Physical Therapy Assessment

Yesterday was......sad. I'll try to be honest about our journey and while I'm typically the eternal optimist, every now and then we have a day where reality kinda hits us. Taylor's physical therapist Sarah came over yesterday morning and did the physical therapy assessment on her. Unfortunately Taylor was tired for her appointment and literally about fell asleep on the floor toward the end of the appointment. This is another reason we need to conquer sleep for her - her schedule is too unpredicatable right now and we need her fresh for her work-outs.

Anyway, Taylor did not score well. While this shouldn't have been a surprise, it's still shocking to me to see that she scored a 1 out of a scale of 10 for motor skills (with a 10 score being your average nine month old). This was another way of marking her at the 3 month old developmental age for motor skills (similar to our first assessment), but for some reason it sounded worse to me. I already blew my goal of not crying in front of the physical therapist on the first meeting. Sarah had a UW intern with her and I'm sure she thought I was a basket case. Oh well....I'll keep trying.

Sarah ran her through many tests and her lack of arm strength again brought her score down. We're going to work with Taylor on holding onto a toy with both hands at the same time, playing with her feet (her hands haven't met them yet), and rolling over to start. Yesterday was the assessment vs. a physical therapy session, which will start next Tuesday. We'll both learn the exercises so we can help her every day.

Next week will be busy with her first PT session, endocrinology and opthamology appointments, and her family plan meeting with the Boyer Clinic. This meeting will be with multiple specialists from the Boyer Clinic and is designed to make sure we have agreed goals for Taylor's development. We're not really sure how we can help with this - if it were up to us, Taylor would be sitting tomorrow and walking at age 1. But, we're going to need help understanding what is realistic. The sequence of the meetings is determined by the state since the program receives state funding, so we're still trying to figure out how we get things moving by doing everything they suggest.

I'm feeling better this morning after our first good night's sleep in weeks. We letTaylor cry last night when she woke up at 9:30pm and she met Lauren's household record for longest cry. At least we know she is determined and has stamina. It was hard, but we know that she really needs to get back on track. She made a peep at 4am, but put herself back to sleep and then slept until 6:45am. Hallelujah! And then, I think Jake woke her up when he dropped a pile of pennies down our hardwood stairs. We're so proud of her and hope we've turned a corner on sleeping.

As I listened to her cry last night, I organized a backlog of photos into photo albums and was reminded of how many wonderful memories we've had as a family. We're looking forward to many wonderful times ahead.

Little Stinker

Well, we know this.....Taylor is smart enough to play her parents like a fiddle. I took her to the doctor yesterday, certain that she had an ear infection, and guess what? She's totally healthy. Little stinker....she rubbed her ear so much that we were sure she had an ear infection, but she must have realized that we'd cave on sleep training. So, now we're back at it and more resolved than ever after another few bad nights of sleep. She is so much like Lauren in the sleep department - Lauren went backwards in the same way. Just when you think you're in the clear, they decide they'd rather be held than sleep and then they're fighting sleep, taking short naps, and waking up a zillion times in the middle of the night....ahh. Tonight David put her in her crib wide awake and she went to sleep without a peep - hooray!! - here's to a decent night ahead.

We also made a lot of progress today on the therapy front. I spoke with Kelvie from the Boyer Clinic and she will be our official Family Resource Coordinator - essentially the person that makes sure that we have all of the tools/therapists/resources we need. Our new physical therapist, Sarah, is coming to the house tomorrow am to do the physical therapy assessment with Taylor. We found out so late today that I didn't have time to get her a cute new work-out outfit...oh well. We're thrilled to get the ball rolling. We now have a weekly appointment with Sarah for Tuesday morning physical therapy at our house. We can't wait to feel like we're really helping Taylor and see some progress. I can't wait for Taylor to sit on her own - right now she either has to be propped in a swing/exersaucer, or laying on her back and the world just seems so much more fun if you're upright.

We have a lot to look forward to in the coming weeks. My mom and little sister are coming to visit on Tuesday and I can't wait to see them. And, David's sister, Shannon and family, are returning to Seattle after a year in Hawaii next week-end. It will be so fun to have these special people back in our everyday lives.

