The Rett Clinic, not what I expected

Last Friday we made the brave journey all the way to Oakland to Katie's Clinic for Rett Syndrome. So maybe it wasn't that harrowing of a drive, but I really don't like roads with more than two lanes and this trip involved lots of freeways. For this journey I was blessed to have Kat come with us. I love Kat for a lot of reasons, I might at some point just blog about that, but for now, here is a short list. 1. She accidentally taught Chloe to say 'dude' just by modeling it. 2. She wears jeans a t-shirt and either vans or cons, just like me. 3. If she were to be a character from a book it would be Amelia Bedelia 4. She has no other affiliation with the special needs world other than Claire, but she loves her and treats her like the normal little girl she is. 5. It is impossible not to have fun when she is around. And yes, that is the short list. Anyway, we got there and I got right to embarrassing myself. While Claire and Katie (as in Katie's clinic, she is such a cool girl!) hung out I went up to the desk to ask if I needed to fill out forms, sign something and offer insurance cards. Turns out the lady sitting there was the neurologist, not the receptionist, oopsie! I honestly don't remember much of what was said during our appointment with her, she started with how old were you when you had Claire and my brain went numb from there on. I do know that we are looking into booking ourselves a lovely suite at LPCH for a long EEG and hope to get the activity on the monitor before any decisions are made. As soon as we were done with the neurologist we split and went to Fenton's to meet up with Erica and Nolan. Really and truly, this was the absolute highlight of the day. No, it wasn't the highlight because the ice cream was so good, although, it was very good. It was a simple text and a small thing that made it. I have known that Erica is a great friend, then as we planned this a week before she offered to get there early and save a table so we wouldn't have to wait. As we drove there, yes, again I was running late, she texted me and asked if she could order food for the girls. I know it sounds really cheesy, but it was then that I thought to myself just how great my life is. I have the BEST friends. We got there and again, I was humbled by a small thing, Kat sat between the girls. Restaurant etiquette states that the point man be strategically seated between the two children and the wing man on the end. With Kat running the show, I was not only able to chat with Erica, I even got to eat while my food was hot, amazing! Chloe and Nolan did there typical super cute kid stuff, Claire ate an entire bowl of ice cream and we shared a lot of laughs, it was great!!! We went back late, but with such such a lightness in my heart, it was great! The second half of the appointments was about 4 hours. We saw a lot of people who all seemed to share the same opinion, Claire is doing great! I guess my work with her is not done for now, rather keep it up, but we just have to maintain. While that really is a best case scenario, it feels like I am being asked to drive across the country at the exact same speed with no cruise control to keep the bomb from going off. Keep it up, for longer, um, I think I can, I think I can... but with friends like this, it really isn't a question, I know that they will be with me for the drive and if I swerve off the road or the bomb blows up, they will be there with me through that too. All that to say, the doctors, not all that exciting, but I have some really great friends and I am very grateful for.

Field Trip!

