Therapy progress, genetics testing, and more fun

We've had another busy week at the Gurry house. Summer is winding down and Lauren starts kindergarten next week - we can't believe it! We've had lots of orientation stuff this week and Lauren is a little excited and a lot apprehensive. She'll love it once she gets going. Unfortunately the weather didn't cooperate this week for a last week of summer - lots of gray and cool temperatures, but we enjoyed it anyway.

We've had a big week with Taylor - we're so proud of her! We've reached our first major milestone - Taylor is rolling! She has rolled from back to tummy many times and we've seen her in her crib sleeping on her stomach for the first time. She enjoys rolling from side to side and there have been a few times where I've had to hold her still to change her diaper - a wiggly baby has frustrated many a parent, but we're thrilled to see her moving!

She had her typical busy therapy schedule this week and we're making progress! Now that her muscles are somewhat loosened, we've started working on our first functional skill - sitting. We can't wait for Taylor to be able to sit on her own and be able to play with toys. She is so ready to have fun independently. Her practice mainly entails getting her hands used to feeling pressure and training them to catch her if she tips over. Because her fists were clenched and arms bent, she has to realize that her hands/arms can be useful/fun for her. So, she sits with support and we tilt her from side to side, forcing her hands to catch her and feel pressure. Because they haven't been used this way, she's getting used to the sensation and particularly does not like her left hand receiving pressure. But, this is the only way she will be able to sit safely or catch herself if she falls. It is a little scary that she doesn't have any protective reflexes right now (if she tipped over, she'd land on her head or face). In general, she's tolerating her therapy so much better and doesn't cry much at all now - hallelujah. It's much better for all of us. We're trying a variety of ways to help her learn that her hands can be fun - Susan encouraged me to paint her fingernails to draw her attention to her hands, so now they're a lovely hot pink. Lauren helped with Taylor's "extreme makeover" and added stick-on earrings. Taylor loved it.

The next thing we'll work with her on is standing. Susan has explained that crawling is a pretty useless skill, so we're moving on to standing and eventually walking. This is fine with us - one of our most pressing goals is to get Taylor walking in the next year. Some have asked why we feel such a sense of urgency - here's why - Susan shared with us that only 5% of kids that aren't sitting alone by age 2 ever walk. Ever? I asked. Yes, ever. So, we're on a mission to get these brain pathways developed while she's young and give her every best shot. We're feeling really encouraged this week. Taylor's new orthotics are ready now too and we're hoping to get her fitted for them next week. So, on to standing.

The other huge gift we've had over the last weeks are really positive signs of Taylor's cognitive potential. We can tell that Taylor really understands what we're saying to her lots of times. Along with Susan, we're working on encouraging her to nod her head for "yes" and shake her head for "no". She has done this numerous times in response to questions, which is great. We don't know how long it will take her to speak, so we're also working on "eye-pointing" - which is teaching Taylor to show us what she wants by looking at an item. We'll look at books and say "Where's the dog?" or "Where's the duck?" and we've taught her several words. Over time, as her brain pathways connect she'll have a full vocabulary once she can speak. We are seeing a speech therapist on 9/11 and we're looking forward to seeing how early we can start working on this with her. The best news - her brain has shown aptitude for learning quickly - a huge, huge blessing.

Tuesday was another busy day for us. We started the day at Children's Hospital - 3 fun-filled hours. I can honestly say I dislike going there, even though they do miraculous things, it is far from a joyful place for us. There are so many kids in bad shape and I marvel at the heroic people that work there everyday. I try to count my blessings, but it usually leaves me feeling a little sad. Anyway, Taylor saw a new department to add to our roster - genetics. I had mixed feelings about this meeting, because I wasn't sure what we would learn. Dr. Cowan from neuro-development had encouraged us to go because her brain condition can be linked to many syndromes and genetics testing can help rule it out. The other, more controversial, reason is to determine if there was genetic link to Taylor's condition (i.e could Taylor, or other family members, need to consider the genetic possibility of a recurrence). The first one is easiest to write about.

