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.

Enough?

How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was right in the front of my mind. I wanted to go as long as we could before having to advocate and fight. At that time, the idea of a severely disabled child seemed so far off, and in some ways it still feels that way, in others it doesn't. Claire is doing very well right now. By very well I mean that she wakes up alive in the morning and is present throughout the day. Sure there is a lot of screaming and crying and she isn't doing any brand new things that are mind blowing (like standing up and walking away) but she is doing small things that I had forgotten to hope for. With that said, it doesn't seem all that broken. But then we talk to other families, learn what is working for them and a mean little voice creeps into my head, maybe we should be doing that too? Why is it that being content with this is so hard?!?!?!? It is certainly guilt and fear driven, what if there is something that I could have done more of that would have made a difference? Well, I guess we will just never know. I am mentally psyching myself up, today we go over the hill and through the city to Children's Hospital Oakland, to Katie's Clinic for Rett Syndrome. I had hoped to not go this year, but with the creepy seizure or neurological craziness that is going on, I called and they were able to get us in. These people are the experts, they see lots of girls and know all the stuff to recommend. They know what kind of equipment might help, what type of therapy to do and other stuff that I wouldn't know. We normally get a report a few weeks later with a short list of things to do. But honestly, I don't want a list, I would like to be done please. I would like to hear that I have done all that is humanly possible and that I can just enjoy Claire the way she is and not worry about the future. Is that too much to ask? I know that won't happen, at the minimum I see a long EEG in our future, maybe some seizure medication. Perhaps somethings for scoliosis and advice on getting BMI up. So here goes, off I go to walk that fine line, advocating and getting what Claire needs, but not getting greedy and trying to get things for her just because we can, enjoying her for all the joy that she is while grieving that we are going to a hospital because her body doesn't work right, and of coarse getting some ice cream along the way.

LPCH, where everyone's the same

Yesterday was a pretty routine day for us, with the exception of a little trip over the hill to LPCH for Claire to see the eye doctor. Jared decided to take the day off so that I would be spared from taking Chloe along to Claire's appointment. After dropping Claire off at school we started the day slowly with coffee and a walk down to pleasure point, to say that it was epic is indeed an understatement. As we walked and enjoyed the sound of the waves gently crashing we did the download on all that the day contained. I really wasn't that worried about the trip to the doctor. It was a routine appointment and the worst that would come of it would be glasses. Funny how even on a good day, with the sunshine on my face and my husband by my side to help, deep down in there was a little bit of fear. We have so many memories from LPCH. Most of them involve needles and Claire or some sort of doctor telling us how worried they were. As much as I tried to believe that today would be different, a little voice inside me quietly whispered, she still has Rett syndrome. With that I was able to soak in the beauty of our morning walk and knock off a few things on the to do list before it was time to get Claire and start on the day's journey. We didn't have much traffic and we actually got there on time, which in itself is a small miracle. After checking in it was time to do what everyone else in the busy waiting room was doing, wait. It is an interesting area due to the variety of doctors serviced by that area. The lab is there, so you can hear young kids screaming as the friendly vampires do their best to stick them with needles and suck their blood in the gentlest of ways. There were a few people in wheel chairs and lots of people with glasses as the clinics that were open today were the orthopedist and the optometrist. A sweet and healthy little boy that was standing in front of us turned to look at Claire and said with so much care in his tone, "Did you break both of your legs?" She smiled and I told them that they weren't broken and he smiled and walked away. One dad that was patiently waiting struck up a conversation with me, he was there with two of his kids. They are both in different stages of the scoliosis surgery process, his eldest child also has scoliosis but hasn't had the surgery, yet. Got me thinking, they looked like such a normal family, kids dressed in varsity gear from the local upitty Palo Alto high school, but none the less, they were sitting in the same waiting room that we were. There were also families that looked to be of far more humble means. As I said to the father that I was not in line and that he could go, his son translated for him. There were people from so many different backgrounds there, so many different medical challenges. Reminded me of how we are all the same, so vulnerable, so helpless when it comes to our children. Finally we were called back and Claire was her 85% of the time wonderful little self and did everything that the doctor required of her. When we got around to seeing THE doctor she was so excited to see Claire. She remembered us from 3 years ago (memorable in a good way I hope) and that she was so glad to see that Claire was doing so well. That is code for "we expected her regression to be much worse and for Rett to have taken a lot more" but at least she chose to put it politely. I am also very glad that Claire isn't doing worse as they all had expected. So we took our script for glasses, packed up all of our gear and piled into the Smart car. We paused under the big tree before driving home to marvel at the leaves, to put it all back into perspective, that we all have a lot, that God is bigger than us and that He loves us enough to make really great children's hospitals that everyone can afford and then we drove home.

