Very delayed update....

Hello friends...I have been a huge slacker this month on blog posts. It's been a crazy month - lots of fun holiday stuff with family, friends, and the kid's schools; work is finally getting back to normal for me (I took a new job leading our MSN PR efforts); and....our normal, day-to-day life is busy. I was telling a dear friend the other day that we're trying really hard, but there are days where I don't feel like a superstar in anything. Trying my best at being a mom (not only with Taylor, but providing equal time to the big kids), trying to do a great job at work (while keeping my type-A personality and competitive nature at bay) and balancing it all. All I know is that we're doing the best we can. The big kids seem happy and I'm trusting that we're doing the right things for Taylor, so we're making it everyday - and usually having lots of fun. I have been really looking forward to going to Missouri to see my family for Christmas (we're leaving Christmas day in the afternoon!) and taking a few deep breaths to relax. But, the weather in Seattle has introduced a mandatory relaxation window - while a bit inconvenient, I should be grateful!

We have had snow, snow, snow since Wednesday - lots and lots of snow. The kids haven't had school and we haven't been able to get Taylor to therapy. Our house is at the top of a super icy hill and it's very treacherous to drive down. We have a car parked at the bottom of the hill, but it's a half mile walk to get there from our house. Not a big deal (although certainly slow going) with the big kids, but it makes me nervous to carry Taylor on the icy sidewalks. She still fits in her infant carseat, so she's protected in that (on three sides anyway), but it's still nerve-wracking. So, we've been quite housebound - we all ventured out on Friday because we predicted that she had an ear infection and she needed to see the doctor for antibiotics. David took her while the big kids and I were dropped off downtown for Christmas/birthday shopping for David. I ran out of time with the surprising snowstorm and his birthday was yesterday!

Taylor had a tough week, even though she had a break from therapy. She had really yucky diapers early in the week, threw up 3 times on Wednesday, and had really restless nights Wednesday and Thursday nights (ahh....ear infections). She finally is looking better and it's great to see her smile and laugh again. We've tried to do her exercises at home, but know we aren't as thorough or proficient as her therapist. Since we're missing a lot of days next week when we leave for Missouri, I'm disappointed we didn't make every therapy session this week. As much as it can be a drag for all of us, it also gives me comfort that we're helping Taylor and that she's making some progress. It's still slow going and while we appreciate every gift, there can be many weeks where we don't see any discernible progress. Patience, patience, patience....

We also found out some interesting news from her genetics testing. As it turns out, I (Lisa) have the same genetic variant that Taylor does. This is actually good news (it seems like reverse logic). Basically, the geneticists say that if someone "normal" like me can have the same variant, the chromosomal abnormality that Taylor has is likely not the cause for her brain condition. Who knew I had a chromosomal abnormality all these years? Chances are....so do a lot of people that have no idea. The good news for us is that the genetic testing didn't definitely link Taylor to a more serious condition - the OK news is that we still have no idea why she has her brain condition. Increasingly, we're starting to realize that this genetics stuff seems ahead of its time - presenting lots of questions and not a lot of answers. So, in the hierarchy of doctor visits, we're going to let this one go for now and revisit when she's older (unless Dr. Spector has other specific recommendations).

The good news - although she doesn't have a lot of new tricks - she is a happy gal and really enjoys laughing at her big sister and brother. We'll post some of our new family pics that really illustrate how happy she is. She can be a bit of a pokerface around other people, but around our family, she is so happy. Today we watched the big kids play outside in all of the snow through the window - mounds and mounds of the stuff - I've never seen anything like it in Seattle. We're so unprepared for weather like this that David was shoveling our driveway, sidewalk, and decks with an oar - we don't even have a shovel! I'm not sure there is a greater joy than watching David and Jacob play snow football, tackeling each other and laughing as they ran around the backyard. Or watching Lauren delight in making snow angel after snow angel and rolling balls for snowmen. Taylor laughed at the snow and the kids making frozen faces at her through the window. It has been a magical few days where often, I've taken a moment to embrace the specialness of the day. Christmas really is such a magical season and I'm so thankful for all of our gifts.

Merry Christmas!!!

We SO have the Christmas spirit!!! This week-end we had lots of fun - Taylor went on her first carousel ride with Lauren and Jacob (and David and I of course) as we ventured downtown to see the sights and enjoy the holiday carousel - an annual favorite. And today, we woke up to SNOW!! It doesn't snow very often in Seattle and the kids had a blast. They were out the door by 8am in full ski gear. It was hilarious. Taylor and I watched from the window and she got a kick out of watching the big kids play. I'll write more soon, but wanted to share our Christmas card that I finally created. Hopefully you will receive yours before the actual big day, but everything is a bit rushed these days. We have some adorable new pictures of our family from our photo session last week-end. I'll share more pics soon. As you can see, Taylor is quite the big girl now!!

Seeing Santa

We had another really nice week-end. We so love the holidays!! We're enjoying our Christmas decorations, countdown calendar, Elf on a Shelf watching our behavior, and lots of other holiday traditions. The kids are so excited and have stepped up their behavior a notch - if only it could be Christmas all year round. We had a fun movie/popcorn night on Friday night and family photos on Saturday. Hopefully I can post some good ones soon. As usual, it's so hard to get good shots of a family of five - particularly at the kid's ages. Lauren was a little grumpy, Jacob was a little crazy and Taylor had her poker face on - David and I were constantly looking down/blinking at the wrong time as we tried to get the kids to cooperate. So, our expectations aren't super high, but we're hopeful:) Saturday night David and I went to the auction at Lauren's school and had a fun night out. We were up and at em Sunday morning, as Susan came to the house for a 7:30am therapy session. No rest for the weary, or for those that had a glass or two of wine the night before.....Taylor is an amazingly good sport and although she still doesn't like the stretching, she's hanging in there.