Dr. Bamshack (the geneticist) and a team of genetic counselors examined Taylor and explained to us that there is always a cause for Taylor's condition (the missing corpus callosum). This is where science and faith get a little hard for me to reconcile. Through genetics testing, they can seek to learn the cause of her missing corpus callosum (a marker of a condition, rather than the cause) and if there are linkages to other broader syndromes (we certainly hope not, but good to rule out if we can). If she is diagnosed with a broader syndrome, we might be able to learn earlier ways we can help her. Thankfully, Dr. Bamshack said that because Taylor appears "normal", that rules out a whole host of possible syndromes, which can be detected by experts just by looking at a baby. He said that the genetic testing only turns up definitive guidance about 5% of the time - so hopefully it's "just" a missing part of her brain and the cause is a mystery.

It was really interesting seeing how specific they can look at the various chromosomes. This part baffled me. We had a CVS test on Taylor when she was 12 weeks pre-natally due to a worrisome ultrasound. It was incredibly stressful and we were so relieved when the results came back normal - ruling out any chromosomal issues, so we were told. As we've learned now, the CVS test is basically a high-level overview (like the blurry lines of an eye chart) which looks at major chromosome counting (i.e. one extra chromosome can mean Down's Syndrome). Even with "normal" results, there are shades of gray and the genetics testing is much more specific (like the bold E on the eye chart), so they can see various levels of all of the chromosomes (even with normal CVS results, as we're learning, there can still be some chromosomal screwiness). This was a little disheartening to learn - I think the radiologists need to be more specific about the accuracy of these pre-natal tests, but that's another topic. (side note - for those expecting or future parents, please know that Taylor's condition is very rare and definitely falls in the "don't worry" category).

The second item - possible genetic link - makes my head spin. Of course, we hope her condition is a "fluke" and there isn't a genetic link. All we can do is learn as much as we can and hope it will be helpful someday. To run the tests, they took more blood from Taylor (sigh) and we should know the results in 4 weeks. Depending on what they find, they may need to run more tests.

On to good news, that night we had another birthday celebration for Taylor with David's family. She loved watching cousins Griffin, Rory and Graham dance around with Lauren and Jacob. She received more fun toys, her own CD player for her room and cute clothes. The cake wasn't a hit again, but all-in-all, we're so happy for our 1 year-old girl! We can't believe she's already one and we see her working so hard. We really believe this is going to be an amazing year for our family and we're all going to be amazed at what she can do on her next birthday.

Taylor's 1st Birthday!

Taylor had a wonderful birthday on Friday . She had a lazy day at home and had lots of cuddles with David and I. We played with her favorite toys, read her favorite books, and Taylor and I even took a nap together. In the late afternoon, we had her birthday party - just our family, but Lauren and Jacob celebrated enough for many kids. Taylor received a cool singing mirror, musical band toys, new books, and a few baby dolls. Lauren (of course) picked out Taylor's favorite new toy. It's a baby doll that makes a kiss sound and says "I love you" when you squeeze her tummy. Taylor can't make the baby make the noises yet, but she smiles hugely when she hears it. You can tell she really loves that baby. She really likes musical toys, so most of her new toys/books incorporated music somehow. We gave her a little musical keyboard with large buttons that she can hit when she's sitting in her chair - that seems to be a hit too.

Jacob was a huge help tearing open her presents. Taylor was fairly uninterested in the wrapping paper, but she did like looking at the balloons we bought her and loved a few of her toys. She loved it when we sang happy birthday to her - she beamed from ear to ear. The cake part was fairly anti-climatic. She did pat it and played a bit in the icing and Lauren and Jacob had extra big pieces of cake in honor of Taylor. After her party, we went to Marymoor Park to hear the Recess Monkeys (a fun, kid band) with our friends and unfortunately her day took a turn for the worse.

She got another case of the stomach flu at the park and it was another doozy. Very similar to the West Plains episode, where it came on very quickly and she threw up probably 12 times in an hour or two. Same thing - it came on very quickly and she threw up many times by the time we corralled the big kids to the parking lot. She had been totally fine the past few days, so it's weird that she got sick again so quickly. We're keeping on eye on it and plan to share the details with the feeding specialist when we see him. Thankfully, she had a pretty quiet Saturday, but was more herself today.

