Taylor Therapy Pictures

I thought I would add some photos of Taylor doing her therapy. This is about 8 hours a week for her, so it's a big part of her life. We also do a lot of her exercises at home too. Susan, her therapist, is the gal in the pictures with Taylor.

This is Taylor practicing taking weight on her hands - she is looking at her favorite farm book.

In this picture, Taylor is practicing taking weight on her hands and practicing catching herself if she falls (protective reflexes). Her favorite singing cow is entertaining her.

Taylor loves to play ball. She loves to roll the ball to someone and it's a great way for her to work on getting her arms straight and using her hands.

This is the worst exercise ever. She really does not like to have her shoulders stretched. They are tight and each therapy session we spend about 10-15 minutes just loosening up her shoulders so she has more mobility with her arms and hands.

She likes to do this more. In fact, these pictures are about 2 weeks old and she doesn't even do this exercise as much anymore. She's working on balancing on the roll, while keeping her hands on the balls. Her tendency is to curl her arms up in the fetal position, when they need to be down so she can play or catch herself. You might not know it, but we're helping her develop a new brain pathway so her arms naturally stay down. She is looking at beaded necklaces to distract her (she likes to choose with her eyes which color goes on a big baby doll). You can see she is working hard now because she has stripped down to a T-shirt.


This is a fun new skill but a little scary. She's practicing standing up from a seated position, while bracing herself with her hands. You can see her magic shoes (pink velcro) partway down her legs. This is hard work for her, but she loves to stand. She's also working on sitting down when she's tired, instead of falling over.

Now the fun part, she loves to stand and play. She loves to listen to the music on this piano. "La Cucaraca" plays and she wiggles/dances to the music. As you can see, she works really hard. Her next exercise is practicing walking, but my pictures are too sad (she looks exhausted), so I'll wait to post some once she is a little fresher.

Thought you might enjoy a little more insight into her therapy sessions. I'm sure you're impressed by our hard worker!!

Delayed update, but good news!

Sorry for the long delay since my last post. Some have asked how I manage 3 kids, a job at Microsoft, and life in general - my response is some days are managed better than others. The last week or so has been super busy at work and any nighttime computer time has gone to keeping my head above water. Things should settle down soon, but it's my first crazy work moment since I've been back. The good news - it's a super cool project (I'll add a bit more at the bottom of this post) - but, it definitely has kept me hopping.

Today is a great example - while trying to close a big contract, get ad revenue from a major company, and ensure my website was up and running, we also took Taylor to Dr. Spector for her 15 month check-up and attended Jacob's Thanksgiving Day lunch at his preschool. My hamster wheel is running fast and furious lately, but so far, it's working - except for delayed blog postings anyway....

The good news - Taylor is doing great! She had an awesome appointment with Dr. Spector today. He said she looked great and was doing better than he expected. Several others have commented about how alert she is now, really following what's going on and he agreed. I think her eyes are working really well now (in conjunction with her brain) and it's such a gift to see her really engaged. He was pleased with her growth (now up to 18.5 pounds and she gained an inch in length since her last appointment). She's still a peanut, but a proportional peanut. Her head didn't grow much, but he thinks the shape looks good, so likely nothing to worry about. Our neurologist appointment is scheduled for January 6th and he's going to try to get us in earlier. He was really pleased with how well she is sitting and her tone (tight muscles) is much, much better. It was such a great moment to see her sitting on the exam table with her arms/hands relaxed normally. She looks awesome and I'm so pleased she's doing so well. She actually had fun at her appointment. She loved laying on the exam table and kicking her feet in the air so the paper on the table would make noise - she was cracking up.

She's been working really hard, so we're really happy that we're seeing good progress. We're continuing with her aggressive therapy 4 times a week and some of the sessions are stretching to 2 hours. Now she's getting to "play" more at least (in addition to the uncomfortable stretching) - she loves to roll a ball back-and-forth with someone (a great way for her to practice reaching). All-in-all, we're very thankful as we approach Thanksgiving.

