Taylor the superstar

I've been meaning to post this for a few weeks - one of Taylor's special teachers at her school has chosen our family for her research project at the University of Washington. We are so touched and happy to share our story - if we can help anyone through our experience, we so want to. You can get a great sense from this paper how much her teacher, Kelley Kirkpatrick, loves Taylor. It meant a great deal to us that she wrote such a special paper about our family. The names are changed to protect our privacy, but you'll know who is who.

Loving and Supporting a Child;
Growing Connections Where Once There Were None

*names have been changed in order to protect privacy of family

Michelle is a little girl with a big smile and a big heart. She is also missing her corpus callosum, which means the two hemispheres of her brain are unable to “talk” to each other in the typical ways that other children’s do. In fact, Michelle’s brain is probably just now teaching itself to find other routes around this malformation. Michelle is two years old and she has agenesis of the corpus callosum, or ACC. She lives with her two older siblings, Caleb and Cara, and her mom and dad Anna and John. Michelle was born in Seattle and she lives there now with her family.
Michelle has had a whirlwind first couple years of her life. Her parents became aware of her disability when she was about 8 months old. They noticed that she was very stiff and her limbs stayed tightly curled to her body, which John explained as “delayed protective reflexes.” After several trips to doctors and specialists, Anna and John were told that their daughter was lacking her corpus callosum. This explained the stiffness in her limbs and also meant that several major benchmarks and skill developments for her would most likely be delayed.
For Michelle, ACC means that she has yet to talk, her gross and fine motor functioning are impacted and she has not begun to walk, and eating and oral motor functions are very sensitive issues for her. Despite these facts, she has a very strong bond with her family, loves to laugh and play, adores music, is very snuggly, and has found ways to communicate including raising her eyebrows, shrugging her shoulders and tapping with her hands. Consistent physical therapy, about four times a week for the past year, has helped Michelle to mobilize her arms and gain control over the flexion of the muscles in her upper body.

Her parents say:
Michelle is on a pretty demanding schedule with private therapy 4 days a week and school 2 days a week. She often has a doctor appointment scattered in and has lots of play time. We find this topic hard to judge because Michelle’s progress, like many, is slow. With that said we are seeing advancements that we are excited about. We’ve learned that it is best if we don’t have specific expectations or goals, but know that we are doing our best to help her and she is working very hard.

Anna and John are very proud of her progress and pointed out just how far this little girl has come. Seeing her now, or meeting her for the first time, you can barely tell that her limbs were once stiff and curled. In fact, one of the communication goals her classroom team is working on is for Michelle to raise her arms up in order to tell them that she wants to be picked up!
In the earlier part of her life, while she was undergoing therapy and making considerable progress, Michelle had a seizure. Although it was relatively minor, it understandably gave the family quite a scare. John and Anna went back to the specialists and found that Michelle’s brain, because of her ACC, is highly susceptible to having seizures. Michelle is now on consistent seizure medication and has not had a seizure since, but the family believes that this medication, or perhaps the seizure itself, has caused a loss in some of Michelle’s prelinguistic babbling and early speech sounds. While this step back is disheartening, the family has so much love and faith in Michelle’s progress that there is no doubt the highly conducive language building environment they are fostering for her will help to regrow those skills. They can already see some of the skills coming back.
When asked about what the family does in order to help Michelle gain, regain, and maintain skills, they said:

We also have a large group of physicians and specialists that we see regularly, including neurologists, neurodevelopment specialists, pediatric optometrists, her pediatrician, allergists, feeding specialists, speech therapists, and more. It certainly gives us a level of perspective that we may have not had before. There are many things that used to stress us that now go unnoticed.

It is also very important to mention how much Anna and John incorporate and value the input of all family members – Caleb, Cara, and extended family included – in raising and loving Michelle. On the same hand, John and Anna have a healthy outlook on family development and make sure that everyone is treated equally time- and support-wise. “Special time with all three of our children is very important to us and to them. We are also especially proud of how helpful our older kids are with Michelle. They do not yet really understand Michelle’s condition but we can already see that they are excited to care for Michelle and love her very much”.
Some exciting developments happening in Michelle’s life currently are some of the delayed developmental milestones coming to fruition. Michelle is cutting teeth, gaining more composure over bodily movements, holding herself up in a standing position (and really enjoying it!), trying and tolerating new foods, and really adjusting well to the routine of her new early intervention classroom. Her family is very proud of her. They are also very grateful to be in the early childhood intervention program that they are in now, as it is allowing them access to all kinds of things that they had not seen before. As John and Anna said, “The parents behind the glass (at Michelle’s school) are talking about the best therapists, neurologists, therapies, etc. These are topics that most parents of typically developing children have no knowledge. It is comforting to have a place to go with questions and advice from people and a staff that have “been there before.” As her parents further explained, it is very difficult to deal with all the information and knowledge coming from the medical community and “the experts.” Say Michelle’s parents, “One of the hard things that we faced after learning of Michelle’s condition is that it is hard to find answers. The medical community does their best but their best often leaves you with no answers”. Michelle’s condition is not very common, and this means finding answers and planning for milestones or goal accomplishments is not straightforward or easy.
This family truly loves each other and takes care of all members, regardless of ability. Anna and John have been serious support systems for each other and are able for the most part to balance between the roles of being strong and needing encouragement. Something that I especially appreciate about them, and that stands out to me as a cornerstone of resiliency for them, is the way they approach life and roadblocks to it. Anna and John want simply to make sure that their children are loved and supported. For Michelle, this can look pretty different at times, but as long as her family is together and working for each other, nothing is impossible.

Her parents say;
We all take great joy in seeing Michelle happy. Watching all of the hard work that Michelle puts in weekly to learn small tasks such as getting in and out of sitting, hand function, standing, etc. is amazing. She has worked incredibly hard to use her hands, develop protective reflexes, gain balance while sitting, and so much more.

During a meeting with her family, John mentioned an important key to Michelle’s development. The area of cognition is the most advanced for her, and this means that she understands and knows a lot more than it may appear. It is imperative that all who work with and know Michelle talk to her like she understands. Her parents, and those who are close to her, will tell you that Michelle truly does understand and can in fact pick up many cues from exchanges with her. As a closing note about persons with ACC, high repetitions and exposures to stimuli can actually help the neuro-pathways in the brain to connect! Therefore, every opportunity with Michelle should not be underestimated. This deeply loved and highly motivated little girl will take and use each and every chance she gets to enlarge her world.

Some Resources and Needs
While Michelle is making some great, undeniable progress, Anna and John are looking into finding further resources and supports for her and their family. They really hope for Michelle to become more physically independent and to make advances in speech and feeding. Meeting and being able to speak with other families of children with ACC would be a huge benefit for this family as they could have a direct resource and better knowledge about future outcomes and goals.
John and Anna are also looking forward to participating in more of the activities and supports offered through Michelle’s early intervention program. Activities such as mom’s and dad’s nights and some of the social events are things they would love to do but unfortunately time commitments and scheduling conflicts have made it complicated.
As a final note, the family is interested in finding a feeding therapist/specialist and also would like to know more about hippotherapy and water therapy.

Snowflakes

The teachers at Taylor's school are so wonderful. They truly love Taylor and it is another gift that we treasure so much. For Christmas, they gave us a lovely photo of Taylor with this poem - it really meant a lot to David and I. It's such a good reminder that every child is special in their own unique way.

Snowflakes
By Anna MacPherson

Each one comes in a different light,
a different reason, a different night.
The brightest thing you'll ever know;
love for them will forever grow.
Everyone has a different face,
each of them their own special place.
It's in our lives they frolic and sing,
just seeing them smile is a beautiful thing!
A sparkling snowflake is truly unique
and we're watching them grow everyday of the week!
Open your hands and soon you'll see
what beautiful people these snowflakes can be.

Holiday update and Taylor the player

Tonight I am so grateful. I think I've mentioned how much I love the holidays. We have had so much fun the past few weeks - lots of holiday festivities, Christmas shows at the kid's schools, and general excitement about the upcoming week. The kids are very spoiled in that they have so much to look forward to - Christmas Eve with David's family, Christmas morning at home, and then off to Missouri for 10 days with my family. It's my favorite time of year and I love that the kids are equally excited.

