Realize it

5/9/11 Monday

Aloha,  I have been reading the pages on the Snowdrop blog,
http://snowdrop-snowdropblog.blogspot.com
http://snowdrop-snowdropblog.blogspot.com/
check out May 8,2011 Article on stimulating and directing brain plasticity, very interesting!http://www.eurekalert.org/pub_releases/2011-02/miot-mpo022811.php  the supporting article brings hope to my mind.
Happy reading, happy learning! :)

Jewel is up and the morning has shifted into full speed, she did not sleep well, (so neither did I)  for she seemed very congested, now to find the source.  Is it her diet or environmental or ...?!

Jewel awoke with another dry overnight diaper :) YES!

Her hip adductor brace left very harsh lines on her thighs, so we will watch and be real careful next time.
If the read mark leaves with in an hour it is still okay, but these are still there.  I must have been tired an put the brace on in a incorrect fashion.  We watch because of fear of skin break down, we want to avoid the skin break down as much as possible.  Skin break down brings the possibility of infection and then the child can not wear the AFO or brace until the skin has healed.

Today Jewel did 2-hrs in her Super Stand stander, yeah for Jewel!
Right after the timer went off Jewel said," I can't take it, really can't take it, get out!"
Awesome sentences Jewel!
I just love the words Jewel uses.

Today we fed the horses but we did not ride, because Jewel just got her massage from Jimmy.
He worked on her legs and thoracic and neck.  Jimmy noticed an improvement in Jewel's body since she has been in her stander, wheelchair and AFO's as much as possible.  We tried this in the past but she and we were not ready, but now we are all ready for this step.  We are trying to keep Jewel off the floor (on her back) and in functional supportive positions only.  This is keeping her aligned, her hips in and the rest of her body pretty straight and less twisted and contorted. If the child is on its belly and weight baring on arms like this, it is optimal and great for integrating the primitive movements into functional movements and stability before mobility.  But the child on its back it bad because all the spasticity and tone and primitive non functional movements kick in, side lying is better.  We wanted Jewel to get the relaxation and full benefit of the body work.

We had an O/T come and work with Jewel on sunday.  The session was all about relaxation and finding the 'calm' in Jewel's body.  We used a big exercise ball and gently rolled Jewel on it, getting her to feel the 'settled' feeling in her body and we encouraged her to keep breathing.  The O/T said the right motivation after relaxation will be the reward, so we colored with Jewel after.  We did not get all the functional body relaxation and movements we wanted but there has to be emotional satisfaction and joy, this is where the hand over hand coloring comes in.  This was a  reward and I am keeping an open mind and heart because I miss our old therapist so badly.  We will go on with a great attitude of gratitude, and the gratitude is that for the first time Jewel's insurance has approve 16 physical therapy sessions.  The lesson is keep knocking and some door may finally open, even if it takes ten years or more.  Remember you are your child's voice and advocate, never tire from what is right for them.  Even through your exhaustion you are impaction their quality of life thus making the world a better place.

Our team has one team member who consistently shows themselves unreliable and it makes us weaker at times and yet still more determined to help Jewel make gains.  I am sure that most families with special needs children are taxed on every side,  and each family has their weaker links, but no matter what the case may be we need to carry on and give all we got and strive to help Jewel make those gains.  Focus on what you can do, the task in front of you because there will always be more work that needs doing.

"An ideal is one thing; living up to it is quite another ... We may be said to have an ideal only when we put forth an effort to realize it.  Strength does not come from physical capacity.  It comes from an indomitable will."  -Mahatma Gandhi
Glad for today :)