Since Claire has started kindergarten, she has 35% of her day in inclusion with a mainstream kindergarten class. Last week they went to the children's discovery museum and Claire got to go along for the whole day! I knew that I had to go guarded but that I would have to go. I drove Claire, her aide and another little girl from the class. Lucky for us, there was an accident so the 40 minute trip took an extra hour and used up all of our boredom margin in the process. Once we got there is was a little rough at first. The first exhibit I saw the kids playing in was the access/ABILITY. This was the exhibit that the teacher was so excited about for her peers to see. See it they did, one girl played in a pediatric wheel chair and wheeled her self around. How horrible is it that I watched this all I could think is, that is hardly disabled, sure they can't walk, but that's it. Show me a blind person with CP, that is disabled. I don't really think mean things about people who are confined to wheelchairs. really, I have friends with that singular handicap and it by no way shape or form easy. It just seems like what we have is so hard! So hard that an exhibit would never even think about ABILITY on our level, what it takes to get Claire to participate in life. So with that I sat hiding in a corner after a short time I could hear Claire as she was clearly not happy and her aide didn't have a clue. I stayed back and really tried to let Lupe, the aide, do her thing, but she didn't so I stepped in. I have to remind myself that Claire is in an autism classroom and the aides are trained to work with that population, it is easy to forget that Claire works very differently because similar behaviors present. So Lupe was trying to calm her sensory system when I stepped in. I asked a few questions and figured out that Claire was lonely. Lupe had been playing one on one with Claire, while Claire wanted Lupe's help to play with her friends, a very different thing. Once we figured that out, Claire did a little of her heart wrenching sad crying and calmed down. I can't imagine what it would be like to be 5 and want to play with your friends and just not have the ability to get the grown ups around to help, so I really think the screaming was fully warranted. I took them to find the classroom teacher Mrs. J who would know who Claire's friends were. She pointed them in the right direction and Claire was happy as a clam. The teacher also took the time to ask me questions about placement and weather or not Claire was in the most appropriate class. I know she was well intended but it pretty much came across like, "I don't think this is good for her." Sigh. I know it is hard, but sadly, it id the best option and it took me about 15 minutes to explain this to the teacher, not sure that she ever got it. Claire went on to make a corn husk doll and play in the clay room where she again got a little upset, only because she was starving and a little snack fixed that quickly. By that time I had also showed Lupe how to use the yes/no cards, that helped a ton! We finished up with face painting, where one of Claire's friends, the little girl in the car with us, painted Claire like a tiger. Claire loved being a tiger, loved! We sat and enjoyed lunch on a park bench with her peers and left happy. I am so glad that Claire gets over things faster than I do, her perseverance continues to amaze me. In the end, we did it! We went to the museum and we left with smiles on our faces, I do think that it will be a long time before we go back though.



On a side note, I want to share this very exciting research. It pretty much says that what we are doing really works. Putting Claire in a rich environment really is critical to her brain development, so we will most likely continue to torture ourselves with fun stuff like this until we get the medicine in the trial, in which case hopefully we will be able to do the same fun stuff, it will just be less torture because her brain will fire better.

Clinical Trial For Rett Syndrome Launched

Study marks the emergence of disease-modifying treatments for autism spectrum disorders

BOSTON, Dec. 16, 2010 /PRNewswire-USNewswire/ -- Researchers at Children's Hospital Boston have begun a randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome, the leading known genetic cause of autism in girls. The drug, mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), is already FDA-approved for children with short stature due to IGF-1 deficiency.

The trial, now enrolling patients, marks the beginning of a trend toward drug treatments seeking to modify the underlying causes of autism spectrum disorders, rather than just behavioral symptoms such as anxiety or aggression. It follows research in animal models, published in 2009(1), which suggested that raising IGF-1 levels can reverse features of Rett syndrome by enhancing maturation of synapses —the points of communication between brain cells.

"We expect that therapy that stimulates synaptic maturation will serve as a model for pharmacological treatment of not only Rett syndrome, but of other autism spectrum disorders," says Omar Khwaja, MD, PhD, the study's principal investigator and director of the Rett Syndrome Program in the Department of Neurology at Children's.

Rett syndrome, occurring almost exclusively in girls, is an X-linked neurodevelopmental disorder causing severe cognitive, motor and language problems and autistic behaviors. Other features include loss of purposeful use of the hands; repetitive, stereotyped hand movements; slowed brain and head growth; and heart-rhythm and breathing problems. Although affected children appear normal during their first six months of life, symptoms emerge, tragically, between 6 and 18 months of age, a prime period of synaptic development.

The three-year pilot study will randomize 40 girls (aged 2 to 12) with Rett syndrome to receive the drug, known as Increlex® (Tercica Inc., a Subsidiary of the IPSEN Group) for five months. The study will use a cross-over design, allowing girls assigned to placebo to switch to active treatment after a six-week "washout" period. The main outcome measures will be improvement in neurodevelopment and in cardiorespiratory function.