Seattle is so fun for the holidays - we've ridden the holiday carousel, toured a Teddy Bear suite at the Four Seasons, seen a tremendous Gingerbread house display, met Santa, and had lots of fun preparing. The kids love the decorations at our house - my mom sent us a huge box of elves that we've had fun arranging around the house. The Elf on the Shelf continues to delight and the kids have had a blast wrapping presents and keeping secrets. They get so excited they can hardly stand it.

We celebrated David's birthday this week too - the kids made sure he had a great day and then he and I got away for the night while David's mom watched the kids. It was lovely to have a night away and so fun to come home to the kids - they really miss us and it's such a treat to see their delight when we come home.

Tonight I am also very, very grateful for Alison. She has been such a gift to us this year and we said good-bye to her today for the holiday break. The kids love her so much and she is special in so many ways to each of them. Taylor, in particular, just beams at her and it is so comforting to us to know that she loves Alison so much. Lauren today said "mom, Alison is the best babysitter - all of the other kids should have an Alison in their lives." Priceless, I tell ya...

Amidst the craziness, Taylor has trucked on, working hard. She is fighting a cold and still struggling with teething, but she is such a dear. David says I should describe how well Taylor has learned to "play us." Here is an example - last Friday I took Taylor to therapy. She has gotten funny about me coming to therapy - she is totally fine if Alison takes her and if I stay out of her line-of-sight. If she sees me at therapy, she whines and cries - like, "mom, can't you help me?" So, I've started to hide behind the door so I can watch her and she's happy as a clam. It's the same dynamic that I had with Lauren - for awhile I had to stop taking her to birthday parties when she was younger because she would cling to me for so long. She literally had more fun if someone else took her. Anyway, last Friday, Taylor had a bit of a cold and seemed tired. She was very fussy at therapy, so finally I told Susan I thought we should cut the day short. I load Taylor in the car and she immediately starts cracking up. She laughed the whole way home. When we got home, I said, "Taylor - did you trick mama?" She grinned so big and laughed every time I asked her. She has done a similar trick on David at her school - she will be sad at school and then the minute David picked her up, she started laughing. She loves us, which is precious, and while we don't like her to be sad, it is such a joy to know she loves us so much. We are blessed, blessed, blessed.

Sweet Lauren

Tonight I am so thankful for Lauren. I'm sure every parent thinks their child is the sweetest, but I really think Lauren is. Here are two recent examples:

1. Tonight, as we're saying prayers before bed, she says "mommy, I know what I want to be when I grow up. I want to be a helper." She wants to help people - simply and sweetly.

2. We saw Santa last week and she and Jacob told Santa what they want for Christmas. Lauren wants an American Girl Doll bed, a jingle bell hat, and for the second year in a row - a picture of Santa. I think she's testing him. Jacob wants a skateboard and a gun (!). I don't know what Santa thought about that. So, many nights later, she says to me - "mommy, we didn't tell Santa what Taylor wants." Really - how heartwarming that she alone remembered that nobody told Santa what Taylor wanted. Taylor, meanwhile, was not happy on Santa's lap and wanted nothing more than to be rescued - so David and I were focused on that and getting a cute picture of the kids - but Lauren, in her sweet way, wanted to make sure that Santa knew what Taylor wants too. I promised her we would go to see Santa again and tell him what Taylor wanted.

How blessed are we to have her as the older sister?

Christmas card trial and error

I love so much about the holidays, but trying to get the perfect picture of my three little munchkins isn't my favorite thing. It's nearly impossible to get everyone in a good mood, cooperative, and looking the right direction at the same time. None of these efforts made our Christmas card this year, but thought you would enjoy them anyway!

Happy Thanksgiving!

Happy Thanksgiving everyone! As always, we have so much to be thankful for - I love this holiday because the kids are still young enough to be so sweet and profusely express their thankfulness for their family - verbally and via a million art projects. We've had turkeys, pilgrim hats, little villages, wreaths and lots more decorating our home over the last several weeks. Taylor is participating in art projects at her school and she is proud when you tell her how much you love her project. She will just beam.

We spent Thanksgiving on Whidbey Island with David's family. The big kids had an absolute blast. The weather was about 50 degrees, but no rain, and they played outside for about three days straight with their cousins. They had so much fun and we love that they have such a special Thanksgiving tradition. The actual Thanksgiving dinner is not their favorite, but they have the "thankful" part down well. Taylor is not a fan of new places or lots of people - she gets overwhelmed easily. We try to accommodate this to a degree and make sure she has a quiet place to eat and breaks from the crowd - even though they are family who love her dearly. She warmed up after a day or so and enjoyed herself too.

We came back home on Seattle and you should have seen Taylor's face light up when we came inside our house. She clearly knew this is my home and I'm happy to be back! She giggled and laughed for awhile - she is our little homebody and I'm glad she is so happy here. I took the big kids downtown to pick up my race number (I ran the Seattle half-marathon today), ride the carousel and enjoy the downtown festivities. Lauren was so sweet and said "thank you mommy for the special day." It was good I took the kids to the carousel - it has lots of lights and I noticed a sign that said "lights on the carousel may trigger epileptic seizures" - good to know. Taylor won't make a trip to the carousel this year.

While we were on Whidbey Island, we went on our annual Christmas Tree hunt, which was successful. So, today, after my race, we decorated to our hearts content. The big kids to decorate! Stuff is flying, they are tearing around and while they are creative, it doesn't exactly fit my vision. I remember how much fun I had helping my mom decorate our house when I was a kid, so I try to let them go crazy for awhile (and then re-arrange later). It seems to work for now. They're favorite decoration is the "Elf on the Shelf" that my mom sent them. It is a little elf that moves to a new location every night - it watches their behavior and reports back to Santa. You can't touch the elf or he will lose his magic. The kids are very fascinated by him - Jacob in particular, is mostly curious and a little fearful about the elf's reporting. It is so fun to have young kids during the holidays.

We are so thankful for all of our family and friends - David and I feel so blessed and grateful for all of our gifts.

Swallow study

We had a good week this week. Taylor had an interesting test on Tuesday - a swallow study at Children's Hospital. She continues to struggle with eating - the poor kid mostly eats an oatmeal/baby food mixture for every meal and we've been stuck in a rut. We're on a mission to help her make progress in this area. For a number of reasons - obviously there is more to life than oatmeal and baby food and we can't wait for her to be able to enjoy other foods. She has also had a real problem with constipation - which is absolutely miserable. We've had to resort to suppositories a few times and regular doses of Milk of Magnesium (which her pediatrician recommended) to keep things moving. The infant oatmeal she was eating was full of iron, so we've switched her to fiber rich regular oatmeal - which we grind up in our blender so it it's too lumpy for her.

The good news - the swallow study turned out fine. They essentially x-ray'd her while she sat on my lap to see how fluid and food went down her throat. I could see the screen and it was amazing to see how it literally went down her throat. The hard part - she doesn't really like eating on a good day and she was not thrilled to be in a little x-ray booth with strange ladies talking to her. She did not want to eat so it was sad for her and messy for all of us, but we got what we needed. Her plumbing is working fine, so there is no physical reason that she shouldn't be able to eat more solids. So, it's largely a texture, sensation issue that we need to work through. We'll work on getting specific feeding therapy lined up now that we know there isn't anything physically wrong. We're ready to tackle it and make some progress.

Otherwise, life is good - the big kids are happy and looking forward to Thanksgiving. They insisted on unpacking two bins of Christmas decorations this week-end, despite our best efforts to wait until after Thanksgiving. You gotta love the exuberance of young kids over the holidays. We're also trying to reinforce the importance of being thankful - Lauren took cereal boxes into her school for a food drive and we've talked a lot about our blessings. They are growing up so fast - Lauren is almost up to my shoulder now and Jacob isn't far behind - it's amazing given their genetics. I will definitely be surpassed in height soon.

