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?