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Still Fighting It - Ben Folds

Wow!  We had an amazing weekend!  The Auburn High School Volleyball team hosted an ALS awareness event and raised enough money to provide us with one week of home health care for Ben.  Thanks to Coach Spencer, VB teams and the AJH student Council for helping us raise awareness.  Hopefully someday Liam's wish will come true and there will be a cure.

Many of you have signed up on the Lotsa Helping Hands website.  We can't thank you enough for your generosity.  I know that some of you have problems with the link.  I have posted it again here.  (If this doesn't work, cutting and pasting it into the address bar should work.)  If you have any other ideas, please contact Denise Blaney.  She is the coordinator of the site.  For those of you who don't know Denise she and I co-teach 7th grade Literature and Grammar.  I truly don't know what I do without her love and support.  She helps me get through each and every day!

I was recently talking with the parent of one of Liam's friends and realized how our battle is affecting all of you.  We have always been open and honest about how Ben is progressing and how we are doing.  Ben is a strong stubborn man, but he is very frustrated right now.  His arms don't move and his legs are very weak. Ben can take a step or two with assistance, but this is very difficult and tiresome for him.  When we saw Dr. Harms in September we were approved to order Ben's custom wheel chair and referred to a pulmonary specialist because his breathing is below the 50% threshold.  His new chair should be here in a couple of weeks.  It will be great for Ben to be able to move around easier and be more comfortable, even though I couldn’t convince him to get the pimped out hot pink one. 

We were also awarded a grant from the ALS association for home health care three mornings a week.  This is great because the boys and I were very worried about him being home by himself.  So between home health care, his mom, his dad and lunch visitors there is someone there all the time.  My parents fill in for a week at a time so that I can keep working.  Without our family and friends we wouldn't be able to make it through this.

Please ask questions.  We are open to talk about things.  The boys are obviously talking to their friends about this.  If the kids have questions or want to see Ben, just let us know.  We love visitors, just need to make sure it is between swimming, piano, running, band practices - you know all the things that keep all of us parents busy.  Thanks again for all of your love and support; it really is what makes us get through each and every day. 

Hugs your kids!