Thankful

Just about every time I open our fridge, I see the 2 1/2 vials of Luke's $75,000 medicine leftover from last spring/summer.  Even though the medicine has recently expired, I just can't bring myself to get rid of it:  a. because it was so ridiculously expensive and b. because I am too superstitious that Luke's seizures will return as soon as I throw the medicine out.

Two of Luke's therapists were seeing another little girl, also with Down syndrome, who was diagnosed with infantile spasms right around the same time as Luke last year.  She and Luke were both experiencing similar effects from the seizures:  regression and lack of progress and development.  Her mother and I actually spoke at one point to compare notes on our neurologists, treatment, etc.  That little girl and her family had moved away shortly thereafter, and so I hadn't heard any updates about her.

Recently, they moved back and our therapists picked up her case again.  Separately, with tears in their eyes, and after seeing the little girl for the first time since last summer, they both told me how thankful they were that Luke bounced back from the diagnosis.  Unfortunately, doctors have not been able to control or stop her seizures.  She will turn two years old shortly after Luke and still cannot hold her head up.  The infantile spasms have completely halted her development in all ways.  Our wonderful physical therapist, who has been practicing for more than 20 years, said it's the first time he's seen literally no development or progress in a child over such a period of time.  When Luke was first diagnosed, almost all of the research we read discussed the devastating consequences if the seizures were unable to be controlled or stopped.  This little girl is a very sad example of that and yet another reminder for me of just how lucky we have been with Luke's progress.

So on an "off" day when I'm feeling a little sad and wishful that Luke didn't have the delays that he does or that he was walking around like other kids his age, I'll think of that little girl and how very fortunate we are.  I can also look at these pictures of him standing on his OWN last Friday during physical therapy...a totally unexpected and emotional moment for all of us!

And I just couldn't resist posting a few more pictures of sibling love.  What's funny is that Jackson and Olivia rarely stop to hug one another, but they are constantly hugging and snuggling Luke...even if he doesn't always enjoy it!

He's trying to push her off of him in this picture!