Anyway, just wanted to share Taylor's special day - we can't believe she's already 1. Thank you to everyone that has shared in her last year, made Taylor smile, entertained the big kids, and provided such wonderful support to our family.

Great day of therapy and great times in WP

Taylor had her best day of therapy yet - the portable DVD player with Baby Einstein playing works wonders to distract her. Susan, of course, continues to challenge us and told me to get rid of the baby movie and find a more challenging show for her to watch. I actually love this - she keeps pushing us and Taylor and it's a good thing. She was really pleased with Taylor's level of tone (continuing to weaken, which is good) - she looks much more relaxed as her arms are straightening and her hands are relaxing. We started working on sitting today - unlike the other therapist, we aren't just sitting her down (with support) and expecting her to do it on her own someday. Susan is working on Taylor working her ab muscles (which are weak) and helping her practice balancing by tilting her and getting her comfortable with transitional movements. It's very logical and it's exciting to start working on a functional skill.

Our trip to West Plains was wonderful - Taylor had a great time playing with my family and watching Lauren and Jacob, and her young cousins, Ethan and Ryan, play and laugh. She loves to watch other kids. The pictures above are her laughing outside while "flying" and cuddling with her Aunt Shawna. David was great at helping her practice her therapy exercises each day, so we don't think we lost too much ground while we were away.

A few highlights of our trip - Taylor had her first birthday celebration with my family and received some fun gifts - a beautiful clock for her room, fun piano toy, cute hat and matching booties, pretty pink dress, and a lovely diaper bag. We also saw lots of family members, including uncles, cousins, and my sister's and their families. Taylor had tons of cuddles and lots of love. I went to church with my grandma to hear our special family friend and pastor deliver a wonderful sermon about Jesus healing a woman of her "infirmity." His message resonated with me and again I fought back tears as I prayed for Taylor. It was a really special trip and we had a great time. The one bummer - Taylor got the stomach flu one evening and was under the weather the next day, but thankfully the illness passed quickly.

Tonight is an amazing night - last year about this time David and I left the house for the hospital. Taylor joined our family the next day. That's right - tomorrow is her first birthday. I can hardly believe how much has happened in the last year and how incomplete our family would feel without her. I'm mostly joyous to celebrate her special day, but it brings a touch of bittersweetness as it's another milestone that brings with it expectations and comparisons. Taylor will not be able to eat birthday cake (as our other kids did, because she can't eat solids yet), but we're hoping she enjoys playing in the icing. While delayed in certain areas from other kids her age, she certainly excels at the amount of joy she has brought her family in the last year. We love her dearly and pray that her next year brings lots of fun, laughter and enjoyment.

Making Progress.....Taylor's a Husky!

Hello...and sorry for more delays on blog postings. We went to Missouri over the week-end to see my family (and had a wonderful trip) and I'm just now catching up. A bit of back-tracking first.....

Last week before we left I had a potentially tough appointment with Taylor. Susan (our OT) wants Taylor to practice standing more so her hip joints can "set" and she builds the right muscles in her lower extremities. Taylor can actually stand holding onto something fairly well, but has to be totally supported because she still can't catch herself if she falls, or lower herself safely to the ground. To ensure that she learns to stand properly (mainly preventing Taylor from favoring her right side, as is her nature), Susan wants her to have orthotics/braces to wear while she practices. I took Taylor to Cascade Orthotics in Issaquah (Seattle suburb) to get her prepped. I really dreaded it because they had to cast both of her legs - it literally looked like she had broken little legs. I didn't know how long she would have to wear the casts, but they set within 5 minutes and then they were cut off (don't get me started on the razor blade used to cut the cast off her tiny little leg). The good news - I sang to Taylor (and the poor tech) and she whined, but never seemed miserable. It was much easier than I expected and she should have her fancy, new, pink orthotics within a few weeks. They basically look like plastic shoe soles (David had a pair similar during his running days), but they extend up the back of her legs to ensure proper alignment. Hopefully this will be like the headgear I wore for my braces in middle school at night only - and no one will see her in them:) They actually are much less offensive than I had thought they would be - irrationally, I was envisioning the metal braces Forrest Gump wore as a youngster. Of course, they've come a long way. So, one more thing down.

