sisters

5/19/11 Thursday
We are actively keeping Jewel in her wheel chair, stander, gait trainer and AFOs.
It is definitely a team effort, and takes stamina and commitment.
Jewel is still doing great at keeping her panties dry, but then again it is the team/our family that helps her reach her goals and full potential at this time.
Jewel is still addicted to listening to Harry Potter on CD and she does not mind hearing the books and disks over and over again, at this point I wish we had a extra room for me to take shelter away from Harry!
The gait trainer is a lot of work for Jewel and she has yet to figure out how those things called legs work.
Her sisters put on music for her while she is in the gait trainer and this seems to be a good combination.
Listening to books on CD while in the gait trainer takes too much effort to listen and move about.

We went to feed the horses today and got 'punked' by Cookie Dough.
As we were departing he went down on all fours and then rolled side ways on the gravel, he got a bit still and Raven and I burst into tears, we thought he had just died in front of us!  But that big 'ol dog was just scratching an itch and he got up and walked away!  How he fooled us, and really this is our greatest fear, that he may pass on.  He is an old horse, maybe even thirty.  Nobody seems to know his age except that he is old.  He is looking so much healthier lately and he has our hearts, we are in love with him.  He truly is the type of horse songs are written about.  We love you Cookie Dough xxo

5/20/11 Friday
Friday has come and left us like a passing cloud.
Just the same routine, always making lists and re-evaluating.
Hoping to be able to work with a speech pathologist soon, Jewel says;" modder instead of mother, I know dat instead of that, gary instead of scary and tank you instead of thank you, boom stick instead of broom stick, tree instead of three."  I guess we need more work on her blends.  Although I am grateful for her speech I am always trying to help her speak clearer.  Setting the bar a bit higher to see if she can reach it.
I am in the process of filling out forms for the distance evaluation for Jewel through the snowdrop organization in England, cross your fingers.  I am feeling good about this decision.
Just made an acupuncture appointment for Jewel and will post updates on this.
I am a weight to our team for I still seem to be so tired.
Today Jewel and her sisters had a lot of fun with the gait trainer.  They put the music on, they put her in the gait trainer while I am at work, they ceaselessly encourage her.
They truly have a special sister bond, the three of them, it is such a blessing that they share.  And they demonstrate the love they have for each other in tireless actions always helping Jewel.
They helped Jewel put something back into the shelf and this is monumental!
"applause :)"
Makena told me if ever things got too hard for me to balance work and taking care of Jewel, I would always have her to help.  She said she would not go to college, she would stay and help.  I do not want this, I want my girls to go off and go to college and live their lives, but this is the love they have for each other.  It is deeply rooted and real.  I would never allow this, she needs to go and live her life but it was very sweet and enduring.  If only we were all willing to help each other like this, or at least to do our share of our own work and responcibility.
Celebrate every moment, take nothing for granted, dance, fly a balloon, be grateful for everything.
We have food in the fridge and we are all accounted for and healthy,  life is some what like a puzzle and we are finding some peace with the pieces.


"We succeed in enterprises which demand the positive qualities we possess, but we excel in those which can also make use of our defects." -Alexis de Tocqueville