Of course I’ve missed you all but I am sorry to report the move was worse than I could have ever imagined. Lou and I have never been more physically and or emotionally challenged, as we are right now. We moved in to our new house a week and half ago, and I have just…
autism
Are you a work widow?
The other day my friend offered to help me set up for the Tuberous Sclerosis picnic in August because I commented to her, “Lou will probably be working and not able to attend the picnic this year”. She said “Oh, I know what it is like to be a work widow, I will help!” …
The backs of my legs are throbbing again!
I know this may sound really weird but whenever I get really stressed the back of my legs behind my knees, throb and pain. Has this ever happened to you? It started last year when Tiara was in the hospital for 3 months. At first I thought it was from sitting upright in a chair…
I only had to do the Heimlich once, but we survived!
So, as most of you know, I took Tiara to the fair yesterday. It was super humid and hot but I decided to forge ahead and follow through with my plan. At 3:30 Trinity and I loaded up the car, with 15 cans of food because every person who brought in 5 cans before…
Re-entry is always hard…
So I am forgoing my normal Monday post , My Journey with Tiara, as I am way too emotionally and physically tired, to rehash Tiara’s past medical history. In addition, that post always takes me several hours to write and I don’t have several hours to spare today as I am having 11 people…
Tiara, soon to be a freshman….
I was just thinking about the end of the year activities for Trinity and realized that if Tiara was still attending school she would be graduating from 8th grade in a few weeks. How did that happen? Wow, I can’t believe that she is supposed to be going to high school in September. I…
Another amazing trip to UCLA for the day….
So yesterday Tiara had a long overdue check up with her neurologist at UCLA. I have been trying to get her appointment since last December but they couldn’t get her in until yesterday. FYI, they have the best epilepsy department on the West Coast but you can’t really ever get in to see the…
What I have been hearing around town….
So apparently, I have learned from several sources that people are concerned about me after reading my posts. I so appreciate your concern, but what some of you may not realize is that most likely by the time you have read my post for the day, whatever issue I was complaining about or fretting…
Team Tiara, stepping forward to find a cure…
May is National Tuberous Sclerosis Awareness Month. In an attempt to help find a cure for TSC and bring awareness to Tuberous Sclerosis our family has formed “Team Tiara” for the upcoming TSC’s Step Forward to Find a Cure walk in Long Beach on May 19, 2012. It is estimated that every…
Why do I even bother?
Have you ever done something nice for someone and then immediately regretted it? That is how I felt today. Spring Break was so long and now that everyone, except TT and I were finally back to work and school, I thought it would be nice to do something new with Tiara. She is always…