Lauren and Jacob are also doing pretty well. Lauren is going through a growth spurt and is quite clumsy - she's constantly getting "owies" and you'll never meet a more dramatic child. I really dread the day she gets a bad ouch. Jacob also had a real close call and reminded us how much we have to be thankful for. David had taken Jacob and Taylor to our park and Jacob was messing around near a tall fireman pole. In a great lesson on listening, he fell from about 10-12 feet to the ground and landed on his back. He was shaken up, but fine. I don't know if David has recovered yet, but thankfully, Jacob's guardian angel was watching him.

We're heading to Whidbey Island tomorrow for Thanksgiving with David's family. We're all looking forward to great family time and relaxing. I miss my family, of course, and can't wait to see them at Christmas.

I'll leave you with a little plug for my work project. Occasionally I get to work on really cool stuff and this is one of those times. MSN has partnered with (RED) to launch a music service (RED)WIRE, where the proceeds will go to fight AIDS in Africa. If you spend a minute to learn the impact of the AIDS epidemic, it's mind boggling. Over 4,000 people die every day from AIDS in Africa and most of these are women and children. With basic medicine, they can live much longer and much less painfully. Every 5 people that subscribe to (RED)WIRE will keep one person alive. My job has been building the site that will take the (RED) message to the millions of people that come to MSN every day, and hopefully drive lots of people to subscribe to (RED)WIRE. We're hosting a launch event on 12/1 with new music from U2, Coldplay, Jay-Z, Dixie Chicks, Sheryl Crow and lots more. The songs are amazing and you all should tune in! You can visit the site now, but definitely on 12/1 - http://red.msn.com/

I'll post more later, apologies for the delay again, but good news all around for Taylor right now....

Genetics follow-up

Today I encourage each of you to count your blessings. We were back at Children's Hospital today in the genetics department and do we ever feel blessed. While waiting for our appointment, we saw so many sad kids that are living life and making the best of it. Including a pre-teen boy with no legs, several bald kids affected by cancer and chemotherapy, a family with two identical twin, teenage boys - both in wheelchairs, and others in such sad states you can't even describe. Jacob was with us because it was supposed to be a quick lab visit for David and I, and a young boy his age walked up to him and gave him a big smile. He stared at Jacob for a minute and when he turned to walk away, we saw the hearing device connected from his ear to his brain. We realized he couldn't hear or speak and again, your heart breaks. You could tell he wanted to play with Jacob - I can't imagine the frustration the little man faces everyday.

I don't share this to depress, but rather to inspire. Each of us is given so much and every day truly is a gift. While we don't enjoy going to Children's, the silver lining is that each time we're there Taylor's condition seems less significant.

We don't expect to learn much from today either. As David says, we're in "true medicine", where doctor's don't always know the answers. I mentioned a few months ago that we had Taylor's genetic make-up analyzed and the results (which took over a month to receive) indicated that she has "excess material" on her 5th chromosome. This is of "unknown significance". Seriously - it's a bit of an oxymoron - unknown significance. So, they wanted blood from David and I to see if we also had this variant. If so, it's actually good - it indicates that you can have this variant and be "normal", therefore her brain condition is likely not hereditary. If not, they still have to ponder and admittedly the testing is ahead of the science. Meaning, they can deliver test results but they don't necessarily know what it might mean. We're not entirely sure if this is helpful or not, but in the spirit of learn as much as we can - we're plowing ahead.

That aside, we've had another good week. Taylor has been fighting a bad cold (really hard to have older siblings and plethora of doctor appointments and stay healthy) and since she has remarkably good aim when sneezing/coughing, David, Julie and I all have her cold too. You can't really help but get sick when a baby six inches from you sneezes right in your face.