Although Rett syndrome used to be seen as a degenerative, irreversible disease, recent research indicates that brain cells aren't actually lost, and the brain is structurally normal – instead, the synapses between cells are weak, preventing brain circuits from maturing. Rett syndrome's usual cause is mutation or deletion of a gene called MeCP2, which itself controls a group of genes that regulate synaptic changes in response to input from the environment. In 2007, working with a mouse model of Rett syndrome, researchers used genetic tricks to restore MeCP2's function in the brain.(2) The mice showed a striking recovery, suggesting that Rett syndrome, even when well established, might be a treatable disease – if only synapses could be built back up.

"This was an enormous intellectual proof-of-principle that we aren't wasting time thinking of therapies for girls who are already symptomatic," says Khwaja. "Before, it was thought that if there ever was a treatment, it would have to be given before symptoms appeared, and that once the disease started it couldn't be reversed."

IGF-1, the drug used in the trial, is indirectly regulated by MeCP2. It has been shown to enhance synapse maturation, and in mice missing the MeCP2 gene, treatment with IGF-1 ameliorated several features of their Rett-like disease.(1)

"There's been a big sea change in how Rett syndrome and other neurodevelopmental disorders are viewed," Khwaja says. "The synapses are very dynamic. They need to be stabilized, and if they don't receive the right stimulus, they'll naturally disappear. That change in paradigm has really affected the way that we look at treatments, and I think it brings a lot more hope."

The new view has already affected the way schooling and education of children with Rett syndrome are being approached. "There's more and more evidence in animals that enrichment and schooling can help synapses form and strengthen," says Khwaja. "The battle is getting the girls into appropriate educational settings. If you are repetitive, and give them ways to communicate, they actually can learn, and that's probably because you're reinforcing these synaptic connections."

The clinical trial is funded by the International Rett Syndrome Foundation, Autism Speaks and Harvard University's Catalyst Pilot Awards for Clinical Translational Research. For information on enrollment, contact Katherine Barnes (katherine.barnes@childrens.harvard.edu; 617-355-5230) or visit www.childrenshospital.org/rett.

My Little Slice of Joy this Season

It might not look like that exciting of a picture, just some dirty dishes, but to me, they are so much more! With the background that I have in pastry, I love the candy cane and gingerbread Christmas themed stuff, for several years I had the honor of assisting on gingerbread works of art at the Westin and I am forever changed. In my soul I wish I was in the Midwest snowed in a baking cookies and other such holiday traditions that are cultural like that. So a few years ago, when I saw this set of mugs and dessert plates with joy on them, I decided it was something that I had to have. They have been very safe in my cupboard, although they have been lonely. Since getting them in 2008 I had yet to use them. Tonight was the night that that changed and it was wonderful! Not only did I get to use my plates and mugs, I got to cook for friends, which is one of my favorite things to do in the whole world. Erica and Maren came over for our advent conspiracy type craft night. I really didn't do much, I was more in a management role really. I had hands available to hold a tight knot or take excess trash away. Erica was the mastermind behind it all, doesn't she look crafty!
Maren, well, she gave a good effort, you can see that she had a few challenges. I kid, Maren is the craftiest of the crafties. She just happened to have a little bag of hair clips and earrings that she had made (who makes jewelry more or less wear it???) and left the cutest pair of little purple flower earrings that I think a certain 5 year old will be pretty happy about in the morning. Anyway, back to our night. I could go on and on about how we laughed, made a mess and sent Jared to the grocery store. It is a good story and I suspect pieces of it might end up out in the blogoshpere from my partners in crime. But for me, I just liked having friends over, a lot. I have been really blessed to get to have two moms like this close enough that they can come over, even if it is a two hour drive.

Down and Up and All Around

I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!

This is huge!!!

