Stress, Stress and more stress

Summer is winding to an end and as usual I had good intentions.  One would think with the days being significantly longer in the upper northern plains and no homework to deal with I’d accomplish my goals. Keep up with the yard work – weeding the garden, get perennial plants established around the house and garage.  Care for the ones we have…  Then there are all the things I wanted to accomplish with Spittlefish.  Teach him to swim and ride his bike… 

Don’t get me wrong it’s been a wonderful summer.  Virtually no rain, meaning no mosquitoes.  I’ve been able to spend some time on our patio reading and visiting with friends over beers…  And I’ve been able to walk outside instead of being holed up in the basement on the treadmill.  Still haven’t lost any weight, but at least I’m taking a proactive stance on my health in terms of exercise.  And we’ve been able to spend most weekends at my in-laws lake home so Spittlefish can spend time with his grandparents and cousins.

Spittlefish goes to a daycare during the day while we work.  And one of the things I’ve absolutely LOVED about it, is how they keep the children active.  Walking, trips to playgrounds, swimming pools, sporting activities, field trips… They’re VERY busy!  So when he gets home, the last thing he wants to do is spend any time outside.   After his treatment and supper, he just wants to relax.  Plus two nights out of the week he had gymnastics.  So learning to ride his bike sans training wheels… nope!

Without going into a whole lot of detail, we’ve also had some stress in our household with some behavioral issues.  About mid-July, our son suddenly became obsessed with germs.  I can pretty much pinpoint when it happened and who told him he could get sick from germs, but that’s not going to fix the problems.  Our happy go lucky child suddenly became a worrier, whiney and secretive – evasive in order to avoid conflict.  We’ve tried reason, bribery, punishment…  And things have improved, though are not quite where they should be.  I posted some of this on some of the CF sites and pretty much got even more stressed out (FREAKED OUT) by well meaning individuals talking about OCD and aversion issues.   

While we’re gradually getting over the germ phobia and mostly it happens when he’s overly tired, it’s now lead to eating issues.  Used to be I wasn’t too concerned about whether or not he’d eat his school lunch because he’d get a snack at school (peanuts), at daycare and on the car ride home he’d down a fortified juice drink and eat another package of peanuts or some other snack item.  Then he’d snack during his vest treatment, have supper and usually down another snack before bed or drink juice throughout the evening.

Lately he’s not wanted his “snack for the road” on the way home for daycare, nor has he snacked during his vest…  Last night I opened up his backpack and found 3 packages of peanuts.  So for the past 3 days he hasn’t been eating his school snack.  I should at least be thrilled that he’s not smart enough to squirrel away the food or toss it.  Add to that confrontation, he’d told me on the car ride home that he only had 3 carrot sticks for lunch.  Apparently his French fries had black spots, some food touched some other food and the mustard tasted funny...  Had him step on the scale and he’s lost weight.

So big to do about eating.   I’m beyond frazzled.  Worried doesn’t really describe how I’m feeling these days.  We’ve tried to explain that he can get sick if he doesn’t eat, end up in the hospital with ivs.  That some children have feeding tubes – yep we’ve stooped to scared straight scare tactics.  That’s going to win me parent of the year. 

It’s not about me.  It’s about him.  I DID get him to drink more carnation instant breakfast than usual this morning.  We’ll see how things go.  I’m thinking a vacation far far away involving lots and lots of alcohol needs to be in my future.  Anyone wanna run away with me? 

Second Annual Brewers Ball for Cystic Fibrosis

The Fargo Brewer's Ball for Cystic Fibrosis is less than two months away!

Friday, October 5th from 7 to Midnight at the Fargo, North Dakota Hilton Garden Inn!

Time to purchase tickets, sign up for sponsorships, donate any spare bottles of wine or beer you may just happen to have laying around the house!  Silent Auction items...?

http://fargobrewersball.com/

Here's a photo of us last year during set up. 

Don't ask me WHY the heck I'm hiding my beer glass behind my back as if I'm back in high school participating in underage drinking. 

Cystic Fibrosis is a Progressive Disease

So I'm stating the obvious in the title of this post, but when one has an active, healthy child with no respiratory symptoms, it's easy to forget about CF.  Sure, he has to take enzymes, antibiotics, supplements, pills to make his liver happy...  But he doesn't cough, lungs sound healthy... 

Last week we took our semi-annual trip to the big City for a Lung Scan at the hospital and a follow-up appointment with the CF doctor.  Then plans for museums, shopping, eating out...  A mini-vacation so to speak.

Lung scan took about 30 minutes.  Max inhaled/nebbed a radioactive isotope and then pictures were taken of his lungs.  Primarily a disease of the small airways, this test gets a better view of what may be going on before symptoms occur.  Headed to the clinic and Max got really quiet, kinda teary... Similar to an incident a few weeks ago when a "well meaning" relative spoke to him ad nauseum about his CF.  Not sure if it was memories of his 3 week stay exactly 3 years ago due to an obstruction and subsequent surgery or just the realization that he's different.  Won't talk about it.

