So the past few days Tiara has done a few things she hasn’t done since last year. The first I already mentioned yesterday, was our trip to the park on Tuesday. She walked all the way from the car, across the black top and played basketball for 30 minutes. I can’t even remember the last…
tiara & special needs
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,…
Tiara and her new job…
As you can imagine I don’t ask Tiara to do many things for me as I pretty much do everything for her, but once in a while I will ask her help. Today I got in the shower and was keeping an eye on her through the glass door when I realized that I didn’t…
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…
Where did the box go?
It is 3am on Sunday morning and I can’t get back to sleep. Tiara just tore off the probe on her toe so the pulse ox machine was beeping like crazy and woke me up. Once I put the band aid thing back on her toe, I taped over and over it so she wouldn’t…
We finally got home, once again!
Just a quick update. We finally made it home yesterday at 4:00 p.m. after an issue with the CHOC pharmacy not having Tiara’s antibiotic to take home with us. Of course the dosage she needed was back ordered but Tiara and I were getting super antsy to get out of there so I asked the…
Yes, she failed the swallow study!
Tiara had her swallow test yesterday and just as I expected she failed! I knew she was aspirating but I wasn’t sure to what extent. Apparently the moment she took a sip of the barium with a straw they watched it pass over into her lungs. Clear cut aspiration. She coughed but it was delayed,…
Home is where the heart is…
Happy Monday everyone! Tiara is still here at Choc but she seems to be feeling better. We realized she was allergic to the antibiotic that was treating her 3 infections because her mouth broke out in cold sores. I knew it might happen and was on the look out for any allergic signs because it…
Sadly, she is back in the hospital
I’ll make this quick as I haven’t slept much. Yesterday I took Tiara to the emergency room because she hadn’t urinated in 15 hours. She looked really puffy, was shaky and I was very concerned after she started vomiting. I am pretty sure the vomiting was a seizure because her eyes were darting side to…