Sunday night was the highlight! We saw Santa again at a special party at Brad and Shannon's golf club. They throw a really nice Christmas party with a great Santa and decorations. We always go with Brad and Shannon and their kids (Rory, Griffin, and Graham) and Brad's sister, Kim and her family (Kylie is the other kid in the picture). They actually all took a great Santa picture together, but here is a snapshot from the night! Taylor still doesn't blink at Santa, but we place her on his lap backwards, so I'm not sure she realizes she's sitting on him. Jacob asked for a rope, 2 hooks, and a mask - we're not sure what he has cooked up. He also asked for a bike without training wheels and a skateboard. A little challening list this year....Lauren asked for a reindeer (thankfully a toy) and a bouncy ball (similar to what she plays with at recess). We decided Taylor wants a ball that lights up. We hope Santa will deliver!

Being thankful

Thanksgiving week-end has come and gone, and tonight we had our first visit with Santa! My how the seasons fly:) We had a wonderful week-end on Whidbey Island celebrating Thanksgiving and a nice time decorating our house for Christmas when we returned. Taylor enjoyed watching the kids play, showing off her sitting skills, and didn't seem fazed by all of the activity (i.e. lots of people - in the past, this has been a bit overwhelming for her, likely due to her early vision challenges). She helped us pick out our Christmas tree on our annual Christmas tree hunt and is enjoying the Christmas lights and shiny ornaments at the house. She also has a newfound love of wrapping paper and tissue paper, so she was quite entertained with paper products while we decorated the tree with the big kids. It was a great, long week-end and we're still catching up on our sleep.

Last night as I was finishing Lauren's books, she said "you know, Mom, life's not fair" - such sage words from my kindergarten student. As I watched Taylor in her therapy today I remembered these words and agreed - life's not fair when a baby has to work so hard at basic skills. I almost got teary (a first for me in awhile), but managed to hold it together. Today actually went better than I expected. Susan had been out of town for a week and we (and Julie) worked hard to keep Taylor's muscles loose and ready for work. I was still afraid that she would have tightened up and re-entering therapy today would have been painful for her, but it was largely business as usual. She's such a little trooper and continues to work very hard.

This time of year, though, with all of its joy - brings to my mind lots of milestones that I thought we would enjoy. I remember last Thanksgiving thinking how Taylor would be able to sample Thanksgiving dinner this year (and while she did have baby food sweet potatoes, it wasn't exactly what I had in mind - no real food yet) and how we would have to carefully decorate the tree because she would be a mover and shaker this Christmas. Of course, things are different than planned, but they're still great because Taylor can smile, laugh, and and is learning to do so much more. I am very thankful for my family and all of our joys this year - probably this year more so than any other because we've seen so many other families struggling with so much more. Each day I'm choosing to be happy and hoping Taylor, amidst all the hard work, is happy too.

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!

Trick or Treat

Today was a very fun Halloween day for the Gurry's. You can see our pink poodle and High School Musical (Troy and Gabriella) in the pics. We went to Lauren's school carnival this afternoon and it was really fun - lots of games, prizes, face painting and sugar galore. The kids were so excited to be dressed up. We had to make an emergency wig run before the carnival because they decided they wanted wigs at the final hour. So, we ended up with a 70's man wig and Elvira wig, but the kids loved them.

We also went to church today and David enjoyed the service. I helped out in Jacob's class, now that he is in the pre-K Sunday school. Between he and Lauren, I've taught Sunday school the past three Sundays and I can't wait to just sit in the service next week. It is cute to see the kids so full of innocence and wonder.

Not a lot to report today - just wanted to share our Halloween pics - we have a fun week ahead of us and can't wait! Our house is decorated, costumes are ready, candy purchased and we're ready to let the fun begin!

Speed racers

Today is a day that we're counting lots of blessings. David went to a life celebration this morning for a colleague's 3 month old baby. Sadly, she died inexplicably of SIDS. It is just too heartbreaking to comprehend. With each baby that has joined our family I have prayed that I will treasure each moment and remember that each day is a gift. Some days I am better at this than others, but today I was reminded that our family is so, so blessed. And, I have treasured today.

I had the much more fun job of taking the kids to their first fun run this morning. They had watched their cousin win a cross-country race a few weeks ago, so they were excited to give it a shot. It was a Halloween race at the park - very low-key. Jacob ran in the 3-5 year-old race and got third place! He was so determined and just bounced along the 1/2 mile course. He was close to first and of course my competitive juices were flowing as we cheered him to the finish line. Lauren was in the 6-10 year-old race and I was worried that it might be a bit much for her (i.e. she definitely would not win). She asked Jacob and I (and Taylor in the jogging stroller) to run with her so we all lined up and when the race started she took off! There was no way I could keep up with the stroller and other kids. Her race was one mile and she ran pretty much the whole way. She finished well (second for 6 year old girls) and had fun. It was a great morning - the sun was out, leaves are beautiful, and the kids were embracing one of my favorite activities. I wish so badly David could have been with us because it was a treat to watch. Taylor watched the kids run and finally took a nap in her stroller while we waited for the awards to be passed out.

We've been cruising along since I last wrote. Taylor is now in a good routine with her therapy and we're contuing to see her make progress. No major new skills, but she's continuing to progress with her sitting and tolerating other new skills. We're trying to make more time to work with her at home too, but given the craziness of our lives, we do a better job some days than others. This week was nutty - David went to Pebble Beach for for a few days and I had my first work trip in two years - an overnight trip to LA (where I blissfully slept for 11 hours). So, that's why the posts have been few and far in-between.

Our big dilemma right now - once again - is sleep. Taylor is really struggling (and so are David and I). She's waking up many, many times during the night (honest to goodness - sometimes like 20 times) for someone to put her binky back in her mouth, practicing her new sounds, or her latest trick - rolling on to her tummy and then crying so someone can help her turn back over. I had gotten so desperate that I was ready to let her cry it out, but I keep delaying due to a small cold she picks up, or now the new tummy roll trick. We need to figure something out though - she and I both are not getting near enough rest, which is why the LA sleep was pure bliss. Not really sure how we're going to handle this one, but we need to figure something out - soon.

