This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Thursday, April 22, 2010

Undiscovered Talent

I tried my best to wear Saxon out yesterday. And Raine. We walked to pick her up from school, then walked around the lake which is about 5 miles. Fresh air is good for the little man!! Unfortunately, the pollen counts are high and Sax is 'predisposed' to having allergies. Scot has them, and I only had hayfever, but now have developed allergies. Our house is MISERABLE when everything is in bloom!!

Saxon is done with his TOBI for now... 21 days with the TOBI nebulizer. We haven't tried out the new nebby the pharmacy sent us because we still had some of the last TOBI left. We don't think Saxon will tolerate the new nebby very well either. I actually don't think he's old enough to understand how it works. With the current nebby, he puts the end of the cup in his mouth and inhales the medication, or we put it by his face as he's drinking his sippy cup. It takes about 15-20 minutes to do his nebby. With this new nebby, it's inhaled nasally and supposedly only takes a few minutes. However, he has to inhale the medication and hold it in for a minute. He's not going to be able to do that yet.

Starting tomorrow, we're back to Albuterol nebby's twice a day. I'm not sure if we're supposed to be doing the Pulmozyme again or not. I guess I should call Vicki, our CF nurse in Rochester, tomorrow to see what she thinks. Hopefully the answer will be no. Saxon's medical regimen is:

3 Creon 12 capsules with each meal/snack
1 ml Zyrtec once daily
1 ml Zantac 3 times daily
1 vial Albuterol 2 times daily
1 ml AquaDEKs multivitamins daily

Plus his couple of beatings. He's actually pretty low for his quantity of meds right now... Which is a good thing!!!

Well, my DARLING, ADORABLE little man has found a way to SERENADE his mommy.... He played his song for mommy last night - kind of an early birthday present. His instrument of choice - a TEAPOT. Yes. A new purpose for a girl's playtoy. He 'plays' the teapot by putting the spout into his mouth, and humming/yelling through it. And "shhh" means "crescendo." I know Saxon is just practicing for his big debut. We have a musician on our hands! His sister thinks she's a singer, so maybe the kids will start their own band!!

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