David and I had a date night on Saturday! It was good for us to get out and we're doing well on our "fun" resolution. The kids were very cute - they chose outfits, including jewelry and shows, for mom and dad's big date. Thankfully, Taylor goes to bed early - so she went to bed shortly after our sitter arrived. This helps with our peace of mind - it is still nervewracking to leave her with people beyond our small circle of folks that understand her condition. But, we all made it just fine and David and I had a great date!

Taylor the schoolgirl

Had to share a note that Taylor's teacher, Beth, sent us today:

Hi Lisa and David! Just wanted to let you guys know that Taylor had another great day in playgroup today! Her personality is really starting to come out and she is smiling much more often and today she was laughing and being silly with the other kids! She has the best laugh!! :) At snack today she also picked up her spoon and put it in her mouth all by herself! She is enjoying standing and bouncing on the trampoline outside and she is really watching what the other kids are doing. We are so proud of her!
Have a great week! Beth

The trampoline she mentions is a small trampoline with a handle that she can hang on to, with support of course. It is heartwarming to know that she is having fun with the kids and enjoying school. We've come a long way since the first weeks of school, which were a bit teary (or a lot teary) with separation anxiety.

Taylor does have a light - and when she lights up and you can see the true Taylor, she beams with joy and delights us. It's so fun to hear that her teachers and schoolmates are seeing this side of her - we're on a roll!

Little Stander

These are pictures of Taylor standing. You can see her little sitting stool, her standing up so straight, and her joy. She can stand for a long time at the ottoman - she is a little nervous to not have it, but she can stand for about 10 seconds totally unassisted. She is topless because she worked up a sweat! This is really hard work for her, but she loves it!

TAYLOR IS STANDING!

Today was so incredibly exciting. Over the last week I've emerged from my funk and today was the reward! Taylor stood up! All by herself!! There were so many hours of hard work that led to this milestone - first we had to get her to open her hands, then take weight on her hands, then gain some use of her hands, so she can support herself and catch herself if she falls. Then we've had to work with her standing intentionally, vs. stiff as a board, and knowing to sit down (and how to sit down) when her legs are tired vs. falling over on her head. It's hard to appreciate all of the little, intricate details that led to this accomplishment - but she worked so incredibly hard. I am so, so proud of her and thankful for Susan for her faith that we could get here.

We so badly needed a sign that things were connecting, that she was making progress, and we should let ourselves hope for and trust that Taylor will walk. It's been nearly a year since her last major milestone (sitting independantly) and while we've had lots of little wins, which we've learned to treasure - we really needed a big win for Taylor.

Here is how she does it - Susan has a little stool that she sits on and we have an ottoman that she has in front of her. Taylor, like a little jack-in-the-box, sat and then stood up - strongly, "normally", and so, so proudly. She did this for about an hour - up and down, up and down. I was crying, Alison was crying, and Susan was crying - we were all so happy for Taylor. The best part - even better than her standing - she was so, so proud of herself. She had a huge grin on her face, was laughing hysterically, and shouting "yaaa" when she was standing. She was just so excited. She would look to Alison and I to clap for her and she was obviously thrilled with herself. Any parent wants their kid to feel a sense of accomplishment and pride - and this is the first time I've seen this in Taylor. Yes, she knows she is loved deeply, but to see her realize that she can do things and she is capable - I can't even describe it.

I hope this ignites the realization in her that she can walk, she can play and she can be independant. In the meantime, today is an incredibly special day. A real gift from God - if you don't believe in miracles - let me say that this little gal, without part of her brain, who couldn't even roll over a year ago - is a miracle in the making. Keep the prayers coming - they're working!!

Happy Halloween!

I love, love, love Halloween! This is one of those special days where it is so much fun to be a parent. The kids had a blast - trick or treating, going to school carnivals, dressing up for school, and hitting a few Halloween parties. They are pretty cute, aren't they?

October update

My sweet little sister emailed me today to ask what's up with the blog? I love that people read this and miss it, so I'm inspired to send an update. In a nutshell, we've had a rough month. David and I haven't had a lot of energy for anything extra -including writing in the blog. Most days, at the end of the day, when I typically write, I haven't wanted to think about anything deep and this blog, while usually helpful to me, requires thought. From day one I have tried to be true to our experience, while also keeping this positive and uplifting - because Taylor is an absolute gift. But, some days this is easier than others and in the last month, I haven't had a lot of those days.

The reality is that our life is very blessed, but often overwhelming. Work has been nutty for both of us the last several weeks and the big kids have had the usual back-to-school adjusting - a little extra tired, lots more parent/teacher meetings and volunteering for field trips (which is fun, but adds to the juggle), soccer, reading practice and homework and the "normal" parenting activities. Anyone "in the trenches" understands the juggle. Add to this Lauren and Jacob tend to argue when they're tired and Jacob is in a big "Independence" phase, which is not precious at times. Nothing new here, but the work of parenting can be hard for anyone. And above all, joyous and special. We've also seen Lauren beam from her first soccer goal, ask to do math homework for fun, and begin to breakthrough with reading. Jacob is starting to read already, counting to 100, playing soccer with his buddies and continuing to make us laugh. They both can be so sweet and wonderful together and separately - when they feel like it:)

So, this is our "normal" life and then we have dear, sweet Taylor. Who we love endlessly. And with love comes worry. David and I had a nice long, overdue chat last night about the weight of worry - even when you know that worrying is not helpful, worry wastes time, and we fight every day to not let worry consume us. Occasionally we realize how much weight we're carrying around and realize we also need to take a moment to admit, yes, our situation can be overwhelming - because we want the best for Taylor, our big kids, and each other. The reality is that Taylor is very much a 26 month old baby. We carry her everywhere (and now have back pain to manage), hold her bottle for her, feed her every meal (which takes about 30 minutes), entertain her and care for her as best we can - while also giving Lauren and Jacob as much attention as possible. It has been, and will continue to be, a long road.

The unknown is probably the hardest part - we simply don't know what to expect and this is the part that could make you go crazy. You wish, hope, pray, look for signs and wait for a breakthrough. But our road is slow and steady and we just have to be patient. All things considered, she is continuing to do really well - she is doing good at therapy and we are continuing to see small signs of improvement. She is enjoying rolling around and pushing up on her knees - and even rock back and forth a bit. The other night she was sitting on David's lap and lifting her foot up and down. She was staring at her foot and giggling - you could see the lightbulb going on that she could control the movement and it was fun. She's starting to move her feet to help push her little riding car and is making a lot of progress in transitioning from laying down and pushing up into sitting. We so want her to have more independence and initiate movement on her own. She is also finding her voice - which is mostly fun and developmentally on track - but also sad. We can see her get frustrated now when she wants to do something, or not do something, but she doesn't have the words to convey it. We're working with her on nodding/shaking her head and tapping to mean yes. She is very consistent with waving her hand for "hi" and it is so cute when she waves vigorously when she sees us.

We decided last night that David and I need to have more fun. We're pushing ourselves to make more time for us and hang on to ourselves during this journey. Having some fun, exercising and taking a break will make us better parents for all three of them - it is hard for us to do because we never feel like there are enough hours in the day - for work, for parenting, much less for fun. But we're on a mission because life is what we make it - and the best example we can give our kids is to embrace life, laugh and love the best we can.

Inspiration and Giving Back

Tonight I am inspired. It's Giving Campaign time at Microsoft, which is a huge drive for philanthropy. As a company, Microsoft gives a ton of money to great causes and the employees do a great job rallying folks to give back.

So here is my idea - I wondered for a moment if I should share this since I just thought of it, but perhaps you all can hold me accountable to bring it to life.

I want to hold a fundraiser "fun run" for the Haring Center - Taylor's school. It needs funds to keep it going and it is such a wonderful place. David and I are both runners, of course, and we have so many friends that would love to help out. A quick little 3 mile run for a small fee could raise big money for the school. I want to make this happen and call it a "Run for Taylor" - who is running everyday to be the best she can be. I'm thinking next spring, once the weather is a bit better, but before folks scatter for the holidays. Spring is also such a time of renewal and hope - I like that. So, stay tuned for more on this - I'm going to make it happen.

