Hope has had a good week. She's been smiling and sweet and full of coo's. The big change for her is that she is extremely stiff. It's hard to bend her body to get her in the carseat. We've started Diazepam, but we're taking it slowly and not making increases very fast. So, it will take a while to get good results, but this way we won't overshoot and make her too sleepy.
Hope has always been floppy. It was Ashley who needed increases in the Diazepam all the time. This is such a big difference for Hope, and we're all noticing it. We're trying to do her exercises and stretches 2-3 times per day and give her more position changes. We've been massaging her legs too, and although she loves the attention, it hasn't helped.
Have a wonderful Easter weekend.
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Ashley and Hope were born with Adenylosuccinate Lyase Deficiency. This metabolic disorder left them with a damaged brain resulting in seizures and profound psychomotor delay. They were not expected to live past infancy. Although they were palliative care, we kept them at home to love and hold. Ashley died on March 18th,2011 (6yrs old) and Hope followed her home on August 14th, 2011 (4yrs old). We now continue our journey as a 'Family of Four'.
1 comment:
Happy Easter to you and your family as well. It`s wonderful how you put things in words, you definetly have a talent. God Bless you richly today. Love Anita
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