Swallow exercise, Shaker

11/30/11  Wednesday

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

Shaker Exercise

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

Hyoid Lift Maneuver

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

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

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

Thanksgiving

11/25/11 Friday

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

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

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