Reflux, Enzymes, and "Team Lilly"

We had our second visit with Dr. Kanga today and I think, all things considered, it went well.  At first, I was very concerned.  When we weighed Lilly she only weighed 9 lbs. 2 oz., which is exactly what she weighed a week and a half ago.  I was devastated and thought I would break down in tears at that very moment.  But Dr. Kanga didn't seem terribly concerned.  He said that she has actually gained weight well since her last visit and explained the discrepency by the difference in scales.  That was comforting.  He has advised us to keep her on the same amount of enzymes (2 at this time) and has (FINALLY) prescribed us Zantac for her reflux (can I say, "thank God" enough??)  I really feel strongly that is one of her problems right now.  Poor Lilly spends her days soaked from spitting up constantly.  She cannot lay flat and she often gets choked on her spit up.  For a while, I was terrified it was mucus from CF, but I realized after studying up a little more that it is more likely to be reflux.  I think after discussing it with Dr. Kanga and the CF team that they agree, at this point, with that diagnosis as well.  He has also suggested we switch to Enfamil AR, if necessary, so if the medicine still doesn't help, then we will try a formula with some rice cereal mixed in to see if that helps.  So I am hoping and praying that the Zantac will make a difference.  Lilly is a precious little girl when she is happy and comfortable, but reflux and malabsorption issues make her difficult sometimes.

As for respiratory issues, we have none at the moment.  I have been very scared that respiratory problems would start early and often.  Although no promises have been made, we aren't seeing anything yet.  We will do x-rays and cultures at our next visit to find out a little more detail, but until then Dr. Kanga seemed to think her lungs are healthy.  We are continuing our chest percussion therapy twice a day and Denesa, our respiratory therapist, has assured us that at this point, it is more preventative and that she is "not that important" (for now).  I am praying that she stays "not very important" for a LONG time, but know that the reality is we will need her much more down the road.

We also discussed with Dr. Kanga the problems that result in morbidity in CF patients.  While that is a question I dreaded to ask, I felt it necessary.  As a lawyer, and as the person I am, I am conditioned to have to know all the angles, all the possibilities.  It is the only way I can accept what is going on - ignorance is not bliss to me.  The unknown is so much scarier.  As I suspected, the real issue is chronic lung damage.  So the fight is to keep her lungs as healthy as possible.  Dr. Kanga said that even when the pseudonomas (I hope I am spelling that right) appear in her lungs, that is not the beginning of the end - rather, they can be eradicated, although they are likely to reappear again and again.  But at least we can, and will, treat it aggressively.  I feel as though the healthier I can keep her respiratory system, the better chance she has to live a LONG and healthy life.

As for us, I think we are doing better.  Jeremy has done wonderful in accepting the diagnosis - I have struggled much more so with it.  Despite knowing, logically, that CF is what we are dealing with, I still wake up some mornings thinking that it was all a bad dream.  I still fight the acceptance.  But these days I wonder if I will ever truly accept that Lilly has CF.  I used to characterize it as denial.  But I don't think it is denial any more.  I know that she has CF.  I know that until a cure is found, she will always have CF.  But I think that "fight" in me, that refusal to accept, is actually a refusal to accept that CF will end her life one day.  I feel as though a part of me is working towards channeling that anger, that negative energy, into something positive, into the "fight" that I need to wage war against this disease.

So I have been exploring options on how I can empower myself to help my little girl.  I have contacted the local chapter of our CF Foundation to find ways to become involved.  I have talked to a local person who does fundraising for CF and I am hoping, as things become more routine for us and we are not so overwhelmed, to become actively involved.  I am also reading and learning everything I can about CF - the more I know, the better equipped I am to take up the battle.  It feels good to be doing something.  So don't be surprised if you get an email, letter, voicemail, etc. from me one day asking for support for a CF fundraising event.  I have asked many for money before for many other worthy causes - but this one is extra special to me and I am finding myself becoming very passionate about providing researchers the money they need to find the cure.

Along those lines, my beautiful, wonderful, could-not-live-without-them friends have already picked up the gauntlet and started such fundraising efforts.  My dinner club girls/sorority sisters have launched "Team Lilly" to help raise money for the local "Great Strides" walk in Lexington.  In talking with those familiar with fundraising efforts in Lexington, I have discovered that this walk is not as successful as many other fundraisers, which is disappointing news to hear.  I want to change that.  So if you have extra time, or any extra money (which I know is hard to come by these days), please consider donating your time and money to "Team Lilly" and finding a cure for CF.  You may do so by going to

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6803&idUser=359691

which is my donation page and make a donation.  Or you can go to

http://www.cff.org/Great_Strides

and donate to "Team Lilly" as well.  Either way it all goes in the same pot.  If you have $5 or $500 - it matters not to me - I would deeply appreciate any help you can give us to finding a cure for Lilly.