Today, Katy, our last nanny who helped care for Taylor in the first few months of her life, came by to visit. It had been three months since she'd seen Taylor and it was great validation hearing how much she'd thought Taylor had grown and developed since then. It's easy for the days to blend together and not see much improvement, so this was great to hear. Taylor does have a new trick - last week we were thrilled that she was bringing her hands together and putting them in her mouth. Today, she definitely found her thumb and is enjoying checking it out. It would be dreamy if her new trick could comfort her in the middle night instead of me getting up:)

Memorial Day Week-end

This week-end was a full week-end of fun and play for the big kids, and a little traumatic for Taylor due to sleep-training. We went to Lauren's graduation from one of her preschools, went to our godson Max's 3rd birthday party, saw several good friends, and went to a performance of "High School Musical" at the Paramount Theater. Jake and Taylor left the play about halfway through with David, but Lauren was enthralled. Jake enjoyed it too, but unfortunately woke up at 5:15am that day and was worn out. All in all, quite busy but lots of fun. We had one really sunny day and squeezed in a trip to the pool before heading over to our friend's house and enjoying their incredible backyard. Our dear friends the Hughes' came over tonight and the kids (and grown-ups!) had a great time. We also had to get Lauren a haircut this week-end - after her first attempt at cutting her hair. Not too terrible, but she definitely lost a few inches as we attempted to even everything up.

We didn't do so well on the sleep training. We gave it a solid shot, but we think Taylor has another ear infection. She's been rubbing at her right ear the past two days, so back to the doctor we go tomorrow. It seems cruel to sleep-train if she's sick, so she had another reprieve. We did let her cry a little bit - one time I went up to check on her and her ear was bloody. It totally freaked me out because I was afraid her eardrum had burst. After looking more closely, she had somehow managed to scratch herself hard enough right in her ear and drew blood. She's a fighter that little one.....needless to say, that was the end of sleep training for now.

During all of our activities, Taylor goes along for the ride and is an incredibly good sport. Sometimes I worry that she is too mellow, but most parents wouldn't complain. As David says, we're overly aware of everything right now. She really loves to watch the kids play and just beams when they play with her. She is quick to smile and laugh at them and it's just precious.

I always love Memorial Day week-end because it's a special week-end of traditions with my family in Missouri and Arkansas. I would have loved to be with them this year, but hope we can join next year. We're overdue for a trip south and I'm anxious to head that way. We had planned to go in June, but we're re-evaluating until after Taylor's next round of dr. appointments. My mom and little sister are coming out in a week and we're really looking forward to seeing them.

I don't have any deep thoughts to share today - just happy to have enjoyed a good week-end with my family and hoping for good news on Taylor's ears tomorrow.

Happy Nine Months

Today, Taylor is 9 months old. And to celebrate, I think her hair is finally starting to grow. All of our kids have been late bloomers in the hair department, but Taylor officially has hair now - not much, but enough to count. You can see it best if the light hits it just so. I think it will be strawberry blond like Lauren's, but straight like Jake's. David is still holding out for brown hair like him, but I think he's stuck with another blond hair, blue-eyed kid. I'm looking forward to no longer hearing "how old is he?", no matter how much pink she wears. Hair is an important characteristic for little gals.

We are so blessed and fortunate to have had these 9 months with Taylor. When I think how far she's come from being a little 5 pounder at birth to the smiling, laughing beautiful baby she is today, I am so thankful. A few special memories for you - Taylor is affectionately called "The Bomber" or "T-bomber" because of her explosive poops her first few months of life. I'll never forget Dr. Dudas at her 2 month appointment, just about to take off her diaper, and she let it rip. He jumped back - certain that he had been torpedoed. Thankfully it was just a close call. She's also called "T" or "Tay Tay", so it's no wonder she doesn't seem to recognize her name (one of the questions on her development assessment). She loves to laugh and will giggle easily if you tickle her back or neck, smile big, or make noises at her (her favorites are a kiss noise and horse noise). She also loves listening to singing, looking out the window, and watching Lauren and Jake play. She has always been a very mellow baby and a good sport - as most third babies need to be. Our family would certainly feel incomplete without her and we're so thankful that she doesn't have a condition that will threaten her health or require painful treatment.

