We had the TS Alliance Southern California picnic on Sunday and it was tons of fun. So much so that I was too tired to write my post for Monday. So here is the weekend update. Saturday we had an open house from 2 to 5 and when I got home, I flopped down on…
tuberous sclerosis
My little escape artist….
I am pretty sure I have mentioned before that Tiara “elopes” from the house when given the chance. I call it escaping but in the special needs community, “eloping” is the proper term, nevertheless they both mean the same thing, Tiara is on the run. Years ago she would constantly try and escape to find…
Two cavities and now another visit to the hospital…
Last Thursday I took Tiara for her regular teeth cleaning only to learn she had developed 2 cavities. Both in the very back of her bottom teeth, one of each side. You may not think this is such a big deal, but it is a huge deal! The last time Tiara had a cavity was…
Did I jinx myself?
So I may have jinxed myself after talking about how great Tiara has been doing this past week. Last night she was breathing funny during the night and kept tearing off her oxygen. I must have gotten up 4 times to put it back on, check her oxygen level and then feel her chest. She…
A Tuberous Sclerosis Weekend ….
This weekend was like every other weekend in our family, BORING, except I spent a lot of time thinking about our Tuberous Sclerosis friends. This past Saturday was the Walk for a Cure in Long Beach but we were unable to attend this year. I was sad to miss it because one special girl, AMELIA,…
A big change since Tiara has been home…
Some of you may not realize that Tiara hasn’t started walking on her own since she has been home from the last hospital visit. As a result I push her from room to room in the wheelchair but she spends most of her time in the bedroom. I feed her breakfast in bed, do her…
A special Tuberous Sclerosis encounter in the hospital
I have been wanting to share this story with you and since today I am so exhausted I am having a hard time thinking, today is the day you get to hear about my recent encounter with another Tuberous Sclerosis family. While in the hospital during Tiara’s last visit, I received an email message sent…