We also got to see David's brother, Jon, wife Monica and new baby Kyla today. They live in Park City, Utah so we don't get to see them as much as we would like. They came over for several hours and it was so fun to see Taylor and Kyla together. Kyla is almost 4 months, but she and Taylor will surely have many wonderful memories together over the years.

allergies

Wow, I've been a slacker haven't I? I didn't realize so many days have gone by. I don't really have an excuse - just the business of three young kids, a job, lots of doctor appointments, and trying to have lots of fun amidst the nuttiness.

We had one major appointment since I last wrote. I took Taylor to the allergist last week and it was a long appointment - almost 3 hours. They tested her for 9 potential allergies, she is has egg and nut allergies and they seme to be severe......minute issue after the last several months. Great news is that we have continued to see lots of progress. Taylor is working hard on lots of new sounds...a great sign. She says mama, baba, wawa, dada, etc. Not sure if she knows what they mean but the speach therapist would be proud.

Taylor is on a bit of a sleep strike.....or a huge sleep strike...but once again it seems like a somewhat minor issue. We had the opportunity to stay up from 1:30 to 6:30am 0n Friday night with a happy smiling baby..Joy Joy!

Lauren had a great report from Kindergarten...she is assimilating well and is up to speed on her letters and numbers. More importatnly, she is a good friend, polite, offers to help, and listens most of the time.

.....I just spent the last hour talking to my sister on the phone, so David decided to write tonight's posting. Isn't it great to have two writers in the family?

Sitting and specialists

Today was another day of progress for Taylor. She sat unassisted for 3 minutes - it is so exciting. She had some help - she was sitting on a round mat (looks like a log) and had each hand placed on stuffed soccer balls (at her sides), but she sat erect and kept her hands down to the entire team. She's really getting the idea. Susan thinks she'll be able to do it on her own within a month. It's so exciting because sitting is such a critical milestone and by learning it, Taylor shows she has the aptitude to learn - hopefully this is just the beginning.

I promised to update you on her doctor appointments yesterday. They were anti-climatic, to say the least. Initially, we would get geared up for appointments at Children's because it seemed like such an "institution." We're learning that like any doctor office, you might have a good experience or a bad experience. Certainly miracles happen there, but our doctor appointments don't hold the aura they once did. And we're wise to not expect much.

We weren't as concerned about the nutritionist meeting because Dr. Spector had explained that her weight is fine now. She's back on the growth chart (at a hefty 3%), but she's proportional height/weight. He and Susan have also explained that we don't want her to get too big since motor skills are challenging for her, the last thing she needs is extra weight. The nutritionist basically told us that she's getting plenty of calories (600-700 calories/day) and to keep doing what we're doing. We're going to introduce regular milk with her baby food, with the goal of moving her off formula when she's 16 months. Hallelujah - that stuff is crazy expensive. She encouraged us to keep trying small solids, but no one is too worried about the solids as long as she's getting enough calories. We'll keep working on it, although we're waiting until after she sees the allergist next week to make sure we understand any food allergies (after her bad reaction last week).

The neurodevelopment appointment was....forgive me neurodevelopment doctors....a big confirmation of everything we already know. Maybe it's useful if you aren't doing the therapy and educational programs that we're doing, but wow...it's basically "yes, she's still delayed", "you have an aggressive therapy plan and doing everything you can", "see you in 5 months". It was incredibly anti-climatic and I don't think I learned anything new. It makes me even more glad that we're working on seeing a neurologist. On the flip side, it's good confirmation that we're doing the right thing, but I always secretly hope for the big "ah ha" moment. He was more interested in the tightness in her arms/hands this time (surprising since it's actually better than the last time we saw him) and encouraged us to continue to track her head circumference regularly. Dr. Spector and Dr. Dudas had been worried that it was so small on the growth chart (also 3%) and Dr. Cowan was potentially concerned that the rate of growth over the past months was significant (which could indicate fluid building on the brain). He said there was no need to worry now, but to watch it over the next months. No one seems overly concerned, but we're looking forward to the neurology appointment. And, we survived another day at Children's.

The doctor appointments just seem like a nuisance right now - I would way rather focus on Taylor's new tricks!!

Mama

Tonight my heart is overflowing. Taylor said her first word "Mama". This is so huge for our family and for Taylor - a major milestone. She has said mama a few times over the past day or two and I was excited that she was making the "ma" sound (a new one for her), but wasn't sure if she was connecting it with me. At therapy today, she definitely looked at me and said "mama" when Susan was working with her and she wanted me to save her from the exercise. And tonight, as I was putting Jacob and Lauren to bed, I had placed her in her crib. I was reading Jacob his story and heard Taylor in her crib saying "mama, mama". I'm on cloud nine. I was thinking the other day how precious the baby stage is and how everyone says it goes too fast. While typically true, we've also been craving a tight hug around the neck, to hear her call out for us, and other basic things that we've taken for granted in the past. Thankfully, we've had smiles and laughs to sustain us, but we've had the baby stage for 14 months now and we're so excited that she is learning new tricks.

She also had a brilliant day at therapy. Susan has mentioned that Taylor is much better for Julie and David - smart girl, she knows I am the softy, so she definitely isn't happy most days I take her to therapy. Today, she babbled and even laughed many times (at a squeaky doll) and seemed to have a good time. This is such a gift because we don't want the hours of therapy to be a drain on her. Today was also the first day that I saw her sit really unassisted (with our arms close to catch her), but I can see it happening. She had her arms down and balancing herself and I know she is going to do it soon. It's been a long road since May and finally we feel like there are bright lights of hope. Still so far to go, but I'm thankful for the feelings of hope and optimisim that I have tonight.

I'll update you on her doctor appointments yesterday tomorrow - tonight I want to treasure the happiness of hearing her call for me and my belief that we're on the cusp of a breakthrough.

Treasuring every moment

Today we are all still recovering from the week-end. Lauren and David had their first big camping outing with the Y-Guides (similar to Brownies, except with their Dad's). They joined 10 other girls and dad's for a full day of fun on Saturday at Orcas Island, followed by a long night in a cabin. They both had a blast, despite some rain. No surprise, Lauren's favorite activity was any art project - including pottery. The only thing my girlie girl refused to do was archery, so we considered it a winning week-end. It was hilarious comparing how the dad's prepared for the night away vs. how us mom's would do it - but it all seemed to work out.

