All tired

1/31/2011 Mon.

Sat up with Jewel on the couch all night. She was super congested and kept saying "hate sick" and "help" when her phlegm was choking her. It is great that she has a voice and can tell us things. :)

Using Black Elderberry to boost her immune system, Chestal honey for congestion, echinacea drops for children to help with the infection and tons of throat coat and breath easy tea. These teas only taste good when you need them, other wise they are yukie! (according to Raven)

Cancelled the body worker appointment and the occupational therapist appointment. Hopefully tonight we will all get some needed sleep and tomorrow Jewel will be doing better. xo

Soup

1/30/2011 Sunday

Jewel is sick :( Hope she gets better fast. This is where she takes steps backwards, it is hard on all especially her. Raven made some good soup for Jewel using our Vita mix, thank you Raven xo Her spasticity kicks in a lot when she is sick. Get better fast Jewel.

Time to reflect

1/29/11 Saturday

Today I managed to practice meditation, it is day four of my twenty-one day challenge. This is a gift that I am giving myself. I don't get much time for cultivating my other passions. I need to be present in my day, in this way I am able to enjoy the moments and just love my children. When I am not present, I tend to be more sorrowful and fearful. This does not make for a happy mother, and we all know; the mother sets the tone of the home. As mother I need to be grateful, joyful and peaceful. Sometimes I get consumed in the vortex of need based tasks and I am not really living. I am striving for balance, not just living to maintain the lists. There is a pile needing to be filed, bills to pay, invoices to mail out, thank you cards, correspondence, birthday cards and gifts, parties to organize, friendships to celebrate, book cub, horse therapy, tutor, occupational therapy, speech therapy, massage, body work, play time, barbie time, play mermaid, homeschool, reading, meal preparation, meal plans, meal shopping, driving, Awanas, house work - (ha ha who has time for that, I am too busy cleaning other people's homes). It is easy to loose sight of the quality of our moments together.

I need to balance my older teenager's needs and my almost ten year old, (Jewel). Need to take care of a sick child, Raven is sick today :( .

Beware of parenting out of guilt because this is a sure miss. I have parented out of guilt, thinking I was compensating for Jewel's disability, trying to make it up to my older children, for at times our days revolve around Jewel's needs. I expect a lot from my older girls because we are a family and families have to stick together. Jewel has and still does need many helping hands. Raven was six and a half and Makena was seven and a half when Jewel was born. These to girls have had to step up to the plate ever since my pregnancy because it was a high risk pregnancy. Full of bed rest, emergency room visits, constant bleeding, and then a mother who was medi-vact to Honolulu for pre-term labour. I am blessed that in spite of all of this my girls are very close and love each other, really they are best friends!

Our life with Jewel, and her sisters is very organic. When Jewel was little all I remember doing was crying. My life was too big for me, I was not equipped to be a mother of a child who was so fragile, who was so developmentally delayed. My existence became to nurse, keep my milk flowing for five years, make sure Jewel made it alive through another night. She screamed for years at night, she does not do this as much any more. I managed to nurse Jewel for four years, a great feat for us. I am rambling with these run on sentences. To simmer it down, I am learning to savour the moments, make the hard choices and decisions, keep one foot going in front of the other. Keep breathing, keep smiling, keep praying and keep believing. Jewel had a couple of accidents today and we all lived through them, and so did she. She does not like to fail, she is a high achiever like Raven. Being diaper free is a great achievement, especially when Jewel relies on all of us to get her to the bathroom. Her dependency used to hurt my heart now not so much. Because she is a whole human being, a complete soul and a gift from God. I am just grateful for each skill that Jewel can master, in her own way, in her own time, and it is good. Each one of these marks is a celebration for us all because it has taken years working along sides her, commiting to the goal and purpose and then we have the Aaah moments. We all win on these days. I will not think on the future, just enjoy today, this evening and yet I will hope for and believe in a better tomorrow. I am my daughter's greatest fan, and I hope you are your children's greatest cheerleader as well!
Take time to Reflect.

1/28/11 Friday :)

It has been a long day, and I will leave it at that.

