So my room is done and I really like it. The weird thing is that all my previous accessories still look good, so no need to buy anything new. I really wanted to add a white funky Ikea light fixture but that would require an electrician so I am going to pass for now. I…
developmental delay
NO MORE FOOD !!!!
Today I am losing it. Tiara won’t stop eating and it is driving me insane. Over the past 2 years she has steadily gained weight because of her medications. Sometimes she is insatiable and no matter what I feed her she wants more. She is in one of those phases and I feel like I…
4 Hours with Tiara and her life is forever changed!
I mentioned last week that I was considering getting more help with Tiara. Before I left on vacation I called the agency that is supposed to provide a caretaker for Tiara 20 hours per week and have not done so for the past year. This agency has a contract with Regional Center and they are…
Tiara’s stripping has escalated!
As I have mentioned before, Tiara is known to whip off her top if she is in the dress section of a store and see’s something fabulous she must try on immediately. Well, the problem of taking off her clothes has escalated and is now officially considered ” a behavior” that needs to be stopped…
Just when I thought it was getting better, everything went back to normal
So, I have to say this weekend, which I was dreading, turned out to have some really surprising high points. Trinity and I took Tiara to Target and the market on Friday, two public places in one day, is really pushing it, and at both places, she actually walked, wasn’t in her wheelchair, and…
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!” …
Try not to laugh…
As I have mentioned or rather I think I have mentioned, Tiara has the worst table manners in the history of mankind, including cavemen. She has never been great in the table manners department but ever since her surgery last year her manners are non existent. We are not sure whether it is because she…
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…
I hate your face!
I bet you have never heard the expression, “I hate your face,” until today. Well in our household it is a very common expletive that Tiara yells to different people throughout the day at least 20 times, starting first thing in the morning. When we first heard it we couldn’t help but laugh because…