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…
Do you sign your kids up for summer day camps?
What happened to the days when kids got out for summer and just played in the neighborhood all day? When I was a child I was always on the swim team which meant I swam for an hour a day and then the rest of the day I was free except for on meet days. …
A day of pictures….
Today I am going to share some photos as requested by some of my readers. Pictures of my roses, the finished patio and from Trinity’s birthday party. Before I start sharing the photos I just want to give you a small update of Tiara since she has been home. She slept great and was thrilled…
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…
still here, but NOT in the ICU…
We are still here but the good news is that she has been well enough to remain on the floor and hasn’t been transferred to the ICU . We found out yesterday that she has a urinary tract infection which explains the pee issue, which is really great news that it wasn’t a kidney…
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…