6.27.2009

Not going far

In case you are wondering why it was so long between posts, I was off traveling. Last weekend Chloe and I took a quick trip to Arizona. I was there barely 24 hours before I had a fever of 102.2 I spent the next 24 hours trying to break the fever so that I could get on the plane. I flew home with the help of lots of over the counter drugs and a sturdy set of hands to catch us on the ground. Jared has done such an amazing job of taking care of the girls at night so I can try to rest and heal. I got strep throat and a nasty cold, so it has been several days of getting better. Today I am feeling better so we journeyed down to the cliffs for our Sat. morning get coffee and watch surfers routine. I sat on a bench feeding Chloe a bottle while Jared and Claire went and practiced standing in the sand. I got to thinking how much better I like not feeling sick. It also occurred to me that we live in a really amazing spot. So it has been decided that I am not traveling anywhere by plane for a while, thanks to my Crones and the awesome immune suppressing drugs I take for it, I just can't handle it. So I invite you all to come and visit us, we have lots of fun stuff in the area and the girls are a pretty good time.

My little Engine that did

It is a quiet afternoon at home today. I am alone with the girls while Jared is getting his arm finished (pictures to come :-) I was working on getting Chloe down while Claire had just gotten up. She was sitting on the couch when I had to go check on her little sister. While I was in the other room, Claire had started to lean to the right and was now leaning on her arm. This is significant for many reasons. Lately she has been leaning to the left a bit and we were starting to worry. Also, she has been working with our awesome OT Kaya on going up and down with graded muscle control in several different positions. It is so neat to see that Claire is translating it and using it in different situations with no prompt. As Claire was leaning on her right arm I asked her if she was trying to get down, she looked up at me with a big grin, so I took that as a yes. I told her that I knew she could do it and that if she wanted help she would have to ask. So I sat there watching as she worked her one leg over the other and finally got down onto her tummy. At that point I realized that she was going to do this and I started looking for the camera. Good thing we have the little flip around, so handy! She took her time (this was actually pretty fast by her standards) less than 5 minutes! Eventually she got down and she went down to her knees, something that we never taught her, she figured that one on her own. After she got down she crawled right over to the Little Engine That Could book that was on the floor a few feet away and gestured for me to read it. As if I could actually read through the tears (of joy) but I managed. When we got to the part about the little blue engine saying, "I think I can" to get up the mountain, I asked Claire if that is what she was saying to herself as she wiggled down. The squeal that she let out was too much, as if to say, of coarse that is what I was thinking! I am so proud of my little monkey. Again I sit here and learn so much from her. I am feeling a bit overwhelmed by thirty seven E.O.B's that came in the mail last week and trying to reconcile accounts with five different medical providers. God has given me so much and certainly the resources to get through all of the paperwork, the laundry and other odds and ends that I find filling up my days. From Claire I am reminded that I can do it, that there is no rush, that I should enjoy the process. It is from Psalm 46 that I am reminded of who God is. The earth giving way, the mountains moving into the sea and waters that roar and foam is about what it feels like having a child with Rett. I hope that you enjoy the video clip and rejoice in this small victory for Claire with us!

video video video

6.18.2009

Words Can't Descibe




So much going on these days, I can't possibly type it all out. Here are a few pictures of our life recently. Overall, life is good, but we are staying on the move and when we aren't we are trying to sleep. Last Friday Claire graduated from her class at school, Sat. we got to spend time with good friends at a picnic for Rett families and the rest of the time we have just been having misc. fun with Chloe. Sat. Chloe and I are off to AZ for a little fun in the sun. So if I don't post for a while, it is because I am recovering from the trip.

6.11.2009

Back to life, our weekend


I know it is a bit delayed, but I have been meaning to blog about our fantastic weekend. We started the weekend with a pancake breakfast to celebrate the opening of the courtyard for The Abbey, the coffee shop at our church. I know that a lot of love went into planning and executing the courtyard and it came out amazing. It was so fun to see it unveiled in it's glory. I hope to be able to go and sit and soak it in sometime soon. Next Jared was off to get his first tattoo (kelp wrapping around his forearm). It was great fun to wait outside for him to come and show me his arm with the stencil. He has been thinking about this and imagining it for a while, it was great to see him so excited about how the art work came out. Since I had both girls asleep in the car and I was already on the West side, I took the opportunity to drive up Highway 1 a bit. It was such an amazing mix of Santa Cruz weird and God's amazing creation, which seems to be true of so much of my life. As I drove I first saw a distinguished woman walking with bright purple hair, then a guy in his 20's walking down the sidewalk on his hands, as I drove a bit further I was blown away by the field that grow right up to the edge of the ocean. All God's unique creation and I got to go slow and take it all in. Sunday also brought me amazing experiences. We were able to leave the house an hour before we needed to for church. So we headed down to get coffee and sit at the cliffs. Normally in June it is "gloom" in the mornings, but this day was an exception. It was finally warm enough to take Chloe out to sit and watch the surfers with her sister, something we have been wanting to do. Words cannot describe the awe I felt as I sat there with our girls, looking at the vast amazing ocean. God continues to blow me away with how He designs things. Both Chloe and Claire so uniquely perfect. After a few deep breaths and taking in a bit of sun, we were off to church. We so enjoy being a part of that community and this week was no different. The icing on the cake was the message given by Dan on encouragement, it was as if he was speaking right to my heart and just what I needed to hear. Since it was still beautiful out we decided that we couldn't go home and sit inside so we headed down to the Monterey Bay Aquarium. What a treat! We hadn't realized that it was world ocean day, but at the aquarium celebration was in full force. After lunch I sat with the girls and watched the otters play as we listened to a steal drum rendition of Bob Marley's "No Woman No Cry". Even in the middle of the chaos of the busy exhibit, it was the sweetest moment as Claire watched the otters and we sat and enjoyed it all. Chloe slept the whole time (which was nice) but her dad and sister got her a turtle to mark the event. As we drove home, I sat watching the strawberry fields and realized that we were back to life as normal. I thought it would never happen, but it did, and it is great!

6.03.2009

4 Weeks???


How can it be? Chloe is now 4 weeks old and I have no idea where the time has gone. It is so amazing to see her grow already. She has developed a little roll on each of her legs. I have heard that babies get cute little rolls of fat, but I have never had the joy of this discovery until this week. Claire struggled to get into the 1 percentile for the first 6 months, thus no fat rolls. Tomorrow is a weight check for Chloe and if the little rolls of fat on her legs are an indicator, I think it is going to go well. The doctor was a little concerned that she wasn't gaining at the rate they would like, but she is gaining, so we aren't concerned. Sad really how much it takes to get a doctor to scare us. We are using a new pediatrician that is closer to home for Chloe. When the doctor told us that she had only gained half of what they would like our response was alright, when do we come back to check in. She said she couldn't believe how calm we were and how well we took it. Funny how good we have gotten at taking news. Still, the weight stuff did bring some stress. I have come to the realization that I have to let go of yet another thing. It is good that I have God to trust with both our girls, but it is hard to keep letting go and trusting in the Lord with every aspect of their lives. Why I am not sure, because He seems to do such a better job than I. So down the road we continue, learning with each step of the way. I just wish I could figure a way to learn without making so many mistakes, but that is why I call it the organic experience, youjust never know what will come :-)