Birthday fun

This is Jacob - the morning of his birthday - ready to open presents at 6:30am. Lauren and Taylor were in great moods too. Jacob also enjoying his party at the inflatable gym. Lauren and her fashion show glamour gals and on her new horse. Gotta love birthdays!!

First Days of School

Busy September

Wow, where did September go? It seems like September gets busier every year. It is our birthday season - Taylor is August 22, Jacob is September 13 and Lauren is September 28 -no, they weren't planned that way:) I LOVE birthdays and try to make them very special for each kid, so I am wiped out at the end of the month. School starts in September in Seattle and that is another level of craziness between shopping preparedness, orientation meetings, tours, beginning of school activities and more - right now, for each kid in three different schools - phew. But mostly, September is loads of fun - the kids have a great time and there is so much joy all around.

Today is Lauren's birthday - she is 7!! I can't even believe it - 7 is such a big girl and seems like she is hitting another milestone in becoming a big kid. She is such a sweet, kind girl with a huge heart - her classmates made her a birthday book and they each had to fill in a word for her - "sweet", "kind", "nice", and "good friend" were the most common - can you ask for anything more as a parent? She had a huge week-end - Saturday was her friend party - as always, Lauren is Miss Creativity and decided she wanted a fashion show party. We moved all of our furniture around in our living room, made a red carpet, hung sparkly decorations, and all 16 girls walked the red carpet for their parents. It was a big hit and so much fun. Of course, they had to choose outfits, get their hair and make-up done, and practice before the big show. This was the after the pizza picnic, pinata, and playtime - Lauren had a blast. She was a good sport and Jacob got to be the emcee of the show and the DJ. Taylor also cooperated and somehow napped through the bulk of the party. Yesterday, we had Lauren's family day since she was in school today - we had pancakes with candles for breakfast, presents (her favorites were a personal doorbell for her room and a huge stuffed horse), lunch at a restaurant, a trip to the toy store, and a picnic dinner. She also had her third soccer game - and scored a goal! She is in a fall neighborhood soccer league and she is doing awesome - she is a smart player and has really good foot control of the ball - as she says - I'm a good goalie, mom. We're so excited that she is having fun with it. She plays on a team with 5 other girls and they play 3 on 3, so everyone gets lots of playing time.

Between birthdays, school starting, soccer, and more - life is busy, but fun. I am feeling more relaxed about our schedule and less pressured to go to all of Taylor's activities. She is enjoying therapy now and loves to practice moving. She has not been a big fan of her school - she has normal 2-year-old separation anxiety with her new class, which as always is a mixed bag. On one hand, you hate for her to be sad, and on the other hand, it is so nice that it is a developmentally appropriate reaction. We're working with her on it, giving her lots of hugs, but also trying to encourage independence.

Most exciting - my little sister had a baby boy, Caleb. We're so thrilled for our families new addition and know they will be wonderful parents. I will post a bunch of pictures so you can see our first day's of school, birthday fun, and more.

Jacob is 5!

Wow, what a week-end - Jacob is 5 today!! I can't believe my sweet, crazy boy is 5 - it is such a milestone in my mind. In many ways, he has always seemed like an old soul- he was an early talker and walker and he has always had the deepest, most infectious belly laugh. I love him to pieces and we celebrated his birthday with joy - I love birthdays!!!

We woke up bright and early - he was up at 5:45 and went into Lauren's room - he told her she needed to make him breakfast because it was his birthday. So, we were up and at 'em. He'd opened all of his presents by 7am - a Playmobile knight castle and pirate ship were the biggest hits - he loved these toys. I spent the next few hours building his new toys and then we all went out to breakfast. He loves his pancakes. He and Lauren played all morning and then we went to Lauren's first "real" soccer game. She plays on a team of six players and it is the cutest thing. She's not the most aggressive, but she is pretty good. She's a smart player and motivated. They play 3 on 3, so 3 are resting half of the game. Each time she was resting, she would say - I want to play - we loved it. Then, David took the big kids to the pool while Taylor and I played and she took a huge nap. The big kids are big swimmers - Lauren swam a lot of laps and Jacob is just nearly self-sufficient. He can swim a lap on his own now.

Tonight we celebrated with pizza, mac and cheese, and chocolate cake (Jacob's choice). He was such a good boy all day - he has such an amazing personality and I'm so proud to be his mom.

Taylor took a 3 hour nap today, which she so badly needed. She has been on a bit of a sleep strike lately. We don't know if it is teething, constipation, or just being. Her naps have been pretty much non-existent and she is so wiped at the end of the day. We're hoping she gets back to normal now. She has therapy last week and it went well. It was such a gift - she didn't get too tight while Susan was on vacation and we didn't lose any ground. Hurray! Last week was super busy for me at work and beginning of school craziness, so I wasn't able to go to as many sessions as I would have liked. Typically I will take her twice a week and Alison will take her once a week to therapy and once a week to school. David will take her once a week to school. The beginning of school has created the next round of scheduling nuttiness, but I think we're getting in a groove. Hopefully this means I will find more time to write on the blog too - I was a huge slacker over the summer, so perhaps the new school year will bring me structure too:)

what makes a happy life?

Yesterday, out of the blue, Lauren asked me "Do you think Taylor has a happy life?" How deep and introspective my little gal can be sometimes. I answered "yes, I really hope so". It was so timely because I have been thinking a lot about this question this summer - in fact, it has been a huge part of my inner thoughts.

This summer I have tried to come to terms with accepting the reality of Taylor's life - challenging because we can't ever know what our kid's lives will be, and even more uncertain in the case of Taylor. When we first found out about her condition, my approach was blind optimisim - we could give her every resource available and would do everything we could for Taylor to be "normal". Over the summer, I've realized that this mindset may not be good for Taylor - or the rest of our family. As it turns out, her life can be wonderful and fabulous, even if it is not the "normal" parents typically dream of. Step by step, I have worked hard to accept that Taylor will be blessed with a precious life - even if it is different than what I would have dreamed of. This doesn't mean I have given up hope - but instead, I have chosen to embrace Taylor for what she is today, and what she may be. It is OK if she doesn't go to college, or live indepentedly, or get married, or any of the other million things you hope for your kids. I still pray she will - but have realized that it is important for all of us to accept that her life can be grand - no matter what. The real gifts are found in - can you smile every day? do you feel loved? can you laugh? do you have a happy laugh? This is the unconditional love that parents strive for - I will love you for you, no matter what.

This mindset is so important - I read a wise story about how we can easily miss the joy of today - every little laugh - every precious memory - because we are so worried about what the future might - or might not - bring. The guidance was "don't be so worried about the future, that you miss the joy of today". I have tried to embrace this - for all of us. At the conference David went to he saw first-hand how varied and different kid's lives can be - and how much joy they brought their families regardless. Taylor is truly a gift and rather than blindly pushing her to the goal of "normal", I am striving for the balance of helping her, while ensuring she has a "happy life". We love her so dearly, and Lauren and Jacob too - the happiness of our whole family is the balance we are striving for.

Tonight I know without a doubt that she is a gift and she is happy. It's our job to help her be happy forever, along with the rest of our family.

Happy 2 Years!

I'm 2!!!!

Taylor is 2!

We've had a wonderful few weeks - we had a great 10 day trip to Missouri and now we've finally settled back home. Our big news, of course, is that Taylor turned 2!!! She is a huge 2 year-old now. We can't even believe it. She had a great birthday. We celebrated her second birthday on August 22 in West Plains with my family. She was a bit tired - she struggled for several days with teething - but she had a great time getting lots of cuddles, jumping in a cool jumping toy, joining the kids for swimming, and seeing everyone. For her birthday, I made my first egg-free cake (which tasted awful) and put yogurt on top for icing. Taylor can't eat it yet, but we wanted her to have the opportunity to have her own cake. She opened a few presents and played with balloons. Friday night, we had another party in Seattle with David's family. We gave her our presents too and we had a few home-runs - she LOVES Tickle-me Elmo - a stuffed Elmo that laughs and shakes. She smiles so big and cracks up. She also likes this cool new riding toy we got her - it's hard to describe so I will post pictures. She can rock in it or ride like a car. All in all, she had a great birthday and we can't believe she is 2.

