Today a friend came over with her two daughters who are in Lauren’s preschool class. You would have thought the Queen of England was coming for a visit! Lauren was in rare form! It always cracks me up how excited Lauren gets to see her preschool friends outside of preschool. It’s like a celebrity sighting!

We hung our family picture canvas above our fireplace (the picture on our homepage). This picture is amazing. To me it captures so much more than just a family photo. It’s Carmen surrounded by her family. This picture captures Carmen’s personality- calm and content. Thank you to Rashmi for this work of art.

So far this week Carmen is eating well and smiling a few times per day. She hasn’t slept too well which is unusual for her. Usually she is asleep by 7pm and sleeps until 7:30am. She does wake a few times during the night and we reposition her and she goes right back to sleep. We are trying to get her used to side-sleeping which is better for breathing but she clearly does not like being on her side!

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We had a packed-full weekend! Saturday Dave and I got flu shots. I’ve never had the flu and never gotten a flu shot but we thought it best to do what we can to keep Carmen healthy this winter. Lauren watched intently while Dave got his shot and exclaimed, “I knew you could do it Daddy!” Lauren and Carmen get their flu shots tomorrow.

Also on Saturday, Dave picked up a Land’s End winter jacket and snow bibs for Carmen. I found a super deal on Craigslist, $15 for a great condition berry color set. We won’t have Carmen out in the snow often but it’s important to have a warm set for cold, windy, wet winter days!

Today Lauren, Carmen and I went to the Disney Store to look for a costume for Lauren. Our church, Church of the Redeemer has a harvest festival every October 31st. Lauren wants to be a princess, of course! The Disney Store is clearing out their costumes and we got the last pink Sleeping Beauty dress off the mannequin! Lauren tried the dress on and couldn’t stop smiling! Carmen will wear an orange shirt with a red candy appliqué and “Sweetie” written underneath. She has matching orange, pink and red striped pants.

All last week Carmen had a hard time eating. Well, this weekend she ate fabulously! She ate every bite of her meals and finished her bottles! Maybe having Daddy home makes all the difference!

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This is my first journal entry on our new site! I am excited about our site as I think it will be a great way to update our family and friends on Carmen’s condition. For the past couple of months, I have poured over the dozen or so personal sites about children with Tay Sachs. These are precious children and their stories have helped me immensely and I hope that this site might be a help to someone.

Today Carmen had her weekly physical therapy appointment and was more alert and active than usual. She perks right up when her physical therapist arrives! Her physical therapist let us borrow a massager to use on Carmen’s chest when her breathing sounds junky.

Carmen is having trouble eating this week. Today she ate breakfast but no lunch and only a few bites for dinner. She would not open her mouth for purees. I suspect she is losing the coordination to eat and it is exhausting for her to try. She did drink three bottles of formula today although much of it ended up on the burp cloth. I may try purees in the Sassy Infa feeder bottle tomorrow. Most of this week went like today so I suspect Carmen may be seeing her Gastroenterologist before her end of November appointment.

Today Lauren said, “I love Carmen more than the whole world!” I treasure these moments! A friend at MOPS commented that Carmen gave Lauren the opportunity to be a big sister. I hadn’t thought of it this way. I’ve cried buckets of tears thinking about how sad and lonely Lauren will be when Carmen is no longer with us. But, right now Lauren has a sister to love and hug and kiss and share her life. Lauren wants Carmen to be a part of everything she does, even if that means Carmen just lies next to Lauren while Lauren plays dolls. I often think that Lauren is learning a very valuable lesson early in life- to accept people just as they are.

Well, it’s late and time for bed! Goodnight.

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