It will be three years in October since we have officially been in the Rett family. I remember the permanence of the diagnosis really hitting hard. Up until that moment, I really thought that she was going to catch up, she was slow, but not disabled for life slow. I was telling a close friend about the news and somehow the topic of travel came up. At that moment, it really felt like I was never going to be able to go anywhere without Claire and honestly it wasn't much fun to go places with her. I was the only person on the planet who could read her. At the time Jared could handle her for a an hour at home and we had a babysitter who could sit here while she slept, but that was it. I felt like my dreams of traveling to Europe to see art that I had studied would certainly never come true now. Really it didn't seem to matter that much, when you think that your kid is going to die, giving up a life of travel isn't a big deal. I am just starting to realize that the day that we got the diagnosis was really the death of a lot of dreams, dreams I didn't even know I had. It has been a very long 34 months and it has flown by. Claire has taught me so many things, there is so much that I didn't know I needed to learn, a true eye opening experience. Fast forward to today, not only am I not the only person on the planet who can keep her alive, she is loved by so many and thrives when I am not around. As I sit and type this I am so giddy and excited for the upcoming weekend. In 60 hours I will be in another state, not because I need to see a surgeon or because my mom is ill. I am going to Vegas because I can! I will be joining up with 9 of the most amazing moms that the planet has ever seen. It will be epic, there is no doubt about it. For me, even bigger than all the fun and community I will get to have, it's a dream. If I can leave Jared home alone for two night with both girls, that pretty much opens the door back up to anything that I can think up. Who knows, maybe in 15 years I will be blogging about the stress of packing for our trip to Italy and wondering what to put on Claire's ipod for the flight.

Ain't No Mountain High Enough

It was a whirl wind weekend, but it was fabulous! Going to Colorado and back in less than 60 hours was a pretty crazy thing to do, but I am so glad that we did it! The weekend was packed with lots of opportunity to listen to some really remarkable people talk about Rett Syndrome and it's many facets and what we can do as parents to help. It is way to fresh to know what we heard in much detail. I am hoping that after I sleep for a few more hours my memory will come back to me. I have noticed that I am talking funny now after being at the conference. For example, we stopped at Chipotle on our way to the airport after a very long day of listening about lots of super important stuff. They were having happy hour, if you buy one Corona they give you a second one with chips and salsa for free, sold! Jared and I both stick our limes in and in the moment that you normally tip the bottle slightly to mix up the lime, I completely spaced out. If you do that for too long, you make a beer explosion, which I certainly did. But what was the first thought, clearly my synapses are not firing correctly and I don't have an established motor plan for this (lately I have been sticking to North Coast Brewing= no fruit in beer) so of coarse there was a significant delay. Jared tried to tell me that he has communication apraxia and that when I tell him something that he needs to do, it only slows him down, clearly we listened way too much at the conference. On a caretaker level it was nice as I felt like it was way more affirming than Chicago was two years ago. We are actually doing some things right, who knew?!? Claire had the honor of getting her picture in Dr. Jone's presentation about an enriched environment and Judy Lariviere shared a story of Claire's recent success with her device with the one of the larger groups that she spoke to. There are plenty of things that we learned that have us fired up to tweak or change for Claire, but really I need to sleep before I can try to remember what any of those are. What is fresh and in the front of my memory are the good times that we had with friends, both new and old. I did feel a little odd when I met one mom that I knew through the blogosphere for the first time. As she would tell a story I could interject details because I had read her blog, awkward! But the coolest thing about Rett families is what would normally be an awkward conversation isn't. They get how much the 3rd birthday sucks and the stress of a nap that goes too long or feeling like a failure because you didn't realize how much pain your daughter was in after a fall and the crazy stress of super complicated hospital bills. They are normal just like us. That's right, you read it right, normal! Because in Rettland everyone worries about seizures and weight gain and it is normal, and honestly, I like it there. Of coarse if there was a cure I would leave in a heartbeat, but so would everyone else. While we were gone the girls had a tremendous amount of fun. We surprised Claire with the game Pretty Pretty Princess once we were gone and from the pictures that were taken(at the top), it looks like she enjoyed it! From the looks of the pictures Chloe had a good deal of fun as well. Then again, when has she ever not?