David went to the ACC conference while en route to Missouri - I'll let him post a report soon - he thought it was very worthwhile and I can't wait to go with him next year. It was interesting, informative, hard and inspiring all at the same time. I'll let him post a recap.

Missouri, meanwhile, was a blast! We had a great time playing with Nana and Poppy, my sisters and their husbands, and my nephews. We did a ton of swimming, playing, silly stringing, water squirter fighting, canoeing, fishing, and just having a great time. The kids loved it and it is so fun to see them having such a great time. I was able to go to two of Shawna's baby showers and it was really special to see my baby sister pregnant. One of my most special moment's was a visit to the graveyard where my grandparent's are buried and the small family church next to it. I took a moment inside the church to pray deeply for Taylor and our family. I've been wanting to do this for months and I felt this enormous wave of peace. I feel so much better and it was a huge gift to have those moments.

We had some hilarious moments too. One of my favorites involves Jacob. He is super starved lately - eating all the time. Alison jokes that he has a hollow leg. We spent the night in St. Louis before we left and the hotel conveniently had a fire drill. We were on the 7th floor and had just dropped our bags before going to meet our dear friends for dinner. All of a sudden, the alarms go off and a speaker says we must exit. The kids were nervous, but we quickly gathered a few things and went down the stairs with the other guests - very slowly. Thankfully it wasn't a real emergency. We get outside and we had just grabbed Taylor's bag and medicine, purse, wallet and David's computer bag, and Jacob says "don't worry, Mom, I got the Cheetos" - This is hilarious because of all of his prized possessions, he grabbed the small bag of cheetos I had just bought him for a snack. He never gets snacks like that so he cherished it so much that he grabbed it on the way out.

The kids traveled like champs - even with a 5 hour delay out of Seattle and getting to West Plains at 3:30am. We had a wonderful trip and now we're just soaking up the last weeks of summer. They start school right after Labor Day and I can't believe the summer is wrapping up already.

What a year....Taylor's favorites

This week is so exciting because we're going to see my family in Missouri on Thursday! We are all so excited. I love, love, love going home and the kids have a great time. They packed their bags on Saturday and have had to unpack a few items, but it's a sign of how excited they are.

The other thing we're excited about is an upcoming vacation for our family from Taylor's therapy. Taylor so deserves a break, and while we will work with her on various exercises, the daily routine will get much easier. Susan is going to London until Sept. 5 so we'll get a nice long break - we're so looking forward to Taylor getting to be a normal kid, our big kids to not have the distraction for the last several weeks of summer, and a chance for all of us to take a deep breath. The morning schedule has gotten old the last several weeks - having anyone show up at your house at 7am four days a week for 2 hours of therapy is a hard way for everyone to start the day. Thankfully, Taylor doesn't mind most of it anymore, but it's still a juggle with two other kids and two parents that need to get to work. One of us, or Alison, is always with Taylor, so we're so grateful that Lauren and Jacob have been such good sports this summer.

We started with Susan last August and it has been an incredibly long year of therapy - mainly for Taylor, but also for our family. From my rough math, that is about 330 hours of therapy. The dedication Taylor has shown is truly amazing and inspiring. I'm proud to say that we have come a long way - we always have to be thankful for the increments, because the steps are still small, but we're so hopeful for her future. Like everything, I still do well taking things one day at a time - let's focus on motor skills for now, then we'll add on other skills (cognitive, speech, etc). To see Taylor practice standing and sitting, and exploring more with her hands and feet, is a huge gift.

I've gotten distracted - I'm sitting in our TV room - staring at Taylor's therapy roll, little toilet plungers and sitting stool, new orthotics, special bike and stuff - surrounding me. Typically our house is much neater, but the morning therapy session's aftermath is still here. It will be nice when we wrap up therapy in a few days and we can put everything out-of-sight for awhile.

What I wanted to share tonight is something that I am so thankful for - that Taylor has emotion and feelings and has an emerging personality. She smiles and laughs and gets sad and frustrated - feelings are what make Taylor unique and we are so thankful everyday for seeing more and more of Taylor. Here is what we know so far:
- she loves Jacob and Lauren and us - she saves her biggest smiles, deepest laughs and cuddles for us
- she has other favorites - like Alison and Julie and her grandparents
- nothing makes her laugh harder than when Jacob makes a silly noise - shrieking noises are her favorite; although a hysterical cry will also crack her up
- she loves music - Itsy Bitsy Spider (with hand movements) is her favorite song
- she loves to watch Barney and Baby Animals, or any show that has tons of music - she gets annoyed when the show stops
- she loves to play her toy pianos, shake musical instruments, and beat on drums; we really think she might be a rock star
- her favorite stuffed animal is a singing Winnie the Pooh bear
- her favorite food is any sweet fruit, like bananas or apples (baby food still)
- she loves it when you congratulate her - she beams if you say "Taylor, great job!" "Taylor is so big!"
- she loves movement - she loves to swing, ride in her riding car and anytime she is on the move - my favorite game to play with her is to essentially twirl around and watch her laugh
- she is the most happy when you peek into her crib in the morning - she is well rested and she kicks her feet and grins so big - she is so ready for the day

This gives you some insight into our sweet Taylor - we love her so much.

Dress up time

And, because I'm behind on pictures....had to post a few of our fun times tonight. As you can see, Taylor is Liza Minnelli in the making. Lauren was our stylist.

Pics from Suncadia vacation

These are pics of our trip to Suncadia, in eastern Washington. We had a great time. And, of course, I had to post a pic on Taylor standing!

Standing!

I hope you enjoyed David's post last night. He was beaming over Taylor's big move so I told him he should document his excitement! As we both know so well, we have to celebrate the wins - we are so thrilled for Taylor and they help sustain us all during the slow times.

We are working on so much with her right now. She is so ready to move and is making great progress. She is working on standing up! And she is getting quite good. She can stand - really unassisted - for about 10 seconds now. Of course, Susan has a technique for everything. She is practicing standing in a few different ways - she always has a little stool behind her and when her legs get tired, she has to sit on the stool. The goal is for her to practice sitting when she is tired, rather than falling. In probably the most unique use of props yet, she has these little - real - toilet plungers that she holds in both hands and uses essentially as walking sticks, while standing. I'll post a picture soon - you'll have to see it to believe it. The goal is for her to use the sticks to help her balance, yet they aren't very sturdy so she has to balance check herself frequently. She has to hold the sticks slightly in front of her to encourage her to keep her arms out - again, to train her arms to catch herself if she falls. It's starting to connect for her and she really enjoys standing. She gets frustrated sometimes when she wants to sit and can't quite figure out how to make her legs bend - you can see her face get frustrated and she'll cry out, and then sit. Her dedication is truly amazing.

We also are working on some small things, that will hopefully pay big dividends. One of the things that is great about Susan is her attention to detail. She wants Taylor to be as "normal" as possible. So, one of the things we're working on is her mouth. Yes, her mouth. Basically, her mouth needs help to develop tone, or the ability to use her jaw/mouth muscles. Again, you never think about how hard it is for your mouth to work - you need to control your muscles in your mouth to hold you mouth normally (without gaping open), to control drooling, to eat and to speak. So, Susan has encouraged us to work with Taylor on strengthening her mouth muscles. Basically, anytime her mouth is open (gaping open) we are supposed to push down on her tongue, which encourages her to close her mouth. We also can tap firmly underneath her chin -this encourages her to close her mouth and swallow. It seems a little strange, but it is important for Taylor to look "normal" and to help her with eating and speaking. Had to share this detail because it is a great example of how so many little things add up.

We're working on lots more, but that's enough for tonight. We are so happy today - mostly because of Taylor's advancements and also because we got a great night of sleep last night. Still adjusting to her medicine, Taylor has been on a stretch where she is getting up at 4:30-5am. Then she will take a morning and afternoon nap. If she will just sleep in to a normal time, she won't need the morning nap again. This morning, she actually slept until 6:40am -the whole house did! This is so rare for us and so needed. It was a push to get Taylor fed before Susan showed up at 7am -I've given up and don't even bother getting out of my pj's for Susan anymore. Thankfully she doesn't seem to mind. Here's to more nights of great sleep!

