Blessing's & Maelee Antics

So for last week's blessing I will say its a bronchoscope {blessing 24}. Maelee had her first and prayerfully last broncoscopy on Friday the 13th. I talked to a couple of other Mom's that have had kids with it done and I definitely know we had it easy compared to others. What I mean to say is it isn't that uncommon of a procedure. The long and short of it is this: Maelee continues to "culture" (culture = throat swab on q-tip that is allowed to grow in a petri dish to find out what bacteria is growing in the throat) for the bacteria called pseudomonas. It is a bad bacteria for CF people to get in their lungs because of several reasons.... (read here for more info). In the past couple of months she has cultured for it over and over again. It all started when we took her in for a special appointment with the CF clinic back in April because she was really coughing (enough to barf 3 times in one morning including once in the back seat on the way to the pharmacy) and snotty - enough so they wanted us to come in. The doc took a culture and said to me as we were leaving "heaven forbid its pseudonomas." Well it was and it hasn't gone away even with a round of heavy duty antibiotics. Which brings me to blessing 25 of 2008 insurance. This particular antibiotic would cost $3,600 per one month dosage if we didn't have insurance to help. Because her lungs are insisting on letting pseudomonas set up camp we were told we needed a broncoscopy (a procedure that involves a tiny camera and some saline washing in her lungs in Maelee's case) to see if pseudomonas and or anything else was in her lower lung and not just residing in her mouth and throat. Results this past Tuesday confirmed yes pseudomonas is in her lower lung. Which means 3 more months of the antibiotic for Maelee to try and get rid of the pseudomonas - on a month off a month totalling 6 months. So to anyone who actually makes it this far down in the reading the good news about this whole thing is as follows, Maelee isn't acting sick. She stopped being coughy and snotty back in April before we even started the heavy weight antibiotic (wimpy augmentin worked its magic for the symptoms before we convinced the insurance to send us the good stuff). Since then the only thing she had to be sad about was several front teeth and molars coming in. AND the other cool news is that this time around I didn't have to make 30 phone calls and produce tears to get the medicine clearance and shipped from the insurance company's pharmacy - it actually came the day after we got the broncoscopy results! It was literally an insurance miracle! The answer to Frank and I's question to the doctors as to "what does this mean for Maelee" is left unanswered. Like most things - time will tell. All that we know is even though she has pseudomonas, her body isn't acting like she does. She is happy, growing well, walking everywhere, playing the harmonica, sorting shapes and swimming (well clinging to me in the pool atleast) like a fish. We do realize of course that Heavenly Father is in charge and that Maelee like all of us is being carefully watched and blessed each day. Heavenly Father knows what we need before we need it.

Now without further delay and for our grandmothers and aunts (both blood and appointed Grandma's and Aunts) enjoyment here are some recent pictures of Maelee.

{Maelee with some of her biggest fan's - taken on the big broncoscopy day. Nana and Papa drove 6 hours total to sit with us and my Mom at PCH and wait for Maelee to be done with her procedure. This girl has lots of love surrounding her}

{Maelee enjoying one of our favorite summer passtime's with a neighborhood friend}

{Maelee about to race Chloe to see who could eat the most Kix and pretzel's off the floor after Maelee pried the lid off her goodie bowl}

{Swimming at Grammy B's house. Through several research attempts together we found the perfect time of day for 90% pool shade which equals endless time in the pool without sunburns}

{And last, Maelee with one of her favorite guys, Great Grandpa. He can do no wrong in her eyes. Every noise and gesture from him is fascinating. She stops everything to watch and learn. She was thinking she needed to play with his cane in this picture.}