Trading for services

Thur. 1/27/11

When I arrived to pick Makena up from work she told me that there is a book in the library on how to blog. I may check out this book for some ideas, great suggestion Makena. I know that my blog has some spelling, punctuation and grammatical errors. I tend to censoring myself when I get caught up in my head, then when my heart is engaged I seem to set sail. Being able to consistently post is an accomplishment for me.  I hope our family on the mainland will check out my entries and feel a little included, kinda like a fly on the wall. I also hope that some one with a special needs child will be encouraged in some way. Jewel will be ten in less than a week, it has been a long journey and we are still learning to pushing beyond the Cerebral Palsy label.

Last night was a rough sleep for Jewel/me. He spasms kicked in, thank goodness for the hip abductor brace from Shriners. 11pm is when it started and it lasted into the wee hours. We awake tired but sometimes Jewel gets to sleep in and get some rest.

Today is day three for Jewel being in her big girly panties. Yay! :) No accidents either! Raven and I went to feed the horses, and as I was driving, Raven was texting Makena to give Jewel more water so that she can go pee. I love these girls, they are so attentive to each other especially their younger sissy! It takes love and compassion, patience and laughter to get through the day. Some days feel like weeks, today is another good day!

Raven and I went to feed the horses, we groomed Billy, aka Cookie Dough and he seemed to eat a little faster. We brought three bags of food to help with his food. I know that as he gets older Kandi will have to make some tough decisions about his quality of care and life. I trust her, she has a healthy balance of heart and mind. I was thinking of this yesterday and I cried for hours, I cant' imagine our world with out him, we love Billy and to me he is so much more than a horse. We love him and he has enriched our lives and helped Jewel so much. He is the only animal that we pray for!

No O/T because Crystal was sick, she is such an amazing therapist, an angel really! Hope you get better fast! xox We took Jewel to Dr. John the Chiropractor, her session was good, he found a little tickling was just enough of a distraction to do an adjustment. He is very gentle and careful with Jewel. Tickles with a purpose! They work well together, Jewel trust's Dr. John which allows their friendship to grow. Raven and I sit in the office and help with Jewel as needed. Dr. John does not charge us, so we do a trade. We clean his office, then he works on Jewel. All parties are happy.

Off to read to Jewel, hope you have a nice book that you are reading!

Books

Jewel is currently reading, or at least I am reading these books to her;
1. Ella Enchanted by Gail Carson Levine
and the seven book series,
2. How to train your Dragon by Cressida Cowell.
Jewel loves books, this is her long time love and passion.
This was one of her first words; "Bookie" and "Doggie Bookie", 2006.
Thank goodness for the library and great librarians who helped me find all the doggie books for Jewel and yes, gotta love those books on CD, they have saved us on our tired days! Books rock!
Today Jewel had an awesome therapy session today. The P/T Aunty Carol came at 3:00 and worked on maya facia, then the speech pathologist, Aunty Beth came at 3:30 and they over lapped, working together on posture, form and breath. Beth is focusing on the letter "R". This is one of Jewel's new years resolutions, learning to master and say the letter "R". Other resolutions are; to read well/better, to sit up by self, to walk. She gets to pick what she wants to do on the list, she made a list a couple of years ago and reached all her goals except one; to ride a bike.
Goals are important especially the ones we make for ourselves.
Be well xo

Horse boy - a documentary

Aloha 1/26/11

Thank you Jo for turning me on to this documentary;

http://www.horseboymovie.com/Film.php

please check it out!!

Here is another sight about horses and special children;

http://www.wayofthehorse.org/Articles/horse-therapy.html

Both so amazing and so inspiring :)

photos at horses

An old blurry photo (that makena didn't want to upload) of Dad giving Jewel a piggy back ride while petting Flash.


This is Flash the painted horse, Jewel calls him "Blue" because he has blue eyes. Jewel and her Da, this is how Gary takes Jewel for a walk. It is a great stretch for her hips, I can not carry her on my back. I am thankful that Gary carries her around like this.