We've also made a lot of progress on the therapy front. We had a great conversation with Susan before we left and finalized a schedule for Taylor in the fall. She will see Susan on Tuesday, Thursday, Friday, and most Saturdays for an hour at a time. This seems much more manageable than our current schedule. We all agree an hour is about as much time as Taylor can tolerate. We're looking for ways to help Taylor enjoy, or at least tolerate, her therapy. We hit the jackpot in Missouri. My parents have a big-screen TV that sits on the floor and we played a Baby Einstein DVD while she did her work-outs. It seemed to distract her and help a lot. We'll try to duplicate it with a portable DVD player at her eye-level to help her. Ipods for babies...so to speak.

Today also led to a big decision for us. I had encouraged Sarah (our PT from Boyer Clinic) and Susan to discuss the treatment plan for Taylor and had heard from Susan that the conversation had not gone well. I had expected this because Susan has a high bar and believes we should have a NDT-trained therapist from Boyer. For some reason, Boyer won't switch us to a NDT-trained therapist, which could really help Taylor. We were already very interested in the UW program (which would require switching from Boyer) and after my conversation with Sarah today and our Family Resource Coordinator from Boyer, Kelvie, we formally set the wheels in motion to make the switch. Sarah explained that she wouldn't talk to Susan because their conversation had gone so poorly. She would share notes, but she wouldn't speak to her or collaborate on Taylor's therapy. Seriously? I told her this was a big concern for us and we wanted a team that could work for Taylor to ensure we had a complementary treatment approach. She then offered to have her supervisor, who has never met Taylor, speak with Susan instead. I told her that wouldn't be helpful because we want people that know Taylor well to collaborate. It was a very bizarre conversation. Next, I spoke with Kelvie and shared my concerns: 1) we didn't have a NDT-trained therapist and they weren't offering to provide one, even though they have a full staff of them 2) multiple doctors and therapists have confirmed that Taylor has tone/spasticity and needs treatment to reduce it, and Boyer isn't treating her for it 3) the frequency of treatment (once a week for PT and twice a month for vision therapy) isn't enough for our daughter and 4) we need a team that can communicate and collaborate well. I told her that we had been looking at UW and Susan had good experience collaborating with them in the past and their preschool/therapy program starts at 12 months instead of 18 months. Kelvie agreed that was probably the right move for us. It was disappointing because I didn't get the sense that Boyer cared about Taylor (call me Pollyanna, but how can you NOT care about a baby??) - very much a program and not individualized. Anyway, we confirmed our spot at UW and Taylor will start her new preschool program on September 15th. She will go to "school" on Monday and Wednesday from 9-10:30am. One of us (or Julie) will always be with her, but we're thrilled to get her program started soon. David and I feel very assured that we've done our homework this time and this is a great move for Taylor. And, how many kids can say they were a Husky from 12 months??

So much going on.....we met with one of David's high school friends this morning, who happens to be a pediatrician at the same clinic as the guy we keep hearing about, Dr. Spector. She gave us good advice and was very open - in a nutshell, like a lot of people in this world - great skills, not-so-great communication style, but we're learning that we'll take the great skills and learn to deal with the communication deficiencies. Dr. Spector left us a voicemail this evening (I know, Mom, we should answer our phone) and I'm looking forward to connecting with him. I don't know if we'll switch pediatricians, but we'd love to meet with him for a consultation.

Phew....enough doctor speak. We're feeling better that we have a plan that is great for Taylor and manageable for our family. And, I haven't even covered our great trip with my family. We had a brilliant time, saw lots of family members, and had lots of great play time. A lot of my family hadn't seen Taylor since Christmas and so much has happened since then. It was great to share Taylor with them. I'll share more on our trip on my next blog (it will be soon!), but I'm ready to catch up on the Olympics now......

An exciting meeting

Today was amazing for one reason – we met a family in-person whose daughter has the same condition as Taylor. We went back to visit the UW program and watch a “tweeners” class (12-18 months) in progress. During our first visit, only the toddlers class (18-36 months) was in session. I started chatting with a mom behind the viewing glass (each classroom has a very large window where you can watch the class, but the kids can’t see you) and the program director comes in and says “oh, I’m so glad you met.” It turns out she had designed for us to be there at the same time. While we were chatting, I had noticed her daughter Nora, a cute 2.5 year-old running around the room and having fun. I couldn’t believe it when I learned she was missing her corpus callosum too. No kidding – David and I felt like we were meeting the most important rock star. It was so exciting to meet another family dealing with our specific issue and more importantly, to see this little girl so full of life and capability.

