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Wednesday, March 31, 2010

33 month CF Clinic Visit was GREAT!!! YEA!!!

A glimpse into our CF clinic days....



Well, I guess my sleepless night was all for nothing;) Lil' Chris had a GREAT CF clinic visit today!!! His weight was up 2 lbs!!! Yes, 2 lbs in 3 months!!! I couldn't believe it when she said he was 33 lbs!! I thought for sure his weight would be bad, but I guess all those scandishakes REALLY saved us...phewwww!!! His height was 37 3/4!! Wow, he is growing like a weed!! Both his weight and height were in the 75th percentile......that's right.......75th!!! :) I almost dropped to the floor when Dr. K told us that! I don't think he has ever been in the 75th percentile for weight! I'll take it though!!! His BMI was 55%. They like it to be above 50, so we are all good there too:) YEA!!

This visit was awesome, b/c we got to tell Dr. K that he can do some great new things:) I think he was very impressed when we told him that Lil' Chris is potty trained(except for night time), and that he can take 3 whole enzymes all at once with liquids!! YEA!!

Can I just tell you how AMAZING my son is?! He wore his mask the WHOLE time in the hallway to our room, and then the WHOLE time during getting measured and weighed in the hallway, and then the WHOLE time afterwards to the car!!! I was shocked!! I know I practiced it with him a couple of days before, but I wasn't really sure if he would do it or not. He didn't even give us a hard time about it!! He was such a good boy! As we were walking down the hallways...I was walking behind him and just started tearing up I think for different reasons....
  1. I was SOOOOOOO PROUD of him! I couldn't have been ANY prouder!
  2. He is getting so big.
  3. Just the fact that he HAS to come to a hospital EVERY 3 months for the rest of his life, and how this is just the beginning of many, many, many times of having to wear a mask;( ;( ;( I guess it just hit me. We CF parents get that every now and then.

As for all my questions for Dr. K....
  1. He doesn't recommend doing the pill form of Augmentin(antibiotic that we usually use), b/c they are HUGE!! He said they are like horse pills. So, for now we will just stick with the liquid antibiotic. Plus...Lil' Chris LOVES the taste of it;) It's like a special treat for having a bad cough;) LOL That shouldn't be funny;0
  2. The bumps on his arms could be the start of eczema...that stinks.
  3. He hasn't heard of the white palms thing being related to CF. Still not sure what it is.
  4. I got our paper for CF Services Pharmacy filled out...does anybody else use them, they give a percentage to the CFF for a cure?? If you go to www.CFServicesPharmacy.com you can print the coupon for each of your 4 visits(once every 3 months) throughout the year, and then you will be entered to win a $50 gift card for each entry....and then a $100 gift card if you go to all 4 visits and get the coupon filled out each time:) I think it is a GREAT incentive to help make sure that no CFer skips any visits just b/c they are feeling good at that time. It's still important to go every 3 months!!
  5. Hang onto your seat folks, b/c here is some GREAT news.........Lil' Chris is getting the new Blue Vest!!! YEA!!! It is machine washable!! It has an outer shell that can come off and can be washed in the washing machine!! Where was this thing when Lil' Chris was 11 months old???? At least the new CF moms will have it :) He is upgrading to the Medium. He measured at 22 inches, and the medium starts at 23 inches, so they said we can try it and he'll grow into it:) They said to give the old one away or just throw it out.
It was sad saying goodbye to Dr. K;( He was the one who told us that Lil' Chris had Cystc Fibrosis. I think he is like the only person I have ever cried in front of. He was a sweetheart, and handed me some tissues. That's got to be a rough job telling a family that their kid has a life threatening disease. He did a great job and was there for us every step of the way answering all my million and one stupid lil' questions;) "Thank You, Dr. K for taking such good care of our Lil' Chris!! Good luck with your move!! We'll miss you, it won't be the same without you!"

So another good visit under our belt. Dr. K said we are doing a great job and to keep up the great work! He doesn't want to change any meds or anything....YEA!!! Praise the Lord!!

Our next visit is the BIG ONE...the annual visit!! Dun dun dun....;) lol It is usually always near his birthday, so this year it is on June 16th. He will have to get blood work, x-rays, throat culture, and the works, and we are usually there for 3-4 hours!!! The nurse said today that the kids there don't usually do PFT's until they are about 6...so we got some time there;) I don't think I'm ready for those yet;-) lol

Thanks for all your prayers, and for all your continued prayers for Lil' Chris to keep going in the right direction:) I'll let you know what the throat culture result is when I find out.
M
PS. He finished his Augmentin and his cough is completely gone...Hooray!!! :)

7 comments:

MHughes said...

Yay!!!! What a great awesome visit! I'm so happy for you! Those visits make me so happy and we are celebrating with you! Go lil' Chris!!

Aunt D. said...

Hooray! I'm so glad everything went well!! That lil guy sure is amazing! Can't wait to see pics of him in his new vest!!

Oma & Opa said...

Oma's cry, too! What fantastic news! God is Good!!!! Remind me what PFTs are. When will Chris get his new vest? Yay Chris! Send pics to email. Alya walking, fun times!
love & kisses to you all

Somer Love said...

Yay!! Awesome news!

Anonymous said...

Yes, it's always great to have wonderful news at clinic. Way to go with the weight gain. Still trying to get my little guy to gain weight. He is 4 1/2 and weighs 33 pounds. He only gained a couple of ounces between his 3 month visits. Interesting that you don't do PFTs. We have been doing them since a 1 year old.
Nicole Smith

Anonymous said...

M, I cant believe how fast Lil Chris and Ayla are growing....she is the splitting image of you....beautiful. Lil Chris is going to be a heart breaker - so handsome...:-)
glad the clinic went off well. Carmen also went to clinic on 31 March. she lost 1.2kg (dont know in pounds)but clinic is happy with her weight and bmi. everything else seems to be ok with her. she has been given an antibiotic for a slight chest infection and only has to go back to clinic in 3 months time - yeah for her - unless something comes along. You guys are doing so great with your kiddies, you are both blessed with love. love always Charm..xxxx

Auntie Steph said...

YAY...sorry it took me so long to read this and respond...you guys received such great news at that visit! Way to go! and YAY Ayla's walking now!!!
Love you guys!