Denver...Cailee update

Cailee had her doctor's visit with her Nephrologist this past Thursday. My Mom came down to go with us...which I am forever grateful for. The drive between here and Denver is pretty, but really windy. We had a great visit though.

The doctor's visit was very infomative. Her Nephrologist was very pleased with how Cailee physically looks right now. We talked a lot about why we weren't trying different treatments and I have a lot more confindance now that we are truly doing what we can for her. We aren't going to do a biopsy because all it would do is give her Nephrotic Syndrome and specific name, such as FSGS, ect. It's not worth the pain to "give it a name". We wouldn't be treating it any different if it had a specific name. She talked more in depth about what the future may hold. I asked about what percentage of kids like Cailee have to have a transplant by the time they are teenagers and she said about 60%. That sounds a lot more promising. She also said that with the other 40% that some of those go on to treat the symptoms and live normal lives for a really long time. I am now praying she's in that 40%. We talked about a number of things and I feel like it's not so gloom and doom at this point.

Unfortunately we will be adding more meds to the list that she's already taking. The last blood work came back saying she has a really high cholesterol level. Hers was 303 and they normally don't like kids to go over 150. Unfortunately because it's from the NS, it can't be changed with a diet. She said that even if Cailee was on the strictest diet possible, it still wouldn't change it. So we have to turn to modern medicine. Her Neph. said that if we don't start treating it now that she will be facing heart disease by the time she's in her 20's/30's. I think we'll get a head start and avoid that. I don't like the fact that it's one more medicine, but I think it's better than the alternative.




















Overall, we were happy with the appt. Afterwards we went and checked into the hotel. (Thanks Fairy Godmother for all your help...you are awesome!) Once settled we went and ate dinner at Applebee's. It sure was yummy! We went shopping for a bit at the mall...which of course I love to do! After I took Cailee swimming while my Mom relaxed with Madie. We had a great time and I'm glad we had a chance to sit down and talk with her doctor face to face.

Funny story: The next morning the alarm clock went off when we were still sleeping. My mom hurried to get it turned off, but it was hard to see since it was dark. Once she got it turned off, she looked at the clock and it said 6:30. We went back to sleep and Madie woke up about an hour later. I got up and fed her and she fell back asleep. My mom got up and showered and we decided to just get ready and take our time. We went down and got breakfast about 8:30 since continental breakfast was till 9:00. Cailee and Madie were really sleeping hard, so we just let them sleep. Cailee woke up a little bit later and I got her ready. My mom went down at about 10:00 to print off google directions while Cailee finished eating. She came up and was laughing. She said, "you won't believe this" and handed me her cell phone. The time on her phone said 8:10. The clock in the room somehow got turned ahead two hours. We actually got up at 5:30. We couldn't believe it...we could have slept in a lot longer. Oh well, we got a good laugh out of it all!

Special thanks to Alissa and Mindy for taking such good care of Abby and Brandon. They had a blast at both of your houses and I am forever grateful for your friendships. I knew my kids were in good hands and it made it so I didn't have to worry. You two are awesome...thank you, thank you!