Before I tell you about Tiara, we have to talk about Valentine’s Day again. Sorry. Well as you remember I mentioned I wasn’t doing anything and Tabitha sighed in response to my comment. Well, I now know why she sighed. I guess she thought it was her responsibility to do something if neither Lou nor…
tuberous sclerosis
Her kidneys still aren’t behaving themselves!
I pretty much did nothing this weekend except worry about Tiara and take care of her. Tiara has been very quiet and seems to being having lots of seizures. I kept meaning to email her neurologist to see if she thought we should increase her medications while she is still recovering and I finally got…
Feeling a little overwhelmed…..
I haven’t written a post or gone on Facebook since we got home from the hospital on Tuesday afternoon. Why? Yes, I still love you all, but taking care of Tiara at home is a huge job. I was so happy to get home, I almost forgot how hard it is after a long hospital…
Tiara update 1/29/14
I know I said I was going to take a few days off from posting but I changed my mind. I just wanted to reflect on the dinner I had last night. Every Tuesday a free dinner is provided for the families who have children in the icu. The dinner is donated by a restaurant,…
This whole thing sucks!
Not really in the mood to blog but I know so many of you care about Tiara, so here is the update. Just met with the doctors for rounds and they said her lungs are almost whited out like last March and she is getting sicker. They would like to intubate her now but will…
We can squeeze you in…
If you have ever had to deal with a medical issue you know how difficult it can be to get an appointment with a specialist. So difficult, it is a joke. When calling to schedule I always prepare myself mentally for them to to give us an appointment at least 2 months out. If they…
Is it bedtime yet?
I have been waiting for bedtime since 2:00 this afternoon and I still have 7 hours to go. UGH! I am writing this on Saturday afternoon and am so over my weekend I wish it was Monday. I know I have said it before but weekends are treacherous for me. No schedule, no routine, a…
We found it!
Yes, we finally found my phone once Lou got home from work last night. I showed him the spot in question and he said it wasn’t stuck in the ivy but over the fence. Thank goodness. He walked over to the neighbor’s but she wasn’t so he called her and left her a voicemail. I…
She did it!
Yesterday Tiara had a ton of dental work done under anesthesia and wasn’t able to eat until the late afternoon and she did it! I followed my plan of getting her up at 5:30 am and feeding her and doing her meds. We went for a walk and after that she slept. I actually had…
Where is my swing?
As many of you know Tiara spends a great deal of her day sitting on our porch swing in the back yard. For the past 6 months she has become rather obsessed with swinging and jumping in the trampoline. I am pretty sure the motion is good for her brain and helps calm her. The…