Our old CF Commercial that plays on MCTV. Still working on this years.

Wednesday, April 22, 2009

Clinic Appt. 4/22/09

Today's CF clinic appt. went GREAT!!! I couldn't believe it!! Another GREAT visit!! Thank you Lord!!

I know these great visits aren't going to last forever, but I'm just SO excited!! I was shocked when the triage girl said that he is over 27 lbs. and in the 55th percentile!! His height is 34.5 inches and in the 75th percentile!! His BMI is 65%!! The CF doctor said his lungs sound great, his height and weight is great, and his BMI is still above 50%, which is great! He said not to change anything. So we are still going to do 3 enzymes with every meal and snack, 2ml of Vitamax, and 15mg Prevacid solutab.
I had tons of questions for him...luckily I wrote them all down last night and kept thinking of new things to add to the list all night and this morning;)

  1. Q: Does it matter that we started giving him his enzymes whole with the applesauce instead of sprinkling the little seeds on top? A: No as long as he doesn't choke on them. I don't care how he gets them as long as he gets them.

  2. Q: Does he still need to be on the Prevacid? A: Yes b/c it helps the enzymes work better. I asked if he would be on it for the rest of his life and he said yes probably. So that kinda stinks...but I can't complain b/c who knows where he would be today if he hadn't been taking Prevacid all this time. If something's not broke, don't fix it...that's my theory;)

  3. Q: Is baby food still ok? A: Yes, anything to get him as many calories as possible.

  4. Q: Should we be adding extra butter and cream to all his foods to add calories? A: Yes you should be adding this to his foods, but it doesn't have to be every time. (I have to admit that we haven't done a good job at adding extra calories to his food. That's why I was worried about his weight. I added some cream for the first time to his milk yesterday, b/c CiCi a new CF mom I met thru this blog told me that she always adds it to her little girls milk unless they are out. Lil' Chris didn't mind it, so I think I will continue it. I just usually try to give him high calorie foods instead.)

  5. Q: We have to change the frequency from 12-14 after 10 min. on his Vest...is there a way to program it, so we don't have to change it? A: The physical therapist said she was going to check on it and get back to me.

  6. Q: Are saline humidifiers ok? A: NO, I would stay away from humidifiers. Unless you clean it EVERYDAY, mold grows on it. Mold of course is not good for CF lungs.

  7. Q: Our Pediatrician wants to know if you can do a lead test at his annual appt. in July so he doesn't have to get blood work done twice? A:Yes I will add that.

  8. Q: Can I get some samples of Prevacid, Vitamax, and some syringes? A: Yes. They gave me a bottle of Vitamax and 12 Prevacid capsules, and 2 syringes for the Prevacid. He also wrote out a prescription for both since I have been having so much trouble the last 3 or so months in getting refills.

  9. Q: I heard that most CF clinics use dance revolution and Wii with their patients. My store is selling an American Idol dance pad that just went on clearance for only $3.99 and there is one that 2 people can do at the same time for only $5.99. Would the clinic be interested in purchasing them for the clinics? A: The physical therapist said that she is going to find out, b/c they have a certain budget to spend and these would be great to use and they are really cheap. She is going to get back to me.

  10. Q: Is there anyway for you to get in touch with the CF patients around my town to see if they would be interested in walking at our new Great Strides walk in town? A: The social worker is going to get back to me. She asked me if I had a flyer, so maybe that meant they could put a flyer up at the clinic or something(of course I didn't have any with me at the time:(

The doctor did a throat culture, so I will let you know if he grew any bacteria as soon as I find out the results. Hopefully he didn't grow any this time.

Our next appt. is our annual visit on July 8th at 8:30am. The doctor said that he is going to have to get a shot(I forget what it is for though, but it lasts for 5 years). He didn't say what else he would get, but I'm guessing x-rays, blood work, shot, dietitian, social worker, physical therapist, and regular CF doctor visit. This will only be our second annual visit, but from what I hear this is what they usually always consist of.

I know a couple of other CFers had their clinic appts. today too, I hope all went well. I look forward to reading all about them.


PS. Did you see what the hat says in the pic above?


Graciy said...

yay! On the good visit. I have a question though. How do you give him his prevacid? I have only seen it in pill form.

Anonymous said...


Julie said...

Great news! Glad it all went well

Anonymous said...

Yeah for good news! Great pics!

Julie said...

Yahoo, great news! Love the hat.

CFlover said...

I am so glad you guys had a good visit!!!
Let me know if the vest can be set...That would be awesome and we have yet to figure out how!!

Katey said...

Glad lil Chris had such a good appointment! He's doing awesome!

Auntie Steph said...

That's such great news...another good visit! Praise the Lord!

Zoe Isabella said...

Yeah!!!! Wonderful appt.!!!! :)
I will pray for a good clean culture report as well!
Great Job!!!

Aspiemom said...

That's such an adorable picture of him looking out the window!

Yeah for the good appt! I'm so glad! Isn't it weird that while everyone else is supposed to cut down on non-heart-healthy things like butter and cream, CFers that are PI are supposed to add them???

Aunt D. said...

That was such a great post M! I'm so glad Lil C's appt went well & that you can breathe a sigh of relief! He is just too cute - both of the pics you put up were adorable & I love the hat! Where did you get it?

Oma & Opa said...

I just love good news like this. Love the pics too. I can't believe next Saturday is our first of 2 walks! I thought I had a head start on things this year but I guess I need to start even earlier next year. Still waiting for an answer from Wendy's. I was told that we need to have about 100 people over their regular amount for the fundraiser to be worth it cause we get 10% and they have to have extra help for the time of the fundraiser. I asked if we could work and I was told no. I am supposed to hear from the person in charge by the middle of next week. La Pizza & Danny's Pizza Pazzazz have been our best fundraisers so far.
Gotta go, going to Steph's for Dad's birthday.
Lots of love, hugs & kisses to you all,

Leslie said...

M- I am SOOO behind on reading blogs... life is just busy right now! I am so glad to hear that Lil Chris' clinic visit went well. I loved you Q & A's that you posted. I was going to tell you that Ashley was on Prevacid for a few years. Then about 6 months ago the dietician wanted her to start taking Children's Tums. But we were told that they do similar to the Prevacid so not to take them at the same time. At that time we then asked about taking her off of the Prevacid. We are also all about, "If it's not broke, don't try to fix it", but our theory is also, "We can always put her back on something if we try her off of it and realize that she needs it". Anyways, she has done great without it and... we are saving about $300 a month! Children's Tums are only $3.00!! Obviously you need to do what is best for Lil Chris and what your CF professionals think but thought I would throw that out there to you in case you ever wanted to bring that up and see what they thought.