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…
daily life with tiara
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…
Back on Oxygen 24/7…
Tuesday morning I woke up, looked at TT and decided she looked pretty healthy. Good coloring, happy disposition and breathing easily. I then woke Trinity up for school and saw that her allergy attack was resolved which meant she would go back to school, so I decided Tiara and I were ready to resume our…
Who was in my closet?
Monday morning I woke up so sore and achy, I had trouble moving. After lifting 4 bags of mulch in and out of the car and then dragging them around the garden my body was screaming for help. But that wasn’t the only reason my body was crying out for help. I think the biggest…
A few reflections from the last hospital visit…
I know I posted almost everyday while Tiara was in the hospital but there were lots of things that happened that I wasn’t able to convey during that time. First, I wrote about a resident in the ICU who was rather full of himself and on first impression neither he nor I were impressed with…
My new favorite cookie!
As many of you know, I have a serious sweet tooth, which I normally satisfy with a cookie. I like cookies which are homemade, from Mrs. Field’s, the Corner Bakery and Paradise Cafe and that is pretty much it. I am super picky and hate to waste calories on bad cookies. While I was in…