
Taylor Gurry
Monday, September 29, 2008
Birthday season concludes

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!
Wednesday, September 24, 2008
Bulking up

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).
Sunday, September 21, 2008
Johnny Jumper

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:)
Saturday, September 20, 2008
Shout out to Jeff
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
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.
Wednesday, September 17, 2008
Taylor and Lauren
Taylor's first days of school


- 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.
Sunday, September 14, 2008
Tigger vs. Eeyore
Saturday, September 13, 2008
Celebrating today

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!
Friday, September 12, 2008
Magic Shoes and Bulking Up
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.
Sunday, September 7, 2008
Taking it day to day
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.
Wednesday, September 3, 2008
Taylor's 1 year dr. appt.