An analog film photo of Jewel on her horse from december 2010


Sometimes Billy aka Cookie Dough is just to tired, so we groom him and feed him and do a lot of work on him while he eats. Sometimes having fun together is the best medicine!

Full plate

1/26/11 Wednesday
Chin up! Chest out! Back straight!

Jewel had a good nights sleep, hens so did I.

I can not care for Jewel alone, this is obvious. She needs, her Da, Sissies, Aunties and friends, therapists, and animal friends too. I have come to rely on a community, a safe circle of hearts. Thank you just does not seem enough, to say to all those who have come along side us. Yesterday would not have been possible if it had not been for all those people that I mentioned and all those whom I did not mention. All those therapy sessions have helped this moment to be great, thank you to all the O/T, P/T, Speech therapy, massage, chiropractic, body work care!
Thank you to all those children at Hope Chapel who collected money, donated their allowance, recycled cans, thank you for wanting to help Jewel get her Super Stand, for it is helping her body a lot! :) Thank you for all those who have prayed and are praying for her, still believing in her healing and progress. I have never had the spirit that this is it for Jewel, but I continue to believe in more ability for her. I have hit many valleys and my daughters help me through. They are amazing prayer warriors, thank you girls. Thank you to my girl friends because with out them I would still be crying and not in a good place. We need each other to to laugh and cry together, help each other up, speak into each others lives, witness each others lives because we are part of each other's stories. We are a private family and it is easy to get isolated but thanks to my friends this has not happened. Thank you Kathleen, the children's librarian and my dear friend Doris, who has moved away, for always recognizing Jewel's intelligence. For always praying for her speech because ladies she has come a long way, and your love, believing and prayers have blessed her. Who ever may read this, I hope you have such people come into your life and if you have a special child, I encourage you to open your heart up to such people. My mother in law, Ina gave me some advise when Jewel was born. She said, " Believe in God, believe in yourself and believe in your daughter!" Thank you Ina, I have passed these words onto to others who have gone into premature labour, and I am sure it has helped them as these words still feed me. Today is a good day, merry trails to you all!

Anne, thanks for being our first follower! I like your suggestion of getting a video! I will try to, though my phone is old school and does not take videos, no video camera in the house. Maybe someone will video a session and as soon as we do I promise to post it. I rely on Makena to upload the pictures, since she is computer savvy and got this blog started, thank you Makena. You are amazing and awesome big sissy!

Jewel and time with Cookie Dough

1/25/2011 Tuesday

"Not tired", is what Jewel has to say right now, even though we want to get her off to bed earlier.

She has never napped, I figured that her bio-rhythms were messed with in the NICU and she just doesn't want to miss anything! What an amazing evening. Cindy picked us up at 4:15 and she had her friend Martha form Ohio with her. When we got to the horses, Billy aka Cookie Dough was waiting for us, and ready to eat. But first, Cindy and Raven groomed him, Jewel watched her Cookie Dough get ready for her. "I help", is what she usually says, sometimes we have her stand on a step up and hand over hand we brush Cookie Dough together, it is a lot of work. We have to focus on her balance, putting both feet flat, and trunk control just to mention a few things.

