For the Halloween Uninspired

I struggle with buying anything for Halloween as I know it will sit in my basement or attic for an entire year to be dusted off for a week at best.  At least with Christmas, you can stretch the season for a good month.  Alas, it is inarguably a very fun holiday and I fully appreciate those ambitious humans who come up with themes and string lights and rig up sound and smoke machines.  I do not do any of that and mostly worry about whether the pumpkins will be carved in time.  Maybe some day I will change my tune but in the meantime here are some of the more accessible ideas for those of us who just don’t want another box of stuff!

And, just an aside.  My children have rightly accused me of lumping fall and Halloween decorations together.  They strongly disagree with this approach and would take issue with my first example.  Still, I can easily see this with a couple of skeletons thrown about or ghosts hanging in the tree to carry on the white theme.

Country Living
Country Living
Country Living

Martha Stewart
Martha Stewart

I am off to the drug store to pick up whatever is leftover in the Halloween section and hope for the best and maybe I’ll get to some of the above next year . . . or not.

Another Day, Another Wall

Done with the first wall and now it’s onto the patio.  This one will have a flagstone cap for sitting and is just so pretty.  The patio wall was not part of the original plan but as you may recall we had some grading surprises once the jungle was cleared. I think we lucked out in that respect as it really does add that special something.  The crew will likely be done late this week and then the floor can go down.  I was on Restoration Hardware’s site the other day and decided a new patio in November has its advantages- 50% off outdoor furniture – whoo hoo!

See that electrical box over the door?  I am going to wait for a backordered fixture and hope it will be worth the wait.

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I love those stairs off the new porch door.  Still one of my very favorite changes.  Remember the before?

Here is the coveted and backordered light! The fixture is raw copper which means it will just get prettier as it ages.  And, maybe it will eventually match the copper gutters I keep trying to talk my husband into.

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There is going to be a run of fence right here coming off the side of the sunroom.  It will give us some privacy from the street.  Though I will miss how pretty the Little Limelights look against the stone.

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I am envisioning some aged terracotta pots on those porch steps.  This one would do nicely.

 

via www.deborahsilver.com

And my favorite – potted boxwood.  Apparently there is a homemade aging formula to remedy that very flat new terracotta look.

via acdwellings.com

 

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And, of course more new grass pictures.  I can’t get enough.  Instant backyard is so satisfying!  IMG_1151 IMG_1150 IMG_1149

Check back over the next few days as I am going to try to round up some Halloween ideas for those of us who do not enjoy decorating for the day or just aren’t all that good at it.  I probably fall into both camps much to the chagrin of my children who pine for blow-up pumpkins and colored lights year round.

Painting Millwork

If you own a house with special moldings and trim, you are so very lucky!  Those fortunate people want to set off this special feature which brings us to today’s burning decorating question . . .

Can you set off said trimwork by painting it the same color as the walls?

via Flickr – Benjamin Moore ‘China White’
via Phoebe Howard -Farrow and Ball ‘Clunch’

 

via Canadian House and Home
via Casa di Aria
via Hooked on Houses
via Laurel Bern Interiors – Burdge and Associates

via Houzz

I am firmly in the YES camp.

It’s October which means it’s Primary Ciliary Dyskinesia Awareness Month!

For seven years, I watched Mystery Diagnosis on the Discovery Channel hoping that one of the episodes would finally solve our own mystery diagnosis, one that unfolded just after our youngest was born.  We had a healthy newborn for a couple of weeks before he started coughing, wheezing and struggling to breathe. We now know he was never truly healthy.  We became experts in chest retractions and spent countless hours in hospitals and doctors offices trying to figure out why our newborn had a chronic cough, low blood oxygen levels, and trouble feeding.

Years went by and we received many diagnoses.  Cystic Fibrosis was ruled out while many other diagnoses were ruled in: atypical asthma, GERD, aspiration pneumonia, bronchiolitis, chronic middle ear effusion.  Doctors decided our baby probably had allergies and pre-asthma symptoms that would eventually work themselves out.  I was told countless times that it was viral and to come back in 2 weeks. Those were the times we would end up in the hospital. Some weeks were better than others and some years easier; we even had a couple of summers’ respite from many of the more worrisome symptoms. We would tentatively celebrate – finally he has outgrown the worst of it but then the symptoms would return and often with a vengeance.  And the cough, the wet, productive cough became such an issue that anyone who lived with or knew this child well knew he was not your standard fare allergy/asthma kid.  In fact, socially our son’s symptoms were becoming problematic.  He sounded like he had TB or worse and children, parents, teachers all wondered why this child was at school and if they would get what he had.  If I had kept him home because of the cough, our son would have missed 10 months of school.  All the while doctors treated the symptoms there was never progress on the why component.

