What a busy morning! We had some people come over to discuss the occupational therapy Claire will be receiving to help her learn to eat. They have all kinds of forms and meetings that we have to go through before the OT actually begins, but I think this was the second to the last one! She certainly qualifies and they are excited to work with her and I'm excited to get it going! They have lots of good ideas of how to get kids interested in food and how to help them know what to do with the food once it's in the mouth.
Right after they left I rounded up the kids and we went to the hospital for Claire's blood work. Her catheter worked great and we got the blood work done without any difficulties. Right after that we went down town to the Mayo building and had a Dr. apt. for both Claire and Benson. Benson's was for the study he's going to start soon....the initial physical to determine how he's doing before he starts taking the medication. It sounds like it takes a few weeks for them to get the results back from the 24-hour urine collections we did last weekend....but after they get those results, he will be able to begin taking the medicine.
Claire also got checked out. Her hemoglobin (red blood cell level) is still low--it's actually lower today than what it was on Monday. That's very strange, abnormal, and curious. We're not sure why it's so low. She hasn't been losing blood in her urine/stool and hasn't had a lot of blood taken from her for labs lately (comparatively speaking).....so it just makes us wonder why it's so low (and getting lower). Not good. It could be this cold she still has that is making it a bit lower, but we don't know if that's it or not. She's still coughing quite a bit, especially at night time but I'm still coughing now and then too and I got the cold two weeks before she did! It's a nasty cold. The doctor doesn't think it's internal bleeding, but we'll keep investigating and see what's going on. Liver labs weren't drawn today but will be checked again on Monday.
Claire was exhausted for a nap, after not sleeping well at all last night--she did more coughing than sleeping. But after she wakes up, we'll have to take her back into the hospital to have her dialysis catheter swabbed to see if she has an infection. The exit site, where the catheter comes out, has been draining and looks a bit red today, so we need to take a culture of it and see if there may be an infection coming on. Hopefully not but it will be good to know if there is.
There's always something.
I'm looking forward to a Temple trip with some friends tonight. It will be nice to get away for a minute and focus on something different!
I'm loving the Easter season candy! Starburst jelly beans just can't be beat!!
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