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.

Happy Anniversary, 4th of July, Baptism and more

The past few weeks have been busy, busy. July 3 was our 10 year wedding anniversary -we're both amazed so much time has passed already. We're so proud of our family and the great times we've had over the years. 3 precious kids, 4 houses, 3 remodels, 2 careers, and lots of great memories. We had big plans for our anniversary, but scaled back to stay in town with the kids. We both took the day off on July 2 and went for a wonderful 5 mile hike on Mt. Si, and then cooled off in the "grown-up" section at our pool (we'd actually never been in that section before). The morning of July 3 we left for Whidbey Island, where we celebrated our annual 4th of July week-end. We had a great time - we took the kids for a hike, David took the big kids crabbing, and we enjoyed bike riding, walking on the beach, and fireworks. I love Whidbey Island for the 4th - it feels like a small town, with small-town street parade, toy car races, and friendly neighbors. Taylor enjoyed watching the big kids play and crashed before the fireworks began. She and I hung out at the house, while the kids stayed awake for their first fireworks show. Lauren has been spooked in the past and Jacob has been younger, so this was a big year.

This week was great fun because Nana and Poppy (my parents) came to visit. They stayed for a few days before leaving on an Alaskan cruise on Friday. We enjoyed a lunch on the waterfront before saying bon voyage to the travelers. The kids were so excited to see them - Taylor grinned and grinned at my mom - I think she remembered her from her last trip in May. One night after the big kid's had gone to bed, Taylor stayed up until 10pm playing. Nana pushed Taylor on her riding Pooh for nearly an hour. Taylor soaked up the attention and had a blast. It's so good to see her having fun. Poppy saw his first therapy session Friday morning when Susan arrived. It was fun to compare notes with my mom - as always - it's easier to notice progress when you're not there every day. My mom saw lots of improvements, so it was good to hear the validation.

This week-end Taylor was baptised on Saturday night during the evening church session. This is an important moment for the Catholic church - in my Christian church upbringing, we would have called it "dedicated", but irregardless what you call it, it was a special moment for Taylor at church. Unfortunately it was hot and Jacob was restless. Our family was on the first pew of the church and participated a few times during the service. During this, Jacob left for a drink of water after about 15 minutes, desperately needed a piece of gum, played splash in the holy water, and at the end of the service, let out a big sigh followed by - "Ay, yi, yi...". We had David's family over for dinner afterward and it was a nice night. Taylor can get overwhelmed in groups of people - particularly when it's hot - so she and I disappeared upstairs for a few minutes to recharge.

All in all, lots of excitement and fun - mixed up with therapy, swim lessons, and happy (or tired) kids. We have made progress with Taylor's seizure medication - we finally have reached her full dosage as of tonight. We hope that she will settle in now that we've reached the full dose. She's still quite sleepy and taking 2 naps a day. I'm so hoping she will get more energy soon - they said it will take about 10-15days for her body to adjust, so we're hoping we're nearing the finish line of adjustment period. She is such a precious baby and we're so proud of her. I'll post updated pictures soon.