Cookie Dough was very stiff so Cindy walked him around to warm him up. His new shoes look great, but he is still tripping a lot. Jewel enjoyed Martha watching her as we encouraged her to lift up more. Cookie dough is so patient and he always listens to Jewel as he moves his ears to her every whimper. Jewel was a bit whinny and stubborn with our directives until we heard a "hello" from a familiar voice.
Victoria and her sister Frankie appeared at the gate. They saw us as they were driving by and pulled over. We have known Victoria and her family for most of our homeschooling career. She is an accomplished horse rider and is very interested in horse therapy. She was all lit up and beaming with joy which was very contagious. They asked if they could come and watch, Cindy invited them over. Somewhere inside us we all crave recognition, and Jewel got the wind in her sail as soon as she saw the girls. Jewel knows that Victoria is a cowgirl, and has ridden in the fourth of July parade. Trying to impress Victoria she worked extra hard, and became a horse rider. Gone went the slouched over whinny kid and in arrived a strong girl. She sat up tall and rode Cookie Dough :) Cookie Dough is arthritic and stiff, showing his age these days. He stumbled and Cindy walked right close to him, nudging him with her elbow, as she lead him through the pasture of wild grass, cactus, and monkey pod trees. As Raven and I walk besides Jewel, we encourage, direct and coach her. Rearranging her hand placement for optimal stability, running our fingers gently down her neck and spine to stimulate, patting her butt to give imput and que her body to sit up straighter, straighten her legs back into position, check the horses ears, surrounding, and so much more. Being alert at all times is key to safety. We ended our session on a high note amongst friends. Next we put a towel over the saddle and Jewel belly down, over the saddle does push ups. She likes to count in spanish, the goal is for her to lift up and back down with head control. I stand behind bending her legs so that her movements are planned and voluntary versus just spastic tone. The difference between these two movements are that one is more functional than the other, and one uses the correct muscle movements and creates functional patterns to build off. Raven fed all the horses, she mixed the rice bran into the food that had been soaking for Cookie Dough. After Jewel stood on bare flat feet as I supported her. She felt stronger and more present in her body, her core was stronger. She stood staring at her horse as he ate his food and she reassured him with a "good boy"!

Cindy has been talking about getting Billy some series of shots for his arthritis. The shots are 275 dollars and we were discussing fundraising ideas during the ride to horses. On our way home Martha gave Cindy a check for Billy, it was for the full amount! Thank you Martha! Thank you for helping Billy aka Cookie Dough, thank you for believing in Jewel's dream to be able to ride in the parade. Thank you for all the encouragement you gave straight from your heart to Jewel. Thank you Kandi for letting Jewel ride Cookie Dough and for trusting in the process. Thank you Cindy for being there at Ross and opening up your heart, and inviting us out to ride with you. Over these years you have tirelessly been there for Jewel through the tears and the many "No's" and all the certificates, love, encouragement,& patience. It is such a gift you have given all of us. I remember when Jewel was still so small, she would ride with Cindy and rest on her chest, Jewel was so tiny then. Thank you Raven for always willing to do what ever is needed. You have shown your self to be such a loyal big sissy, I am very grateful and so very proud of you. Tonight Raven said to me, "Mom, I can finally see it all coming together". Thank you Victoria for showing your heart's delight when you came over this evening to say "hi" and encourage Jewel. Blessings to you all, life is such an amazing gift xox

Helmet

Cell phone pic of Jewel in her horse riding helmet. :)
This photo is with Jewel in her brand new riding helmet, 75 dollars, wow!
We went with Jewel to pick out the helmet at a real cowboy store!
It was a very special event and she held onto the bag's handle all the way home.
It is a challenge for her to keep her head upright with out a helmet on, never mind with a helmet.
We keep trying, because safety is important and one day she will be able to wear the helmet with ease.
(The helmet usually chokes her because her head flops down a lot.)



Photo Makena took yesterday at Iao Valley.

As much as possible we try to do things together with all the girls, like going to the library together.
Sometimes it is tiring, because we live on the third floor with no elevators in the building, and it is cumbersome to dismantle and reassemble the wheelchair. But mostly these are excuses and one must just do it, because life is worth living! Iao Valley is such an amazingly grounding and lush place. Lucky we live Maui, I love my family xoxo

Jewel on her horse

Photos by Makena Gadient

Robin said that I needed more photos, so here they are Robin, and thanks for the suggestion.
Top photo is our Christmas shot with Billy aka Cookie dough. We did the dress up photo and we all looked so fake that we decided to take a candid shot with Billy and that is the photo we used for our Christmas card. This is a photo of our whole family, and Jewel looks like she has no disability here, Raven is acting as a back rider.