Feeling Blessed

Things are starting to slow down enough that I am able to think a little and feel as I move through the days. I hate it when I go through a day and know that there were a lot more blessings in it than I saw. Friday was a little intense. Claire got out of school two and a half hours earlier and the two previous night Chloe had kicked our buts. Then our nanny called to say that she was at the doc with strep and wouldn't be around any time soon. So I pretty much freaked out and felt so overwhelmed. Then, I assume by the grace of God, I found the strength to take a deep breath. So glad I did! I had so much fun with the girls that day. Then Saturday we went up to Oakland and had a nice relaxing morning at a street food festival. As I sat there feeding Claire, of coarse with people staring, I was thinking how blessed I am to be able to share my love of food with her. One of the suckier things about Rett is that often the girls have to get a feeding tube to keep weight on. Claire still has very good control of her mouth, so every day we try to put the yummiest food we can find in it. I am finding the richest and most amazing moments that I get to have each day come out of really hard things like this. I guess that has lead me to start to cherish the tough things, because ultimately, they truly lead to such sweetness. Like talking on the phone with my mom or watching Claire take 8 minutes to wiggle out of bed. Maybe they are just everyday things to most, but because of some hard circumstances they have turned into the biggest blessings. So I sit here this morning and think about my life and I just have to say how amazed I am that I have gotten so much blessing, far more than I ever could have imagined.

Fun Day

Today was "Fun Day" for one of Claire's preschool classes. When I first heard of this I had to smirk. My dear friend Melinda has "Fun Friday" with her kids every week, Claire's autism school does it once a year. So this morning we woke up, excited for the big event. Well, Claire and I were excited, Jared a bit more on the terrified end of the spectrum. We actually got out of the door with both girls and to the bus stop on time, something I never would have thought we were capable of, I reveled in the achievement. For our first act of fun we jammed to Jimmy Eat World in the car. We can't figure out why, other than exposure, but Claire loves to rock out to their older stuff. As the day went on, Claire got to have her first ride on a school bus, she chose to have a yellow and pink flower painted on her cheek and then she got to ride a pony with her dad. Unfortunately, during all this fun we figured out that Claire has horrible allergies. Her coughing got really bad and we had to leave early. Before we left we got to see some other parents and some of the staff from the school. One of the nice things of an event like this is seeing that you aren't alone. We can joke with the other parents and they get it because they have similar issues. As we were loading up the car Liam's parents, asked about bringing over some dinner. When I declined they then offered dessert and beer. I responded that real friends bring booze when you have a baby, their reply, real friends bring you beer and have one with you. I loved it! It was a total aha moment for me. We are surrounded by the greatest friends. We have had the blessing of friends to laugh with not just since Chloe was born, but for a while. Some are near and some far, but I am truly overwhelmed by the blessing of friendship from so many. Thank you to all of you.

Frameshift

I was recently saddened as I read the pain that a friend of mine was going through. She too has an amazing little girl with Rett. The day came for her to go to the DMV and get her disabled place card. She described it as a hard, tear filled experience. Her blog was filled with comments from other families that too have taken that difficult trip. It got me thinking. Why is it that we view disabled people the way that we do? I thought about my experiences growing up. Honestly, I can't think of any with disabled people. I imagine that is the way many people are raised. Because it is something that is so far removed and foreign, we begin to view it as something bad. If I had a dime for every time I have told somebody that Claire has Rett and they respond with some sort of devastating reaction. I wish so badly that that wouldn't be so. I am so convinced that God has already and will continue to do great things through Claire, using her even the way that she is. Having a child with Rett Syndrome is definitely not easy, it it very hard. But it seems that to compensate for the added degree of difficulty, it is so much richer. I never would have thought to ask for this, for the "disabled for life" club, but I have to say, it has the most amazing members. I am grateful for this "frameshift" it has enabled me to see the world differently, using more of a panoramic type lens.