The Face of Intimidation

Summer time seems to have brought a lot of very interesting things to the surface that involve our little Claire. It all started with our end of the year update on the IEP. Mind you that at home Claire has been saying all sorts of wonderful stuff on her talker and it has made life a bit easier. For example at dinner on Sunday she found a button that said, "I need to go to the bathroom." So Jared took her straight to the potty where he pulled down her DRY pants and then she sat down and peed, AWESOME on so many levels. So I am reading the note from the SLP that says that Claire does not understand the concept of choosing from a category of three to then get to more choices. Right, her talker has 45 icons and she found the page that led to the "I need to go to the bathroom." icon exactly when she needed it. As I read it I am thinking what child are they accessing, this is absurd! I thought about it for a while and came to the conclusion that after almost two years of working with Claire, some of the people still don't get it, aaaggggghhhhhh!!!! So it had become clear that I now need to take more drastic measures. This morning I talked with our SLP that we use for our home, the one who wrote the report to get the ECO2 because she believed that Claire had a lot to say (we like her a lot!). She was wanting to move our scheduled appointment back so that she could have more time to prepare. She was explaining that she wants to bring something in her visits that would help Claire to grow and make progress and she is having a hard time. We spoke about the SLP at school and her IEP remarks. It was then that she made a remark that really got me thinking. She said that it was good that the school SLP was retiring because when people have been at it a long time and they see something that they have never seen before and they don't know what to do it is intimidating. I laugh to myself as I type this but it is so true, Claire is terrifying, in a good sort of way, but still terrifying. We have so many really smart people on her team and people that really want to do what is best for her, but truthfully, no body has a clue, myself included. Poor little Claire. I know that she doesn't mean to scare people. Like when she gets upset because she needed to go potty and we don't make it and she becomes outraged which fades into deep sadness that she just can't do what she wants to. I can only imagine how intimidating it is for her. Every day is a huge mountain to climb, to use her muscles to chew and swallow and practice walking and survive Chloe's hugs. But she does it, and she does it with a big smile and pretty ribbons in her hair. I find myself renewed in my fight for her. I realize that most of the therapist she will ever work with never really know how to help her and will be overwhelmed by the many dimensions that is Claire. But I will help them to think that they can do, help them to understand how she works. And I know that all of it will be worth it, that the investment in Claire will always yield far more than I could ever dream of.

One year ago...

