adjusting

6/4/11 Saturday was Makena's 18th birthday :)

Today I am amazed at the things our children have done and their wide range
of interests.  They are all living their lives and not the ones I would have planned
for them.  But I have learned that their lives are theirs, not mine, and in living
their own lives they have given me experiences and an education I would never
have had if I’d been fool enough to make them do what I thought they should do.

Bernie Siegel

I found this quote on letting go of control.  This weekend was about Makena and celebrating her birthday with her friends.  We had a surprise gathering with some of her friends and Aunties to celebrate with us.  We had the makings of soft tacos, water mellon and home made cake.  It was hard for Jewel to keep the 'surprise' and she kept telling Makena, "surprise" through out the week.  Makena was very curious but she did not want in on the surprise.  We had nine 'older girls' at the party and it was a bit difficult at times for Jewel to share her sissy with all her friends.  The weekend brought lots of fun, friendship and letting go and just being.  I have to let go more and trust and allow for the older girls to grow.  Jewel is learning as well and she had a bit more tear going on.  I am proud of who my daughters are and I cherish every moment with them.  I love and respect them.  Makena pushed my buttons a little and worked with Jewel and a snorkel in the pool.  I am very uncomfortable with this since she has weak lip closure but she did well in spite of my fears.  I am afraid she will swallow too much pool water and get sick or aspirate pool water.  Jewel had fun with Makena and they both enjoyed watching me squirm. Thank you girls for growing me into a better Mother xx (keep the pennies going for my therapy jar, not kidding.)

6/5/11 Sunday
The big girls went to the beach with their friends.
Jewel had a great session with her O/T and it was all about relaxing and self feeding.  I may say that we have seen an improvement in Jewel's body and her ability to settle down into the session faster.  She wants to grow and do so much, her brain has signals that mess up her volition.  The work was great, she ate a cliff fruit leather twist vine.  She did not care for it as much as if it was black licorice, but she was a good sport and ate it to be able to practice eating.  The twist was a bit sour and she made funny expressions that I have never seen before.  I need to get health snacks for her to eat during these sessions, ones that will not crumble or be to labour intensive.  She was very content after this session.  This is one of her goals and ours as well, for her to be able to achieve self feeding.  We discussed her wheel chair needs and the obstacle of us living on the third floor with out an elevator or ramp.  Jewel got to do ball work, side sitting and side lying work.  She got a bit frustrated at one point and we were able to narrow it down to, "tired."  We go through about five options to yes and no, too may options will just frustrate her more.  I used the HALT  acronym, to help us.  (hungry, angry, lonely, tired)
Jewel cried a little again in the evening and we just allowed her to express her self, we all gave her attention but she only wanted her sisters attention.  She settled down in Raven's arms. xx  Thank you Raven :)
I did Jewel's swallow exercises in bed and incorporated tooth brushing and some Beckman oral.  She did exceedingly well, I was so surprised and proud of her.  She does well will praise and keeping it short.  I led her in some nose breathing and it was foreign to her  since she is a mouth breather.  I will work the swallow and speech and nose breathing in together.  I think that Jewel needs to learn nose breathing and I am sure that there will be many benefits to achieving this task.
It was a lovely and full weekend.

"Today you are You, that is truer than true.  There is no one alive who is Youer than You."  Dr. Seuss