Jacob, Taylor and I had the week-end at home and Jacob was so bummed about being left behind that I over-planned activities for us. He had a great time, but was worn out by Sunday. I worked more with Taylor on stretching and tummy time over the week-end - the three day break has been making her slow to get going in her therapy sessions on Tuesday, so I promised Susan we would do more homework.

Tomorrow will be less than fun - we're going to Children's for the nutrionist appointment and our second appointment with our neurodevelopment doctor. Compared to our first meeting with him, I feel like a different person. We were so uncertain and scared and hopeful for answers. We've come a long way since then and we're much more realistic about tomorrow. We know we likely won't learn much, and that's OK. Our main concern is that Taylor's head is not growing as they would expect - this likely is a normal side effect of her condition, but it will be nice to hear his thoughts.

On a lighter note, I read a great article from my favorite blogger/writer - Kristin Armstrong. She writes for RunnersWorld.com and offers a great mix of running stories/balance/girl talk. Anyway, the article I was reading was focused on enjoying the moment and it resonated with me.

"Why do we grow up and forget how to play? We wear our responsibilities like a cloak and take ourselves so seriously. For myself, I can say that I get stuck in a place where I do all the things that I think show the people who count on me that I love them. The bills are paid, the laundry is done, the meals are prepared, the list is crossed off. These things are important and speak of love in terms of care, but they don't speak of the heart. The heart resonates in present and playful moments, in a spontaneous hug, a laugh, a communal activity, or a shared delight. It's the simplest notion in the world, being with someone vs. doing something on their behalf.
Even if the weight of our responsibilities remains the same, cultivating the ability to be in the moment is a gift - to ourselves and those we love."

So, I'm committing to working on using my moments as gifts - even if the to-do list takes a little longer or never gets done at all.

Welcome to the team

Yesterday was a long, exhausting day, but progress was made. My day started off with Dr. Spector, the elusive pediatrician we've been trying to see for months, calling and asking if we could meet with him at 5:30. Hooray! Dr. Spector is a very seasoned pediatrician with tons of experience with special needs kids. In every setting, his name kept popping up as the guy to see. He's also been one of the few "best pediatricians" to repeat in the last several annual doctor polls that I researched. The only problem - he only takes newborns and we were initially turned away because Taylor was nearing her first birthday. I kept hounding him, finally spoke with him on the phone and he was impressed with our understanding of Taylor's condition and desire to help her. We played phone tag for awhile longer and I was thrilled to get his call this morning.

Then the day got interesting. Susan had moved Taylor's therapy to late afternoon (a tough time for her) and I had to wake her up from her nap to go. I had planned to go straight to Dr. Spector's office. Taylor was hungry when we got to Susan's and I was going to give her some formula in her bottle, but Susan offered a spinach souffle she had just been using in feeding therapy with her previous client. I said OK and Taylor had three small bites (baby spoon size) before clamming up. She was a little fussy when we started her therapy and I thought she was still tired and uninterested (not uncommon for her). After a few minutes, Susan asked if her face looked blotchy and within minutes her entire face was bright red and covered in hives. I've never seen a baby have an allergic reaction before and it wasn't pretty. She was totally broken out and I took her outside in the fresh air. I was trying to decide what to do and she started throwing up. The more she threw up, the quicker the hives started to disappear, so I was actually relieved. She threw up probably eight times and began to return to normal (although a sad, tired normal). I felt awful - I thought the spinach souffle was baby food (it looked like it in the dish), but it was actual food. Taylor is likely allergic to eggs or cheese......total bummer. She had a dramatic reaction to three small bites - it really worries me what would have happened if she ate the whole dish.

I felt terrible taking her to the doctor appointment, but we'd waited so long for the appointment and I thought it might actually be good for her to see a doctor, so off we went. Again, we were quite the pair - she went through two outfits and I managed to keep most of it off of me, but we weren't the cutest family by any means. We met Dr. Spector and had the most thorough doctor appointment ever. We were there until 8pm - over 2 hours of actual conversation time. He went through her history in detail and had clearly done a lot of research on her condition. He thought the absence of both the corpus callosum and septum pellucidum were more meaningful than anyone we had met with (who downplayed the septum pellucidum). Dr. Spector said lightning doesn't often hit twice and we wants to understand the root cause to Taylor's condition. He believes it may be associated with a syndrome and if we can learn more about the cause, we can get a specific diagnosis, which can help us anticipate her future and make sure we're doing the best preventive care. As David says, "He's doing offense, not just playing defense." Everyone else we had met with had downplayed understanding her condition and stressed the focus should be on her development and therapy plan. While true, we were really encouraged by Dr. Spector's comprehensive approach.

He thinks we should see a neurologist, in addition to neuro-development, to ensure that we really understand what's happening in Taylor's brain. We're so glad - this always felt like the right move to us, but Children's had pushed us to neuro-development and Dr. Dudas had followed their lead. Dr. Spector also is very interested in seeing the results of our genetics work and mentioned another speciality that takes information from genetics, combined with other data, and makes scientific diagnosis.

On one hand, it was overwhelming to relive the last year, but we feel great that we now have a "conductor" to lead the orchestra of specialists we're seeing. This was Dr. Spector's description and we desperately have needed a conductor. So, we have more to do now, but we're excited to learn more. We finally feel like we have the right team in place for Taylor.

Remlinger Farm Pictures

Happy Fall!!!!

Birthday season concludes

Phew....birthday season at the Gurry house is finally winding down....Lauren celebrated her big 6th birthday this week-end and we're finally all just recovering. I've been fighting a cold, which has threatened to take my voice, for about a week now and I'm so ready to be rid of it. I needed to be in fighting shape for this week-end and all of the fun festivities.

David took the day off on Friday and took Jacob to Whidbey Island for a boy's day. They had a great day - running on the beach, playing, and doing "guy stuff". Jacob loves his guy time and Taylor and I were able to enjoy a nice, quiet day together (although we did some birthday shopping) while Lauren was at school. Of course, when we picked her up she needed special "girl time" so we went to University Village (shopping area) and bought a few dresses for her, looked at books at the bookstore, and had a special dinner (at World Wrapps:).