Tonight was Jake's graduation from his preschool - a very special place that we've been at the past 4 years, between he and Lauren. His teachers are so special and when I picked Jake up from school this afternoon for the last time, I became teary-eyed. His class was doing circle time - singing their favorite songs - and as I watched my little buddy sing and dance with his friends - I was so proud. These moments are also bittersweet because I so hope Taylor can experience these moments in a few years. As I thought about it though - the emotions I was feeling for Jake - pride and love - I will feel for Taylor many times over. The experience may be different or the same, but I'm certain I will love her and be just as proud. I composed myself and drove home, but decided I would let myself get sad for a few moments when I could steal away. Then, as Jake was "helping" me bring in the groceries, he dropped a 2 gallon jug of milk and it exploded in our entryway. As I've said before, thank goodness for young kids, because by the time I had cleaned up the mess, the sad moment had passed. So today....here's to spilled milk and special birthdays......

Life as Normal

After the initial surprise of Taylor's diagnosis and the flurry of activity arranging her doctor appointments, we've settled back into our normal routine. Taylor is feeling better and has finally conquered her ear infection. I took her into the doctor this morning to confirm that she is all clear. We're thrilled that she feels better and can have a break from antibiotics (and really yucky diapers).

Our first big parenting dilemma since her diagnosis revolves around sleep. Since her ear infection lasted about three weeks, Taylor has fallen off the wagon in a big way regarding her sleep habits. Before, she was doing really well - she would fall asleep on her own and typically sleep through the night (with maybe a binky plug once or twice). With her discomfort from her ear infection and our increased sensitivity, she has been held A LOT the last few weeks and now we're in a sleep-deprived mess. She's ended up in our bed the last few nights after I was getting up with her 8-10 times a night. She also is fighting falling asleep for her naps and her schedule is all messed up. Oh my.....so, this week-end she will be "re" sleep trained. Helping children learn to sleep is always hard, because it typically involves crying, and my heart wants only to cuddle her. My head, however, knows from experience that it only gets harder as the months go by and she (and the rest of us!) really needs to sleep. So, fun times ahead for the week-end:) It's also step one in treating Taylor like a "normal" kid. She isn't sick, so we want to treat her like we would the other two as much as possible. We're confidant we can all get back on track quickly.

It's amazing how we've returned to our normal routine. We still have moments of melancholy, but for the most part - it's life as normal. We've tried to put everything in the back of our heads until the next round of doctor appointments and we receive our therapy plan. I spent a lot of time the past few days gathering medical records from every doctor/hospital she's ever seen to share with the various specialists - quite the process of approval forms, stressing our urgency to receive copies quickly, etc. Otherwise, we're just playing with and cuddling Taylor as usual.

Taylor's cool new trick that David loves is the "High 5". She hits your hand if you hold it up for her. She also really loves hand-movement songs - like "Itsy Bitsy Spider", or my own unique "Twinkle Twinkle" hand movements. Now if only we can re-conquer sleeping we'll be in business.....

Sunshiney Day

Today was a beautiful day in Seattle. Summer finally arrived yesterday (for now) and we've enjoyed temperatures in the 80's. Everyone is so tired of gray and rain that summer is really celebrated when it appears. Yesterday, it was in the low 70's and Lauren and Jake played with water balloons and ran in the sprinkler.....brrrr.....but they had a blast. Today, Jake and I had our special time - soccer class and a playdate at the park with his buddies. After Lauren's school, a few of her friends came over and we had a delightful afternoon of more water balloons, sprinkler fun, and popsicles. Our sidewalk is colored with sidewalk chalk, we have a load of wet towels and swimsuits, and I couldn't be happier. There is truly nothing more joyous than the sounds of children laughing, shrieking and having fun.

