wishing for a tail-

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

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

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