Beach

6/6/11 Monday

Jewel had a full day of being in her equipment; wheel chair, stander, gait trainer.
Apparently the couple of therapists working with her notice a considerable change in Jewel's body since we have been taking her off the floor and keeping her AFOs on and putting her into her equipment that supports optimal posture.  (We used to allow Jewel more floor time thinking that she would eventually push up more or crawl but it was just strengthening her primitive patterns which are un-functional, we did not think that all these restraints were good for her.  Now she is ready and so are we, it is tough love now.  She no longer throws up when being put into her equipment and we are moving on to higher ground :))  They notice that Jewel has less tone, and that she is more relaxed!  Yes!
They also noticed that she is able to quite down and feel calm sooner and they are able to work with Jewel with more results during the session.  One therapist said it took her about 45 minutes just to get Jewel to a place of ease to be able to do more focused work with her, now they are able to get her into these positions 5-10 minutes into the session.  This makes my heart happy.   I thank the families that have helped Jewel get her equipment because it is through their gift that she is making gains.  From my heart to yours I thank you.

About five days ago Gary had Jewel on the floor with no AFO's or brace on and she reverted back to those primitive un-functional patterns and it is very sad for my heart to see this.  She gets so stuck in her body and is unable to do anything.  If we give up she fails.

We took the whole family to the beach in the afternoon.  It was not a safe beach for Jewel, with high surf advisory we stayed under the shade of a Kiawe tree.  It is said that the missionaries to Hawaii brought these seeds and planted them, so that the local Hawaiians would wear shoes.  But most of the local kids just run around on the beach barefoot any way :)   I love the smell of Kiawe wood fires, and the shade of these trees.  The thorns are big and they hurt if they penetrate your slipper.  I played mermaid barbies with Jewel and we made a stick fort for them.  Even though she wanted me to dig, I used this play time to exercise her and do therapy on the sly.  The big girls went to run the beach with their friends.   Unbeknown to Jewel  I had her sitting in criss-cross position and had her do diagonal trunk rotation, then stretching out her arms on these rotations, encouraging her to reach for her barbies.  We dug a small hole to burry her ken barbie.  She loves to hold large sticks, like the girl who likes to run with scissors.  I can only handle a few seconds of this for I  am scared that she will poke her face or my face.  Then I had her over my legs and encouraged her to weight bare on her forearms.  My hands stayed very soft and relaxed when touching her or placing her arms back into correct positioning.  Arms need to be directly under shoulders, the 90 degree law, ( Keep the joint in 90 degree angles)  and encourage hands in open positioning is optimal.  I just focused on weight baring because I would loose all of the good posture when fiddling with her hands.  We have to pick our battles and sometimes it is easier to pick out the weeds when they are big for we tear out the flowers with the weeds when they are small.  The flowers need to get bigger and stronger to with stand the weeding.  I am slowly getting it.  Jewel had to keep lifting up her head and she did so well.  Helping Jewel dig is great for her sensory assimilation as well, it is a great texture.  Her athetoid tendency makes it difficult for her to coordinate movements smoothly and to maintain body posture.  It looks like she is swaying her head and saying NO but she is not saying No, it is an involuntary movement.  Jewel worked so hard and she just thought she was playing at the beach.  Every position I put her in was intentional, with the hopes that it would help her body and bring about some normalcy, as far as healthy and correct posture/positioning and weight baring.

Beach time and then off to feed the horses and water the garden.  So much fresh air and being together as a family does our bodies good.  What an appetite she had for dinner, though she does enjoy her food on a regular basis.  When I put her to bed, we lay there and repeated the oral motor/swallowing exercises form the night before with great success.  Jewel was relaxed, and laying down she was supported with out having to fight gravity.  Her focus and volition were together and she did great.  She did better at lip closure, holding lip closure and nose breathing.  We kept it fun and short.  Four times per exercise, with praise and encouragement.  False praise does not work because she is too smart for that, but something like, "that was very hard to do and you had a great attitude, thank you or wow, what an improvement from yesterday, you are amazingly talented, I love you, .. you get the picture :)"  Good end to a lovely day.