(Love this picture!)
To put it mildly, Áine continues to be a hot mess across the board with school being particularly challenging to use a euphemism. She has lost several skills as well.
I spoke with Áine's neurologist today. Her EEG test last week -- which was brief -- showed no seizure activity during that 24-hour period. The doctor was pleased with the results because it rules out seizures as the cause of her sleep disruption. Not that she isn’t having them, just that they aren’t the cause of her sleep issues. To that end, she is referring Áine to a sleep specialist at UCLA since all conventional means to get her to sleep have been tried. She also removed the only “non-essential” medication to simplify Áine 's medication load to see if that will do anything.
Áine had an appointment late this afternoon/early evening with her pediatrician who we uncharacteristically haven’t seen for the past six weeks. Áine put on quite a nightmare of a behavioral show for her. Which is just what Momma wanted. Banshee screaming and head banging and hip hitting included. She will be emailing Áine's neurologist to see about getting Áine admitted to the NPI (NeuroPsychiatricInstitute) at UCLA to deal with her out of control behaviors. (Brendan was in there for two stints around the same time that Áine had her hemispherectomy back in 2003.) The plan would be to safely bring her off all meds and gradually add back what she needs. When this was done with Brendan, it took a while for the body and mind to adjust post-hospitalization, but he has been primarily golden since then. So I have hopes.
Her doctor suggested she wear a helmet because of the head banging and suggested some modifications in our home environment. Thankfully Brendan used to wear a helmet. It’s not pink, but it will do ;o)
A g-tube is being considered to get her medications in her more consistently.
She has pending appointments with her developmental pediatrician and neuropsychiatrist.
We are back to the pediatrician in a week instead of our usual two weeks.
Life goes on even with all this craziness. Praying for my little one, so she can be her happy, excited, smiling self again :o)
3 comments:
Joining you in the same prayer. That sister picture is beautiful! I'm glad you were able to get some hopeful news after all of this. I'm sure Ciara will find some outstanding pink stickers to decorate the helmet with to make it more fashion forward. :o)
Great picture!! I can see the change in Aine.
I have to agree about the sister pic. This is definitely one for a frame. :-) As for Aine's upcoming evaluations-I shall keep the candles lit and burning that more good news will be the result and a sleep solution is at hand. As always, it's wonderful to read a Madigan update!!!
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