Trick or Treat

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

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

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

Speed racers

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

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

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

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

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

allergies

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

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

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

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

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

Sitting and specialists

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

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

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

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

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

Mama

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

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

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

Treasuring every moment

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

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

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

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

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

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

Welcome to the team

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

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

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

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

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