Thankfully, sleep has still been going fairly well so that has helped a lot. David and I had a night out last night too. Microsoft had a big party for its 10 year anniversary employees, and as an honoree, David and I went and had a good time. One of our favorite bands from our college days played and we were right at the stage (until our ears hurt - a sure sign of old age).

So, through our runny noses and foggy heads, we both feel very blessed tonight. Every day that we're able to enjoy our kids, go for a run, think and laugh and so many other things that the poor kids at Children's can't do - is a great day.

Election report

I was so excited about Taylor's sitting in the last post that I forgot to address the big election! It was quite an exciting night - while David and I aren't thrilled with everything Obama has to offer, it certainly was a historic evening. McCain actually had an item in his proposed healthcare plan that didn't matter to most - but certainly did to us. In his plan he would treat any employer-provided healthcare benefits as income. In our case, that could easily be an additional $200K-$300K per year! We are very fortunate to have excellent insurance through Microsoft and are certainly using it to its fullest coverage. McCain's plan would definitely not have worked as well for us. Of course, Obama comes with his own set of pro's and con's, but we had an exciting evening watching the results.

Usually we don't have the TV on at night until right before the kids go to bed. But, we all watched the election results and it was a riot to hear Lauren and Jacob's perspectives. Here are my favorites:

• "I don't want to be president, because then you have to change the tires," Lauren - huh??


• "Is that Troy Bolton?" Jacob wondering if Luke Russert, who covered the youth vote for NBC was his favorite High School Musical star.


• "Seattle voted for Obama and the big state of Dallas voted for McCain," Lauren.


• "Since Obama won this time, I'm sure McCain will get to win next time," Lauren.

I love that the kids are learning a little about the political process and it's great to hear their interpretations. Taylor, of course, was nonplussed, but we're happy her insurance is solid for now.

Today we had a fun day - Taylor went to her first movie - High School Musical 3, of course. Lauren and Jacob were so excited and paid close attention. Taylor also stayed awake the whole time and was very well behaved. She started to babble a time or two, but had her trusty binky to keep quiet during the show. I've also spent a lot of time organizing our digital pictures - I take a million pictures and I've gotten behind ordering prints and making albums. In the last few days, I've ordered over 1,000 pictures of our last year - it's been so fun to revisit lots of special memories.

Today was the first time Lauren asked when Taylor would start to crawl. I told her that Taylor was learning and wasn't it exciting that she was almost sitting by herself? Lauren said she really wants Taylor to be able to crawl. It pulled on my heart because I want Taylor to be able to play more actively too. She will get there though - we all just have to be patient.

Favorite Toy

I thought I would add another sitting picture because this is so exciting for us. This is Taylor's favorite toy - she can hit the keyboard, which plays music and songs, and the lights around the mirror light up. It's perfect for her to sit at. I definitely think we have a little musician in the making.

Taylor is sitting!

I've been meaning to write for days with several new developments. I have been feeling very joyful and hopeful as Taylor continues to make good progress with her sitting. I took her to her school yesterday and I was struck with how much progress she has made. Sometimes the steps seem so small, we wonder if we're moving forward, but I was given a gift at her school. You may remember me writing that her first day of school in mid-September was so hard for me - she was the only kid in her class that couldn't sit alone and she seemed so helpless. Now, less than two months later, after hours and hours of therapy she is able to sit unassisted. I wish you could see how hard she has worked for this skill. I hope I never forget her determined perseverance in her therapy and all of the work her team has put into to help her reach this milestone. We still can't leave her sitting alone, because she doesn't have good protective reflexes yet, but that's the next step. For now, I'm so happy she can sit and join the world. Her balance is actually quite good and she can sit for many minutes all by herself - such the big girl. The pictures here show her accomplishment best. At left is her first day of school during circle time - she was tired, so even more relaxed than usual, but definitely had to be held. At right, is her sitting at circle time on Wednesday. It's a back shot because I couldn't leave her to get a front view, but you can see what a great sitter she is! This is a big step for us because it shows she's capable of learning new skills and training her brain pathways to work for her - it definitely wasn't easy, but we're making progress!!!

