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

Tuesday, February 12, 2013

TOBI/Cipro Update & Reading!!!

Lil' Chris finished his Cipro the other day and only has a couple more days of TOBI left! YEA!!!!!

He still is doing GREAT and doesn't even have a cough or anything!! You would never know by looking at him that he has some bad bacterias deep down in his lungs just looking to cause some major trouble.

It was rough this 2nd time around with the TOBI, b/c for some reason it took longer to administer than the last time he was on it. I looked back on my blog, and on 11/10/12, I blogged that it only took 13-15 minutes for the TOBI, but this time around it has been taking like 25 minutes! That's a big difference for a little kid! Even Lil' Chris started complaining by saying, "I don't want to do TOBI, b/c it takes too long!" Poor kid. I think it might have been b/c Nurse P sent us the wrong neb cup. It was the same, but it came with a different mouth piece(one to attach to the mask, which we don't use), so we took the mouth piece from the last one and used that. We washed the old neb cup a couple times, but it still had that hard residue on it that wouldn't come off down in the bottom:( I guess we didn't wash it well the last time we used it...prob b/c we were thinking we would never have to use it again...wishful thinking I guess. Oh well, lesson learned.

He has a cf clinic apt on 2/20 where he will get his 3 month check-up and another throat culture to see if the Pseudomonas is still there. If so, then we will do TOBI every other month, but not Cipro. Praying for no Pseudo or anything worse!!!

On a good note...he has been doing really well with learning to read!! I've been working with him the last few days and he can now read 30 words!!! Tonight he read most of a book to me at bedtime! I was soooo proud of him!! I made flash cards with site words on them. We started out with 10 words the first day, and then we have been adding 10 more words each day! He's doing really well! His incentive...a freeze pop:) This kid is easy:) LOL We are praying he will get to move onto 1st grade next year and not have to go to all day Kindergarten. Right now he is in 1/2 day Kindergarten. 

We might be able to skip Preschool for Ayla, b/c she can identify all the letters, colors, shapes, and has been reading words too, b/c she has been watching me teach Lil' Chris!! We even play games as to who can find the word the fastest! I love it!! They are both so competitive and this helps keep Lil' Chris focused:) Ayla is very bright for her age...she knows the order of the rainbow(I didn't even learn that til I worked retail and had to learn to merchandise LOL:), and can tell you who's birthday is next..."Forst, it's my birfday, then Mommy's, then Chris', then Daddy's!" is what she says:) She just needs to learn to talk right. She says "f" for "th" and "o or y" for "L" and a couple other that I can't think of right now, b/c it's late;) If you ask her to spell her name it sounds like "Ayoa", but she says "yike" instead of "like". LOL I've been trying to work with her on that, but she gets frustrated and angry when I correct her. Oh, and she skips the number 13 when counting, and when I asked her why, she said that she can't say it, she just gets embarrassed...poor thing. It's a work in progress, she'll get there.

Thanks for all your prayers,
PS. Please keep Tricia(adult CFer) in your prayers as she was not able to get listed yet for a double lung transplant that she desperately needs.  Also please pray for Stacy A. from my work with Bronchiectasis, which is like CF. She hasn't been feeling her best and had to get a Picc today:( Get well soon, Stacy!!


Anonymous said...

Glad you finished up your Tobi. Daniel does Tobi every other month and his always takes 20 to 25 minutes. Which neb cup did you use the first time? We have always used the Pari LC Plus with the face mask. Let me know, but not on FB I am off for the next 40 days. Good luck on the 20th. Praying for a clear culture. Mary - Daniel's Mom

Lil' Chris' Mom said...

We used the Pari LC Plus each time, but we don't use the face mask. We were told that the mouth piece is more effective than the mask. Praying Daniel is doing well!