...my world forever changed. It was a surreal experience. I had a great nights sleep, got up with the alarm and took a shower. We had just finished getting ready when there was a soft knock on the door. The nanny had come to stay with Claire and take her to school since we would both be out of pocket for a while. It was a good thing that we had Kim take our picture before we left because we realized the camera battery was dead, that would have been a bummer. After getting that situation squared we got in our little Smart car and off we went to the hospital. You can tell I get admitted to hospitals way to often as I was ridiculously low key about the whole thing. They took me back to where I got to hang out and wait for the big event. Jared took off to find coffee, which is a good thing because he is a lot more fun after coffee consumption begins. Eventually they took me back to the OR where I met, and I am not making this up, Dr. Sharp, who was the guy in charge of sticking the big needle in my back to keep me from feeling. As I sat there waiting to get numb there was the most awful 80's music playing. Don't get me wrong, there was some good music from that period, that was not what was being played. Dr. Sharp had made a joke about changing it to Weezer and I spoke up, please change it, not this. After checking with all of the staff the decision was made and the Weezer playlist started to play. I have to laugh that of all the things that I could have been concerned about, it was the music. I think it was because I was in such good hands, I really had no worries. Now I am laying on the table with a drape up so I can't see anything. Jared and I are giggling because we just can't believe that we are hanging out as the Red Hot Chili Peppers played waiting to hear the cry of the baby, it was really surreal. She came out really alert and ready to go and hasn't stopped since. Truthfully this has been a year more of survival as having two people to feed, diaper and co-ordinate sleep for is really a lot. There has been a lot of moments that seemed just like it did when Claire was that age and that has been a very painful process. I am really excited for the next year as Chloe teaches me all of the things that little people do so naturally. I hear a lot of people talk about all the fun that children are and I am really looking forward to that.

Adventures in Surgery, con't.

I think that I may have mentioned that typing has been hard in the last few months because of my wrist. I was referred to a surgeon as I wasn't healing as well as I should have. Turns out I wouldn't get better until they took the cyst of the center. So on Monday Feb. 1st they took it out. It is a little disturbing how good I am getting at this surgery stuff, seriously, I am fine to not have another for a long while. Nothing too exciting about this one. Jared dropped me off at the curb and I was texting him to hurry up and pick me up a few hours later. I do have to say that general anesthesia never leaves you feeling good, nor do cuts on your body that are an inch or longer. The hardest part was the 10 days following. I had a bandage on and could not move my wrist at all. So I wasn't able to pick up either of the girls as that requires two hands. I got the bandage off yesterday. It worked out well that as I got home Chloe was just ready to get out of her crib after her morning nap. She was up on her knees which helped, I picked her up and it was the most excruciating pain. She buried her head into my should and then smiled the sweetest smile. It was great! Then Jenna saved me and I went and iced it. It is so good to be working on healing. I am thrilled that I will be in a lot less pain for the big trip to met Ariel and will have two hands to help as both girls are working on standing and walking.

Sweetness

I am again in awe of life and how ironic it has been for me lately. A doctor noticed that Claire's spine has started to curve a bit so we were referred to a specialist to monitor the situation. The trip to the doctors office was the perfect storm of circumstances. My wrist was hurting, Claire needed to be in her chair (instead of our double stroller), Chloe was over tired and woke up as soon as we got out of the car. Then we waited forever, at least 30 minutes, while trying to feed two children, it felt like forever. Then we went back and waited more. After the first interview with the nurse practitioner it was decided that we needed an x-ray. Thankfully by that time the cavalry had come. Jared helped Claire to stand for the x-ray and back into a room we went to wait. Finally the doctor came in with nothing helpful to say. As we left I was so upset that Claire had to jump through so many hoops, all for somebody who didn't get her. He actually recommended a "real" wheelchair for her so that she could play with the wheels. I didn't know what to be mad at, him for such a crazy recommendation or me for being the pessimist that assumed that she couldn't benefit from reaching the wheels if she wanted. It had been a long day, I am still emotionally exhausted from Christmas, and I had just spent almost three hours at LPCH and had little to show for it but over tired girls. As I got onto the freeway Claire started to get more unhappy so I reluctantly put on "her" music. Her favorite song in the whole world is "Sweetness". As the song started she turned her head to look at me in the mirror with that slight "Mona Lisa" smile that she has. Then the best happy sound came out of her. I love it when a favorite song comes on and all my problems melt away and I love it more that Claire has this. As we drove home, Claire soaked in the beauty of the forest and bobbed her head to the music. I pray that some day she can dance to her favorite music on this earth, that day will truly be sweetness.

