The latest

Summer is flying by and we have had lots of fun - I can't believe it is nearly August. Of course, I've been lame at writing lately - I'm not sure why. We've definitely been busy, but I think I haven't really known what I wanted to write. We're pretty much status quo - nothing major to report. While better than bad stuff to report, I'm so ready for a huge break-through that I can excitedly share. I've accepted by now that this likely won't happen. Taylor is going to work really hard for every little skill - and we are amazed and awed by her perseverance.

She had an appointment with the neurodevelopment doctor last week - Dr. Cowan. He is a very nice man and great with Taylor, but David and I always leave and wonder why we bothered. Yes, she is still delayed. Yes, she is making progress - slowly. We still don't know what her future will bring. Thankfully we only see him every 4-6 months or we'd probably question it more. If anything, he is a good sounding board for our regime - are we doing enough of the right things? He assures us that we are doing everything we can for Taylor - in fact, we're aggressive with the therapy schedule. More is not always better. We've heard this before, yet no one knows the magical formula. So, we're betting on 8 hours a week right now as the right mix with Susan, plus stuff we work with her on at home. The worst part for me is that occasionally we get a bullet that is hard to swallow - Taylor is still not quite small - barely on the charts and because her hormone levels and other stuff have checked out, Dr. Cowan says her small stature is likely connected to her brain condition, although it's not clear exactly what is going on. I asked him if we should consider growth hormone at some point and he said it depends. If she is physically disabled, a small size is preferred because she will be easier to transport and move. If she is not, we will probably want to consider it. Quickly, being short becomes the least of our worries. I really hate to consider that she might not walk - it is a possibility, but one that I can't dwell on.

I've asked Susan for her opinion and she says that Taylor will walk because she wants to so badly. You can see her focus and try so very hard. She loves to move and is getting better at using her feet. She still is working on protective reflexes though, which are so important so she can catch herself. She is making progress - she can hold weight on her hands and is less sensitive. She's beginning to explore with her hands more, so we have to just have faith that it will all come together for her. Susan knows Taylor best, so perhaps it's blind faith, but it's the best way for us to move forward right now.

I am starting to read a lot more - with the hopes of learning about new therapies or research or specialists that could help Taylor. One book "The Brain That Heals Itself" is inspiring - it is about a bunch of case studies of people with challenged brains overcoming all odds. Another one - "Blue Sky July" - about a mother's experience with her child with severe cerebral palsy, is heart-breaking, but comforting at the same time. We're most excited about an upcoming conference that David is going to attend in a few weeks - it's for the National Association of Corpus Callosum Disorders and it will be full of families like ours. The conference is in Indianapolis this year, so I'm taking the kids to Missouri to see my family and David will spend the week-end at the conference, and then meet us. I'm so thankful that he is checking it out - we just want to learn more. I'm skipping it to stay with the kids and spend time with my family - if he thinks it is great, we'll both go next year, and perhaps take the family.

So, nothing much new to report, but we're just keeping our heads down and trying to help Taylor as much as we can. Susan is going to London for 3 weeks in August, and we're partly thrilled for the break from the routine and a real vacation for Taylor -and partly worried about the lack of therapy. Mostly, I think we're ready for at least a few weeks of a normal summer.

Lauren and Jacob continue to be amazing with Taylor. We are so blessed that they have huge hearts. They love her and still make her laugh like nothing else. They both did sport camps last week - Lauren played soccer, and Jacob played soccer, basketball and baseball. It was a big hit, except Lauren wasn't real fond of her shin guards and Jacob didn't want to practice dribbling, because "he already knew how to dribble".

I'll leave you with a few funny moments. The other day I was rushing around and putting away laundry - Lauren says "mommy, you need a servant". David jumped on her for using the word "servant", but she was just referring to Cinderella. She and Jacob are actually a big help around the house. The other morning (day after my birthday coincidentally), Jacob says "mommy you have 7 scars on your forehead" - those are wrinkles, son. You gotta love kids....they keep us moving and laughing and distracted, which is good for all of us.