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Tuesday, February 26, 2013

Pseudo 3rd time in a row?????

 Eeeeek, is it Pseudo AGAIN????
I got a call from the CF nurse yesterday around 4:15pm, but of course I was at work and didn't hear her message until I had my dinner break. I hate it when that happens, b/c then I have to wait til the next day to call them back since it's after hours. So naturally, my husband and I think the worst...that he cultured Pseudomonas yet again:'( That seems to be the only time the CF nurses ever call us. 

Needless to say...I didn't get much sleep, b/c if he did culture Pseudo this 3rd time in a row, then he would have to do TOBI every other month. TOBI is really hard on all of us. Lil' Chris has to sit there for ONE WHOLE HOUR in the morning before school AND ONE WHOLE HOUR before bed, whereas we are used to just doing his Vest for 30 minutes in the AM and PM and we do the Pulmozyme the same time as the Vest in the evening, but adding TOBI was putting another 20-30 minutes onto his daily routine. We made it through the last 2 times he had to do it for 28 days each, but we were REALLY looking forward to not having to do it for awhile.

So, I got a call from the CF nurse just as I was about to take Lil' Chris to school this morning and I braced myself for the worst news possible......but.....she said that he DIDN'T culture Pseudomonas!!! WOOHOO!! Praise the Lord!! I was so excited!! I of course let Lil' Chris know the good news right away!! It didn't even phase him...all he kept thinking about was how he was taking his 50 words/flash cards that I made to show his teacher that he can read them:) He's such a laid back kid when it come to his CF! I've seen CF kids get so emotionally involved with their CF that it's so hard on the whole family, yet Lil' Chris just takes everything that's thrown at him like it's nothing. He just does what's best for himself! I love this kid:)

What this means, is that the Pseudo may have been successfully eradicated! There will be no changes in the rest of his meds and treatments. He will get another throat culture at his next 3 month check-up on 5/8/13. Then the worry game will begin again. Please keep Lil' Chris in your prayers that the Pseudo never comes back again! A CURE is right around the corner, he just needs to stay as healthy as possible until all us CF Mommy's and Daddy's can raise enough money to fund the much needed research for that CURE, since it is not funded by the government. Please help support CF and make a donation today or sign up to walk with us on 5/5/13!! Click here or you can always click the Great Strides link under the picture at the top and to the right of this blog:) Thanks so much!!

I had waited to update my Great Strides video for 2013, b/c I didn't know whether I was going to have to add that he does TOBI every other month or not, but now that I know his TOBI has been cancelled for next month until he gets another culture, I can post my finished product:) I must say, it's always hard updating this video each year, but I am super happy not to add TOBI in for every other month!! Praying next year there won't be any adds!! Here it is, my Great Strides Video for 2013, sorry it's mostly the same, but I like the back story, and I did add some new pics at the end:)....
Don't forget...I have 2 CF fundraisers coming up next week. Thirty One Party on Tues March 5th at 6pm and Arbonne Party on Thurs March 7th at 6p, both at my house:) Let me know if you can make it and for directions!! You can still order even if you can't make it to the fundraiser...a percentage of each sale goes towards a CURE for Cystic Fibrosis!!! 
Thanks, 
M

1 comment:

Amy said...

So happy to hear that the Pseudo is gone! Good luck with your fundraising! I hope your parties go well.