On My Drive to Work Today

It might sound odd as I am a stay at home mom, but I do feel like I commute every day. Claire goes to school five days a week at two different locations, each at least a ten minute drive from our home. Getting Claire a public education is indeed a full time job in itself. Enough explaining, on with my story. As we started our journey to school today I was thinking about all of the usual stuff. When should I call the County Office of Ed to discuss the next IEP, I have to call the district and find out what on earth they are thinking, when are we going to see the specialist about scoliosis the appointment is in Dec so it must be soon, the typical monotonous part of my job. As we got onto the highway the light was coming through the very thin layer of clouds, it was breath taking. Normally we go to school in a dark grey fog, this was more like low laying clouds. I told Claire that I felt like we were driving in clouds and we could pretend to be angels, I got a big positive yes to that! As we dropped getting closer to sea level the clouds cleared and the sky was so amazing, crisp and clear. I tried so hard to soak in the beauty of the morning. The trees were such a deep bright green since it rained a few days ago, the leaves were bright red and the blanket of light fog was slowly starting to reveal the dark blue water beneath it. I seriously have such a beautiful commute. It did help that both girls were sitting quietly smiling. Then we got to school. As I helped Claire to walk toward the classroom I discovered that she had puked inside her shirt, but I had a clean set in her backpack, so we are still up for the day. Now I need to get a referral to GI, another thing that I have been meaning to do.

Adventures in Surgery

Earlier this week I had the unique pleasure of having my right thyroid removed. It was a nodule that measured 4.5cm cubed. It was really getting annoying and I am very happy to have it out of my neck. Of coarse, getting to that place, like most things in my life was an adventure. It started when I went to meet the surgeon. We had a quick discussion about risk and all that stuff. He was more interested in Chloe, who could blame him? He kept saying how beautiful she is, I see that stemming into another problem further down the road, but we have a while. So after a quick casual chat I signed some papers and off we went. Two weeks later I have to not eat or drink after midnight and show up at 10:30 for a noon surgery. The sad thing is that it was no problem to not eat or drink, after thinking about it, I normally don't because I wake up running and don't normally stop until noonish for some nourishment. I get into my super wonderful surgery dress with matching stockings. The nurse comes in to put in my iv. She asked which side was my left and after thinking for a moment, I figured it out and raised my hand. She then wrote yes on the left side of my neck, scary part is, I didn't see this as a problem. Somehow, before she sat down to start the iv I pointed to the giant lump protruding from my neck on the right side. Oops! She said which is your left side, not which side are we taking out and I was too relaxed to care. So after a good amount of alcohol wipes to clean the sharpie marks off my neck, she wrote yes on the other side, started the iv and left me to work on the afghan I am making for Claire. A few minutes later the surgeon walked in and introduced himself as Matt, pausing and then adding his last name in an effort to seem a little professional. Jared and I loved it, we joked that only in Santa Cruz does the doctor come in talking like a laid back surfer. Then the anesthesiologist came in. He asked a few quick questions, stated that I seemed fine and didn't need anything to calm down at this point. I continued on my hand work and he appeared again pretty quickly. He asked two questions and then asked Jared if he had a Ducati. Of coarse, Jared was wearing a Ducati sweater. I then sat there while the doc talked with Jared about the Monster that he had purchased six months ago and all of the custom work that had been done to it. How ironic, minutes before this guy came in Jared had stated that we might need to buy a Monster as the sale that morning hadn't performed at expectations. Eventually, he asked me the rest of the questions you ask somebody before you put them to sleep for three hours and left. Two minutes later he was back to discuss roads and winter gear suggestions. It really was a gift from God. Jared hates anything to do with needles and the pre-op is much harder for him. So in the weirdest way, it was the best experience. An hour late they wheeled me back I took a few deep breathes and woke up in the recovery room with the worst headache. The afternoon didn't get much better, the night got worse. I faded in and out of sleep trying to wait out the drugs. Somewhere in there I had the pleasure of a very nice visit from a friend to break up the monotony of waiting it out. Around 4am I woke up and the headache was gone, I was a human again. By the time that the surgeon came in at 7 I was sitting in bed watching the news and checking my email. He told me how he had used a spoon to try to pry it out but it was too big so he had so cut a bigger whole. That explained why it took an hour longer and why my chest was so sore. I was out by 9, less than 24 hours in. It has taken two days of extra naps and taking it easy, but I am about back up to speed. I'll chalk it up to an interesting experience and a reminder why Claire gets her medical care not in Santa Cruz.

