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. 

Friday, December 14, 2012

What Happened to Autumn?

Can't believe how quickly time passes!  Since my last post we've celebrated Halloween!  This year our son wanted to be a Mummy!  I glued gauze to a white shirt, wrapped his head.  Unfortunately I was unable to find any white sweatpants.  Most were located in the girl's department and had pink or purple glitter logos.  So I opted for.... Shhhh!  Don't tell him... Off-white tights, which I referred to as pants with feet.

Here he is at our friend's home after getting a bag of loot.  They always get him the coolest things, although this years included Mexican Jumping Beans and those creepy little things ONLY jump in the middle of the night when everyone else is sleeping or gone.  Try watching Criminal Minds and hearing the scritch scritch of jumping beans in the dead of night.

Next up we had November and cooler weather.  Snuggling in on weekends with his furry brother.

We also had Thanksgiving with a over 48 relatives attending.  You may recall we also had a special meeting (intervention?) at his school in October.  As parents we had to take 2 extensive tests regarding behavior, psychology....  Results came back and our child is normal.  Not attention deficit.  It was explained that if he truly had issues, it wouldn't just be happening at school and we as parents would be mentally wrecked.  He just has other things on his mind, tries to avoid doing any work he perceives is too hard.  He also graduated from Occupational Therapy which he was in due to writing issues.  Anyway, they don't want to see him slip thru the cracks, so he'll continue to monitored, but he's now expected to complete school work in class and if he doesn't.... It gets sent home with him.  And if he does well, each week we're setting up some sort of reward program.  New app on the ipad, steak dinner.  We believe a lot of his issues stem from whatever happened back in July to turn him into a raving germaphobe.

December arrived and it was a balmy 58F.  Went to Christmas on the Prairie with Grandpa.  Ate cookies, listened to music, got to make a key chain with the blacksmith, go on carriage rides....

Semi Annual Doctor's appointment and flu shot.  Talked a good game and wasn't going to freak out, but when the time came, Mommy almost got a needle in the leg again.  Weight was disappointing for the doctor and with SP in the room with me, I couldn't really explain that he'd actually regained weight from his germaphobic freak out phase this summer. 

He's been eating steak, chocolate chip cookies... And the other night he finally tipped the scales at 61.8 pounds.  So he weighs more than he did back in June.  Just have to keep on it.  He ate 5 cookies 3 nights in a row.  I had to make cookies over my lunch hour.  Had a bit of a scare a couple days ago when he picked up a dreaded stomach bug; however, it was very short lived.  Phew!

Finally got the tree up and decorated this weekend.  Next up we've got a wedding to attend this weekend.  Next up is finishing holiday shopping.  Wrapping presents...  Enjoying the holidays and then a trip to the City for CF and ENT appointments.  Hopefully he'll have gained even MORE weight by then.

Thursday, October 25, 2012

Autumn has arrived

Here's an out take from the wedding photos last month.  I just find it hysterically funny with the bride struggling to hold onto her crying niece and Max the Ringbear running off in the background.

We have a new addition to our family.  Our automobile family.  Picked up a 1974 VW Microbus.  It runs, but needs new tires and a little engine work.  Interior is in great shape.  Anxious to road trip in it this summer.

We had our first school conference for the year.  Due to some of the behavioral issues in class we had a combination meeting with several staff members.  After brainstorming for nearly 2 hours we came to the conclusion that he's got some anxiety issues.  Could be due to realizing he's different because of his cf, could be partly because he has a heck of a time writing -- takes him FOREVER to write.  He's doing above average = excellent in all his classes.  Mostly A's and B's.  He's exclaimed a few times before even attempting to do homework that it's "too hard".  Believe he panics that it's going to take to long.  Think the staff had their eyes opened a bit to in terms of how much the poor kid spends on vest & nebulizer treatments at the expense of play time and being a normal child. 

On a good note Max no longer needs speech services, so that means he won't be taken out of class weekly.  He still needs OT for his writing.  While it'd be much easier to just put him in front of a computer and say "here, type it out", the kid is eventually going to have to learn to write.

Halloween is in less than a week.  He wants to be a mummy.  So I picked up gauze.  Should be interesting.  This weekend we're going to carve pumpkins and his grandparents house and order pumpkin shaped take-n-bake pizza for supper.

Max also gets his bible during church this Sunday.   Apparently his parents aka the heathens are supposed to go up in front of the church, put our hands on his shoulders and get blessed.  Not sure if this is some new age Lutheran thing or what.  But it's a surprise for Max and I'm sure he'll be thrilled.  We were supposed to highlight special passages for him.  Being the lapsed Presbyterian that I am, I only had a couple I could think of.  Then I emailed the right reverend (my dad) and he came up with a few as well.   I was tempted to use the line Samuel L. Jackson used in Pulp Fiction...  :)

Days are getting shorter and cooler.  Appointments for flu shots and follow up doctor's appointments have been scheduled for the coming months.  Local CF/Pediatrician, then CF Doctor and ENT in City.

Monday, October 8, 2012

Brewers Ball 2012

Friday night was the 2nd Annual Brewer's Ball for Cystic Fibrosis! 

Helped set up in the morning.  We had two, 99 bottles of beer to auction off.

I opted not to wear the blue blouse.  Not because my boobs were hanging out, but because it reminded me of the maternity tops I wore when pregnant with Max.
Friend of ours opted to wear a kilt.  My husband thinks he needs one now!

The two brothers. 


Save the date for next year!

Arrived home after 2 am to find our child was wide awake and demanding nachos.  So he had his snack while our friends son "rested" on the couch next to him.

We raised over $60,000 for research for the Cystic Fibrosis Foundation.  We laughed and cried.  Ate and drank way too much!  But it's for the kids!  :)

Wednesday, September 12, 2012

Fall Has Arrived..for now

After unseasonably dry, warm weather it's begun to cool off here.  The leaves are starting to turn and fall off the trees.  Days are getting shorter and soon I'll probably need to take a different route on my evening walks because the park seems a tad spooky once the sun begins to set.  Apparently by next weekend the temps will be back up in the mid to upper 80s.  Yea!  I love the change in seasons, but the cooler temps can just hold off a bit longer.

We had our annual family golf tournament.  Change of venue this year, so I had to buy some lefty clubs since they didn't have rentals.  Miniature golf is more my speed; however, we had a great time and the kids all got to ride back home in Cousin Jay's vintage fire truck. 

The last week or so we've been thrilled to have our happy little boy back.  He's not as concerned with germs and food.  We got an email from his teacher concerned with his not eating snacks.  We suspect he was concerned about the other child at his school with CF.  Apparently they ran into each other in the office and while Max knows to keep his distance, the other child didn't.  We explained 3' rule and short of coughing on or licking each other, they should be okay.  So he's been eating and drinking better.  Hopefully we can get his weight up before his well child and cf clinic appointments this Fall/Winter.

Last weekend he was a ring bearer in his cousin's wedding.  Or ring BEAR as he liked to refer to himself and growled at people before the wedding.  Being I was in charge of the camera, I don't believe there are any photos of me this time around.  And I actually wore a dress and heels again.

So life is good.  I've gotten of my pity pot.  There are others who have it much worse than us.  Need not to worry so much!

Just a few weeks until the 2nd Annual Brewer's Ball.  Should be awesome!