Friday, March 12, 2010

By the Way Doctor, I Forgot to Mention…

This past summer, Taylor loved just watching this

truck go 'round & 'round.

You know, I could tell you more than you would ever want to know about seizures, Trisomy 9p, g-tubes, and a myriad of medications. What I don't know a lot about is congenital heart defects. I didn't know that 1 in every 125 babies born in the USA has a congenital heart defect.

Because Taylor's heart defect was never a big issue as she was growing up, I never thought of her as a "heart baby". Apparently she is…or was. Now she's a "heart girl". There always seemed to be something else trying to take Taylor away from us that didn't involve her heart. Seizures have always been the big, bad evil thing going on in her life…they still are.

However, now that Taylor is in the first stages of heart failure, I have to start thinking of her heart first when she gets sick. A couple of weeks ago, when she was sick on the weekend and we had to take her to Urgent Care, I actually forgot to mention to the doctor that she has a heart problem. After listing her main diagnosis and the seizure disorder and all the seizure meds, I just forgot failed to mention that Taylor has a heart defect. It sounds bad, I know.

It's just that Taylor's seizures have been the main focus for 18+ years. Her seizures have been what put her in the ICU on a ventilator more times than I can remember. Now, it seems, I have a "sort of new" issue that I have to remember to tell the doctors. That way they won't freak out quite so much when they see her blood pressure and I have to go, "oh yeah, by the way…".

Wednesday, March 10, 2010

Bad Blogger

Taylor has a thing for playing in her sister's kitchen drawers.

I've been a bad, bad blogger lately. I think it's because things have been so hectic around here with everyone being sick and the business being busy that I didn't want to do a whiney post. But let's face it…the past few months have been whine-worthy.

However, I'm not going to give in to my inner child and be a crybaby. There are lots of good things I can post about that have been going on. While Taylor did have pneumonia…AGAIN…it wasn't as bad as the last time and she seemed to handle it better.

The business has been crazy busy with many, many computer coming in. Now that can be kind of a double-edged sword because we are so busy we barely have time to relax, it also means we don't have to worry about money. In this economy…that is huge. The Bossman and I did get a chance to get away from the office/house/Taylor/computers for an evening. We went to a Portland Winterhawks game. Man it was a good game but then I'm a bonafide hockeychick and any hockey game is a good one. The Winterhawks won and it was so nice to just be out with The Bossman, cheering on the team. He is looking to get us to at least one playoff game as they had a great season.

Taylor has been enjoying spending lots of time with her sister. Taylor loves playing with her 2 ½ year old niece. They are so funny together. It lets her get out of the house for awhile, gives me some time to just get stuff done without having to take care of Taylor, and since Brandy is Taylor's respite care worker, she gets paid…it's the trifecta of good things.

Hopefully, as time permits, I can start catching up on my friends' blogs. I really have missed reading them and I've definitely missed chatting with everyone.

Here's to a slightly slower paced life…at least for a week or so. *laughs*