Update on Dr. Appt...

Morning Meds, 2 nebs treatments and vest therapy and we actually made it out of the house by 7:30am to head to OKC for our Dr. Appointment... Thirty minutes into the drive he is already taking a nap! :) First things first, we must weigh in... Wow, we (okay he) gained 4lbs.... we have been trying to gain weight for 6 months without gaining 1 single pound and we just made up for it.... Here is the proof!!! 46lbs...We get our blood pressure.. Lane then does his Pulse oximetry . He is always amused his finger is red... Brother Nick, does his sweat test (he was the last one to be tested) and his results were negative for CF... So all three older kids are CF free amen... Lane then did his pulmonary function test (PFT)... Scored .83 of the predicted 1.06 (not really sure if I just noted that correctly still learning).... We are counting on the score raising since Lane has only performed the test on two different occasions and they need a little practice :)
This is the swab culture that Lane had done... This picture does not look so bad, but believe me he was GAGGING...... This is to test for Pseudomonas....This was the highlight for Lane.... He waited for this moment all week.... its ME... Yes Lane could not wait until mom had her poke... We are trying to determine on which side of the family the delta f508 gene is on, so it can easily narrow down testing for family members wanting to do gene testing to determine if they are a carrier or not... so this one is for you Lane... Love ya...Now it was time to enjoy the rest of the day with a treat. We ate some pizza and played some games... I have been trying to attach something fun with each visit... Hopefully always making good memories one visit at a time....

And look, shortly after starting home Lane is out again.... wearing the well earned stickers across his shirt....
Made it back home 10 hours later and started treatments all over again... Exhausted...We accepted the offer to join 40 other subjects from approximately 16 study sites in the US and Canada in a study for (PERT) Pancreatic Enzyme Replacement Therapy. Pert has contributed to a significant increase in the life span of CF patients. This study is for Ultrase MT12. In the past FDA did not require the approval of these drugs, however starting in April 2010 the FDA will be regulating and requiring approval of the safety and effectiveness of these enzymes. Lane is currently using Creon 10 and will continue to for the first half of the study and then switch to the Ultrase for the second half.... The study seems to require allot of information, but will only take place over the span of 38 days. So we are going to give it a try, knowing it will benefit the many CF patients that use the drug. Although we do not currently take Ultrase, I still feel we can benefit from participating as well. Hopefully we will discover which enzyme works best for Lane as well as receiving some testing free of charge that would otherwise cost us as well as our Insurance.... I am grateful to be able to work really closely with the nutritionist during this time period learning as much as posible about Lane and his diet as well as receiving additional information about the extent of Lane's medical condition concerning his pancrease and digestive system . So Lane will start this next week...