The picture is from Saturday, Claire has really taken to playing the Wii with her dad, she can't get enough!

We went with the less traditional Christmas this year. Christmas Eve we spent with our neighbors sharing a lovely meal. Afterward the children played and we finished with a birthday cake for Jesus. Once the sugar wore off and they were asleep we had some much needed adult time, complete with carols by the lights from the tree, while the boys had some Hennessy (Jared's contribution to the post). Christmas morning we laid low and called our family. Then it was off to the hospital to hang out with our friends Dani and Bobby. How we had such a nice time sitting in a hospital room for several hours I don't know, but we sure did. It was such a blessing to see how Claire uses her powers of cuteness to encourage people. She has such an amazing story to tell, and she tells it well. We returned home and the little thing was exhausted and slept. She woke up so happy and pleasant. We walked to the table to dinner and we were amazed at how well she did. We thought that we would push our luck and try on our way to brush teeth afterwards. This time we were a little more prepared and used our nifty new "flip" camera, complements of DNA :-) So here, we share our Christmas gift with you. There isn't anything that I could think to ask for that would be better than seeing Claire make progress toward walking independently.

Learning a Lot

August 22nd I walked over to the school district office and signed the releases to start the process to review Clarie for preschool. I can't believe all of the ups and downs we have had on this journey since then. The psychologist calling to say it shouldn't take more than 10 minutes to meet with Clarie as there was so little to work with. The augmentative communication specialist coming and being blown away by how advanced Claire was and how well she understood the concepts. The IEP meeting where I got to argue with the OT to have the word "degenerative"removed from the report. Over three months of process and we ended up, the day before Thanksgiving, wondering when it would end. Then I got a call. Claire would start school on Monday.
Dec. 1 8am we headed out the door with enough time to go and stop at Starbucks and get a kiss from Andrew, Claire's favorite barista. When we arrived at school Brad came out to help us to the classroom. With a stroller and a walker, it is a project to get everything in. Claire was so excited to see Brad, it just so happens that he is also Grace's (Claire best buddy) dad. He did such an amazing job of talking with her and explaining the system. I think that she has a much better understanding of the process than I do at this point. Since they assume that I am a neurological typical, I get less explanation. We hit a rough spot when she fell sideways while standing in her walker and then screamed for about 35 hours, I mean minutes (it felt longer). It is hard to describe how isolating the first day felt. Here I am in a little cubicle with Claire screaming and biting herself with people staring and so much going through my head. This was touted as the Cadalic program, a place so many people wish their kids could get into. But it is so clearly not designed for Claire. I could hear the voice of the school district rep in my head, "Their just isn't a good place for her." As she is screaming I am thinking, if this is the best, how are we going to make it work. Yes, we were in the Cadalac program, but Claire needs something more suited to driving in the mountains in a blizzard. She stopped screaming, we played a little and the teacher told me it was time to go. Since then it has gotten better. Maybe it was good that they were able to experience the entire rath of Clarie in the beggining as a warning, as to say, be careful, you don't want to go there. There are still a few bugs to work out, but we are all learning, and Claire is too. The picture is of Claire, excited and just about to leave for her first day of school.

An amazing weekend

I know I am still posting a little late, but our weekend was just too rich to keep to myself. It started for me at 4:15am Saturday morning as I left for work. It was such a fun day a Starbucks and I got to work over 7 hours, something that doesn't happen often. Customers were coming in ready for the beach and in a good mood. It was one of those days where even when things were going off a bit, there was excitement and intensity and everyone was having fun with it. The highlight was Claire coming in with Jared, the look on her face when she saw that I worked there was puzzled at first then she released a big grin. It is one of her favorite places to visit, she gets a disgusting amount of attention when we go there. We spent the afternoon just hanging around the house, riding the tricycle and other such fun that is appropriate for warm summer weather. Sunday we were off to the church gathering early in the morning and then home for lunch and naps. When we were back up it was off to Kelly's Bakery to meet our friend Tim. There is something about sitting on the patio with iced tea, a cookie and the sunshine that just helps me to let go. A bunch of wineries just opened tasting rooms in the same area so we walked over and the boys were excited to find a local vinter with an amazing complex pinot noir and a port that will be released in December. We thought that it had been a perfect day and we started to head home. We then decided that we would take Claire for a quick ride on the carousel. So we went to the boardwalk, rode the carosel, got a big cherry icee and played in the waves before sitting on the beach and watching the sun set, with, I kid you not, a few dolphins frolicking in the bay. It is times like this that remind me how little I am, and that if I sit back and watch God be God, it will be a lot more beautiful. The picture is Jared and Claire once we finaly made it home.