Saturday was her big friend party and we had fifteen 5 year-old girls to the house. David had planned to take Jacob and Taylor to the zoo for most of it, so Lauren could have treasured "space", so I really needed my voice to hang in there. Can you imagine not being able to speak amidst that circus? Thankfully, I was able to talk and it was a really fun time. We moved all of the furniture in our living room against the walls and made a dance floor for our High School Musical party. It was put to great use as all 15 ran and danced and generally flung themselves around. They also decorated their own microphones, played dress up, and spread out all over the house. Lauren had a blast and the girls seemed to have a great time. This is a picture of Taylor surrounded by several of them. She's always a big hit since she is a "real life baby."

Sunday (Lauren's real birthday) was a beautiful, sunny day so we went for our annual Remlinger Farm visit. It's a great mini amusement park with kid rides and activities. They have a huge Halloween festival, so it's great fun. As the birthday girl, Lauren got to do whatever she wanted - and rode the pony ride about 10 times. Seriously - she rode nearly every pony they had. Jacob is a bit more adventurous and loved the "real life" roller coaster. He cracks up so hard, everyone on the ride laughs with him. It was a great day and Taylor was a good sport in the jogging stroller. She got to come along on the train ride and while Lauren and Jacob "drove" mini cars, so she had a good time.

It was a great week-end and now we're ready for fall and the next big thing - Halloween!

Bulking up

We are on a mission to fatten up Taylor. And, we think we're making progress. Our little peanut is growing. We saw a fabled feeding specialist (Gayllyod) on Monday afternoon - she came to our house and evaluated Taylor's high chair, her eating habits and how she eats food. She's such a guru that her evaluation was $400/hour, and Susan, our primary therapist joined, so it was $600/hour of expertise - thankfully covered by insurance. Gayllyod quickly adapted Taylor's high chair to help her sit more comfortably. Essentially, she needed a boost and so now she sits on a large layer of foam. This is similar to how my dad made me sit on large pillow when I first got my driver's license. It was quite embarrassing, but served the purpose. Taylor's in a similar situation. She sits much more upright with her adapted chair and now can reach out and play with her tray (before the tray sat too high for her arms to reach across comfortably).

She also watched Taylor eat and was very positive. She doesn't think we're in "crisis mode" and was pleased with how well Taylor is sitting in her chair and how well she eats baby food and drinks from a bottle. Essentially, our challenge is texture. Because Taylor has had limited hand control, she just started putting her hands in her mouth during the last months and she's just now putting toys in her mouth. This is another delay due to her hand motor control. This impacts her eating because her mouth isn't used to solids, or textures (most babies are introduced to solids/textures via mouthing toys - not actual food). Amazing how it's all so interrelated. So, we have these little tools now (like skinny toothbrushes without the bristles) to help Taylor get used to having solid objects in her mouth. She also advised that we give Taylor large food items (such as a large, peeled, whole carrot) that she can safely hold onto, hopefully gnaw on, and get the idea of food. She also encouraged us to keep trying. We'd gotten discouraged and worried about her weight gain, but we just need to be more creative. At the EEU today, David gave her a smashed banana and she ate almost half of a real banana! We are thrilled. Now we can try avocado and other mashed food to help her transition to solids. She's very slow, so we just need to be patient and keep trying.

The other thing we're doing is upping her caloric intake. We are really shoveling the food to her right now. She's eating at least 1-2 jars of baby food/day more than she was a few weeks ago. And, we're doctoring her food to add calories. Her morning oatmeal isn't just mixed with formula now - she gets a big hunk of butter and a spoonful of sugar. My healthy nature can hardly stand it, but the calories are good for her - and no surprise, she loves it! Amazing how much more oatmeal you can eat when it's loaded with butter and sugar. We're feeling optimistic that we're on the right track. She'll go back to Dr. Dudas for a weight check next week and we're seeing a nutritionist at Children's on October 7. Thankfully, Gayllyod didn't recommend regular therapy (hallelujah), although we will see her again in three weeks to see how Taylor is improving.

We're continuing to make great progress in therapy. The past sessions have gone really well. She's getting stronger and her sitting and standing practice is going well. We're so happy to work on functional skills and can't wait to report when she's conquered her next big milestone! This is a pic of Taylor sitting in her bumbo chair in the tub (we thought it was a great idea, except it floats, so you have to constantly hold the chair down - oops).

Johnny Jumper

This week-end was really fun, even though an early, rainy fall is upon us. Yesterday we had Jacob's friend birthday party at the jumpy house (tons of huge, inflatable toys). There is no greater joy than seeing ten 3-4 year-old boys jumping, tackling, and pummeling each other within inflatable play structures. They were all sweaty, laughing, and having a great time. The biggest hit was the toy with inflated boxing gloves. The boys had a blast and there weren't any tears, even though I worried that they were playing too rough at times. Several girls were at the party too, including Lauren of course, and they had fun as well. It's a great gender-neutral party. It was great fun seeing lots of friends - old and new. Jacob, in true "I know what I want" fashion had chosen a pirate theme for his decorations and goodie bags, and then at the last minute chose a basketball player cake. So much for coordinated party planning, but every guy should get what he wants for his 4th birthday. He and Lauren had a blast playing with his new toys when we returned home and Taylor recovered from the hoopla with a nap.

Today, Lauren and I ran/walked/skipped her first "race". It was a 5K race at Magnuson Park, coordinated by our church, to benefit our sister school in Malawi, Africa. I tried to use it as a teaching opportunity and explained to the kids that we needed to run to raise money so the kids in Malawi could have a nice school like they have. After a few seconds, Jacob asks "Why do they have a mean school?" Such innocence....and clearly I need a new teaching technique. Lauren did great and we finished in just under an hour (!). It takes awhile if you stop to pick flowers, count caterpillars, and visit with your friends. The sun came out during the race and it was a great afternoon.

