What a lovely day! I know some of you may not agree, but I love a nice gentle rain. I brought my girls outside on the deck to enjoy the fresh air and the sound of the rain. Hope has had some pretty good days. We can't do a lot with her, because she doesn't tolerate sitting up for very long. She's having a lot of seizures and frequently turns blue, just around her lips, during the seizure. Hope smiled a lot this afternoon while we were outside. I think she liked watching Mira.
Mira has learned how to clap her hands, and she gets pretty excited about it. Actually, we get pretty excited about it too! I'm still surprised at how much happy emotion I feel when I see her clapping her hands with enthusiasm and squeals. It's overwhelming to see these little milesones that we never dreamed we would experience again.
5 comments:
Hello. I found your blog via google, searching for ADSL deficiency. My daughters geneticist thinks this might be what she has. So far we've just done the urine test and it came back "barely positive" so they want to go on to the next step, either lumbar puncture or DNA testing. I am trying to find info, support groups, anything about this condition. It is so hard to find anything considering how rare it is. Anyway, I will be following your blog if that is okay. You have a beautiful family. Thank you for sharing your story. <3
Thanks Amanda, I'm sorry that your daughter may be travelling this road and I hope that you may find something helpful as you read about my girls. Ashley had a lumbar puncture when she was 4 months old, to confirm this diagnosis. The urine test is unreliable because a false positive can happen. It's good that the geneticist is thorough. You are welcome to ask questions here, or look me up on FB.
Beautiful girls! Thanks for posting.
-Elise
Im so glad you keep telling us about your days. God is so good blessing you with Mira so that she can entertain you and Hope. =) I love the sound of rain and a baby clapping their hands. beautiful
So glad to hear that someone enjoyed the rain. It is NOT welcome here!!! We've had FAR TOO MUCH and it is so muddy that we have trouble getting at the feed for the cows.... Rhéal is NOT a happy camper!! I had to walk to church this a.m. in my barn boots and change into shoes under the roof hangover of the community hall - there were puddles of water all over and mosquitoes like crazy....just the beginning I'm sure.
Mira's love of slapping hands has turned into clapping? LOVE IT!! Maybe Hope enjoyed the show Mira put on for her - too cute.
Judith
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