It was a good Monday

Jared and I have enjoyed a nice, relaxing Monday. All went well with the C-Section and Chloe was born while listening to the Red Hot Chili Peppers in the O.R. She came in at a whopping 7 lbs 8.5 ounces. We enjoyed a nice visit from pastor Lee and some Charlie Hong Kong for lunch, well the Jared and Lee did at least. It's been fun having the Franklins two doors down, shame neither of us can come out of our rooms to say hi to one another. :) We're working on finding out if Claire can come to visit. They've put new rules in place for children as a result of the pig flu. Thank you everyone for your prayers; it has been a really great transition so far. If you want more pictures you can go to my flickr page here.

The Good Life

Again, I must begin with apologies. I have been a bad blogger. It has been over a month since my last post. The best excuse that I have to offer is that Disneyland got into our system and we have been busy enjoying life. I have been really trying to spend as little time as possible at the computer, there are just so many better things to do. Like take walks along the cliffs, get iced tea at The Verve, take a nap on the couch, giggle with Claire, bowl with Jared on the Wii, the list goes on, but I think you see where I am going with this. I am not trying to brag about my charmed life, I assure you that we have bumps, lots of them. Lately I have had the ability to really thank God for everything in my life as a blessing. Tonight I found myself saying to Claire, "How is it that you are so happy, shouldn't that be a crime." Made me think. I really do believe that God wants us to abundantly enjoy life, and with Claire leading us, we are. It has been really amazing to see her continue to come into her own in the last few weeks. We are finally getting things with her schools ironed out and we have been able to prioritize. The amazing thing about Claire is that we could work on everything. She tries so hard and if we take the time to teach her, she is a little sponge. The problem is that she is three and there are twenty four hours in a day. Recently we have moved fun up on the scale. I am so glad we did. It is amazing how less tiring it all seems, when you stop to have fun. I had a birthday in March and I got the Fit for our Wii. Everyone should know that watching my husband and neighbor hoola hoop and attempt yoga is a wonderful source of fun.
For the more humbling portion of my life, it started with a trip to Lucile Packard Children's Hospital. We had a 9 am appointment with genetics. By the grace of God I had left early and we weren't in a hurry. Since I was not in a hurry, when traffic came to a halt on the freeway, I stayed in the slowest lane. Unfortunately there was another driver who was in a hurry, and she almost missed me. She did manage to rip the wheel off my truck, push me into another car and spin in front of us and get hit again. Claire and I were fine, after many long hours of watching, it was determined that Chloe also seems to be fine. For being fine, I am amazed at how sore I got. It really forced me to rely on others to make it through the week. I am grateful that we have Jen, Kim and Jess who help with Claire and around our home. It has been a humbling experience having to get so much help, but it has been good. You don't realize how much you take for granted being able to stand up and get a glass of water whenever you feel like it. So I have learned lots of lessons from the "accident". First, don't be in a hurry, you are more likely to plow into somebody and get hurt. Second, it is alright to take help, you never know who will end up blessed by it.
So that is the update on what we have been up to, having fun and recovering. We are planning on welcoming Chloe into the world on May4th, unless she has other plans and we are very excited (understatement ofthe year). Claire can't wait to be a big sister and Jared is dying to get to hold her. I just want to watch her sleep. Since learning about genetics through Claire, the concept that anybody is born really trips me out. The other thing that we are currently dealing with is the recent diagnosis of Jared's mother. She has not been well and was just told that she has plasma cell leukemia. Yet another oppertunity for God to show us who He is and for us to rely on Him throughout every second of the day. Please keep her and the family and doctors in your prayers. For those of you that are reading this in AZ, it does mean that we will be back sometime in May, so watch out for us. For those of you that knew me when I did the Nike half marathon for the Leukemia & Lymphoma Society, watch out for that, I plan to train with the team again, only in Linda's honor this time. Here is one last picture of Claire, just because she is so darn cute. I hope that you all have an amazing Easter and celebrate all of the amazing gifts that were given to us through this life, death and resurrection.