As it turns out, Nora also has other issues, so the corpus callosum is the least of their concerns. Nora started sitting, crawling, walking all within 3 months between 15-18 months. She really thrived in the UW program. We’ve always hoped that once Taylor develops new pathways in her brain we’ll see a similar spurt of growth. It gives us great comfort and hope to watch this little gal in action. Of course, every kid is different, blah, blah, but to meet a kindred spirit was amazing. Nora’s mom was very nice, answered a million questions and gave us her contact information.

I also met lots of nice mom’s in the tweener class and it’s so inspiring to see these kids with different challenges, and how heroically the families are managing. I feel so silly for being reluctant to join the special needs community – our experience so far has proven that we’re lucky and blessed to meet such wonderful people.

We're tired today from another great week-end at Whidbey Island. David's mom's side of the family had a reunion over the week-end and it was really cool to see so many cousins together. David's Grandmother Helen certainly has a fine bunch of great grandbabies. This is a pic of the crew.

Progress and decisions

This week has been a really busy week for Taylor (and us:). She's had daily therapy with Susan for 1.5- 2 hours and we're really seeing a lot of "tone reduction" - or simply, her tight muscles are loosening. I've also spent a lot of time researching various doctors, therapists, therapy techniques and programs - all in our quest to help Taylor. Here are a few interesting things that I've learned:

• There is disagreement amongst Boyer Clinic and Susan on the level of tone, or muscle tightness, that Taylor has. I took my strongest stand yet on Tuesday, when the Boyer physical therapist came to the house for Taylor's treatment and I had a frank conversation with her regarding my concerns. Because Susan is working so hard on helping Taylor loosen up and the Boyer therapy would essentially tighten her muscles again (we're trying to avoid uncomfortable functional skills like tummy time, etc. until Taylor's spasticity is largely gone), I told her that we could not do therapy with Taylor until she spoke with Susan and they agreed on an approach. It's bizarre to me, but Boyer doesn't think she has spasticity issues - I'm certainly no expert, but when she can't straighten her arms on her own, something is not right. We think we're making progress with Susan so we've encouraged Boyer to work with her on a complementary treatment program before we move forward.
• We also toured another educational program today at UW and we really liked it. Similar to Boyer, they offer various therapists (physical, occupational, speech, etc) and a preschool setting. Because we plan to supplement therapy with private therapists (like Susan), our primary concern is the preschool setting. The primary difference is that the UW program mixes "normal" kids and "developmentally delayed" kids - 60/40 split. We love this because Taylor would have an integrated environment (making the switch to a typical preschool or school someday easier; providing models of typical development; while ensuring that normal developmental milestones aren't lost - essentially pushing her to catch up). At Boyer, all of the kids are developmentally delayed and the preschool doesn't start until she's 18 months. At UW, she could start in September - 2 times a week for 90 minute sessions. During the class, the various therapists cycle through and the teachers are trained in special education. We really enjoyed our tour today and think the program shows lots of promise. We're going to think about it over the week-end because it would require a switch from Boyer, but so far, we like what we see and the program is highly regarded.

Our schedules are crazy right now - here is Taylor's day today:

• 8-9:30 - occupational therapy
• 9:45 - tour of UW program
• 11:00 - hip xray for possible orthotic casting (more on this later)
• 1:45 - vision therapy

The poor kid is wiped out. We're realizing that we need to get to a more sane schedule for all of us, but we're definitely feeling better about the level of aggressiveness that we're pursuing to help her. More to come later - I'm off to water ballet dress rehearsal - Lauren has a big performance tomorrow night!