Taylor had a great week-end of exercise too. We brought out the Johnny Jumper (a seat that hangs from doorway moldings) and she simply loved it. Lauren was also a huge fan and it was so fun to see Taylor patting her little feet on the ground to jump. She would jump harder when we would cheer for her and she loved it. She loved it even more when Jacob gave her a big spring - she cracked up, but we had to explain that no one else should make her "fly". It's just great to see her upright and having a great time.

So, a good week-end for the Gurry family - happy kids and one more birthday down during our birthday season. Lauren is next week-end, so we need to get ready for the next one! And no, we didn't plan it this way:)

Shout out to Jeff

Tonight I am thankful for Jeff Dossett. Jeff has been my manager at Microsoft for the last several years and we've been through a lot together. Through-out, he has been the epitome of strength of character, positivity and compassion. He's a 17 year veteran of Microsoft and is a great example of a brilliant corporate executive with a huge heart. Many have asked how work is going for me with everything else going on and I've been able to say that my manager has made all the difference. While pregnant with Taylor, he gave me this cool project called Live Earth (which became the most watched live event online ever) and graciously allowed me to take 8 months leave (6 month maternity plus 2 month sabbatical) after Taylor was born. Literally the day I was to return to work was the day we found out about Taylor's brain condition. Jeff was climbing Mt. Everest (seriously) at the time, but when he returned, he was incredibly supportive and gave me the time I needed to cope, develop a smart plan, and ensure we were doing everything we could for Taylor. This support has been a tremendous gift to Taylor, and our entire family. So many have helped us, but this time has made all the difference in the world for all of us.

Unfortunately, Jeff is not my manager anymore, but our last project together was in support of the RED campaign. Jeff is a huge supporter (so huge that he carried their flag to the top of the world) of RED - you can read more about his involvement at http://www.teaminspired.com. I'd like to encourage any blog readers to consider purchasing a RED product or join the RED community at http://www.joinred.com/ - as a huge thank-you on my behalf to Jeff.

We still have a white picket fence

The other day I ran into someone and shared the high-level details of Taylor's story. We discussed it for awhile and she was very kind. Then, as we were wrapping up the conversation, she said "so much for the white picket fence, right?" Now David and I know that it is very hard to find the right thing to say and we completely understand when people don't know what to say. And, we really have never been offended by anything anyone has said, because we know that people have kind hearts and only want the best for our family. I didn't acknowledge the comment and let it go, and left the conversation with a smile.

But, I couldn't stop thinking about it in an introspective (not sad) way. I guess some people might have thought we had a "perfect" life before (a la the "white picket fence") and now because Taylor has challenges, our life is no longer perfect. I view it differently. We are as perfect as any family can be, because every family has their challenges. Taylor's challenges are more unique, but Lauren was a rotten sleeper, Jacob had poorly functioning ears that led to numerous ear infections and ear tubes, and David and I have both fought through challenges in the past. This is our most important challenge to be sure, but in no way does it impact the "perfectness" that is our family. I really view Taylor as perfect as my other kids - they're all flawed in their own way, but completely, 100% precious and special. In fact, I think Taylor's challenges will over time give her strength of character and a work ethic that will aid her well in life. And, I think our family will be more compassionate, patient, and open-minded because of our experience.

So, my white picket fence is perfectly intact, thank you very much. And we feel a million times blessed for each of our children. Of course we would never want anyone to worry about saying the right thing - just knowing that our family and friends are there for us means the world to us. And, honestly, we haven't been offended yet - but I wanted to share my perspective on perfection.

Taylor and Lauren

The previous post was a bit somber, so thought I would balance with this picture of Taylor - I've tried to explain how much she adores her big sister, but this picture says it all. Lauren is holding Taylor and this is how Taylor typically looks when she is with Lauren.

Taylor's first days of school

Well, since my last post I was reminded that it's much easier to be a Tigger when you're well-rested. Sunday night, Jacob woke up at midnight screaming with a raging ear infection and screamed/cried for the next three hours. Taylor woke up and was wide-eyed for two of the three hours (Jacob has some major lungs - miraculously, Lauren slept through it all). In any case, I had about three hours of sleep all night and was decidedly un-Tiggerlike on Monday. Unfortunately, that was Taylor's first day at her new school at UW. She was tired and selfishly, new situations are always hard for me as it's a big reminder of the crazy situation we're in.

We arrived at her school at 9am and the structure wasn't perfect for Taylor. She typically has a morning nap then and we were all running on fumes from the night before. At her school, the schedule is 30 minutes outside play on Monday (varied with 30 minutes gym play on Wednesday), followed by a snack, indoor play time and circle time. It's a little Gymboree-esque, which is appropriate for the 12-18 month old crowd. Taylor was the littlest (by age and stature) in the program and most of the kids had been attending the school through the summer. Unfortunately, she also had the least physical skills (everyone else can sit unassisted), which makes some of the activities less thrilling for her. Outside time was hard because the only thing she could really do was swing, which she enjoyed. She was very wide-eyed and was taking in the new scene. She also was the only kid that couldn't participate in snack time, because she is the only one not taking solids. She sat with the kids and enjoys watching them, but the whole experience was hard for me because I so badly want her to have fun like the other kids. Keep in mind, there are kids with Down's Syndrome, autism and other challenges in her class and it was eye-opening to me that poor Taylor is the least developed. Of course, all of the kids have several months on her and our hope is that she catches up. But it was hard. And, the lack of sleep had me fighting back tears practically the whole class. I never lost it, but it was a big effort on my part.

Today was much better. The gym time was much more conducive to playing with her and helping her practice tummy time, etc. I also spoke with more of the parents, who are all very nice, and supportive. She ate a Rice Krispy and a sliver of peach at snack time, and while she didn't really swallow them, at least she didn't gag. And, she really enjoyed the indoor play time - they had her favorite chair with a tray so she could sit by herself and several toys that she enjoyed. She also likes watching the other kids and was much happier today (I'm sure the extra sleep helped her too). It was a much more positive experience and now that we're off and running, I think we'll all love it. The on-site physical therapist was there today and she was very nice. We were again encouraged that she thought we were on the right track and was impressed with our aggressive therapy plan.

