CF Clinic Visit 11/5/08 and 2nd Sweat Test

Our adventurous day started off with breakfast at Mcd's. Did you ever find yourself moving away from people who cough? When you are walking around in a store, it's easy to move away, but when in a restaurant...it's a lot harder without being too obvious. Well, at Mcd's, we were just about to put Lil' Chris in his highchair when the guy in the next table starting coughing. I quickly said to my husband, "Hey, look! There is a table that the highchair will fit perfectly under and not be in the way!" My husband new what I was getting at, so we moved to the other table with no one around it. It's not to say that the guy was contagious, but we just don't want to take the chance. While we were waiting for my husband to get the food, I got some video of Lil' Chris being nosey peeking his head up to see other people, and I got him saying "more" in sign language. Well, it's his way of saying "more" in sign language. He kinda does it knuckle to knuckle with his thumbs up, instead of finger tips to finger tips. LOL:)

At 10:00 Lil' Chris had his 2nd sweat test at the CF Clinic. I tried asking the lady questions and video tape at the same time without her noticing, hoping that she would explain what she was doing for the video, but I think she caught on that I was video taping, so she didn't say much...sorry, I tried:( As you can see in the pics and video, the sweat test is probably nothing what you imagined it would be. It is only done on the arms. First they put these 2 lil' circle things that come out of the fridge I believe, and they have medicine in them to try to activate the sweat in those spots on your arm. That stays on for 5 minutes. Then those come off and they put this lil' circle thing on your arm to try to collect the sweat. This stays on for 30 minutes. When it is taken off, the more blue you see, the better. That means that it collected some sweat. Then this is repeated with the other arm(they can be done at the same time). The first time Lil' Chris had his sweat test, there was hardly any blue. Same this time with his left arm, but luckily his right arm did sweat more. She said she thinks they got enough sweat this time. Thank God!!! I'll let you know when we get the results. Some tips and tricks for the sweat test...you can see in the pics that my husband was trying to hold Lil' Chris tight and try to put some body heat onto the spots where the sweat test was. It didn't last very long, b/c well...he is 17 months and doesn't sit still for too long;)

Next, was our visit with the CF doctor. As I was checking him in, I saw the box of kid masks sitting there and thought..."I wonder if he is old enough to wear one now?" So, I grabbed one and put it on him. I couldn't believe it! He actually wore it until we got into the room!! I was so proud of him:) They suggest that CF patients wear masks in the hallways after age 2 or 3, I can't remember, or maybe as soon as they leave them on. Hopefully Lil' Chris will wear them from now on.

The CF doctor said that he is doing great, his lungs are clear, and not to change anything! YEA!! He did do a throat culture though. I'll let you know the results when we get them. They said his weight is 24 lbs and 10 oz. and that he gained weight, but I checked my records from our last clinic visit post and it said he weighed 24 lbs and 13 oz on Sept 3rd. So, I either got one of them wrong or I'm just confused as to how he gained weight according to them???????? His height is 32.17 inches about 2 feet 7 inches. They said he grew a lot this time. I told him I've noticed, b/c now he can reach the remote from the back of the couch:)His weight went from 45 percentile to the 50th percentile! His height is in the 70th percentile! His BMI is 60. Overall, he is doing GREAT and he is on the right track!! We didn't even have to see the dietitian this time! It was so nice having a short visit, esp now that he doesn't like to sit still anymore. I have to say, my husband did a great job keeping him distracted so he wasn't touching everything. He was making him laugh and I think he even got him to tap dance a little:) You can see it in the video, it's so cute:)

The questions I had for the CF doctor were...
1. Should Lil' Chris get the RSV shots? He said that it is not necessary at his age now. He said that it is more important the first year of their life. If he were to get RSV now, he would react to it just like he would a cold. So he didn't really need it. It's probably a good thing, b/c he said they are about $400 for each of the 6 shots that he would have to get. He said insurance doesn't like to pay for it and it wouldn't be worth it for us to pay for it out of our pocket.
2. Thanks to Daniel's mom who emailed me some great info, I then asked the CF doctor about getting a Level 2 ultrasound to detect any bowel obstruction(a sign of CF). He looked into it and came back and said that their hospital does do that! He said to ask my OB about it. I have an appointment this Thurs, so I am definitely going to ask her if I can get one. I just hope insurance pays for it.

After our clinic visit, we went baby furniture shopping again since we were in the area. I can't wait til we find something and buy it so we can set her room up finally!! Lil' Chris liked trying on my sunglasses while we shopped in the store:)

To celebrate a great sweat test and clinic visit, we ate at Friendly's!! Since I had my camera with me all day, I couldn't resist taking some video of Lil' Chris doing this new thing with his tongue. I don't know where he saw it or why he was doing it, but he starting biting his tongue to the music. You can see it in the video, also you can see my husband feeding him his enzymes before we eat. He LOVES his enzymes, but he usually doesn't like restaurant applesauce. It's chunkier than what he is used to, but he got used to it and ended up eating the whole bowl! We ordered a mini burger and gave it to him for the first time to feed himself. It was so cute! He acted like he had been eating burgers like that for years! Only problem was, he just kept taking more and more bites without chewing and swallowing the first bite. So, then we had to take it away until he chewed it up and swallowed.

Overall, he did a GREAT JOB the whole day!! I was so proud of what a good boy he was everywhere we went=) We are so lucky to have him in our lives:)

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Hope you enjoyed the video and pics. Was it helpful to those who never did a sweat test before? Let me know if you have any questions,
M