Everyday I see this topic in the news, see it talked about on Facebook and/or actually receive inbox messages regarding it. Some proponents of medical marijuana act like it is a cure for everything which I don’t believe. What I do believe is that medical marijuana can significantly help some people with certain medical issues. …
seizures
I can be so ungracious….
So we made the trip to UCLA to see Tiara’s neuro-psychiatrist and like I thought she didn’t have a great deal to offer. The good news is that when I was talking to her and discussing what has been going on we both came to the conclusion that Tiara is either toxic from her…
She finally got my face!
I know I have mentioned on several occasions that keeping my face free of scratches is big on my list of priorities. Vain, yes I am. I put a lot of effort into caring for my skin and the last thing I need is a bunch of scars on my face. The rest of my…
The vomit seizure showed up again!
I was going to tell you all the boring details of my weekend but I decided I should just skip to the “good stuff”. The “good stuff” started on Sunday morning when Lou decided we should take Tiara to church. Normally Lou leaves early for work on Sunday and Trinity, Nana and I go to…
A Tuberous Sclerosis Weekend ….
This weekend was like every other weekend in our family, BORING, except I spent a lot of time thinking about our Tuberous Sclerosis friends. This past Saturday was the Walk for a Cure in Long Beach but we were unable to attend this year. I was sad to miss it because one special girl, AMELIA,…
Super weird side effect from a new seizure medication
Last month, Tiara’s neurologist prescribed her a new seizure medication that just came on the market, called Potiga. Even though Tiara is only having a few seizures each day, which is super fabulous for her, she is so sedated she can’t do much until the afternoon each day. Our plan was to add this…
Why does everything have to be so hard?
As I have mentioned, my husband recently changed jobs. With a new job comes new insurance. For most families I am sure that is stressful but for our family it can be traumatic. Years ago when Louie was interviewing for new jobs, I used to beg him to ask what kind of insurance they…
You have to take your medicine!
If you are a parent, I am sure you have had to administer the dreaded oral antibiotics that taste disgusting once or twice to your child. As you know, it is not fun or pretty. Sometimes it takes bribery and serious coercion to get the medicine down. Well, Tiara has to take 17 pills…
Last year at this time….
As I have mentioned in previous blogs, I don’t usually dwell on the past. But because I have been trying to raise awareness for Tuberous Sclerosis this month, I keep thinking about this same time last year. It was during this same week after Mother’s Day that Tiara was supposed to be recovering from…
I finally slept and now what?
So, many of you know I pretty much function in a constant state of sleep deprivation. The funny thing is I forgot how amazing it feels to actually get sleep and wake up feeling rested. It is like a whole new world. I have been telling Lou for over a month, ” I am…