The "Tater Tot" Rocks!

What a Weekend! The fam headed east of the Mountains to a great resort called Sundcadia. We checked into a "kid friendly" house and started causing trouble. Each day was filled with bike riding...lots of bike riding...swimming, finding frogs, freaking out over bees, exploring, board games, Go Fish, boat rides, etc. I even taught Jake how to play cards....he beat me and I promised a trip to Vegas when heturns 21. It was a hot weekend and we had a great "Gurry Adventure". The kids started calling Taylor "Tater Tot"...apparently a great nick name from Alison. She is now my "Tater Tot"...the nickname I have been searching for.

I nearly lost it a few times this weeked with Taylor's great accomplishments. Raising a child with special needs forces you to look for the "itty bitty" developments that one may not normally notice. It is amazing how complicated a task such as crawling can be when learning from scratch. Think about it......get up on all fours....one hand forward..the opposite knee forward...the opposite hand forward...the opposite knee forward. All while protecting yourself from falling and ignoring the other things happening around you. Our therapist has commented serveral times that walking is actually an easier task than crawling. Not sure I am there yet but I will go with it.

Once again we are focused on the "itty bitty" and savoring every moment. We caught Taylor a few times trying to get up on her knees while laying on her stomach.... WOW! WOW!WOW! We then caught her in her crib up on her knees and up on her elbows....WOW! WOW! WOW! We then watched her up on her knees and elbows rocking back and forth...UNREAL! We then layed her down again and she cannot get enough of it! I cried.

It is truly unreal. We have been waiting for our little "Tater Tot" to initiate movement on her own. She is strong enough to move but she needs for the pathways in the brain to connect so that she can realize that she can do this on her own. Up until now we have helped her initiate movemevent every step of the way. This is huge for the Gurry's. Taylor will be 2 in a few weeks.....We can lay her on the floor and she can roll from side to side, she can sit on her own, she can reach out to grab a toy, she can get up on her knees and elbows (sort of a crawling position), and the best part is that she is pissed that she cannot move beyond that. She really wants to go and she is one tough cookie!

I love this little Girl.

David Gurry

The latest

Summer is flying by and we have had lots of fun - I can't believe it is nearly August. Of course, I've been lame at writing lately - I'm not sure why. We've definitely been busy, but I think I haven't really known what I wanted to write. We're pretty much status quo - nothing major to report. While better than bad stuff to report, I'm so ready for a huge break-through that I can excitedly share. I've accepted by now that this likely won't happen. Taylor is going to work really hard for every little skill - and we are amazed and awed by her perseverance.

She had an appointment with the neurodevelopment doctor last week - Dr. Cowan. He is a very nice man and great with Taylor, but David and I always leave and wonder why we bothered. Yes, she is still delayed. Yes, she is making progress - slowly. We still don't know what her future will bring. Thankfully we only see him every 4-6 months or we'd probably question it more. If anything, he is a good sounding board for our regime - are we doing enough of the right things? He assures us that we are doing everything we can for Taylor - in fact, we're aggressive with the therapy schedule. More is not always better. We've heard this before, yet no one knows the magical formula. So, we're betting on 8 hours a week right now as the right mix with Susan, plus stuff we work with her on at home. The worst part for me is that occasionally we get a bullet that is hard to swallow - Taylor is still not quite small - barely on the charts and because her hormone levels and other stuff have checked out, Dr. Cowan says her small stature is likely connected to her brain condition, although it's not clear exactly what is going on. I asked him if we should consider growth hormone at some point and he said it depends. If she is physically disabled, a small size is preferred because she will be easier to transport and move. If she is not, we will probably want to consider it. Quickly, being short becomes the least of our worries. I really hate to consider that she might not walk - it is a possibility, but one that I can't dwell on.

I've asked Susan for her opinion and she says that Taylor will walk because she wants to so badly. You can see her focus and try so very hard. She loves to move and is getting better at using her feet. She still is working on protective reflexes though, which are so important so she can catch herself. She is making progress - she can hold weight on her hands and is less sensitive. She's beginning to explore with her hands more, so we have to just have faith that it will all come together for her. Susan knows Taylor best, so perhaps it's blind faith, but it's the best way for us to move forward right now.

I am starting to read a lot more - with the hopes of learning about new therapies or research or specialists that could help Taylor. One book "The Brain That Heals Itself" is inspiring - it is about a bunch of case studies of people with challenged brains overcoming all odds. Another one - "Blue Sky July" - about a mother's experience with her child with severe cerebral palsy, is heart-breaking, but comforting at the same time. We're most excited about an upcoming conference that David is going to attend in a few weeks - it's for the National Association of Corpus Callosum Disorders and it will be full of families like ours. The conference is in Indianapolis this year, so I'm taking the kids to Missouri to see my family and David will spend the week-end at the conference, and then meet us. I'm so thankful that he is checking it out - we just want to learn more. I'm skipping it to stay with the kids and spend time with my family - if he thinks it is great, we'll both go next year, and perhaps take the family.

So, nothing much new to report, but we're just keeping our heads down and trying to help Taylor as much as we can. Susan is going to London for 3 weeks in August, and we're partly thrilled for the break from the routine and a real vacation for Taylor -and partly worried about the lack of therapy. Mostly, I think we're ready for at least a few weeks of a normal summer.

Lauren and Jacob continue to be amazing with Taylor. We are so blessed that they have huge hearts. They love her and still make her laugh like nothing else. They both did sport camps last week - Lauren played soccer, and Jacob played soccer, basketball and baseball. It was a big hit, except Lauren wasn't real fond of her shin guards and Jacob didn't want to practice dribbling, because "he already knew how to dribble".

I'll leave you with a few funny moments. The other day I was rushing around and putting away laundry - Lauren says "mommy, you need a servant". David jumped on her for using the word "servant", but she was just referring to Cinderella. She and Jacob are actually a big help around the house. The other morning (day after my birthday coincidentally), Jacob says "mommy you have 7 scars on your forehead" - those are wrinkles, son. You gotta love kids....they keep us moving and laughing and distracted, which is good for all of us.

Happy Anniversary, 4th of July, Baptism and more

The past few weeks have been busy, busy. July 3 was our 10 year wedding anniversary -we're both amazed so much time has passed already. We're so proud of our family and the great times we've had over the years. 3 precious kids, 4 houses, 3 remodels, 2 careers, and lots of great memories. We had big plans for our anniversary, but scaled back to stay in town with the kids. We both took the day off on July 2 and went for a wonderful 5 mile hike on Mt. Si, and then cooled off in the "grown-up" section at our pool (we'd actually never been in that section before). The morning of July 3 we left for Whidbey Island, where we celebrated our annual 4th of July week-end. We had a great time - we took the kids for a hike, David took the big kids crabbing, and we enjoyed bike riding, walking on the beach, and fireworks. I love Whidbey Island for the 4th - it feels like a small town, with small-town street parade, toy car races, and friendly neighbors. Taylor enjoyed watching the big kids play and crashed before the fireworks began. She and I hung out at the house, while the kids stayed awake for their first fireworks show. Lauren has been spooked in the past and Jacob has been younger, so this was a big year.

This week was great fun because Nana and Poppy (my parents) came to visit. They stayed for a few days before leaving on an Alaskan cruise on Friday. We enjoyed a lunch on the waterfront before saying bon voyage to the travelers. The kids were so excited to see them - Taylor grinned and grinned at my mom - I think she remembered her from her last trip in May. One night after the big kid's had gone to bed, Taylor stayed up until 10pm playing. Nana pushed Taylor on her riding Pooh for nearly an hour. Taylor soaked up the attention and had a blast. It's so good to see her having fun. Poppy saw his first therapy session Friday morning when Susan arrived. It was fun to compare notes with my mom - as always - it's easier to notice progress when you're not there every day. My mom saw lots of improvements, so it was good to hear the validation.