Taylor has also had several good days. David dressed her in overall shorts today and she looked quite cute. She's enjoying walks in the stroller and feeling the warm breeze on her toes - although she wasn't fond of grass on her feet when David helped her "walk" in the grass this morning. We're continuing to see good signs of improvement from Taylor daily - it's such a gift and gives us tremendous peace of mind. This week she has started holding on to her bottle (she can't hold it entirely by herself, but she has the right idea), and just in the last day, can bring her hands together. She couldn't even do this for the Boyer Clinic evaluation, so we're thrilled with such good progress on her motor skills. She is loving putting both hands in her mouth and clasping them together. This is another little thing that I don't know if I even realized when Lauren and Jake did this - but with Taylor, we get to celebrate every little step because we know to appreciate them.

Tonight as I write this, Lauren is singing in her bed - alternating between a made-up song "Kindergarten here I come" - seriously - and a variety of "High School Musical" songs. And, Jake was so wiped out tonight that he asked to go to bed at 7:30 - wonders never cease. It's a gift that my kids are so happy and I'll leave you with my favorite new Taylor trick. After months of relative indifference to her many toys, she clearly has a favorite game now. We've noticed that she loves hearing songs - even though we aren't the best musicians. Her favorite game is to hold a small rattle and when I sing the Wiggles classic "Shakey Shakey", she shakes the rattle. She laughs and smiles and it is precious. And, it works everytime, which I love. Here's to summer!

Boyer Clinic Evaluation

Today was a mixed bag. We met with the Boyer Clinic (http://www.boyercc.org/) and were really impressed and once again, thankful, for the high-quality resource in our backyard. The only downer was knowing that Taylor needs their help - you never want to have your child positively assigned as "developmentally delayed." That aside, we thought it was a good step forward.

The Boyer Clinic rep, Kelvie, came to the house and assessed Taylor using the DAYC (Development Assessment of Young Children) test. She tested across five dimensions (cognitive, communication, social/emotional, physical development, and self-help). Each area consisted of about 20 "Can she..." questions that we answered as honestly as we could - such as "Can she recognize her name?" or "Can she sit with support?" We thought it would be more of an observation of Taylor, but David and I answered the questions - which was lucky, because although she felt better today, Taylor fell asleep about halfway through the appointment and snored loudly for the remainder. As we keep reminding ourselves, she is not the slightest bit phased by all of this. Once it was determined that she was a good candidate for the Boyer Clinic (i.e. needed help), our next step will be meeting with specialists (such as a physical therapist) that will do a more specific evaluation.

For the various areas, Taylor is roughly 4-5 months of age - developmentally. David expected this more than I did - while we knew she was behind, it's still a bit of a shock to see it on paper. For the various areas, here is her first grade card:

• cognitive - 4 months
• communication - 4 months
• social/emotional - 5 months
• physical development - 3 months
• self help/adaptive - 6 months

A bit overwhelming....but there were some positive nuggets:

• We were really impressed with the range of services the Boyer Clinic offers and the rep knew of 3 other children with Septo-Optic Dysplasia that the Boyer Clinic currently serves. This was so huge for us - Taylor's condition had seemed like this ominous, scary, strange thing and to know others in our city have this condition was strangely comforting. We're thankful that they have experience with this condition and she said a few of them were doing really well.
• One of the effects of Septo-Optic Dysplasia is low muscle tone, and Taylor's upper body is weak (i.e. pushing up on her arms while on her tummy, reaching for toys, etc). This brought her score down in a number of areas. For example, she couldn't do some tasks (reaching up to be picked up out of her crib - social/emotional; feeding herself food - self-help/adaptive; and many of the physical development items) because she doesn't have good use of her arms yet. As therapy helps her with this, we should see big improvements in many of the areas.
• Her vision is another unknown now that could be bringing down her scores in the cognitive/communication areas - because she had a known eye condition her first several months of life, impaired vision may have impacted her development.
• In any case, the Boyer Clinic has a range of services that we will take advantage of to help Taylor.

Our next step is to have our case reviewed (yet again) and have a special therapy plan recommended. We will have a family resource coordinator assigned (a new "umbrella" for multiple specialists). Taylor will likely receive physical therapy 2 times a week at our home, for about 30-60 minutes - depending on how much she can tolerate at her young age. We will learn the exercises to help her too. David and I are already envisioning her "training log" to ensure she gets in all of her "work-outs". She will also likely receive a special vision education specialist that will help her catch up in the areas that she is lagging that are likely associated with vision. This will augment our opthamologist, Dr. Cadera. And, the neurodevelopment division at Children's Hospital has a neurologist that spends one day a week at the Boyer Clinic and this will likely become our primary neurologist. We hope to know more specifics within the next 2 weeks.

