- Cannot get off the toilet in a reasonable amount of time.
- Takes upwards of 3-4 visits to the bathroom every morning before school. When asked if anything is coming out she says yes, however when you listen you only hear pee for the first 20 seconds, then nothing. Of course if she's pooping you don't hear it. Beth has checked the consistency and volume on an irregular basis, and says some days it's a lot, others not so much. The speckling of the feces has gone away and the consistency is still that of "soft serve ice cream."
- Nighttime routine still consists of trip upstairs after hugging both of us, walking upstairs, brushing her teeth, then sitting on the toilet for at least 30 minutes. However, the past two nights she's been reducing that down to 10-15 minutes (after a therapy session with her therapist). Also, the past two nights she has not bounced back out of bed after saying prayers. Both my wife and I have praised her for this and mentioned how nice the past two nights have been at bedtime. We made sure we told her how much we enjoyed the past two nights and look forward to continued improvement.
- Another improvement the last two nights has been no longer calling us after 10 minutes of being in bed in the dark. Again, I'm sure that's because of the therapy and perhaps the remedy kicking in finally, but unsure at this point since it's only been two nights.
- Still has anxiety around foods. As I mentioned in the past, she had a horrible experience in January at the children's hospital with being "unclogged," in a most undesirable way and how she was warned that she is the only one that can control this with proper diet, exercise and relaxing and going to the bathroom when she feels the urge. I'm sure that experience along with the instructions have compelled her to compulsively go to the bathroom due to a "sudden" urge.
- Still avoids strong smells in the air and on her body. I asked her to help me warm up the beef stir fry last night at dinner and refused because she didn't want to get the smell on her. In fact, when my wife made the beef stir fry the night before, I came home from work and Julie was upstairs trying to avoid being near the smell and was weeping when she came downstairs for dinner, saying, "I just don't want the smell all over me."
She cannot stand the taste of the Elderberry extract and jokingly says, "I wonder if Dr. Shelly might have gotten the bad taste of the Echinacea mixed up with this Elderberry 'cause this stuff is nasty!"
The Vitamin D liquid goes down very smoothly and there's no aftertaste. She's taking her vitamin without any skipping and still takes VSL +3 Probiotic to protect her GI system.
We have an appointment with Dr. Shelly tomorrow morning and will hopefully get the go ahead to take Julie off of the prophylactic dosage of Keflex (750mg/daily).
No comments:
Post a Comment