This week-end Taylor was baptised on Saturday night during the evening church session. This is an important moment for the Catholic church - in my Christian church upbringing, we would have called it "dedicated", but irregardless what you call it, it was a special moment for Taylor at church. Unfortunately it was hot and Jacob was restless. Our family was on the first pew of the church and participated a few times during the service. During this, Jacob left for a drink of water after about 15 minutes, desperately needed a piece of gum, played splash in the holy water, and at the end of the service, let out a big sigh followed by - "Ay, yi, yi...". We had David's family over for dinner afterward and it was a nice night. Taylor can get overwhelmed in groups of people - particularly when it's hot - so she and I disappeared upstairs for a few minutes to recharge.

All in all, lots of excitement and fun - mixed up with therapy, swim lessons, and happy (or tired) kids. We have made progress with Taylor's seizure medication - we finally have reached her full dosage as of tonight. We hope that she will settle in now that we've reached the full dose. She's still quite sleepy and taking 2 naps a day. I'm so hoping she will get more energy soon - they said it will take about 10-15days for her body to adjust, so we're hoping we're nearing the finish line of adjustment period. She is such a precious baby and we're so proud of her. I'll post updated pictures soon.

Ahh....summer

We are full speed ahead and loving summer! Over the past several days, David ran a marathon, Lauren lost her other front tooth, Jacob has won the hearts of the pool staff, and Taylor is sleeping well again!

We had a great week-end of sun and fun. The big kids and I spent all afternoon on Friday at the beach club and they had a blast - playing in the sand, jumping in the water and re-connecting with old friends. Taylor and David napped at home - so a great time was had by all. Saturday morning I packed up the big kids and took them downtown to cheer on David at the Seattle Rock-n-Roll Marathon. It was a bit crazy - 25,000 runners and lots of spectators, bands and cheerleader - but I think it's great for the kids to see their active dad. As lifelong runners, we both love for them to see people of all shapes and sizes focusing on fitness. They cheered loud for daddy at the 14 mile mark and the finish. It was quite exciting - David ran his personal best time and qualified for the Boston Marathon - quite an achievement and particularly amazing given everything he juggles. We are so proud!

We went to the pool Saturday afternoon and the big kids swam for 4 hours (!) and Taylor joined us after her (and David's) nap. She enjoyed splashing in the kiddy pool and it was great to see her having fun. David took the big kids to a strawberry festival on Sunday and we capped off the week-end with more swimming and bike riding. We love, love summer.

This week, Lauren has a tennis/golf/swim camp and Jacob has swimming lessons. They both love the activity. Jacob is a hit at the pool - all the girl swim teachers (high-school age) say "hi Jacob" everytime they see him. Somehow he is quite the ladies man. Today he had a playdate with a little girl from his preschool - she set up her room with her big brother's legos and a lightsaber to convince him to come over. As usual, he had a great time. Lauren also has had several playdates with her girlfriends and is loving her free time after the structure of kindergarten. She is going to a reading coach a few times a week and we're working with her on a few skills to help her get ready for first grade. All of the activity has resulted in worn-out kids at times. Sometimes we want to send them away for the summer, but most of the time it is hysterical. Yesterday I gave them both a time out for arguing and told them to "stay put and not make a peep" - as I was going down the stairs I hear Jacob say "peep, peep" quietly. Little stinker...Today Lauren had a bit of a meltdown and was sent to her room this morning. All of a sudden I hear "mom!, mom!" and she had literally lost her front tooth when blowing her nose. Her big, front tooth had been hanging by a thread for days - who knew you could literally blow your tooth out? She was a bit freaked out, but then excited - we've been telling her how excited we were for her to lose her two front teeth - she looks adorable. She is a bit freaked out by the tooth fairy though, so I will be sleeping with her tonight to protect her from the fairy and ensure she gets her fair prize.

Taylor continues to be a trooper. She is working hard during her early morning therapy sessions and still making progress. We're waiting for the next big breakthrough and trying to be patient as her second birthday approaches (August 22). She is delighting in seeing the big kids more now that school is out and they continue to make her laugh so hard. We're continuing to increase her seizure medication - she's 3/4 of the way to the desired dose and adjusting well. She is more sleepy than normal and has returned to taking a morning nap. Otherwise, she seems to be adjusting pretty well.

That's all for now!

Father's Day

Happy Belated Father's Day! My own dad was in Dallas helping my sister and her family move their house over the week-end. He and my mom have helped move us so many times - they are pro's and sweethearts for helping. I was quite pregnant for two of our moves (bad timing on the move part) and I'll always be thankful for their help - amongst many other things. In any case, I am thankful everyday for my wonderful dad!

And David, who deserves a great Father's Day any more than David? The kids and I tried to make it wonderful. All he wanted was to take a nap and watch the US Open, so the bar wasn't very high. We had a great week-end with the kids, enjoying the start of summer. On Sunday, we went for bike rides, played outside, watched a lot of US Open golf, and David got his nap. The kids were super sweet and shared art projects and their proud choice of the perfect golf shirt and shorts. They love him so much - probably the greatest gift of all. David's family came over for dinner and the big kids played in the backyard and had a blast. Taylor was a good sport and enjoyed the company.

Taylor was a bit tired and grumpy this week-end - we increased her dose again of the anti-seizure medication and we're beginning to see a pattern. With each increase, it takes about 3-4 days for her to settle in. We're half-way to the ideal dose, so it's good to see her continue to adjust. We think she's also struggling with "normal" growing pains - she seems to be teething and was very unhappy for awhile last night (awhile defined as 3-6am - yawn). David was a trooper and took the bulk of it - he finally threw in the towell and turned on Barney for her while he napped on the couch with her. We'll be excited for her to have more teeth - she still just has the two little ones on the bottom - we may need to look into dentures at some point...I kid...

All is well - the big kids are taking swim lessons this week (or as Lauren says - "stroke lessons, I can swim, mom") and loving it. They've been playing outside and enjoying their down time in the morning. Summer vacation is awesome - we want them to have a blast.

Taylor's last day of school!

Here are pictures of Taylor today at her last day of school.

Sunshine again

Sometimes I have very lame excuses on why I haven't written in awhile. Tonight I can honestly say that I didn't want to write the past week or so because I was a bit in the dumps. Or, as I would call the kids - I've been a "Grumpy Gus." Of course we've been plowing ahead - it has been an absolutely nutty few weeks of doctor appointments, end-of-school year activities, crazy times at work, and moments of fun. David and I both felt like a bit of a cloud was following us and it could be summed up in our concern for Taylor.

After the neurology appointment, we've started Taylor on an anti-seizure medication called Keppra. Anti-seizure medicine used to be really tough on people with lots of side effects. Thankfully, the medicine is much better now and we're taking confidence in our doctor, who claims 75% of kids with seizure can find medication that stops seizures with no side effects. Before we'd gotten over the initial shock that Taylor had epilepsy (rather than a random one-off seizure), we started the Keppra. We essentially build up her dose over several weeks to help her adjust to the medicine. The most common side effects are grogginess and irritability. There are, of course, worse things. But, for me, watching her go through several days of adjustment, both more tired and cranky (for her anyway) than normal has been incredibly hard. Mostly, we feel so badly for Taylor and want her life to get infinitely easier. It has been tough to see our Taylor, who all along we've been able to cherish her smiles, eyes that light up, and warm nature, not seem like Taylor. This has probably been my biggest valley since we started her therapy last year - we know she will either adjust to this medicine or we'll try something else, but we want this to be as easy as possible for her.

Thankfully, after a few tough days/weeks, she seems like herself again. We've only worked up to about half a dose (taken twice a day), but we're encouraged that she seems to be adapting. We're reminded again how precious each smile is, how special it is to see her laugh, and while we want so much more for her - we've been given so much already. As long as Taylor can be Taylor, we can deal with everything else.

The funk has broken and we're happy again, with our positive outlook returned. The big kids have had a ton of fun as their school year has wound down and summer vacation started this week. I was also feeling overwhelmed with the logistics of scheduling - with the big kids out of school, I wasn't sure how well we would juggle Taylor's therapy without burdening them. Susan gave us a big gift and offered to come to our house Monday, Wednesday and Friday mornings to work with Taylor. She shows up at 7am and leaves at 9am. David and I tag team while we get ready for work, feed the big kids, and make sure that one of us is with Taylor. It makes the morning a bit hectic, but we're so thankful that the rest of the day can just be about fun. And Taylor is freshest in the morning and we can hold off her mornig medicine until after therapy, so her therapy sessions have been going well. Our summer scheduling seems infinitely easier now.