Taylor and the red horse

Today was another busy day for Taylor. We had occupational therapy with Susan for about 1.5 hours and while I'm always glad that we're helping Taylor, it's exhausting for her and it's sad to watch because she really doesn't enjoy it. Susan tells me she will learn to enjoy it over time and it will feel really good to have her muscles relax (hunch your shoulders up to your ears and hold them there - that is essentially Taylor's common state - not very comfortable). But, while her brain is developing new pathways, the position is uncomfortable because it is new and scary. She compares it to a non-skier standing on top of a mountain, on skies, and knowing you don't have the skills to safely get down the mountain. We have to help Taylor relax so she can learn how to get down the mountain, so to speak.

I'm also spending a lot of time on the phone lately asking questions, seeking referrals, and learning a lot. When we were first connected with the Boyer Clinic we had heard how great they were and were thrilled to get help for Taylor. We didn't ask many questions because we didn't know the questions to ask. We're really learning how important it is to be educated and aggressive in demanding the best care. After Susan was so concerned with Taylor's muscle tightness (also known as "high tone" or "spasticity"), I pressed the Boyer Clinic for their opinion and researched the credentials of our physical therapist. We really like her and she is great with Taylor, but we've realized we have no idea what to look for in a therapist. As it turns out, ideally any therapists she works with should have speciality NDT (neuro-development training) certification to ensure they understand the intricacies of her brain's involvement with her developmental delays. And, unfortunately our therapist, great as she is, doesn't have NDT training. I spoke with our Family Resources Coordinator about my concerns (our therapist is great, but maybe not the best for Taylor's specific condition) and she has checked into to. Today she shared that they only have NDT therapists for children with spasticity or cerebral palsy - the exact condition we're working to prevent with Susan. When I expressed my concern (1. that they're not aware this is our most pressing challenge and 2. we aren't receiving therapists trained to deal with it), they agreed and promised to get back with me. Sigh......I hesitate to share this because I do think the Boyer Clinic is great and trust that we will have a good experience, but to illustrate how critical it is to be educated and press for the best. Taylor deserves it.

Today, Taylor had a big milestone for us. When I started writing this blog a few months ago, Taylor wasn't even interested in looking at most of her toys. A month ago, I was excited because I saw her bat at a toy (a red horse that rocks if she hits it) and today, she made the horse fly like crazy. Her motor skills have improved so much - she is interested in the toy, she makes contact repeatedly and enjoys playing with the toy. These are the gifts that make me realize we are making progress. Lauren was watching her and hearing me praise Taylor and she said, "Mama, Taylor is really smart isn't she?" Of course I agreed, and then she said "Her brain works really good, doesn't it?" Despite our efforts to protect Lauren and Jacob, Lauren is one smart, intuitive cookie. They continue to love her so much and it's such a gift.

On a sadder note, Hammy, our second fish, passed on following our vacation. For those keeping score - we're now 0 and 2. This time Lauren and Jacob realized Hammy died and they weren't overly distressed, although Lauren wondered why her fish died and Jacob's didn't. I didn't tell her that we're actually on to Fishtank II (Jacob's fish). We simply stink at having pets.

Where have we been?

Hi there - I've fallen off the blog wagon, but I'm now returning.....we went to Sunriver, Oregon for a week for the Gurry family reunion (about 50 family members from CA, WA and Canada) and had a great time. I had the slowest dial-up connection found since 1995, so didn't try to do any updates from there. In a nutshell, we had a great time - we shared a house with David's sister, Shannon, and her family (Rory, 7, Griffin, 5 and Graham 3) and combined with our crazy crew - we were quite the nut house, but a great time was had by all. Lots of swimming, bike riding, playing and quality family time. Taylor was relieved that the weather wasn't as hot as it normally is (the high temp was typically in the mid-80's) and as usual, she was an easygoing little gal. She didn't protest being passed around various family members and while she still didn't like the pool, she seemed to enjoy riding in the bike buggy (in her carseat) and watching the kids play. This is a picture of Taylor in her new wetsuit, with our nanny Julie - unfortunately the wetsuit didn't make her like the pool water any more, but she sure looked cute. And, a smiley picture from Sunriver.