Anyway, got to the clinic, got him distracted enough to cheer him up.  Making jokes about the monkeys in the tree during the Pulmonary Function Test (PFT) seemed to work.  Then the verdict...  Films from the lung scan showing issues in the lower lobes with the larger airways.  Confusing because CF is primarily a disease of the small airways.  We do three, 30-minute vest treatments each day along with nebs to open the airways, thin mucus and  antibiotics.  Add to that  -- the fact that he's on three different oral antibiotics and one nebulized and what does his culture grow out.  Big old Steno. Maltophilia that's resistant to pretty much everything.  What more can we do?

While the doctor said "it's not evil" -- he's symptoms free!!! for gosh sakes ---continue on as we've been doing, it's a punch in the gut.  A reminder that this disease sucks.  That our child is sick.  And we so want to make it better and we can't.  And we can't discuss our fears, worries, concerns, anger.... while he's around because he doesn't need to worry. He just needs to stay a kid and have fun and have a friggen normal life.  I want to rage, I want to cry, I want to scream about the unfairness of it all.  But what would that accomplish other than upsetting others in our family.  Besides, it's pretty damn selfish to whine about one little lung scan when others have it so much worse -- hospitalizations, IV Antibiotics, lung transplant waiting lists...

So I've had my pity party.  Filing away this for future reference and focus on making sure our son is having a fabulous summer with no worries!  Oh, and after our appointments we hit an army surplus store, Legoland, Sonic and the Science Museum!

Summertime

Spittlefish turned 9 a couple weeks ago.  Can't believe how quickly time passes.  Sometimes I still can't believe I'm a parent.  Mentioned to Spittlefish on a walk a few weeks ago that I'm still not so sure I've got this motherhood thing figured out and admitted to him that I'm pretty much just "winging" it.  He told me I can just look it up on the computer.  Glad someone has confidence in my abilities.  'Cuz seriously, I really don't have a clue as to what I'm doing.

Tomorrow we head to the City for a lung scan and then a CF clinic appointment.  Got his bloodwork back from his pediatrician appointment last week -- looks like his vitamin levels, glucose, liver function, etc. is all normal.  Culture reports weren't finalized yet.  Despite the massive amounts of antibiotics he's on, always seems to be growing something.

Three years ago we spent 3 weeks in the City at the Children's Hospital because Spittlefish had surgery due to an obstruction.  Looked back at some photos on facebook of him.  What a baby face at age 6!  Wow, he was so little.  Amazed at what a tough cookie he is.

9 years old!



After our appointments tomorrow, we're headed to Legoland at the Mall and to the Science Museum.  Just a short jaunt and then we'll be heading to the lake for the weekend to visit the grandparents.

9th Annual Fargo Great Strides Walk for Cystic Fibrosis

Two weeks ago we had our annual Cystic Fibrosis Walk!  The weather for once was awesome.  Had a group of over 250 individuals.  Not sure how much Team Max raised; however, the walk itself raised over $90,000.  More than $15,000 than last year.

 In honor of Cinco de Mayo -- the hotel where we hold our Brewer's Ball catered our walk and provided "Tacos in a Bag".  Our fearless leader from the CFF dressed "appropriately" for the occasion.

 Max and his Auntie at the Walk

Me, Max and the tired puppies after the walk.

Next stop -- the 2nd Annual Brewer's Ball on October 5th!

Fargobrewersball.com

Sinus Disease and Cystic Fibrosis

From day one, our son has always had a stuffy nose.  Due to his CF causing extra thick, sticky mucus, I never so his nose run until he was 2 1/2 years old and was started on a nebulized medication called Pulmozyme, which is used to thin the mucus in his lungs. 

We'd been warned about the potential for polyps, sinus disease, but other than a stuffy sounding nose from time to time, there didn't appear to be any issues.  Then this past year, he became more of a mouth breather.  His pediatrician commented on nasal inflammation and stuffiness.  Asked if he snored.  Up until a few months ago, he hadn't snored.  Suddenly he snored, had episodes where he stopped breathing for a few seconds, was a very restless sleeper.  He began to have issues with reading out loud in school.  He'd have to stop and gasp for breath midsentence.

At his last CF clinic appointment, his doctor had him breathe through his nose and there was no airflow coming from his left nostril.  So he suggested that we send him to an ENT when we went came back to the City for his CF appointment. 

Being that his sinus issues became worse and thinking it was adenoids or polyps that may require surgery, we got a referral to an ENT last month.  Two specialists proceeded to stick a long thin camera up his sinus passage.  I swear the darned thing went up into his brain.  Bleah!  The ENTs were baffled -- no polyps, no adenoids.  Lots of inflammation near the FRONT of his nostril and what appeared to be cobblestoning along his septum.  So a CT scan was ordered and they prescribed a nasal steroid -- Nasonex.

Within minutes of using the nasal spray, he was able to breathe thru his nose for the first time in months.  He slept peacefully with no snoring.  The results of the CT scan weren't surprising.  Sinus Disease of the Maxillary, Bilateral and Right Ethmoid Sinuses; however, being that the nasal spray is apparently doing to trick, we're just going to monitor rather that have him undergo any unnecessary surgery at this point

2012 Great Strides Walk for Cystic Fibrosis

2012 Great Strides Video

Just a little video we put together for the May 5th Cystic Fibrosis Walk in Fargo.

Also, Save the Date!  October 5th is our 2nd Annual Brewer's Ball at the Hilton Garden Inn in Fargo!  Serving up a Cure One Pint at a Time!