Taylor will be able to take advantage of these services until she is 4 years old, or "graduates" from the program - which means, she catches up to her peers. She will likely have home therapy until she is old enough to take advantage of their facilities (located in the Montlake neighborhood near UW). They also have special pre-school classes that begin at 18 months. Over time, speech therapy or other services may be added to her program if needed. They also gave us good advice regarding support networks and resource centers (i.e. "how to talk to Taylor's siblings about her special needs") that we plan to look into.

Our Microsoft insurance covers any out-of-pocket costs and the program is largely subsidized by the state and private funding, such as the United Way. We are so thankful we have excellent resources to help Taylor, and will likely become big fans of the United Way.

All in all - a lot to digest, but we're thrilled this step is underway. We appreciate all of the thoughts and prayers - we continue to be so thankful for all of you.

Illness and Throwing Out the Rule Books

It's amazing to think that we received our bad news about Taylor just one week ago - what a long, strange trip it has already been.

I had to take Taylor into Dr. Dudas Monday morning - she has had a lingering ear/eye infection for the last few weeks. She's now on her third round of antibiotics and we really hope it kicks this very diligent infection. She hasn't been chipper and she had a slight fever on Sunday. Because she has her development assessment tomorrow, we wanted antibiotics quickly on Monday morning to give her time to feel better. She began to perk up this afternoon so we're hopeful that she'll feel well enough tomorrow to be accurately assessed. Of course, any ear infection in the Gurry household brings several sleepless nights and David and I are both hoping tonight is an improvement over the last two.


After seeing other mom's at my book club and the past few days at work, I can tell I'm going to have to work really hard at the cardinal parent rule - don't compare your children to other children. With Lauren and Jake this has always been relatively easy - they've been on par with their peers - ahead in a few areas and lagging in others, but always spot on, if not ahead, of development milestones. With Taylor, we're going to have to work harder to hit the milestones that I really took for granted previously (such as reaching for toys, pushing up on her arms during tummy time, and likely many more) . She's reaching an age where others expect her to be sitting and crawling and I get these well-meaning questions all of the time. My stock answer has become "no, not sitting yet, she's on her own pace". Accurate, but not too much information. It's also hard to not obsess anytime I see other babies around her age - I want to ask how old they are, based on whether they're sitting, playing with toys, etc.

We're working on throwing the rules out the window, along with my "What to Expect The First Year" book. Every milestone and new trick for her is a gift and over time, we will really, truly savor every moment of her growth and development.

Returning to work has been quite anti-climatic - I'm off to a slow start which is very nice and I've received a ton of support from the very few friends/colleagues that know our situation. I will only go into the office 2 days a week and those days will likely revolve around Taylor's many appointments. I am SO thankful for Microsoft - I'm a poster child for a happy employee right now.

Mother's Day

Today is Mother's Day and I am feeling very blessed. I had a nice conversation with my Grandma this morning and she shared her secret to walking with grace - Philippians 4. This is a really good chapter - here are a few of my favorite verses:

• "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." - verses 6-7
• "I can do everything through him who gives me strength." - verse 13 - this was an old favorite from my running days, but takes on much more significance now

For Mother's Day, the kids have given me hand-painted flowerpots, flowers, pictures, a bead necklace, and lots of hugs. Together with David, they created a canvas with all three of their handprints and footprints on it - very sweet. Julie "helped" Taylor make a very cute footprint picture with the caption "Thank you for helping me grow into the perfect me." I thought this was so perfect - Taylor will be the perfect Taylor.

I am so thankful for my kids, my mom and grandma's, and David's mom and grandma's. We are so, so blessed and David and I really feel surrounded by love.

Yesterday we were both feeling a little blue. I went for my first run since our half-marathon last week-end (amazing how sore we both were). I was very anxious to run since typically it is therapeutic for me, but found this time it gave me too much time to think. David's family came over for dinner and the business of preparing dinner and love we felt helped lift us out of our funk.

