Gracie awoke with a tummy ache this morning. Things just weren't quite right, but as the morning progressed, she started to feel better and was quite active, playing with her toys, digging in her toy box, crawling around. She discovered the electrical cord to a lamp we have behind one of our rocking chairs. She delighted in mommy telling her "no, no". She loves to test me. While this might be frustrating to some, I love it. It tells me she has a mind of her own and some independent thinking going on - this will serve her well.
We took Gracie downstairs to the family room today where Jeff and I had put up the Christmas tree while she was sleeping. She liked the lights and needed to feel the ornaments and the branches. She was more enthralled with the fireplace. Another "no, no" that she likes to test me on.
Gracie's spasms totalled 22 today. That is less than we've seen in a few days and we didn't have any that were super strong. We had started to see them with head bobbing (this is not a good thing), but none of those today. YAY!!!! Tomorrow we talk with our neurologist to see what the next steps are.
Tomorrow we also have an appointment with a cardiologist at St. Marys Hospital. Gracie's echocardiogram showed a small hole in her heart called a patent foramen ovale and a small connection between the blood supply to the body and the lungs (called a patent ductus arteriosis). They also noted a slightly thickened heart valve. As I understand it these don't seem to be of great concern now, but need to be evaluated by a cardiologist and we need to keep a watchful eye on them. Gracie's physical therapist will also come over tomorrow to work with her. Then in the evening we have a weight and blood pressure check. I think it will prove to be a busy day.
Wishing you all a great week.
Love,
Lisa, Jeff, and Gracie
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2 comments:
Lisa...I'm glad that Leah shared this site with me. It has been nice to read more about Gracie's condition, and keep up on her status. I read this every night before bed...and pray for you all as my day comes to a close. I know it's not realistic to hope it will all go away...but one small glimmer of hope at a time makes a difference. Stay strong and keep believing.
Yeah!!!!!!!!! Love to hear good reports! Gracie has a wonderful smile, so glad she was able to give you lots of them today!
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