Non-verbal and loving it!

Sorry I haven't posted for a while, there will be an update soon, but I want to be in right now right now. Claire and I had a marvelous day. It was not a perfect day, or an easy day, but we relished each moment of it. Today we got to go see a doctor at Lucile Packard Children's Hospital and we didn't need to leave until 9:15, a full hour later than normal. Of coarse Claire woke up an hour early as she just couldn't wait to get to the happiest place on earth (please hear the gentle sarcasm). I had hoped that we could sleep in, but it turned out to be such a blessing. We took the morning slow and deeply enjoyed it. We took the time to play with the Tango and it's "morning"ezset. We listened to Dr. Seuss on audio book. Eventually we were ready and off to our 55 minute drive to LPCH to meet a new doctor. The doctor came in and apologized for having to ask so many questions, but they were not able to locate Claire's chart so they were going off a few notes. I explained a bit about where we are and where we had been. The doctor then asked, so what can I do for you, why are you hear? The appointment had been scheduled to follow up after Claire started school. The process has been long and painful and I don't know if we are even heading for the right goal. I was there for her to weigh in. I got the speech about how hard it is to tell with a child with these types of limitations, I already knew that. So after she told me that she couldn't believe how many resources we were using ( I guess I am doing things right???) she asked if some residents could come in to see Claire. This is the kind of thing that they normally only get to read about, so I am always happy for them to meet Claire and see what a real girl with Rett Syndrome looks like. I just love how ornery Claire got at the clinic, she can totally tell when people don't get her. There is no performing for these people, none! After two hours in the little room, we were free to go, and Claire was thrilled. It amazes me how well Claire reads body language, I suppose it is how she best communicates, so it is what she understands. She can pick up the slightest bit of doubt. I wish that I could learn to be quiet like her and to absorb as much as she does. I am always so busy participating in or try to alter the scene that I am in. Next we were off to food, and there was a Panera Bread, a treat for us! As I rolled Claire in she had the sweetest smile on her face, a little worn out from the circus that we had just come from, yet so content and softly full of joy. She and I don't often go out for lunch the two of us, we have a few times in the last month and I think we will be doing it more often. As we sat there and she enjoyed her fresh fruit and grilled cheese I became overwhelmed. Without words, she says so much, the joy she expressed through her giggles when given a grape and the smile that radiated from her as she enjoyed her sandwich. We didn't talk much. I finally felt comfortable communicating with her on her level. I am always trying to talk with her and expose her to speech and make her feel included. It was when I stopped and slowed down to her level that the moment became some rich I almost lost it. The emotion that I felt was amazing. I felt as if these were the last minutes that we had together, we hadn't wasted them. After lunch it was time for us to head up to the city, we planned to see my cousin Zach who was in town for his work. To get there we first had to run through the rain to get to the truck . Claire giggled the whole way and she was wet by the time I got her in her car seat, lucky for us, by the time we made it to San Fransisco, it was all dry. As we wove our way to our destination, it was great to see her stare out her window and take in all the different buildings, very different from Santa Cruz, that is for sure. We had a really nice time with Zach, Claire enjoyed the sights and all the people that were around to see. We talked for a while and she was often the focus of the conversation. Like any good three year old, she did eventually begin to melt. Her screams of tired were cute, she had had it, done. With that we decided to go and let him get back to work. Here is the greatest part, the whole time we had chatted, she seemed content and involved. When we got on the car, she was glowing! I thanked her for her patience while the grown ups talked and asked her if she enjoyed being in the city. She radiated a smile for the next 35 minutes (I had been sure she was a minute from sleep). I love how active she is without using words. She teaches me so much. Even though she couldn't say witty things and run around playing, she had a great time. There is so much that I can learn from this. The irony, my three year who has wisdom that is so great, yet the common perception is that she is functioning cognitively at a 6 month old level. Makes me so thankful that God gave me this gift on this packaging, I can only imagine how long it would take me to figure this out without her.

