Jared was on Claire duty all night. And I really mean ALL night! She didn't sleep a wink. Neither did he. Weaning her off the meds has really made her shaky and not be able to relax. I laid down with her about 3:00 this afternoon and got her to take a little cat-nap for about 40 minutes. I had to hold her arms and head still because she would just shake herself awake if she didn't have some restraint. They said that tonight they'll give her some relaxing medicine to help her settled down and hopefully get some sleep. Talk about going through the extremes! Sleeping for 6 days straight and then being awake for 36 hours!! Hopefully we can get her back on a normal sleeping pattern soon! Even throughout the day today the shaking has gotten better so things are looking up!
The only medicine she is on is heparin. They are keeping her on that for the clot that is in her leg. They did an ultrasound of the leg today and they said the clot isn't getting bigger, which is very good. It is still there though. They haven't decided what they will put her when she's out-patient; but for now, they'll keep her on the heparin. The main reason they're so concerned about this clot is that when she gets a kidney transplant, they use that artery in the leg and connect the new kidney to it. It needs to be a well working/non-clotted artery for the blood to able to flow freely to the new kidney, so we're praying it gets better on it's own, soon!
It's been a fun day to see Claire come back to life again. She still has a ways to go until she'll be back to her normal self though. Still no smiles. Her speech is really not there, but she is getting physically stronger. She can sit up on her own now and is starting to use her hands to grasp for things. We're going to be working with physical and occupational therapy for the next little while to get her back on track. I'm excited for ALL the meds to wear off and for her to mentally and physically be herself again. She's here with us, awake, but she's just not quite herself yet. It will come! The best part is seeing her beautiful eyes again!
7 comments:
It is so nice to see her awake. She is so adorable.
So happy to see Claire Bear awake and looking much better. Hang in there with the no sleep. Prayer does amazing things--as you guys know. It won't be long now, and she'll be back to her smiley, happy self. So happy for your family.
I prayed for you and your family.
It is easy for me to forget how insignificant the little problems that we have with our 3 year old twins in comparison to the great challenges faced by others.
I dreamed that you and Claire came to visit last night. It was so fun. I held her for like an hour while you and I just talked and talked. It was a very happy dream. I hope Claire starts dreaming again soon. Hopefully they can relax her a bit with medication.
Take care.
I am so happy that she is recovering so well...what a little darling she truly is! You guys are all amazing!!!
OOH!! She looks SO GREAT!!! I hope her sleeping schedule gets back to normal VERY soon! I'm so glad she's doing so very well!!! What a trooper!
Such a relief to see her awake and talking! That's awesome!
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