David and I had a nice chat late last night and agreed that we're doing the best we can. As parents, you often wonder/fear how you will handle it if anything happens to your kids - as we've learned, you just handle it. There is no choice - you put one foot in front of the other, love your kids, and do whatever you can for them. So basic, but so true. Of course, we wouldn't have chosen this road for Taylor, but we're going to embrace it with her and fight for every milestone. When you ask us how Taylor is doing, we will typically tell you that she is fine. Because, no matter what, she is more than fine - she is wonderfully precious.

Happy Mother's Day to all of the moms.....

Food for Thought

There isn't much to report today - we won't have any real news until Wednesday. I did have some interesting experiences today. At Jake's soccer class the mom's were talking about pre-natal tests, false positives, and whether it was good to know if there were issues while pregnant. This is a common discussion since many families have experienced false positives for issues on ultrasounds and other tests. The conversation hit home today and I was very proud/relieved that I could listen to the conversation without getting emotional. We haven't told most people about Taylor's challenge yet - we're waiting until we know more information. So, I listened quietly but couldn't help think about our situation.

Taylor was extensively tested while I was pregnant. Her 10 week ultrasound showed excess nucleal fluid at the base of her neck - which can indicate problems, or nothing at all. The radiologist told us, without a doubt, that there was something seriously wrong with Taylor. We were devastated and I prayed and prayed to trust God and asked Him to guide us. After a CVS test (similar to an amnio), we were assured that her chromosomes were completely normal and we were nearly in the clear. She had the regular 20 week ultrasound and a special cardio ultrasound at 24 weeks to examine her heart (the heart was also at risk from the results of the 10 week ultrasound). We finally got the "all clear" at 24 weeks and were so thankful. When she was born, I was so thrilled that she was perfectly healthy.

In hindsight, one of the tests should have caught that there were abnormalities in her brain. However, I'm not angry that they missed it. I'm actually very relieved and believe God did guide us. With the way it's developed, we were able to enjoy the remainder of our pregnancy and fall in love with our baby girl without worrying about her. And, we've found out about her brain in time for her to take advantage of the crucial early years of development. Other families shouldn't worry though - Taylor's problem is rare, rare, rare.

A highlight today was the Mother's Day lunch at Lauren's school. This is such a special day where Lauren and her classmates sing a few songs, say why they love their Mom (Lauren loves me because I cuddle her), and we share a special lunch together. This year, I hugged Lauren extra tight - so thankful that she has been able to thrive in pre-school and is well prepared for kindergarten. Jake will attend Kid's Place next year and I pray to attend many more Mother's Day lunches for both he and Taylor at the school.

A Game Plan

Finally, we now have a game plan. Today was good - on my first call I was able to schedule Taylor's appt with the neurological development specialists - hooray! She's booked for June 10th. So, our game plan looks like this:

• May 14th - development assessment with The Boyer Clinic (development experts that will assess her across motor, social, communication and other skills). We should get a therapy plan recommendation from them.
• June 4th - opthamologist appointment
• June 4th - endocrinologist appointment
• June 10th - neurological development appointment

For now, I feel like we have the right cards lined up and we'll see what we learn.

Taylor had a good day - she did tummy time for 10 minutes - a record!! She's also grasping toys (her favorite is a lightweight rattle) and reaching for objects that are nearby (if I'm holding her, she'll reach for a string on my sweatshirt hood, etc).

I'm enjoying my special time with her - my maternity/sabbatical/extended leave ends this week and I'll actually go into the office on Monday (typically I'll go in on Tuesday/Wednesday, but this coming week I'll go in on Monday since I'll have to miss Wed. for her Boyer Clinic appt). I'm thankful Microsoft has allowed me to take 8.5 months at home and I'm very thankful that I can return part-time - the schedule will be needed now more than I ever anticipated.

Just as I was feeling blue today, I got online to order a pizza for dinner and coincidentally, the pizza website had a benefit notice for one of their employees that has inoperable brain cancer. Of course, I started reading their blog and it is a young gal, with a young son and family, and it's the saddest story. One of our dear friends also buried his mother today and David was able to attend the funeral. I wanted to be there badly, but couldn't leave Taylor and the kids right now. You really don't have to look far to count your blessings.

