It is late and neither Keyan nor I have slept well for the last two night so I am going to keep this brief and go to bed. We continue to see small glimpses of our Keyan and that is encouraging. She held a book tonight with some help and she is mouthing a few more words. She managed thru another 10 minute physical therapy and has been letting me know a little more specifically what is bothering her.
The neurologist came back today because the tics are actually getting worse. The best part of his visit was that he actually admitted that he was just as confused as we were. He went back to his office and did some thinking and has ordered a bunch of lab work, some of which has to go to the Mayo Clinic so we won't know anything right away....do you ever wonder if doctors ever go back to their office and google the symptoms???? I am sure they have much more sophisticated ways of researching but you have to wonder! I am just glad that they haven't written us off. The other troublesome problem is that she is developing pain. Pain in her back, head, eye, tummy, ect. The only thing we can thing is that because her body is in constant motion much of the time, that her muscles must be hurting. In all reality, it is like her body is running a marathon every day. Trying to help her without just giving her a bunch of pain meds is hard though. I really want to get the pain under control, but I don't want to add to the problem...ah, the ever-present problem!
It was a very emotionally rough day today that was made a little better by having some friends and family visit for awhile. Thanks everybody, for dealing with the craziness and loving us despite it! Night~Night
1 comment:
It was great to visit with you last night. We will continue to keep everyone in our prayers.
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