Monday afternoon, I needed to change the Terbutaline pump site in my tummy. Lauren and her little friend were playing behind the sofa. I discreetly set up the supplies. Lauren popped up, saw what I was doing and said, “Want to watch my mom?” Both girls excitedly ran over, ready for the show. Lauren said, “I am going to sit right here so I can see!” Little friend said, “I am going to stand so that I have a good view!”
In all the hub-bub, I forgot to take the sticky tape part off that attaches to the needle with the catheter inside. So, I stuck the needle in my tummy and then realized I was going to have to start all over. Shoot! I pulled the needle back out and both girls yelled, “Yay, she gets to do it again!”
I can only imagine what little friend told her mom when she got home.
A little later, the girls were back behind the sofa playing. Little friend said, “Lauren, I wish I was allergic to peanuts so that I could sit with you at the peanut-free table at school.” Lauren said, “I wish you were too!”
Five year olds are cute! 
The day started off well. Dave suggested I use my extra time while on bed rest to watch Zack Arias’s OneLight Workshop DVD. This would be my opportunity to learn more about lighting and to move closer to achieving compelling and creative portraits.
So, with my French Vanilla Latte (decaf because there is no need to make my heart beat faster…Terbutaline does that on its own!) and the laptop, I was all set. Ready, set, learn!
Uh oh. What in the world is Zack talking about? Good thing I know what aperture and shutter speed mean because everything else he is saying is flying right over my head!
I quickly realized that I skipped right over the part that said that the OneLight is designed for intermediate to advanced photographers. Oops!
The man is a genius. I swear he was trying to torture me.
I’m not quite done with the workshop DVD yet but I am confident that something will sink in!
Dave and I both enjoy taking pictures. A couple of years ago, after Carmen was diagnosed, we decided that we should learn to use our camera. We knew that Carmen would not live long and that we wanted to record her life in pictures. So, with a great deal of trepidation, we took our camera off program mode and started setting aperture and shutter speed ourselves.
We have great fun taking pictures and feel much more confident than we did a couple of years ago. But, we have a lot more to learn.
Recently, Dave went on a business trip to California and took the camera. I looked through the pictures and almost deleted this palm tree. But, since I have quite a bit of extra time while on bed rest, I decided to see what I could do with it! Since I am no photo editing wizard, I played around for awhile, trying to achieve something interesting.
The end result is definitely highly manipulated but I think the before and after pictures show just how much editing can help a picture! (The goal, of course, is to get great pictures straight out the camera and not spend so much time editing!)
And because I am proud of Dave, I want to say that he takes great pictures and this overexposed palm tree picture is very rare for him!
The palm tree before.
The palm tree after.
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Thank you Bobbie for the delicious meal! We enjoyed the feast!
Dave went to Lauren’s kindergarten parent/teacher conference on Thursday with Mrs. A. The report was good. Lauren is doing well in school. Actually, she loves school. She hops, skips and jumps to the bus each morning. Mrs. A commented on Lauren’s excellent rule following behavior. She is definitely our “rule girl”! (Yes, she is a mini-me.)
Dave specifically asked if Mrs. A has noticed any behavioral changes in Lauren considering all that has been going on. No, Lauren doesn’t seem phased. Kids are so much more adaptable than adults!
Here is our sweet kindergartner. She was so excited to dress up for picture day. Black velvet dress, braids and a big yellow sunflower!
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Here is a note from Lauren to her friend Annie:
Dear Annie,
I was so excited that I got something in the mail. Thanks for the animal shaped rubber bands!
Love, Lauren
Thanks to Claudia and Eric for the goulash and green beans! I had some for lunch today and it was wonderful!
I mentioned recently that Carmen has been having some trouble keeping her body temperature stable. On Wednesday, her temperature dropped to 92 degrees. When she gets cold, we now dress her in fleece pajamas, mittens, fuzzy socks and fleece hats. She is wrapped in blankets with a heating pad on top. We have to carefully monitor her temperature throughout the day to make sure we are not overheating her with the layers.
From what I understand, kids with Tay Sachs eventually have trouble regulating body temperature because the part of the brain that controls temperature is all clogged up with gangliosides. Just another symptom of a progressive degenerative neurological disease.
Now that we have a photo editing program on the laptop, I can start posting pictures again.
Here is Carmen, all bundled up.
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Thanks to Edi for dinner and Jennifer for Boston Market! Lauren was thrilled to have macaroni and cheese! Thanks to Azeb for bringing us Subway lunch. I thoroughly enjoyed visiting with you and eating the turkey sandwich!
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