Wednesday, September 14, 2005

The big day in the big city....

Monday September 12th, 2005

A whirlwind of a day starting with 2 sweat tests. Yep two. Toronto Sick Kids wanted to see if the results from the newer sweat test and the old method would be different.
Lynda from the respitory unit came and performed the Nasal Potential Difference (NPD) Measurements. ( for an explanation of this test)
I then went on to St. Michael's Hospital for a CT scan, bloodwork, a pulmonary function test(in which I blew 121%....wink, wink!) What a crazy day
At about 2 PM I got to meet with Dr. Liz Tullis. Wow, what a great doctor. Her bedside manner is the best I have seen. What a sweet lady.
She explained that by some standards I don't have CF, but by clinical and personal standards and history I do????
The way she explained it was our bodies are like encyclopedias. Each page represents a function in our body. When someone has a cf mutation, it effects how the encyclopedia is read. For example, my daughter's double DF508 would be like tearing out 2 dozen pages throughout the can't receive the information properly (or your body can't function normally)
Where my mutations, as mild as they are to several words to a paragraph missing from the encyclopedia. Easier to piece together and read.
So Toronto wants to monitor me 2x a year. They want me to meet their dietician, therapist, and cf team, so if in the future I need them, they will be there for me.
Right now, my lungs are clear, and I feel good. No treatment needed or prescribed.
I still have to be careful. Watch that colds don't go to my lungs, etc. There are not many of my genetic makeups in studies because most symptoms are mild and people don't know they have "cf". I was only dx because of Annika. I guess you can say I will be a research guinea

Annika's Big Day

Well my little monkey weighed in at 12 1/4 lbs! She has gained !!!!
She is starting to have rolls. Toronto was happy with her weight gain, and said she looked healthy. I think they were surprised by her motor skills. The little bum likes standing, jumping and when laying down arching her back in the shape of a C. She turned 6 months on this visit.
We had her started on Zantac for reflux for a few months.....I am tired of wearing
Louise also sent her home with a script for ventilin and a neb machine "just in case" With the cold and flu season coming.
Little did we know we would be using it today.
Annika started coughing through the night last night, and hasn't stopped since. I am sure it is just a cold. She is still full of piss and vinegar!
The ventilin is helping right away. (She hates having the mask put to her face...sassy girl)
We are still waiting on her culture results to see if she is growing anything or not. I will update ASAP.