Somehow 20 days have gone by and I haven’t posted. 20 days, 20 years, time moves so quickly and we can never get it back. 20 years ago this weekend Tiara was diagnosed with Tuberous Sclerosis. I remember sitting in the blue vinyl chair at CHOC watching the eeg tech perform the first of many…
tuberous sclerosis
It’s been 3 months since she passed away.
I have been really working on trying to get us on a budget and get out of debt, now that I have time to focus on issues like money. Louie and I just started the Dave Ramsey program and I was working on our budget this morning when I started feeling really heavy in my…
My Earthly Journey with Tiara has ended, she is now in heaven…
My middle baby, Tiara Jeanne Goff passed away from complications related to Tuberous Sclerosis at home on January 15, 2015, surrounded by her family. She was 16 years old. We placed her on hospice December 31, 2014 but I made it sound like a positive move to those who follow me on Facebook. I was…
Not much has changed….
I just read my last post, because I couldn’t remember how Tiara was doing at that time or what I wrote well over 3 months ago, but after reading it, I realize not much has changed. I continue to receive emails, messages, and fb posts from readers asking for an update on Tiara. I know…
Sometimes there are no good options….
Today I cried in front of Tiara’s neurologist as I described our life and Tiara’s current state. Tiara is completely drugged most of the day, but not a good drugged. She is drowsy, irritated and frustrated and can’t stop eating. She has gained 30 pounds since April and crawls most of the time because getting…
In and out in less than 24 hours….
I have been silent on my blog for over a week and after posting an update on Facebook regarding Tiara and her possible admittance to the pysch ward at UCLA, I went dark. I was so devastated thinking about leaving her in the hospital alone, I couldn’t really talk about the situation to anyone except…
Checking emails in Target…
Wednesday we made our daily trip to Target despite the hurricane like conditions in Newport that day. (This is me teasing, but it was really windy.) Tiara decided she was in the mood to walk but after forging through the windy parking lot she was ready to turn around and go home. As we entered…
I shouldn’t have said it!
Yesterday I was bragging to Tiara’s teacher that she has been doing so well. She has been more verbal, following directions and overall just good. I have been asking her to throw things in the trash, help clean up and she has been doing it. I have been so excited and then last night her…
She did it!
Yes, Tiara survived her annual MRI at UCLA and she did great! We left the house at 4:30am, and arrived at 5:30 am, just as planned. The driving in the dark was the worst part for me, even though Tiara had a blast. She sang and danced all the way their. Once we checked in…
Tt is back to her old self!
It’s official. Tiara is finally back to old self, pre-hospitalization. She is back to jumping on the trampoline, playing basketball, swinging on her swing, and stealing food from the pantry. The house stayed clean for several weeks when she wasn’t able to walk freely, but now it is back to it’s original state of torn…