Leukodystrophy: Humble Enough to Ask for Help

Well, things have been going along pretty well.  Botox shots have helped my Grandlove with his spasticity in his legs.  His physical therapists have seen improvements and we are so glad that he didn't have major pain after the injections.  The injections should last at least three to four months and since he did so well, we probably will go that route again.  His body weight was enough that the doctor was able to use two full cylinders of botox (one in each leg) and we think that between the botox and his oral meds, that is why we have seen good results.  We were just so thankful that he didn't have any negative reactions to the meds or procedure, that we felt encouraged.

Since my daughter is taking care of my Grandlove full-time, the household income has really taken a huge hit.  If she would get a job, respite care wouldn't be available during her working hours and who would take care of such an involved little guy?  Not only that, but each day, each hour is so valued because of his condition.  When she was working, her heart was torn each time she went to work in the morning and after her lunch-time spent with him at home.  It's not that she doesn't want to work, it's just that she is limited in her options.  His therapies take up three mornings a week and once school starts (he'll be going for three hours in the morning), his therapies will be spread out throughout the afternoons.  We understand that he will never regain his mobility, but the therapies are to help him maintain the limited amount of function that he is clinging to, now.  Speech therapy is teaching him to use buttons to make choices, so that his expressive language can be unlocked.  How frustrated he gets when we don't understand what he wants/needs! 

When we travel with him, my daughter's little car cannot hold his wheelchair, suction machine, nebulizer, feeding supplies and other ordinary toddler needs.  I realize that the economy is not good right now, but right now is when we need a little help.  There is a fundraiser going on for my Grandlove, so that his mom can get a larger, affordable vehicle.  We have been fortunate enough to be chosen by Wooly Babes for an auction in September, but the site for the fundraiser has already been set up and any publications/donations/support would be so appreciated by us all.  My readers already realize how much my Grandlove means to me.  My readers have traveled on this journey from before the diagnosis, until now and so they understand what stress Leukodystrophy brings to a family.  There is no cure for what is stealing away my sweet, little boy, but there is hope of painless days and restful nights.  We do all we can to make sure that he receives what he needs to enhance his life.  Thank you in advance for considering:  "LOTSA OF LOVE FOR STEPHEN".  (There is a page on facebook with more information about my little Grandlove and how you can help/donate.) 

Wooly Babes - Waldorf Dolls for a Cause posted in September's Auction Doll: Stephen ~ September 14-17, 2012

Wooly Babes - Waldorf Dolls for a Cause 2:45pm Jul 4 Invite EVERYONE! Ask people to share, and spread the word on support groups, Craig's list etc. :) Let's get the BEST turnout possible! - Alana-Hermsen Wooly-Babes Please carry this message to your blog/facebook/address book of wherever you can.  I thank you for your help, because many of you have said whatever you can do to help, just let you know and I am asking for this help.  Sincerely, B. (TruthFerret on here and Soupsandwich Messedup on Facebook.)

BE PATIENT: DAILY MOTTO

MY GRANDLOVE

This is the face of love.
This is the face of innocence. 
This is the face of all things possible.
This is the face of more questions than answers.
This is the face of acceptance.
This is the face of hope.

GIFT THAT KEEPS ON GIVING

Spent a few hours with my Grandlove and that's all it took to give me peace, hope and the overwhelming feeling of well-being.  He is better than any prescription in helping me to know that good will prevail and the negative aspects of life will not be enough to squash me and mine.  Such a gift from God, my Grandlove. 

HAPPY BIRTHDAY TO MY HEART

This is a picture of my external hearts....my daughter and her precious little son.  If she looks scared, that would be pretty true, since she had only been a mom for a little over three months.  Her mothering skills have become stronger and more sure with each passing day.  I admire the fact that she has taken all that she has learned and tweaked it into her own way of parenting.  It's difficult to remember that it's been twenty-nine years that I first looked at her tiny face and fell in love.  So many things have happened in our lives and yet the one constant is that my love for my daughter has grown each moment.  She does know where all my buttons are and she has engaged them more than once.  Even during our tense times, our learning times, I have never doubted that I have been blessed those so many years ago when I first saw that tiny, rosebud mouth and held her.  Colic, teenage woes, hospitalizations, surgeries, illnesses temper trials, college adventures, relationship difficulties, life plans dashed across the rocks of disappointment and all the times I was told, "You don't know" have only added to my appreciation of the strength of our bond.  I love her more than life itself and that was even before she blessed us when our little Grandlove.  He's the icing on the cake. 

Happy Birthday, my sweet girl.  You have brought so much joy, love and support to our family.  May your blessings always outweigh life's struggles.