Thursday, October 6, 2011

Hard to believe it's been three months since we found out Will has Leigh's Disease. Neil pointed out to me this morning that he thinks he has more gray hair. I have noticed my hair coloring appointments increasing in frequency myself. :-)

We've accomplished a lot in three months, but it feels like we have such a long road ahead. Ok, we DO have a long road ahead! :-)

Let's celebrate today some good wins though:
-Medicaid is almost signed sealed and delivered
-We researched, met with various doctors and found out we can have more biological kids
-Will hasn't been sick, except that one time with vomitting. Knock on wood. Seriously, do it right now.
-We were accepted to Stanford, went for the baseline testing and are on EPI-743
-Countless hours of therapy with Mr. George, Ms. Risa and Ms. Melissa. Need we forget the "24/7" therapy I try and do at home continue to improve his walking and stability.
-So much therapy that he's able to chew crackers now!
-Raised money and awareness for this disease
-Neil and I don't cry every day

1 comment:

  1. Lori, that is a pretty amazing list in only 3 months. Wow. You inspire me daily. Will is so lucky to have such parents who make things happen. Go Team Martin!