The second photo is of us working with Jewel while the horse is stationary. There are a lot of things that you can do while the horse stays still. Each hand is placed purposefully, we try to touch Jewel in a way that aids in her progress. If we do too much for her we hinder her gains. We place our hands gently but firmly applying minimal pressure. We consult with the O/ T and talk about how, what, where, when constantly. How can we move past the tears and the "no", how can we help motivate and engage her mind, how are we hindering and how can be better help. This is when I wish I had taken some psychology classes. As long as we can engage Jewel's mind and keep her happy, she can do so much more. Other wise beware of the body that complains. You see everything is very hard for Jewel, everything is work, even holding up her head and taking a deep breath. We use this great book; The Horse, the Handicapped, and The Riding Team In A Therapeutic Riding Program. A Training Manual For Volunteers by Barbara Teichmann Engel, Margaret Lois Galloway, Mary P. Bull, Amazon sells this book and it is reasonably priced and easy to read and comprehend. Check it out.

Day one in big girl panties 1/24/11

1/24/2011 Monday
I wrote a small entry a couple of days ago and hit the save and post buttons, then some how managed to loose the post, dang! I just know I had something important to say, but I was tired then as I am now and just can not recall much.
Billy lost his shoe and Kandi just had him re-shoed, she looks so handsome and beautiful. Raven & I have been diligently feeding Billy aka Cookie dough, to keep him healthy, he tends to be too skinny. We have learnt to groom him and he has brought so much magic into our lives. Had some rough nights, Jewel has been waking a lot and her discomfort & spasms in her hips keeps me up. I usually rotate her and try re-positioning. Today she made 1hr 40min. in her super stand. It is a piece of equipment that lays down flat, we strap her in and then put it into a vertical position. This helps with correct positioning, and bone compression. We have to put her AFO's on, they are a fiberglass outer shell that keep her feet flexed and give the ankle support so that they do not buckle under her. The kids in Kihei from Hope Chapel did a fundraiser collecting change and recycling cans till they had a couple of thousand dollars. They paid for Jewel's super stand and therapy sessions, it is a huge blessing.
Today Jewel has spent the whole day in "big girl" panties, her little mermaid underwear. She has gone to the toilet through out the day and they are still DRY!!!! Yipie :)
Well dreams need believes. I hope you are living your dreams. I rand into Darby at Costco, he is in charge of the Keiki dream program on Maui, kind of like make a wish foundation. He reminded me that as long as we believe we can, and never stop dreaming and believing, only we can make our dreams come true!

Dancing in the water trough

Jewel and Raven standing up together.

Dec 2010

This is Raven holding Jewel up by the arms. They are standing in the horse's water trough. After cleaning, we fill up the water, cold water, and Jewel has so much fun and doesn't realize that she is working on her standing. The cold water stimulates her, and helps give input. They sing and she stands with bare flat feet, as long as they are having fun, she stands!! We do not do this often but it is so amazing to see them, for a moment Jewel is just a girl playing with her sister, and the disability is not visible. I drink this moment in and freeze it in my mind. My heart is full of hope.

