Dreams

6/3/11 Friday

Here is a video clip about children with disabilities who are learning how to dance:
http://www.youtube.com/watch?v=YUGD1J9Ywdw

Here is a couple in wheel chairs dancing;
http://www.youtube.com/watch?v=lut4VHRq5tQ&feature=related

We are always looking at people, books, movies, video clips and stories to encourage us, give us hope, inspire us, give us ideas.  We are constantly learning how best to help Jewel reach her goals and achieve her dreams.
The rodeo is coming up soon and I have no idea yet if she will ride this year.
Hula is on our list and she has been listening to Hawaiian music, it brings a happy spark to her smile.
I am happy to let you know that the snowdrop center in the UK has Jewels program ready, all I have to do now is pay.  I have to figure out how to get our USA dollar into their Euro dollar.

We had a swallowing session yesterday, it was facilitated by an occupational therapist who works at the hospital.  Jewel got to eat and show of her eating skills.  Jewel loves and enjoys eating.  The therapist was kind and patient, very knowledgeable and was able to help Jewels tonic neck stabilize in her chair, always waiting for Jewel and giving her breaks.( Jewel's neck seems to dance from side to side and will drop forward into an un-functional position.)   We do not want her to choke or aspirate.   The therapist started with gentle slow jaw compressions and then cheek and lip stretches, followed by NUK brush work.  Jewel did very well and she got to eat beef jerky, the O/T stabilizing her head and I was hand over hand assisting Jewel to self feed the jerky, she was in heaven!  This is one of Jewel's goals, to be able to feed herself, it does not even have to be with a utensil.  One of the exercises was to keep her top and bottom lip closed together.  This is very difficult for Jewel to do.  This is why we stretch the lips out.  The O/T waited for her and encouraged her verbally, I was surprised that the O/T did not do it for her, she waited for Jewel to do it for herself and after two of these Jewel was very tired.  You did good Jewel, keep it up, we are proud of you!  We used a mirror thinking this would help but it just made her laugh and smile, which could be good depending how you look at it.  If Jewel feels too defeated she will stop and cry, the frustration will send her to the place of NO and tears.  She is very hard on her self, so keeping it light is the key.  The therapist proved herself to be very good with Jewel and assessing the difficulty and rewarding Jewel with breaks.  We ended with bubble blowing and recorder blowing to keep the lip closure and rounding going, she was pooped at this time and we have home work to do.  One of them is to help encourage Jewel to close her mouth and keep those lips together, this is very difficult for Jewel.  The goal is for the count of fifteen.  Jewel is a strong mouth breather and hardly ever breaths through her nose.  Making this even more scary and challenging for her.  But it is a worthy exercise on many levels.  The other one is to be able to take a big breath in and hold it with cheeks blowing out like a chipmunk and lips pressed closed.  At this point the later one has not been able to be achieved by Jewel but with hard work who knows :)  We will focus on the first one and progress to the second one as she feels some success.
Jewel enjoyed checking up on the garden, looking at the little plots of things growing and looking at the green sprouts in her box that Raven planted.  She enjoys being out there with the horses and just standing in her AFOs and sneakers while I hold her up.  She is always praying for the animals even the goats.
We signed Jewel up for the summer reading program at our library :)
We went to visit some lovely friends who are here from Colorado, it was a nice family BBQ.  I must say that I am proud of all the girls, how they help with Jewel and her wheel chair get ready so that we can go out.  I get tired and rather enjoy gatherings at our place for everything I need for Jewel is close at hand and this gives me a sense of peace and comfort.  I realized that I get too tired going out with her at night and will make a note to self; stick to going out earlier in the day, do not do to many events close to each other and keep it at our home when feeling rather tired.  I guess Jewel is not the only one who is growing.  Makena and Raven are good sports and they help facilitate to make our outings include Jewel and they are appreciated.  On the ride Jewel was saying, "tank you" to Makena and she was trying to figure out why.  Jewel said, "walk" and it turns out that Jewel is thankful for Makena putting her in her gait trainer.  Thank you Makena for always doing this, you are awesome and appreciated!  I love you girls, with all of my heart xxx