Today I am grateful for our relative health and happiness. And I pray for peace for those who are suffering. Another good one from Julie:

John 14:27- "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

The Waiting Game

Today I am thankful for Lauren and Jake - who have provided a welcome distraction from worry. You can only worry so much when there are fire trucks to play with, ponytails to make, stories to read, T-ball games to go to, and fights to referee.

Today was also a frustrating continuation of our efforts to nail a game plan. The neurology appt continues to be elusive. It's a classic example of why people are so fed up with our health care system. After 3 days and at least 15 calls to the neurology dept at Children's - verifying our referral and waiting for them to review her case - late today I was told our case had been referred to neurological development (an adjacent, but separate dept). Dr. Dudas had mentioned this on Monday and the dots just finally got connected at Children's. So I called neurological development and was told that they had received the referall, but would need 48 hours to review the case - seriously. I expressed disappointment that it was going to take a week just to get an appointment on the calendar and the scheduler explained that I wanted my case reviewed or the first appt available is in August! So frustrating....if we don't get an appt scheduled tomorrow I'm calling Dr. Dudas to see if he can help.

On the positive front, we have an endocrinology appt scheduled for June 4th now, which happens to be the same day as our next opthamologist appt. Little Taylor will have a big day. Of course we want every appt tomorrow, but at least these are 2 appts on the books. We keep reminding ourselves that it's a blessing that she isn't an "urgent" case, but patience is not our top virtue. We'll continue to be as vigilant as we need to be to get her the care she deserves (the best!).

Tracy provided good peace of mind after reviewing our case with several of her neurology colleagues. It's a good sign that Taylor's vision and pituitary are functioning well, and that she's hit the developmental milestones that she has. We're sending Tracy our MRI scan to review with her colleagues and looking forward to their opinion. She's also finding specialists for us - so far in San Francisco and Boston - so we'll likely follow up on this too once we have our baseline information collected. Shawna also provided invaluable guidance - to gather reports asap from everyone we meet. We're learning that we will be responsible for ensuring that all of these specialists have the info they need and that we're on top of it.

Today ended with Taylor smiling, laughing and cooing. As I rocked her to sleep she practiced her favorite new trick - grabbing her binky out of her mouth - she thinks that is very cool (and good validation for her coordination!). She watched Lauren twirl in the outfield at her T-ball game tonight and earlier today laughed at Jake as he ran circles around her exer-saucer. Taylor had a very smiley day and I wish you all could see her. These are the gifts that give us hope and make us so grateful for everything we have been blessed with.

Next Steps

Today continued a roller coaster of emotions. I woke up resolved to be positive and made it till 11am without crying (ironically, while I was talking to my mom and telling her how much better I was today:). I continued to bug Children's Hospital to get the neurologist appt scheduled. David and I both desperately want a game plan and an appt on the calendar. As is typical, our referall had reached their office, but the nurses were evaluating our case for "best doctor fit and urgency". We're really hopeful this doesn't mean we'll have to wait for weeks. While so serious for our family, her condition won't require immediate treatment like a tumor, or other brain injury might. Ours will be a long journey of discovery and therapy.

I finally spoke with our pediatrician, Dr. Dudas, this afternoon and appreciated his call. I'm learning that he will be the "umbrella" physician that oversees a plethora of specialists. His early opinion is that Taylor has Septo-Optic Dysplasia. We still need to see the neurologist and now an endocrinologist to confirm. Septo-Optic dysplasia (SOD) is a rare disorder characterized by abnormal development of the optic disk, pituitary deficiencies, and often agenesis (absence) of the septum pellucidum - according to the National Institute of Neurological Disorders. Thankfully, we've had Taylor's eyes extensively checked out and they were normal at her last appt and her optic nerve is normal on her MRI. This is very good news for her future vision. We will see an endocrinologist to run a full work-up on Taylor, but Dr. Dudas had consulted with an endocrinologist at Children's and if there were major issues, we would have seen evidence of them by now (severe jaundice at birth, sickness, etc). So, hopefully any pituitary issues will be minor, if at all, and managed with medication. The great unknown is her physical and mental development - we're praying that she will be one of the "normal" cases with this condition, or have minor symptoms. She has several positive skills already - Taylor can babble, smile and recognize family members, bat at toys, nearly sit alone, and stand holding onto something. She can't roll, crawl, or reach for a toy and pick it up. She is being assessed for developmental delays (physical, social, communication, and others) next week by the Boyer Clinic, a speciality clinic that can assess her condition at this point and recommend therapy options.

