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Let's Drink Pine Sap

If you drink the sap of a 1,000 year old pine tree you
will live as long as the sun and the moon.
  1. ~4th c. Daoism

Letter to Susannah

2/20/2018

1 Comment

 
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Hi,
 
Just wanted to let you know that Emlen has finally turned a corner. It has been such a fight. We had another appointment with his pulmonologist this morning. His PFT’s are back up to 111 – that is close to normal for him - and he gained two pounds last week.
 
I am:
Relieved.
Tired.
Headachy.
 
I always get headachy when the stress is over.
 
A Happy Meal tonight to celebrate. And I made a cheesecake. I wonder if Emlen will eat cheesecake…
 
xo
Elizabeth
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Letter to Susannah

2/14/2018

1 Comment

 
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Hi,
 
The drum kit’s throne in the hallway of the Carlisle Elementary School’s music wing is not comfortable. However, the other choice is the floor.  It is Tuesday and Henry has a saxophone lesson. I am surrounded by black instrument cases. Normally I really appreciate a solid black and beige color scheme, but this one is not doing it for me. It is a little chaotic and I am having trouble focusing. Earlier today I was in the high school’s cafeteria waiting for Emlen to finish his drum lesson. I had forgotten my phone, so all I could do was sit. And think. School was out. It was quiet. It was lovely.
 
I am on such a roller coaster this winter. Emlen gets better and then he gets sick, and then better and then sick again. If we can just make it to February break, maybe the schools will be disinfected. A couple of weeks ago Henry’s saxophone lesson was cancelled due to a school wide disinfection. So, I know this is a possibility.
 
As of now Emlen is on another three-week course of antibiotics. This is after a false start with the wrong antibiotic we got on a Sunday visit to the Urgent Care Clinic. Not wrong in that it did not work, but wrong because he needed a more specific one for whatever is in his lungs this time. Emlen’s pulmonologist changed it a few days later when we went to Children’s Hospital for follow up.
 
Henry is getting yelled at. Something about 16th notes. He was sick last week and did not practice very much. That reminds me that I need to hound his pediatrician for an extension of his antibiotics. Do you ever type a word so much that it stops making sense? That is happening to me with the word antibiotics. Henry’s first course was not enough. He still has sinus pain and is still a little run down.  There is nothing we can do about his narrow sinus passages until he has finished growing – which, I am not sure will ever happen. He seems to be a little taller every day.
 
Apparently when he did practice this week he practiced the wrong thing.
 
Now he is learning the fine art of trilling, on the up-beat, no less. I am not really sure what that means, however his teacher is drilling it over and over again. “1….2….3….4.”
 
Maybe it was not such a good idea to move all the musical instruments out to The Shed. I have come to call the boys’ building in our backyard “The Shed”, in the way that one might refer to Newport mansions as “Cottages”. Calling it the garage was too confusing, no one knew which garage I meant. We tried calling the building “The Chapel” for a while. It looks like one when it is empty. But now it is full of drums, guitars, saxophones, car parts, bikes, scooters, skate boards, electronics and various other projects. The Shed it is. That is what it replaced, a little ant eaten rickety old thing; so why not? Anyway, I can’t hear the boys practice when they are out there. Correction, I can hear the drums, even when I am on the other side of the house. Emlen is loud when he plays the drums. I can’t hear the saxophone. This would be a good time for me to stop micromanaging and just let Henry deal with his music on his own. OK. Done.
 
We have another follow-up appointment with Emlen’s pulmonologist on Tuesday.  Emlen’s lung function was up a bit last week and he gained some weight. All the work I am doing seems to be paying off. I hope the trend continues.
But the nagging cough…
 
Roller Coaster.
 
Oooooh – Henry’s teacher just said that she thought he had a good sense of music. He has potential.
 
Can’t wait to see you next weekend. It will be fun.
 
xo
Elizabeth
 
PS. We did not make it to February Break. Emlen threw up while I was editing.
1 Comment

    Author:
    Elizabeth Weld Hall

    In between laundry (she hates), cooking (she likes), gardening (she loves), designing interiors (she is thinking of retiring) and driving her children back and forth to the pool, Elizabeth manages her son Emlen's cystic fibrosis needs, trying to give him a full and fun life with as much normalcy as possible.  And she has started writing. 

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