A diverse pallatte

One of the great things about living so close to the ocean is that there are lots of yummy things swimming around in it. Friday a friend went fishing and captured a bunch of rockfish and crab. As you may know I am a huge fan of slow food, it doesn't seem to get slower than this. We were invited over on Saturday for Ciappoino to celebrate the catch. As the soup cooked we sat around picking out nuggets of crab meat and thought that we would see if Claire enjoyed the sweet richness of the crab. Turns out that she is a crab eating machine, who knew. She also seems to enjoy calamari even when it is not breaded and fried. The soup was spectacular. I found it best to avoid using a spoon by using several pieces of fresh bread to soak up the tomatoy goodness. Claire's feeding extravaganza continued as she enjoyed pancakes and crisp bacon this morning. We then went to church where she got to play with the other kids her age. When we picked her up we learned of yet another culinary delight that she seems to enjoy, popsicle sticks dyed red and covered in glue. Who would have known? This is Claire's "Tower of Babble," I love how they were able to incorporate her different sounding speech into the lesson.

A rich weekend

It was a wonderful fall weekend for us. It started with the first rain. Jared spent the morning up at Mount Hermon in the trees and Claire and I stayed home and cuddled under blankets and watched the rain on the window. By afternoon it had cleared so we were off to the harvest festival at the farm at UCSC. Jared had been to the campus before, but it was a first time for all of us on the farm. We went with my friend Colleen who studied and interned on the farm and new all the ins and outs and cool things. Claire really liked getting her face painted. My favorite things were the grilled corn on the cob and the squash that I purchased to cook up later this week. Jared enjoyed the fresh pressed apple juice. Of coarse there were so many things to love, the bluegrass bands, the hay ride, u-pick sunflowers, apples right off the tree, and so on. It was so amazing to see how they are training up farmers to go out and use sustainable practices and all of the different aspects that it involves. Sunday we tried to sleep in, but Claire didn't. When we woke the house was 66degrees so we lit our spicy candles and started cooking in the kithcen. I spent most of the day at an amazing canning workshop where I made apple butter, quince jelly, and canned pears. It was such a great celebration of the bounty that God provides. I love that we are preserving it now so that when it isn't growing here in a few months I will be able to crack open a few jars and not go buy fruit imported from Argentina or fake fruit soaking in corn syrup. Jared and Claire went to church, where she made her debut in the preschool classroom, very exciting. To to put an exclamation point on the already great weekend we went to a birthday party for our friend Tim. It was at his parents home which is nestled into a redwood grove in the Santa Cruz mountains. As we arrived there were 4 deer in the meadow about 2 feet from the car. Claire just loved the deer. She also loved thebig red barn and the garden that she got to eat tomatos out of. We left tonight amazed at what a rich life God has given us. Amazing friends to enjoy all of the glory of fall with, we are so blessed.