Cookie Dough and Jewel

I am not very consistent but I am reminded that this blog is for Jewel, to write about getting her ready to ride in the fourth of July weekend, which is the Maui Rodeo parade. Jewel is showing so much more core strength, and Billy aka Cookie dough is showing his age. I wonder if he will be strong enough to make it in the rodeo parade. Jewel will still need a back rider or us to lead and flank the horse, giving her the support she needs. I called my friend Suzie and she said it would most probable take a half hour in the procession, not including getting there and situating, then getting back home, both for the horse and Jewel. Is this really realistic and is it possible? This is Jewel wish, to ride Cookie dough in the parade. We have been trying to fatten Cookie Dough up,he can't eat grass or hay, since it just falls back out of his mouth. So we soak alfalfa cubes, pellets and senior food topped with rice bran. And he can eat that mix for over an hour, just gumming at the slop. His balance is a little off when we clean his hooves and he seems to constantly trip when we lead him. Though some days he still shows spirit and when he warms up we both forget his age and Jewel seems to forget her disability.
I was moved by John Anthony Davies poem,
I saw a child;
I saw a child who couldn't walk, sit on a horse laugh and talk.
Then ride it through a field of daisies and yet he couldn't walk unaided.
I saw a child, no legs below , sit on a horse and make it go, through woods of
green and places he had never been, to sit and stare, except from a chair.
I saw a child who could only craw, mount a horse and sit up tall put it
through degrees of paces and laugh at the wonder in our faces.
I saw a child born into strife, take up and hold the reins of life
and that same child was heard to say,
Thank You God for showing me the way.
xoxo Such a telling poem, so lovely and so true. This old cowboy's horse has brought wonder into our lives. It has helped Jewel dream instead of stare off into space. She lights up like the sparklers from the fourth of July when she rides Cookie dough. It has been a journey of love and trust. We ran into Cindy at Ross about three years ago and she suggested taking Jewel riding, she was waiting for her saddle to be repaired and was killing time at Ross. I hesitated because we did not have a productive experience at a hippo stable. Jewel's sisters; Makena and Raven got to groom the horse, but he was a huge retired Clydesdale, way too big, fat, tall. Raven and I were running to keep up with the horses gate and they did not allow back riders, they were not prepared or equipped for anyone that small. Now Cindy grew up with horses and she is a Mom which makes her an expert in my books. Her instinct and heart made for a perfect back rider for Jewel. She has compassion and a no bull meter being a Mum helps. Cindy got Kandi to agree to let us use her old horse. Kandi has never asked for any money or trade in labor in return. She just wants to help, though we did sign a waver for liability reasons. We have tried to go to the horses once a week and this has varied with the seasons of life, since Cindy is a single Mother. Makena and Raven have always been involved with their sister and they have learnt a lot about horses with this opportunity. Raven has learnt to muck, groom billy, feed the horses, clean the water and help with horse therapy. She helps position Jewel and lead the horse. Crystal our O/T comes out and rides with Jewel, helping her with posture, core strength and positioning. Horse therapy or hippo therapy is good for the self esteem, recreation, circulation, hips, core strength and breathing, love, joy and so much more. Wow. I could go on forever! It has been a long journey and commitment from Cindy partnering up with Jewel. Jewel is to tall to have Cindy as a back rider now, and our O/T is leaving in the end of April. Both Jewel and Cookie dough need a miracle. I pray for them both constantly :) I hope this is not too boring?

Another day

01/21/2011 Friday
Last night Jewel was very wound up and she finally fell asleep around 9pm. I put on her hip brace and unfortunately she fought it until I took it off. Most times I just leave it on and and she settles down but sometimes it is counter productive to leave it on. She will fight her brace until she breaks out in a sweat and throws up. She has gotten real chatty late at night which I have to ignore or I'd never get any sleep since she sleeps with me. This way I can rotate her, help her when she struggles and make sure she is not too hot and breathing. We went to see Cookie dough yesterday for a therapy session, he is an old retired rodeo horse, a quarter horse. He is the sweetest horse you will ever meet and he is the type they write songs about! He was very low energy, so after grooming him and giving him a short walk, we fed him and did the session stationary on him. We put Jewel on the saddle and pulled the bench close to him so the occupational therapist, Crystal could stand on the bench and work with Jewel on the saddle.
Another amazing session, lots of diagonal work and balance work. Jewel did large to refined diagonal work while sitting on her but on the saddle. This is huge, since in the past she would not sit but extend upward in a reflex using the wrong muscles, making the movement undesirable and non functional. She said she feels like she is flying on the horse, she loves Cookie dough aka Billy and he loves her. It is lovely to see them together, it has been three years now that we get to take her to the horses. Since the horse is around 30yrs old sometimes we do not let Jewel ride because he trips too much or seems so tired. Thur. morning 20th, we went to see John the body worker. He does not charge to see Jewel, because he just wants to help her. The sessions are 15-20 min. and they are very gentle. He gently touches her with a couple of fingers and right before my eyes she unwinds, changing from tight to relaxed. He mostly works on her nervous energy. Got to take Jewel to the bathroom, go to go to work. :)

Last night Grandpa Sean-Dad called while mom was stretching Jewel before bed. He usually calls us three times a week, sometimes four times a day if we are not home to pick up during his initial call.
Right now it is snowing in the part of Canada, where he lives, and he called to tell us what he did that afternoon. He was outside in his wheelchair and he had a coconut chocalate candy bar. There was a little girl where he was, and Grandpa Sean-Dad told me that "I could tell that this little girl really wanted my candy bar. So I asked her if she would do something for me then i would give her my candy bar. I told her all she had to do was make three snow angles. And immediately she fell backwards into the snow and made three snow angels for me. I want you to know that you, Raven and Jeweliana have snow angels now."


