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.

Monday, April 25, 2011

Dads View (3yrs the good,the bad,the ugly).

Well lets give mommy a break,and I'll do a little talking.                                                                                 Pardon the spelling at times,a English major I'm not.But a hard worker and proud dad I am.When Saxon was born we wanted it to be a surprise! a boy? or girl?.Well it turned out to be a boy.What a wonderful feeling seeing your baby arrive.So tiny and noisy and Wow! really hungry.Like nonstop and add a Bili blanket and daily bloodtests.But the big shocker @ wk old the bloodtest showed positive for Cystic Fibrosis.  Cysto Fibosis What? I couldn't pronounce the word.But Mindy crying on the phone told me it was bad news.
Then came the barrage of hospital visits to get medicines dialed in. The kid breathing like a Slestack (Land of the Lost).Way worse than snoring,but at least we could hear him breathing. The worries of what to expect tomorrow.Sax being in daycare and anbx. constantly.Three surgeries for polyps,bronchial lavages, and some work on the boy parts (ouch).Even with good insurance that paid 80-90% of bill.We ended up with aprox. $27,000 bill.So no more savings and very little in the ck book.Lucky I received some inheritance money from a relative.I am very grateful to them. So it got us close to paying it off.I still ended up in collections.Oh yeah i forgot about a couple of stays for pneumonia also.

Where's all this tear jerker for me going you say.

In all this murky water that's been trying to drown us. I've seen the light,(To my friends no I haven't gone churchy on ya).Even with his big sister getting jealous cause of the time we spend with treatments,hospital stays,visits.Thou we spend extra special times with just her.Mindy getting anxiety and panic attacks.And yep me crying a couple of times from from the unknown and pressures of holding everything together.Its hard when a few family members deny CF's in the family and tell ya to get a paternity test. Well I've got a blood test to prove I carry DF508,so yes it's in the family.And to the other family members and friends thanks for being there for us.   

I've learned that my wife leaving her full time job so Saxon can be healthier was the right choice.Hardly been sick from this disease the last year YAY!. Not good on the budget but we have a roof over our heads and still eating.And have been adapting to living each day and enjoying it for what it is, including another day with my family Mindy,Raine and of course another day with Saxon.

And sending thanks out to his CF Team @ Mayo for doing a great job with his health.Thanks Viki Dean,Dr Pianosi,and the rest of the gang.

And thanks to Ronnie Sharpe. Founder of CysticLife ,a great site to learn and help others with CF.Keep kicking CF's booty.I'm proud to be one of the dads on there.                                                                                                                                    

Friday, April 22, 2011

Oh my, a little behind!!

Well, I guess part of the reason I haven't had much to write lately is that not much has really happened lately.  Ok, that's not entirely true.  We've had a little bit going on, and pretty busy schedules.

So to bring things up to date:

Sax went through ECSE screening to make sure he didn't need any additional help besides the obvious complications from his CF.  He did AMAZING on these tests!!  He was in the 6-year-old range for his vocabulary and recognition of objects and pictures!!  Yay!!  We knew he was a smart little whipper!!

Sax hasn't been sick in the last 2 months, so nothing to report from that front :-) 

He's been doing pretty good on the potty training too!!  He goes a couple times a day and is usually pretty good about telling us when he has to potty.  Going #2 hasn't been quite as successful, but he's trying! When I ask him if he's done, he loves telling me "Almost Mommy!! Almost!!"  He's such a little cutie!

Since Sax was doing so well on the Duocal, it's been decided we're going to keep him on it, 3x per day.  We're also trying the Pediasure 1.5, which finally arrived today.  Been waiting for that one for a while!!  Not sure if it tastes any different - it's in the fridge cooling down, so we'll see how well he likes it when it's cold.

It's Spring Break form school, so Raine is home today and Monday too, and was home yesterday.  The kids have been playing together pretty good today, not so much yesterday, but hey, they ARE siblings.  Just glad they're trying to make my birthday a good one!! :-)

Daddy also reminded me that I need to give him the password so he can update the blog once in a while.  Share his thoughts a bit.  So there may be some more input from him on here in the near future :-)  Well, now to spend more of my day with my kids.... hopefully I'll update again soon but with all good news again! :-)