A busy weekend

We had yet another rewarding and exhausting weekend. Saturday we headed up to Oakland for the natural history study. It was fun to see the doctors again and it was nice that they did not bring up any new concerns. We saw many families that we had met before and also made a few new friends. One of Claire's friends is Roxie, in the picture she is wearing the green outfit, and we have been able to see her twice in a month, very exciting. The picture was taken at a golf fundraiser while we were in Arizona, I couldn't get all of the girls in the picture because of the cactus, but I got almost everybody. After a long day in Oakland we came home and rested and got to go to church on Sunday. We have missed our friends and getting to go to the gatherings and worship and learn. It felt so good to be back, three weeks is too long to be away. Now it is Monday and we have what feels like a million things to do. First I have to feed Claire as she is just waking up and the therapist is due here in 5 minutes. Looks like it should be another adventurous week. I know that I haven't been updating here very often, after we get done with the transition into Claire being three, I hope to get back here more often.

Having fun in AZ

We have been here a few days now, long enough for the dust to settle, and we are having a great time. It is such a blessing to see Claire and her acomplishments through the eyes of my friends. Today we had the pleasure of spending some good play time with my friend Kathleen and her two boys. Kathleen was so excited to see Claire in her walker chasing the two boys around the living room. She might not be fast, but she is smart and we had a great time with it. It is so easy to forget how far we've come when you look at all of the things that you are working on in that moment, last time we were playing together Claire was struggling to stand and watch the boys play, she has come so far! Next we went to the park and Claire turned herself into a sand castle while the boys monkey climbed all over the place. It gives her such peace when she gets to play side by side with other little ones. It is such a good remeinder of the perfect little girl that she is and that she is "typical" in so many ways. I have also found myself thinking about how perfect God is that He would create her this way so that I can learn these lessons from her. I am so humbled that He would give me this incredible gift and everything that I need to take care of her. Now that there is a picture, Sam in the stripes is 5 weeks older than Claire and his brother Gary is a year older. The question is, are they giants, or is Claire a minature?

The glass is a quarter full

Last night I had the opportunity to spend a little extra time with some friends that I have made working at Starbucks. It is really fun to have one foot in a world that doesn't involve therapy or advocating or genetics talk (not that I don't love that stuff, I do). During this time I also got to enjoy one of the best cappuccino's of my life, which was really good for my soul. As I sat there thinking how I have got to do this more often, my friends got to a discussion that involved the glass being a quarter full, I love it! That is really where I am at. Sometimes Jared thinks that people have no idea that our life is so hard and complex because I put on a good face. I have been thinking about this concept against the back drop of Psalm 118. God has blessed me with so many amazing days, many filled with my sweet little Claire. Although it is hard sometimes when people ask questions, it is so rich at the same time. Recently Claire's little buddy Grace came over for a few hours. As we were in the car on our way to have Claire fitted for new AFO's (little plastic boots that go in her shoes) Grace asked why Claire needed to go to the doctor. I responded to the affect that the boots would help Claire to walk better. The next question fired off by the sweet 3 year old, when will Claire be a big girl like me. I tried to explain that Claire is a big girl. She is sleeping in a big girl bed and using the big girl potty, and soon she will be 3 too. Fortunately I think I bored her to death with my reply and the next statement was beautiful. Grace looked at Claire and said, "I love you little Claire, you are my best friend." As I fought back tears I represented Claire and told Grace how Claire loves her and that she is Claire's best friend too. As I go through these moments it seems that it could be devastating, but so beautiful that God gave us a sweet little Grace who loves Claire, even if she doesn't talk. So I think that I am going to go with the glass as being a quarter full, but really, I am not entitled even that. I haven't put pictures up in a bit, if you would like, I have added to my flickr page, we were in Monterey on Saturday.

Helping the bees

Today we got to have lunch with Grace and her mom, Colleen. As we sat and chatted Grace headed to the flowers to play. She drifted farther from the table and Colleen asked her to come back closer to the table. Grace explained that she was helping the bees to pollinate. Colleen was so patient while she explained that the bees didn't need her help, they could handle the job themselves. It was a moment in time that my brain clicked. I am so busy trying to help Claire to do everything that I want her to do. Truth be told, God has the situation under control. He is so good at that stuff, just like He made the bees perfectly to help the flowers, He is perfectly caring for Claire.