WOW! This week seemed to just fly by right before my eyes. Yes, the kids had Monday off from school for Presidents day but I dreaded Tuesday as if it were any other Monday... I don't even remember what I did on Tuesday, isn't that terrible? On Wednesday I picked the girls up from school early and we got home to watch the Amgen tour go through town. We went "down town" to watch with some friends because my husband said the bikes would be going around our house rather than right past our house..grrrrr We could have stayed home and watched from our yard or even walked down the driveway to see them up close. It was exciting anyway, we waited for about two hours and they were a little late coming through BUT still made it to the finish line around the time that they were expected to. There was a lot of excitement while we waited. Between the vans that were with the race going through and throwing out boxes of yellow chalk for everyone to write on the road to welcome the bikers (do you think they read anything that was written to them?LOL), to the highway patrols speeding through and the guys that came through with loud speakers talking to everyone. Lots and lots of excitement for our teeny tiny town!
Today, Friday we had to take Lindsey back to the Childrens Hospital for her check up with the CF specialist and this time she had another sweat test as did Emily, next time Carley will have a sweat test. They said they wouldn't call if Em's test came back normal and so no news is good news in this case. We didn't hear from anyone so yay! I still don't get why they are sweat testing Lindsey again though. I asked the doctor said because she might come back with a positive sweat test and if it comes back "normal" again they probably wont do it again or they may decide to do it again a year from now or if she starts presenting symptoms of CF. Okay, so they have confirmed she has CF by our genetic testing. I feel confident they are who we want to have to turn to when we need them BUT I hate that they do things "just because something might change" and they can document it for their "statistics". I know they need the research and everything but this is exhausting. I don't want my family to just be a source to fill their data base with while they "learn" more about cf. It's emotionally and physically exhausting to me to do these appointments - but you can bet I will continue because I couldn't live with myself if lindsey started presenting any symptoms that I missed.
Anyway... Everything was good and I am so thankful for that! Thank you for your prayers and continued friendship and support. ;)
Dear Rose Cards
17 hours ago