I continued to search for answers.  I went to dozens and dozens of doctors, and even saw a group of doctors who handled the hospital’s most complex cases.  Nothing.  We tried the wholistic route thinking possibly it was Lyme Disease.  We do live in an endemic area afterall.  We tried occupational therapy and physical therapy both of which were hugely beneficial but for other reasons, neither touched our son’s medical issues. I am always thankful to our physical therapist who showed me how to do chest pt long before any doctor recommended it. She mentioned Henry sounded like her CF clients. We received a lot of antibiotics and referrals for more and more tests. Our pediatrician worried a lot.  She said she had never heard a child sound the way ours did.  He was a “juicy” kid and as she described – he sounded perpetually underwater. She affirmed our worries and over that time we saw more and more specialists. All the while, we tried changing diet and environment with little to no effect.  The cough was more pronounced in the winter months and we thought maybe that would unlock a clue, but ultimately that was not the key to diagnosis.

In fact, it wasn’t until we received the results of a sputum culture back one afternoon that I was able to start putting the pieces together.  The pediatrician mentioned that Cystic Fibrosis kids typically culture what Henry did and that was intriguing to me. Most nights for nearly 7 years, I got on the computer and researched Cystic-Fibrosis-like diseases.  I would put in our son’s symptoms and end up down a senseless rabbit hole.  Then one night I came upon a website that changed our path.  It was the Primary Ciliary Dyskinesia Foundation’s website.  I happened upon it after typing in non-CF H. Influenza and Staphylococcus aureus.  For the many years I was researching there was no such website.  In fact, I came upon the site shortly after its launch. It was the first time I had ever read a group of symptoms that fit my child perfectly and the disease had a name: Primary Ciliary Dyskinesia.

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Slides from the University of Michigan PCDF Care Day 10/18/15

Armed with this information, I still had to fight my way to a diagnosis.  I was told it was exceedingly rare, too rare for our child to have.  I was told that he didn’t have glue ear, so that diagnosis was out of the question.  Meanwhile he has chronic middle ear disease which is a hallmark.  I was told it couldn’t be Primary Ciliary Dyskinesia (PCD), in fact it was just a seasonal allergy issue. Never mind we had seen half a dozen allergists and been skin pricked and blood tested countless times by that point.  Our son did not test positive for any allergens at any of his visits.

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After learning about PCD, I discovered the Children’s Hospital of Philadelphia was one of very few hospitals in the country with a devoted center for treatment. And after undergoing nearly a year of appointments (they are very difficult to get!), which were to culminate in a bronchoscopy and ciliary biopsy, the lead ENT in charge of our diagnosis adventures canceled the surgery. He canceled it at our very last, pre-procedure appointment.  Canceled it.  He spent 10 minutes with us, looked up my son’s nose and declared this an allergy issue. Despite my protests that we had seen allergy countless time, he shook my hand, packed up and left the room. I sat in the exam room stunned.  The day we saw this ENT they had triple booked patients because of a recent snowstorm and we had waited 5 hours to see this doctor, missed school and now were going to miss a hugely important opportunity.  He told me I had not seen the right allergist(s) and when I asked who the right allergist was, he hesitated and told me maybe I could try a couple of doctors, both of which were 2 hours away.

Despite being madder than a hatter at this man, I did take his advice and saw an allergist yet one more time but at AI Dupont Children’s Hospital in Wilmington, Delaware.  I told the allergist my thoughts on PCD, how we were shut down at CHOP and what I had found online. He listened carefully, asked me dozens of questions and examined our child carefully.  He explained there was a simple, non-invasive screening test they could do right now.  It is called a Nasal Nitric Oxide test.

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The allergist came back in with our son soon thereafter and confirmed what I suspected all along.  Our son’s numbers were exceedingly low.  Too low for a rare strain of Cystic Fibrosis and too low for him to be just an allergy kid. In fact, only PCD patients test that low and combine that with a nearly textbook symptom history, our son very likely had this disease.  This allergist also explained there is no allergy that produces a chronic, productive cough like my child’s.  It does not happen.  He spent nearly an hour with us that afternoon and referred us to Dr. Aaron Chidekel who is the Head of the Cystic Fibrosis Clinic at AI.  PCD patients are seen and treated in the CF clinic.  He called Dr. Chidekel on our behalf and were are so grateful he did as Dr. Chidekel is the best kind of doctor with whom to work through this journey.  There are so many times there is no clear treatment path and you have to take a leap of faith that your child’s doctor is making the most informed decision they can.

Primary Ciliary Dyskinesia is a hereditary disease carried on the recessive gene so there is often no family history.  It is exceedingly rare and there is no cure but there is hope. I remember one doctor said to me if it is PCD, I have no idea what you are going to do about it.  I am hopeful that in 5 years this doctor will no longer be able to say to that to patients. The first clinical drug trial for a PCD-specific drug is a possibility in 2016 and more PCD Centers continue to pop up each year.  The Foundation’s goal is to have a PCD treatment/research center in each state.  The first treatment recommendations were released this past month and although we are still following Cystic Fibrosis care protocol, the Foundation is working hard with UNC to collect data on PCD patients that will hopefully improve awareness within the medical community, diagnosis and treatment guidelines.

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And just last week a 30-gene diagnostic panel was made available – this is enormous progress as just 15 months ago our doctor encouraged us to wait as they could only test for 12.  None of this changes the fact that our son faces health challenges on a near daily-basis but we are hopeful that in his lifetime there will be a cure or at least more efficient therapies and drugs to continue to improve his quality of life.