the horses. Jewel rode for 40min and it was bare back on Cookie Dough. Crystal the O/T did not ride with Jewel, instead she side walked along side the horse giving me instructions how to better help Jewel ride solo on the horse.
Correct posture, positioning and placement of every body part is key. Shoulders need to be supported when arms are stretched out gently. Everything is done gently with intention. Elbows directly under shoulder blades, and hands flat with open palms. We will bring Jewel's soft hand braces next time. I learnt a lot, and the ride was successful, Jewel was mostly facing the horse's rear because he is less bony there and it has a wider base of support for her to weight bare on.


"Differences are not intended to separate, to alienate. We are different precisely in order to realize our need of one another." - Desmond Tutu


4/5/11
Tuesday
Still working the program, Jewel is much happier and we are all doing better.
Our sanity is directly linked to her well being :))

Went to the horses with Cindy, "Aunty Cindy". It has been a long time since we last went riding with her, she has recently gotten married and looking as beautiful as ever. She is amazing around those horses. She was the reason Jewel gets to ride, thank you Cindy!! Today Flash the painted horse was there. We decided to feed Cookie Dough and use Flash. Flash or Blue as Jewel calls him has watched many sessions, this is how animals learn from each other. (Actually Java, the young Arabian has been watching Cookie Dough work with Jewel. Java just got gelded and his is much sweeter now.) Jewel wore her soft hand braces and yes they did help to open up her hand, for they gently pull her thumb out. Anyways Jewel rode so nicely, solo for 30 minutes and 30 minutes with Cindy as the back rider. It was a sight to see, we all cried with tears of joy. Jewel rode holding her own with Cindy! The sigh was beautiful and Jewel looked like an abled child, just riding with her Aunty. All the "labels and disabilities " melted away. Such a thrilling moment. This moment is the tip of the ice burg, the part you can see. What you can not see is what a large base of ice lies under the water holding that protruding tip out of the water. It has been years of work, love, prayers, believing, dreaming, working, consistent therapy and years of horse back riding with Cindy that has lead up to this moment!
Never give up!

So here is a SHOUT OUT to all the private citizens who open up their barns to help children with disabilities and labels reach/realize/achieve their full potential! THANK YOU! To all the animals who change our lives and love us unconditionally and aid in our healing, thank you!

I hope you all can get your children out into nature and around animals because I believe it is healing for them.
I believe that God has put everything that we need where we are right now, we just have to have eyes to see and ask for what we need. The grass is always greener somewhere else but when you get there you still have the weeds, to water, the work.

Tuesday, April 5, 2011

Prime Engineering - KidWalk



This is the gait trainer we are looking at getting for Jeweliana, it is from Prime Engineering, and is called a Kidwalk.
The reason I like it is because of the lateral weight shift during ambulation. Which basically means, it allows the child to have motion while in the gait trainer, and doesn't force them to stay still while learning to walk. 4/5/11

Monday, April 4, 2011

More hippo-therapy videos

Posted 4/4/11  Here is a video from yesterday's horse back riding session.  Hippo-therapy!



Nana asked for us to put some photos up of Jewel and her therapy/service dog Gracie. So I will do that sometime this week.


~Makena