Many of you know Tiara completed a sleep study at CHOC several weeks ago which was long overdue. After talking with the technician I got the feeling the doctor was going to suggest/order Tiara use oxygen to sleep, but I figured I wouldn’t worry about it until he confirmed my suspicion. Friday afternoon we had…
daily life with tiara
Trapped in the car with no where to run…
This post is just another reality life blog story about me getting beat up by Tiara. This event happened Thursday night even though you aren’t reading this until at least Monday. Thursday night’s Trinity has gymnastics at 6pm for which we leave at 5:45p.m.. I was hoping Lou would be home from work so I…
Peanut butter anyone?
Today I decided to try a different approach for cleaning the house and working on my blog. After our walk, Tiara usually takes a nap and I work on my blog, but today I decided to work on the house. I started organizing my super messy closet and then Tiara woke up early from her…
We survived the sleep study!
To be honest I have been avoiding this sleep study for 5 years. Yes, for 5 years doctors have recommended it and because Tiara’s seizures were always the priority this outpatient study continued to be put on the back burner. After her last hospital stay which required she go home on oxygen for sleep 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…
What it felt like to be away from home…
Yesterday I talked about everything we did in NYC and showed the pictures but I never touched on what it felt like to be away from home. To be honest, it felt wonderful. It was so odd waiting in line at the airport watching people stress and feeling completely at peace as if traveling was…
We found a chore for Tiara…
As you all know, Tiara makes more messes and causes more chaos than anyone in our home and until recently she didn’t have any chores. How can I find a chore for the queen of destruction? Tabitha and Trinity are supposed to keep their rooms clean, make dinner once a week and help me with…
In a panic
I woke up this morning at 4:45 am and was totally panicked. I was still tired but knew I had to get up and get some stuff done or I would act like a crazy person all day. I needed to start marking stuff off my list so I wouldn’t feel so worried. Sorry, but…
A few interesting things I have seen in the past 2 days
On Wednesday I went for a walk by myself. I don’t think I have done this in over 2 years. It was really cold and Tiara wanted to see her grandma so she came over to visit earlier than usual. I was going to work out at the gym but somehow Lou took my car…
A crazy night and why I need to worry
Our trip to NYC is only a week and half away and my biggest concerns are Tiara will get sick before or while I am gone and Lou won’t wake up in the middle of the night when she needs something. As every family knows, Mothers are Fathers are wired completely differently. Moms hear everything…