So, life is good and we're counting our blessings. Today was Taylor's last day of school at the EEU and I was really amazed at the progress she has made in the last year. I remember her first day in September - she couldn't sit, her eyes didn't focus well, she didn't play with toys, and couldn't sit unassisted at snack time. Now, she can play (a favorite new game is practicing patty-cake - she's finally realizing her hands can be fun!), reach for toys, enjoy snack time, and she even rode a little bike at play time. She also can sit like a big girl at circle time. Each class the teacher brings out two stuffed animals at circle time and chooses one kid to pick which stuffed animal will sing the bye-bye song. Today, she chose Taylor and gave her the choice of a stuffed pig or cow. She very deliberately reached out and chose the pig and smiled so big. This is such a huge accomplishment for her - she connected with her teacher, heard the question and responded by reaching out (another big win) and grabbing the pig (using those hands!). When the teacher pulled the pig away to visit another kid, Taylor kind of whined - which is also very age-appropriate - she wasn't done with her turn yet! It's great to see glimpses of age-appropriate behavior, see her finding her voice, and able to participate. We are so proud of her first year of school and the progress she has made.

Epilepsy diagnosis

Well, the past week has been a dip in our rollar coaster of an experience. We had our neurology appointment on Thursday and did not receive good news about Taylor's seizure. Dr. Vlucek gave a very long-winded description of what they were looking for on her EEG test, combined with her brain malformation and initial seizure, ultimately led to a recommendation to put Taylor on anti-seizure medication. She was officially diagnosed with epilepsy - which we learned simply means that she "has the tendency for recurring seizures". We've now become acquainted with another condition we'd rather know nothing about.

To his credit, Dr. Vlucek spent nearly 90 minutes with us, educating us and walking us through his thought process. While her initial seizure was very quick, he said they are not progressive and just because the first one was minor, doesn't mean that future seizures will also be minor, or progress over time. Her EEG test indicated that she is highly susceptible to seizures in both hemispheres of her brain. They term this "multiple onset of partial seizures". He compared the spikes of her brain activity on the EEG to dominoes - they might stand up perfectly, but if the right combination falls, it can be very dangerous for her.

He said one to several seizures are typically OK, but recommended medication for Taylor to prevent future seizures. The goal of the medication is no seizures and no side effects. We've learned this can be a tricky balance and it may take awhile to get the perfect medicine cocktail for her. He said they can perfect it in about 75% of patients. Others either have ongoing seizures or side effects. The side effects aren't life-threatening, but can impact quality of life - namely excessive grogginess and irritability. We'd heard horror stories about how challenging the medication can be, but it sounds like the drug companies have made great progress and once you find the right medication, it often works really well. This was a relief - we were really hoping to avoid medication for Taylor. You just don't want to mess with her precious personality and tenacious work ethic, but we were convinced this is the right move. We will seek a second opinion, but it will probably take us months to get in the door of another neurologist and we'll start the medicine in the meantime.

Similar to the allergies, this is another potentially life-threatening condition, that -should- be managable with precaution and medication. Apparently "seizures can beget seizures", so the goal is to stop them quickly before the brain becomes conditioned to become seizure-prone. A short seizure is not terrible, but a long seizure can cause brain dysfunction, or if severe, death. We were told to call 911 if a seizure lasts 5 minutes (we'll probably jump the gun much earlier) - apparently it doesn't get dangerous until the 15 minute mark and few go that long (and paramedics can stop them). Typically a seizure needs to last 60 minutes to cause death. We had questions about flying or other remote possibilities where you might not be able to receive medical care that quickly and there is an option - dyestat- that is a rectal emergency medication that you can take with you if you're flying over the ocean for example. He said the plane was more likely to crash than to have a life-threatening seizure on the plane, but it does happen so you can be prepared.

Taylor had a tonic seizure, which means she stiffened versus a convulsive seizure. He told us to look for similar stiffening, eye rolling or odd eye movement, a vacant stare, or a weird cry that lasts a few minutes before falling asleep. If she has a seizure, we're supposed to lay her on her side and not put anything in her mouth. She will take a drug called Kepra, which has been FDA approved and over 500,000 kids have used. He said 2-3% of kids have grogginess with it and 5% have irritability/sleeping issues. If this is the case, we'll adjust her dose or try a different medication. They are slowly upping her dose over the course of three weeks to help her ease into it. She had her first dose today because we couldn't find a pharmacy that carried it and it took a few days to get her dosage. It didn't seem to affect her and we are really praying that she continues to adjust.

He said she might outgrow the seizures, although with her brain condition it wasn't highly likely since she's shown a disposition for seizures. If she doesn't have one for 1-2 years, they'll do another EEG and see if there is improvement.

The past few days have been hard - we just really didn't want her to have anything else to deal with, but thankfully this should be controllable. After the first tough day, we're rolling with it and hoping for the best - it falls in the "what choice do we have" category and we have to trust that it will be fine and pray for the best-case scenario - no seizures and no side effects. The next few weeks will be anxious as we increase her dosage (twice a day), so send her a few extra prayers.

Meanwhile, we had a nice week-end with the kids and saw several friends. Life, as usual, marches on and we strive to keep things normal for all of us. The past two weeks have been absolutely nutty with all of the doctor appointments and end-of-school year business. We're really craving a "normal" busy week. Thankfully, the sun has shone and Taylor continues to smile and make improvement with her therapy. We're hoping this latest bump doesn't slow us down again - we just got her ears working!

Endocrinology update

The latest Taylor update involves the endocrinologist. Taylor ended her big week on Friday with an appt at the endocrinologist -who we hadn't seen in nearly a year. We've had her hormone levels checked a few times, but this was our first appointment - mainly to make sure her levels were OK and that her growth was on track. Thankfully, this was a positive appointment. Dr. Dilchek is a friendly lady and was very pleased with Taylor's progress. It was interesting to recap our year - allergies, seizure, therapy, neurology and everything in between. She said it was amazing, and great, that we've avoided medication with all the complications we've seen.

The good news - Taylor was on the growth chart! Barely - she is 3% in height and head circumference - a little less for weight. It's great that she is continuing to grow proportionately and following a positive growth curve. It's not a surprise that she's a peanut - but we're thrilled that she's on the chart and no obvious reason for concern. After her appointment they took an xray of her hand/arm to check her bone age (and to compare to last year's xray). We took her back on Saturday morning for them to take 3 vials of blood- the most they can take for her size. They are doing a full blood work-up to make sure all looks well. We wanted to give her a day break since she just had her surgery on Thursday.

Phew - poor kid, but she continues to roll with it very well. She's a little trooper and we're so proud of how tough she is. And thankful that we had a good appointment!

Taylor has tubes!

Taylor made it through surgery wonderfully. It's amazing how quick the procedure is. We got there at 6:15am, her surgery began at 7:30am and we were home by 8:45am. Yet again, we're so thankful that we live just a few blocks from Children's Hospital.

Taylor was such a good sport. She woke up smiley when I got her up out of her crib this morning and she didn't even cry when the nurse took her away. We were anxious, but the anesthiologist set our fears at ease - he said the anesthesia would actually prevent seizures because her brain would be relaxed. She came back from surgery quite sad - that was hard, but we knew it was just the medicine wearing off. She was sad for about an hour and then she finally fell asleep on my chest. Once she woke up about an hour later, she was fine all day. I hope her ears feel so much better.

The surgeon said her ears were fully blocked with fluid and it was a very good thing we had her get tubes. He said it was so much fluid that her hearing was definitely impacted. We're so thankful the surgery went well. This surgeon has been doing this procedure for over 30 years and he said this was one of the harder ones because her ears are so little. Even though she is 20 months old, she is tiny - with tiny ears. He said he almost wasn't able to get the tube in one ear, but was able to do it. Thank goodness!

So, we're thankful that today went well and hoping for many months of great health ahead!