So far, here's what I've learned:

• You will never see a more heroic group than special needs' kids. They have worked incredibly hard for minor skills that most of us take for granted and never had to "learn". They are precious, sweet, personable, and a whole lot of fun.
• You also have to admire the strength and determination of their parents. Some of them have sat through open-heart surgeries, heart-breaking meetings, and hours and hours of therapy. While every story is different, the commonality is that they love their kids - no matter what.
• Taylor is a lucky gal, and we're a lucky family, to be invited into this community. We have a lot to learn and hopefully, someday, will have a lot to give back.

Taylor has had amazing days of therapy the past two days. It has been such a treat to watch. We're still starting off with stretching and loosening her muscles, followed by tummy time and working with her on bearing weight on her hands. This is the hardest part because she really doesn't like it. Susan says it isn't painful for her, but it's like when your hands fell asleep and they're tingly when you try to use them - her hands were clinched for so long, the sensation of using them is unfamiliar. But, we're seeing progress and she's tolerating tummy time better. The most exciting part is she is getting much better at using her hands to catch herself while sitting. She's always supported during this exercise, but she's definitely getting the idea. And, today we practiced standing from a sitting position, which Taylor can do on her own. Her hands are the problem again - she can't get her hands out to balance herself, but once those hands work she'll be able to do all sorts of things. We're feeling really encouraged and that we're on the right track.

So, busy days, but we're beginning to get into a routine, which is wonderful. I got a little behind in picture posting so added a few extras for you to enjoy today. This is Taylor and her new friend, Owen, swinging and Taylor and I during circle time. There will be happier pics to post later, I'm certain.

Tigger vs. Eeyore

Here is my last reference to Randy Pausch - and this may be the most brilliant. In his rules to live by, he asks "Do you want to be a Tigger or an Eeyore?" Without a doubt, I am a Tigger. I want to embrace life with joy, optimism, and smiles everyday - excited to round every corner and tackle anything. I definitely do not want to be down-in-the-dumps and morose, and looking for the negative. While so simple, I have found this to be a really helpful tool. Just today, when I saw a baby the same age as Taylor, rather than sadly compare development - in my head, I said "I am Tigger." Later in the day, after folding mounds and mounds of laundry (how a family of five can create so much laundry is beyond me, and my own mom, who also raised a family of five), and losing patience with the big kids, I repeated my internal mantra "I am Tigger". It's amazing how envisioning that cute little orange fellow can bring a smile to my face. I re-read this portion of Randy's book last night and this morning, as part of my endless clean-up, I happened upon a small Tigger that was on one of the kid's birthday cakes years ago. I placed him on our windowsill to keep his spirit top-of-mind. We all could use a little Tigger and I hope to never lose sight of my inner Tiggerness.

Celebrating today

Today was a great day. We celebrated Jake's 4th birthday today, just our family. His big party is next week-end (strategically planned around the Husky football schedule). Today was a day that made us thrilled to be parents. Jake was so happy and we did everything he wanted to do on his special day, including pancakes with candles for breakfast, bike riding, Chuck E. Cheese for lunch, lots of time for playing with new toys, scooter riding, football playing, Husky watching, his choice dinner (mac and cheese, banana, carrots, sushi and pot stickers - what an eclectic little guy), and cake of course. He had a great day and he and Lauren played really well together all day. We're not sure if it's because it was Jake's birthday, or if she just wanted to play with his new toys. In any case, we had a great day.

We had several moments that I just cherished as special family time. The small moments really are the best. While we were driving to Chuck E. Cheese I started a rhyming game to pass time (dog/log for example) and David, in his most boyishness, said "spring/ding-a-ling" - Jake's favorite word for his privates. Jake died laughing, which cracked up Taylor, which cracked up Lauren, and suddenly the whole mini-van was in hysterics. This didn't do much for our anti-potty talk, but I cherished the laughter surrounding us. We also spent time in our front yard, just soaking up the sunshine - planting flowers, playing football, and running circles around Taylor. She just laughs at the big kids and we set her swing up outside so she could enjoy the nice breeze.

Nothing major to report today - it was just a blissful day. It was a day especially appreciated because the last week was hectic and stressful with Taylor's stuff, and David and I were both a little fried. A few words of wisdom have also lightened my heart today. Julie wrote a beautiful card about God making smooth and easy paths for us, illustrated by Isaiah 49:10-11 - "For he who has compassion on them will lead them and will guide them to springs of water. I will make my mountains a road and my highways will be raised up."

And, I returned to my favorite Randy Pausch book (The Last Lecture - you really must read it) - and found a great reminder: "We all have finite time and energy. Any time we spend whining is unlikely to help us achieve our goals. And it won't make us happier." So, smile on my face and looking forward to a great week!

Magic Shoes and Bulking Up

Taylor had a busy, and frustrating, week this week. I'm realizing my blog posts are more infrequent - the first weeks of school have been CRAZY with lots of "parent orientation", in addition to crabby kids at the end of the day. So, I'll try to catch up on the past week.

Her big focus this week was getting orthotics for her feet to help her start practicing standing and working on growing bigger. The orthotics were a total zoo. You can imagine trying to get orthotics perfectly made for a tiny baby. Taylor is still really little and her feet are quite small, so I'm in awe that anyone would even try to make her orthotics. I had taken her to get casted several weeks ago in Issaquah (about a 40 minute drive) and David, bless him, signed up to take Taylor to pick up the finished orthotics in Mt. Vernon (almost 90 minutes away). We were trying to work with the "best" baby orthotic maker that our therapist had recommended, thus the traveling circus to connect with their traveling clinic. David came home with orthotics that looked different than what the technician had talked with me about in Issaquah. When I took them to Taylor's therapy session, Susan was livid. She totally let the poor technician have it over the phone and insisted that they fix it immediately. They didn't fit well and didn't have some of the bracing stuff that she had requested. So, David's 4 hour trip was essentially a waste. Thursday, I took her to the orthotic company owner, who happened to be at Swedish Hospital in Seattle (don't get me started on the craziness of trying to schedule meetings with these specialities). He agreed the original pair were poorly made and made her a pair of good, temporary orthotics on the spot. Her shiny, pink pair should arrive in 2 weeks. The good news - Taylor can finally practice standing. She wasn't placing weight on her feet equally and Susan wanted the orthotics before she practiced standing to ensure that she learns correctly, which hopefully will help her walk normally. So, after about 8 hours of orthotics appointments, we finally have a temporary pair that can work for now with a great pair on the way. Of course, the big kids are fascinated with Taylor's "magic shoes", but I'm terrified they will get damaged. They are worth their weight in gold given how hard we had to work to get them. I'll post a pic soon. Needless to say, she doesn't enjoy wearing them, so I haven't snapped a picture yet.