Our other big news is that she is finally sleeping better!! HALLELUJAH!! After 14 months of very poor sleep, we're finally getting a good night sleep (here and there anyway). David sleep-trained her for a bit while I was in Vancouver for the night and it really worked quickly. On a good night, I only get up once or twice to give her back her binky and she's been sleeping in until 7am. This is an amazing difference and we're all feeling much better. She still has the occasional tough night, but the improvement is wonderful for all of us.

Of course with every smile, this roller coaster of a situation presents challenges along the way. We received Dr. Cowan's written report from her neuro-development appointment and it said she was making "fairly slow progress" with her motor development. I'm sure he typed this quickly without much thought, but it made me quite sad. She has been working so hard and we're all devoting so many hours to her development, and future. I don't know what's fast or slow, but I do know that we're making progress. And we can't get hung up on where she should be, where we'd like her to be, or how quickly we think we should get there. She is such a precious baby and an inspiration in so many ways at her young age. If you could see her struggle with each little skill (holding weight on her hands, opening her thumbs, stretching her arms, and so many more basic movements that most of us take for granted), you would also really appreciate the little things you can do everyday. Our hope is that Taylor never remembers how hard she fought for these skills and can be the carefree, capable girl she deserves to be.

For now, I'm choosing joy and cherising the photographs above as a reminder of how far we've come. I'm certain it's only the beginning.

Happy Halloween! .....Recap

Today I am feeling incredibly blessed. We had the absolute best Halloween. Each of the kids had Halloween parties at their school and it's always so much fun to wear your costume to school. I was able to volunteer at Lauren's Halloween party and spent two hours helping kids create beaded necklaces, bracelets and crowns. It was such fun and really fun to watch all of the kids interact. One of them asked Lauren why her mom was "so little" - it's true that many of her classmates will likely be taller than me within a few years. Jacob decided to be Superman at his class party because he could only be Troy from High School Musical if Lauren was there to be Gabriella. This worked out well because most of his buddies were also superheroes - I can only imagine the energy his teachers managed that day.

We also had a great time at Lauren's school carnival and David took the kids to a Halloween party at our country club on Thursday night. As you can see, they had plenty of candy, Halloween art projects and general fun before the big night even arrived. I missed the party on Thursday night because I was in Vancouver, Canada with a girlfriend to see Madonna in concert! Ever thoughtful David had given me two tickets for my birthday (in July!), so my friend and I had an absolute blast shopping, eating and revisiting our favorite Madonna hits. I made it back the next day in time for Lauren's school party and to get the crew ready for the big night - Halloween.

We got everyone ready and then went to their Aunt Shannon's and Uncle Brad's for a quick dinner. Then, we began trick-or-treating in earnest. The kids collected two bucketfuls of candy and really got into it this year. Jacob, in particular, could turn trick-or-treating into a contact sport. We were moving with a group of about 10 kids and Jacob managed to be first to the door most of the time. After several houses, he remarked that he kept forgetting to say "thank-you" - hard to do when you're in a full sprint. But, he remembered for the rest of the night. We hit lots of streets in our neighborhood and very briefly dropped by a Halloween party at our friend's house, but the kids were wiped out - namely Lauren and Taylor. I think Jacob (our candyman) could have gone all night.

Today I have been busy removing fake cobwebs from shrubbery and furniture; storing the ghosts, skeletons, pumpkins and other decorations; removing bats from our chandeliers; and saving the best of the Halloween art projects. As you can see - I love Halloween! I told David we were definitely going to dress up next year.

David took the big kids to the X Games this afternoon - a big event with professional skateboarders, BMX bikers, and other craziness. Taylor is taking a nice nap and I'm feeling very content.

I hope you all had a wonderful Halloween!