It was so sweet and touching the way he shared his story, and very kind of him to ask the little girl to make a snow angel for each of us.

Hips, spasms and hippo-therapy

Last night (17) at 11:20pm Jewel's hips were spasming something fierce,a storm of spasms. I kept her in her swash hip abductor brace and they subsided and we were able to get back to sleep. I never get up and turn on the lights, I always keep the lights off and try to get her back to sleep.
Today; Tuesday 18th of January. As we were leaving the house to go to the horses Jewel said, "hug Grace". Grace is Jeweliana's companion therapy dog. Jewel calls Grace her sister, as of late she has become her Dragon, "dwagon". Jewel loves Grace and feels the unconditional and non-judgemental love and support from Grace. Jewel got to ride Billy aka Cookie dough,for 20 minutes. Cindy lead the old quarter horse and Raven and I flanked the saddle, giving Jewel some support on her arms. She was in high spirits,sat up tall and strong, collapsed and fought to get her posture back. She tired out but all in all kept her spirits high. Another great day. Tired. Going to bed. Jewel is already in her brace and in bed. Thanks to Shriners children's hospital for the brace, and it was no charge to us. Jewel informed us that she wants a dragon birthday cake and wants to invite Ava to her birthday. Jewel will be ten in a few short weeks. She always knows exactly what she wants, and it is always simple, symmetric and uncomplicated. If you have a special child, I hope you are checking out what Shriners has to offer. I hated the first doctor and did not trust her, she made me cry. She transfered and now we have Dr. Pellete, whom I totally trust with Jewelinana's care. Dr. Pellete is honest and I feel safe with him, he cares for Jewel and does not push anything on us.

Jewel's day

January 17, Monday 2011


Today Jewel sat indian style (chris-cross),on the floor, unaided for One minute!
Three days ago 1/14/11, she sat like this for the count of 55!
I am so thrilled and hopeful at this repetition. She does not always repeat her progress, which can be hard for me to understand.
I had her barbies and mermaids all lined up and she was engaged in focusing on the conversations that I was having with the dolls. I think this helped her mind focus on something fun.
On the 14th she read a whole sentence on the chalk board. Her Da wrote; "Cat ate rat. Cat, rat, and, the", one of the lessons in the McGuffey's Primer reader-and she read it.
We used the McGuffey's set with our older children and they proved simple and rich. Jewel is almost ten years old and carries the label of Cerebral Palsy. She is on no medication and has never been consistently on any. She was medicated on many things in the Neonatal unit and had some antibiotics and pain meds. during her brief hospital stays.
One surgery due to a hernia, one cellulitis (staff) infection, one surgery at Shriners hospital for children.
Ultimately I would like to encourage all parents who have a "special" child, especially those who are homeschooling their special child/ren and who have been labeled systems resistant because they would like to raise their child with out medications that are not needed, (I am not talking about the medicines that are absolutely needed).



Today I am hopeful and full of positivity due to Jewel's progress and willingness to co-operate. This is a grand and merry day but not all days are fueled with such an emotional euphoria.
Some days are void of restful sleep, these are bleak days. We give Jewel the best nutrition and organic food that we can give. We daily supplement with Mannatech, which we have been doing for six months now. Jewel sees; a great O/T occupational therapist(x1wk), a great P/T physical therapist (x2month) , a wonderful Speech pathologist; language specialist (x1wk.), chyropractic care(x1-2-month), body worker(x1 wk - he is a new addition), massage therapy (x1 month- this is her fourth time), horse therapy ( this is our fourth year.)
We have cut out milk for three months now, we have seen an improvement in her chest, it is less rattly and raspy, less phlegmy. We like these results :)




Instead of keeping a journal I will attempt to keep track of Jewel's progress. I am tired and need to plan tomorrow. Good night.