Thursday was a really busy day. I also took her to the feeding specialist at Children's. Thankfully, her endocrine tests came back normal, so now we just need to focus on fattening her up. We didn't learn anything earth-shattering - other than we shouldn't worry about normal eating milestones for now (such as getting her to eat solids), but should instead focus on increasing her caloric intake. The therapist was nice (and also had kids at Lauren's school - small world) and the meeting was pleasant, although another morning at Children's is not my favorite way to pass time. Unfortunately, she didn't have magical answers for us, but recommended that we see a nutritionist (!) to help Taylor with a feeding plan. Taylor will soon have more team members than most professional athletes - it's seriously amazing. In the meantime, we're working on loading her up with baby food (she's getting all of the fruit she wants and the dreaded vegetables have largely gone by the wayside) and as much formula as she can guzzle. An indication of how far off we are - the feeding specialist said most kids Taylor's age are eating 2 jars of baby food per meal - we're lucky if she eats 2 jars a day. So, we have work to do, but we're glad she isn't alarmed. The next step is meeting the nutritionist and we have another feeding specialist coming to our house on 9/22 to look at Taylor's high chair and give us hands-on coaching - which feels a bit weird with our third child, but we'll take any help that will help Taylor.

Finally, we saw the speech therapist for the first time (also on Thursday - a banner day for appointments). She was really nice and great with Taylor. She gave me several good ideas to focus on (more working on nodding yes and shaking head no, giving Taylor choices using flash cards of common objects (do you want your bottle first or baby food?), and continuing to talk with her). She recommended against working on sign language for the next several months until Taylor gets better control of her fine motor skills on her hand. But, we can work on building her vocabulary so when she can speak, she'll be able to be a motor mouth from the get-go. We also won't see her regularly for several months, which is actually a gift right now, due to her aggressive therapy schedule.

We had a poor week of therapy since Taylor was so busy with other appointments. She was tired and not too interested in her therapy, so we're hoping to get back on track next week. She also starts her new school on Monday, so we're anxious to see how that goes. I've started asking all of the various folks we're meeting with for their opinion on Taylor's therapy plan and so far, they have all agreed that it is very aggressive, but great for Taylor if we can manage it as a family and pay for it (thank you again Microsoft for killer insurance). So, we're feeling peaceful that we're doing the right thing for Taylor, although this week was fairly exhausting for all of us. We're craving a routine and some sense of normalcy from a week-to-week basis. The various specialist appointments make this difficult, but I think we're doctor-appointment free next week - hooray!

Amidst the nuttiness of poor Taylor's schedule, Lauren and Jacob are adjusting to their new schools and Taylor is so happy to see them when they come home. Of course, they each have a runny nose already, so they'll probably share that with her too soon. But, it's great to see them all laughing and smiling at each other at the end of the day.

Taking it day to day

Today I'm enjoying a peaceful Sunday afternoon. Lauren is off with her girlfriends and Jacob and David are shopping for a "real life" basketball hoop for the backyard. Jacob is quite into shooting hoops these days and I don't know who will enjoy the new hoop more - Jacob or David. Taylor is taking a nice nap, so I get the unusual opportunity to update the blog during daylight hours.

Taylor survived her last trip to Children's. David was a great sport and took her for her blood draw and this one was a doozy. They took 5 vials of blood to run the various endocrine tests - the most blood they could actually take from her. She's such a little trooper. Thankfully, several of the tests have already come back normal, but we're still awaiting the conclusive report. We gave Taylor the day off of therapy because after the three shots in her legs the day before and arm pokes required for the blood draw, we felt like she needed a day to recover.

She had several great therapy sessions this week. We're continuing to work on reducing the tone in her arms and what used to take an hour (to see her arms totally relaxed), we can now do in 15-20 minutes. This is great progress. So, now we're starting to work with Taylor on sitting - primarily getting her used to bearing weight on her hands so she can catch herself. We're also returning to tummy time - her least favorite - but also an important step. We're buying her all of these snazzy new toys to help her tolerate the exercise - the latest purchase is a little dish that she lies on and she can spin it around to look at a colorful mat underneath her. She actually just did 5 minutes of tummy time on this new contraption without fussing, so I think it's worth it.

Susan and I had a long chat about the month ahead, and now that Taylor is tolerating therapy better, she wants to increase the session length and add more days. It's so conflicting, because of course we want to do everything we can to help Taylor, but the therapy is tiring for her and time-consuming for the whole family. It will help so much to have Lauren and Jacob in school so they're covered several hours during the week (because we don't like them to go to therapy, we always need two caretakers during this time - 1 for Taylor and 1 for them). David and I are also craving a consistent schedule to plan the rest of our lives around but understand the therapy recommendation will change as Taylor grows. So, we're doing the best we can to do as much as we think is good for Taylor. I was feeling quite overwhelmed the other day and found the perfect verse:

"Your father already knows your needs. He will give you all you need from day to day if you make the Kingdom of God your primary concern." Luke 12:30-31

So, I'm trusting that we will make it day to day and I'm pushing the "not helpful" worries again to the back of my mind.

We had a great appointment Taylor's opthamologist on Friday afternoon. He said she was doing much better tracking objects and he could see a lot of progress. As David says, we'll celebrate every piece of good news.