I had wonderful conversations with my dear friend Tracy, who has a doctorate in neurology, and little sis Shawna, who does physical therapy with children. Tracy is going to help us locate "the best" doctor for this rare condition and she and Shawna can offer us a wealth of knowledge. We're very fortunate to have such expertise at our fingertips.

We're still in the frightened phase and will be really happy to meet with the neurologist and endocrinologist - we should have those appts. scheduled soon. I had my first "why Taylor" moment today - when Dr. Dudas (who was Chief of Pediatrics at Children's and a pediatrician for the last 15 years), explained he had never seen this condition since it statistically appears in 5 kids out of a million.

David and I are really trying to look ahead and trust that God has a plan and simply, "it is what it is". We know for sure that Taylor is a gift and has a special place in this world. Every smile and day with her is a joy and she will have a blessed life, and she blesses us with her presence every day.

Initial Diagnosis

Initially, Taylor began seeing a pediatric opthamologist when she was 2 months old for a "wandering eye" - a fairly common occurrence in babies that often resolves itself. We saw the doctor monthly and at Taylor's 7 month appt., he said that her eyes were normal now, but he was concerned about her development and recommended a MRI scan on her brain as a precaution. We consulted with our pediatrician and decided to do the MRI (even though she had to be under anesthetic) to rule out tumors/fluid on the brain/or other scary scenarios. We were very concerned about the test, but really believed it would be normal.

On Friday morning, Taylor had the MRI and it went smoothly. It's never easy to be at Children's Hospital and we're always reminded how blessed we are. The test took about 30 minutes and she woke up about 20 minutes later. The worst part was seeing her after the procedure with tubes in her nose and throat, a little tiny IV, and knocked out. She recovered quickly though and after a little hustling on Friday afternoon - we were told that the full report wasn't available yet, but the initial read was no major issues. We took comfort in this and enjoyed the week-end.

On Monday morning, after calling our pediatrician to request the final report, a doctor at his practice called me back (our pediatrician was out of town). I was expecting the nurse I'd been speaking with to call me back and knew it wasn't a good sign when it was the doctor. It was an even worse sign when he asked me if I could sit down and made sure I wasn't driving. My heart literally sank. Thankfully, Julie (our new nanny) had taken Jake to the park and Lauren was at school, so I was alone with Taylor.

He described that Taylor was born without 2 parts of her brain - the corpus callosum and the septum pellucidum. Essentially, these are the parts that connect the right and left lobes of the brain together. He said some people live normal lives with this condition and others have a range of severe problems. He couldn't provide much more info, other than to recommend that we see a neurologist and to be positive. I was devastated and David came home immediately from work. We spent the day with Taylor and gave her lots of hugs and cuddles. Last night, as I was struggling to sleep, I went back to my tried and true system of when the chips are down, count your blessings.

For Taylor, there are so many things I'm thankful for, but here is a short list:
1. every moment of her life - every cuddle, every sparkle in her eye, every big grin
2. her healthy and happy big brother and sister, who love her so much
3. her amazing dad, who is so strong and wonderful
4. our wonderful family and friends - she will always be surrounded by love
5. our top-ranked doctors and medical facilities - literally blocks from our house that can help her
6. our resources and excellent medical insurance that will allow us to give her every opportunity
7. that we have endless love, faith, and support

Julie reminded me of this verse, which I love:
Proverbs 3:5-6 "Trust in the LORD with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths."

Taylor Gurry's blog

We are blessed to have many family and friends that are concerned about Taylor and thought this would be a good way to keep everyone up-to-date. This will likely be a wild ride and we want to keep people posted, without letting this consume us or talk about it too much, especially in front of Lauren and Jake. We are so thankful for your prayers, well wishes, and friendship.