The other reason I haven't written is because I haven't known what to say. We've had a roller coaster of emotions with Taylor over the last weeks and I'm finally getting my head on straight again. Inspiration has come in the form of Randy Pausch, the professor and author of "The Last Lecture" - his words finally brought me out of my funk. If you're not familiar with his story, he had a brutal case of pancreatic cancer and just passed away on July 25th. He wrote a great book about life lessons, but here is my favorite quote from him "We cannot change the cards we are dealt, just how we play the hand." David and I have decided to "play our hand" with Taylor as aggressively as possible and it's kept our heads spinning for a few weeks. Finally, after a few sad days, we were watching a retrospective of Randy's life on Dateline (or some similar program) and his wife was being interviewed about how she handled Randy's diagnosis of terminal cancer. She shared that her therapist gave her a great mantra to repeat anytime she started to get down in the dumps - "not helpful". Another simplistic thought that really resonated with us. It's "not helpful" to look too far ahead, overly worry if we're doing the right things, or just be sad for Taylor. We are focusing on helping her get better and negative, sad or worrisome thoughts are simply "not helpful." So, we're trying and doing much better. His wife also said that she was trying to "not worry so much about tomorrow, that she missed the joys of today" - I thought that was beautiful and so true. While thankfully our case isn't terminal, it has it's own unique challenges, and the Pausch family provided great words of wisdom and comfort.

Where to begin on the latest updates? Shortly before we left for Sunriver, our brother-in-law's sister, Kim, gave us a great referral to a past client/neighbor that is also an occupational therapist. As it turns out, she has over 20 years of experience with speciality training in neurodevelopment therapy. She's written several books and appears to be highly regarded. She met with us for a few days before we left for Sunriver and it was very eye-opening. She does a much more aggressive form of therapy than anything we had seen and it rocked our world a bit.

We thought we had been doing the right things - following our pediatrician, neurodevelopment doctor, and other's guidance - working with the Boyer clinic once a week for physical therapy and twice a month for vision therapy. Our new therapist, Susan, was shocked that we weren't doing more therapy and was concerned that Taylor had tight "tone" in her arms and hands and to a lesser degree, her legs. "Tight tone" simply means that her muscles are tightening as a response to lack of use (similar to a paralysis or stroke victim). Since Taylor has reached an age where she should be using her muscles more (crawling, standing, etc) and can't, her muscles have started to tighten. If untreated, this can make it much more difficult for her to learn basic skills, lead to arthritis, or even cerebral palsy. Essentially, Taylor's most comfortable position is curled up (clenched hands, bent arms, tight shoulders) so no wonder reaching for a toy or straightening her arms for tummy time wasn't working. Susan has explained that we have to first loosen her muscles and help her normal state become more relaxed before we'll make progress with more complex skills.

Because she was worried about the state of Taylor's tone, she encouraged us to embark on an aggressive therapy approach for the next month to break down her tone, loosen her muscles, and prevent more serious side-effects, while also setting the foundation for her to learn more advanced skills. We successfully applied for more extensive insurance coverage (already Microsoft covered a generous 1 hour/day of therapy - now we are approved for 3 hours/day - if you're doing the math, that's roughly $17,000 of therapy a month that is fully covered - God bless Microsoft) and are receiving treatment from Susan and our other therapists for 2-3 hours each day. This new schedule is tiring for Taylor, time-consuming for our family (David or I like to be with Taylor since the therapy is hard on her), and a bit of a leap of faith. We're now wondering if our existing team is the right team (how can Susan be so alarmed and no one else is?, or is Susan overly dramatic?), but while we try to figure it out, we're going to work really hard with Taylor to make progress.

We're still seeing the Boyer Clinic and haven't made any changes, but are well-reminded how much we have to learn. We are starting to network like crazy to learn more from others in similar situations and make sure we have the best team and have begrudgingly dove into the world of "special needs." In hindsight, it was probably a mistake that we didn't do this earlier - we had heard that you must be your own advocate, but like a lot of families, we're learning how true this is.

We'll keep you posted on our progress - in the meantime, we've already started to see progress with Taylor - her hands are much more loose (less clinched), she's tolerating her stretching exercises much more and is starting to move (sleeping on her side, kicking her feet, etc). This is encouragement that we're heading in the right direction - in the meantime, we're trying to keep all "not helpful" thoughts to the side and plow ahead in the aggressive manner that we've typically approached life.