Wednesday, August 21, 2013

Almost the End of Summer

Not sure where the time goes.  Had all kinds of good intentions regarding projects at home, gardening, family outings....  Seems I could hardly keep my head above water in terms of housework, meals, laundry....  Granted we've spent most of our weekends at the lake.


Our child insisted he needed a pith helmet for hunting.  We're not sure what he plans to hunt.
School starts in less than a week.  Trying to set up meetings with his teacher and staff to answer any questions about Cystic Fibrosis and to make sure he gets his enzymes, etc.
We're still beating him nightly.  Focusing on that area on his right upper lobe his doctor was concerned with after his lung scan.  He actually asks for CPT (Chest Physiotherapy).
We're assuming it's just an excuse to stay up later and hopefully not because he's got issues.  Fingers crossed.  Will have another lung scan in December.

Friday, July 12, 2013

Been Awhile -- Summer 2013

Hard to believe we started this journey with CF 10 years ago!  Seems like only yesterday...
My last post occurred in December after a CF check up in the Cities, where it was proclaimed by Max's CF Doctor and ENT that he was boring!  A good thing.  No surprises.  Adequate weight gain...

In June we went back to the City for a lung scan and appointments with the CF Doctor and ENT again.  He's gained almost 10 pounds and has grown at least an inch.  There are some issues with his upper right lobe.  So in addition to his 3 vest treatments a day, we're doing some targeted CPT (chest physiotherapy).  He'll got back in December for another lung scan and go from there.  May have to look at a tune up (IV antibiotics and hospital stay).  He has no cough, sinuses are under control...  He also had a high result after a two hour glucose tolerance test.  His fasting blood sugars were normal.  With his needle phobia, we're just going to monitor it..  Don't think he'd tolerate 2 weeks of glucose checks.  We're assuming the high result was due to excessive stress while waiting 2 hours for the second draw.

Summer means weekends at the lake and spending time with cousins -- playing in the water, watching dvds....  Noticed they're not bundled up like they were in  my last post.  We've gone fishing, attempted swimming again.  Blown up things with fireworks...  Weather has been great!

Tuesday, January 8, 2013

Happy New Year

Holidays were great!  Got spoiled with the extra long weekends.  Stayed close to town for Christmas Eve and Christmas Day dinners.   Ate way too much and visited with relatives.

Headed to the cities for appointments with the CF doctor and Ear Nose and Throat specialist.  CF doctor was pleased with our child's growth.  Thank goodness he managed to regain the weight he'd lost during his summer germaphobe phase.  Pretty much said he was "boring", which is a good thing in terms of Cystic Fibrosis.  Will need to schedule another lung scan when we go back in June since there were some discrepancies last time.  He's also improved a little bit with his pfts.  Someday he'll master it without spitting all over us. 

Then we went on to the ENT.  Discovered a few months ago that insurance doesn't cover the nasal steroid spray at all.  It's not even on the non-formulary list, so we end up paying for it 100% or about $80 a month.  So we asked about getting a generic or at least a non-formulary, which would get paid about 50%.  Also there have been some issues with bloody noses.  So the ENT suggested going off the nasal spray for a month, then back on for two, off...  To prevent issues with the septum.  Already noticing stuffiness, snoring.... Also supposed to return in 6 months unless there are issues.

Then we hit the Mall of America, Trader Joes, dinner & drinks with friends.  Next day we headed to the lake to spend time with some cousins.  The boys went snowmobiling and I took Max and his 4 year old cousin out sledding and for a walk.  Was stinkin' cold!  Went inside for hot cocoa, but Finn insisted she'd rather have a Popsicle.  Brrr!

Planning a trip to Orlando in the near future for a week of amusement park fun.  Max's aunt & uncle are joining us for a few days.  Then in February we're headed to the cities to see the Book of Mormon.  Also hoping to spend more time at Trader Joes.  Had limited space in the car with all our gear, as well as luggage and Xmas presents from an extra passenger we gave a ride to back up north.