Victory is Mine!

I think that it is safe to say that things have been a little more on the overwhelming side lately. January has a lot of volume of things happening for us, which is great, but it is a lot to manage. With so much going on, I have decided that I just might never be on time to anything, but I am not about to spend a bunch of time rushing around, life is just too short. Today was a full day, like most are. I worked from 4-7 in the morning, so I got a bit of a jump on the day. For the first time this year, Claire was actually a minute early to school, they weren't looking for us, as they have grown familiar with out five minutes late routine. Next we had a neurology appointment with Lucile Packard Children's Hospital, which is about a 45 minute drive. It was a miracle, somehow we got there 4 minutes early, we never get to doctors early. It was fun. Being late does not bother me, but it was fun to be on time for two appointments. By the afternoon, we lost the momentum, Claire's babysitter called to ask where we were, she got to the house 40 minutes ahead of us, you just can't win them all.

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.

Over the hill and through the woods..

...off to Stanford we went. Today we had the opportunity to go see our doctor in the Behavior & Development Unit at Lucile Packard Children's Hospital (part of Stanford hospital). I was not looking forward to this visit. I was afraid that it would be me having to defend Claire to the doctors and that they would be off base and I would be frustrated. I don't know where I get these crazy ideas. Along the principal of "the truth will set you free" I find myself needing to listen to Claire. As our physical therapist pointed out, anyone who is intelligent will see how bright she is. It amazed me today how I didn't have to fight. I now find myself thinking, why is it that I expect a fight, why wouldn't others see Claire for the bright light that I do. Before I was done with paperwork, we were called back, did the measurements and didn't wait long before a fellow was in to interview us for the doctor. It was her first time meeting Claire and we had a nice interaction, but it was great that as she was leaving she said, "Clearly, she is a very bright little girl." She went off for a bit and came back with the doctor. The doctor was thrilled to see Claire and that she was doing so well. It was such nice validation, it is not just me, she is doing great! I think that the doc was half expecting me to roll Claire in and see even fewer remnants of a child that once occupied her body. She was beside herself at how well Claire was doing and happy to write as many letters as we need to make sure that things keep happening for Claire. It was one of those long and really rewarding days. Driving far in loads of traffic, but to hear from a doctor that knew Claire during the regression, she is better.

Another full day

It started this morning with a trek over the hill to Palo Alto to see Claire's primary care, who we hadn't seen since Sept. '07. Claire totally overwhelmed the doctor and she is going to go read a bit and we'll see her again in two weeks. The weigh-in is always a point of concern for me, but the champ weighed in at a whopping 24 pounds 8 ounces and is 34.5 inches long. The doctor gasped with joy and elated, "She's on the chart!" as she opened Claire's file with the new measurements. After that was done we stopped at In'n'Out for a little lunch for mom and headed home. After a rest and some lunch, Claire had an hour of PT with Tiffany. She was in full 2 year old tantrum glory demanding that she wanted her vanilla shake (from In'n'Out) now. We were using it as motivation for her walking in her walker, oh did she have her own thoughts on that. All in all, it was a good PT session, Claire did well and she even convinced Tiffany to let her take a break from walking and play on her iGallop. Next up was OT with Pat. Things really started to get exciting when we started to work on self feeding using the new water table (which was made with love by Claire's Grandpa). We started with veggie sticks and she was doing well, it got us to thinking. So we broke out the whip cream and had a party! I always love therapy sessions where people who know Claire and work with her tell me things like, "I know that she will spell and count"and there is such an overwhelming sense of promise. It sure helped to balance the doctor who questioned why I thought Claire was not retarded. If you would like to see all of the photos from today's OT session click here.