Her temp stayed up over the weekend. I know I said I didn't like the Clonidine. But I think now I do. Her body feels warm. Her BP never dropped. I don't know that she's happier or more comfortable with the clonidine, but I don't think she's worse off.
Last night she started crying about 7 PM. (The night before it was at 6 PM). She was doing the same thing she did the night before (smack lips, drool a lot and cry). I told her to smack her lips when I touched the part of her body that hurt. THat was unfruitful. So we put her to bed. We checked her heartrate. It wasn't up. So we knew that she probably wasn't in pain. She was still crying in bed. We gave her her meds (including her nightly sleeping pill). She stopped crying. So I think she knows that we give her meds (through her g-tube) into her tummy. SHe associates that with eating. Her old sign for eating was smacking her lips. SO she was saying feed me my meds/sleeping pill so I can go to sleep. We'll have to see if the trend keeps up. She is really smart. SHe communicates all of the time. We are the slow ones that have to figure out what she is saying.
Her signs change all of the time depending on her abilities at the time. She had an old sign for bed (she would bring her arms into her chest and shiver).
SO we just have to try and keep up with her expanding vocabulary of signs.
After we gave her the sleeping pill last night I went in to check on her to see if she was asleep and ready for her bi-pap mask. I thought she was asleep, but then she started kicking one of ther legs. THat means she wants a diaper change or a change of position (usually diaper). ANd lo and behold she did need a change.
What a smartie pants!
2 comments:
You have had a rough winter!! Glad to hear you both had blessings.
Even after the 'training' you gave us it's still hard to comprehend just how Ellie feels everyday and in certain circumstances. It's amazing that she can sign so much and it sounds like she keeps you on your toes with changing signs too!
It sounds like she's more comfortable with the changes that you've had to make. Is crying unusual for her?
I love to see how Ellie communicates. I think you are right about us being the slow ones. She really is smart. I wish I could know her as well as you. She is so interesting to me. I'm glad you two had blessings. That's totally neat. Still praying for you...
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