Punky Mama


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Egg Challenge Take Two

This week Aaron had his yearly allergy testing. I have learned over time to keep my expectations in check. For years his IgE test numbers climbed higher and higher as his skin testing welts grew bigger and bigger.  I remember when he was diagnosed around the time he turned one. The doctors told me he would outgrow his allergies by the time he was three.  Well, that was six long years ago so I have become a professional at managing expectations around his allergies. He has a great life and will tell you that he feels he is missing nothing.  I love his outlook on life.

This year during the skin testing for his allergens where they placed egg on his arm didn’t swell.  The milk spot was considerably smaller than last year. The peanut, beef, and pork were bigger than last year. The IgE blood test confirmed what I saw.  Aaron’s milk IgE numbers dropped considerably last year and have stayed the same this year, the fact they did not rise was a positive in my eyes. His peanut IgE numbers went up considerably after dropping last year and his beef and pork IgE numbers are the same as they have been.  I hear you all going numb wondering what the hell does this mean? This means Aaron is ready to have another egg challenge.

Today I am going to schedule Aaron for a baked egg challenge. As you all know the egg challenge two years ago failed very quickly and his reaction was very serious. His blood pressure dropped and he vomited quite a bit.  The allergist said to me that if he vomited one more time they were going to use the epi pen and take him to trauma, but he came around in the nick of time.  This was his reaction after he ingested 1/10th of an egg. I hope this baked egg challenge ends a little less dramatically.

Really if he never eats an egg he will be fine, but knowing a bit of egg won’t try to kill him is huge.  Hang on with me as we wait for this appointment!!


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Feast or Famine

Everything has come to a screeching halt.  The last few weeks included me running about like crazy for swim team and working on a big project for one of my clients. Suddenly all at the same time everything ended leaving me feeling a little unhinged. Now August stretches before us like a blank canvas. Well, not totally blank.  Ryan starts with his new behavioral therapist this week, his IEP meeting is this month, we have day trips planned to see friends who have moved to the country, we are homeschooling summer school a little each day, and I am considering a 24 hour visit to my Mom’s in NY.  Although that seems busy it is not busy enough for us and it requires thought at what to do instead of having to be somewhere everyday, we have to make something happen everyday. This is yet another transition for Ryan who has just transitioned to the last scheduled as it ended.

I am white knuckling it right now hoping things move along smoothly.

 


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A Girl Has To Rehearse

Mike with Aaron working hard with the reel to reel

Mike with Aaron working hard with the reel to reel

When Thorazine were rehearsing in the 90’s we lived together in a huge old Victorian house and we would rehearse in the basement.  We were driven, so we rehearsed three days a week for three hours. Yeah, we were crazy driven, I know.  Nowadays we rehearse three hours a week and we have to go to a rehearsal space. The rehearsal space we used when we first reunited was in a big old warehouse which was divided into rooms. It was dismal, dark, and cold.  Luckily Dallas’ girlfriend would bring a space heater with her. I would dress the kids in a million layers.  The only place for the kids and M, Dallas’ lady to sit was an old futon couch. The kids would get bored easily and argue.  Although there was a foozball table and a ping pong table down the hall, I could not let them use it alone. I could not send them to the bathroom without an escort. The manager of the place was not too fond of the kids and let us know.

When Hoover came on board, he looked into other rehearsal spaces after a few rehearsals in the dungeon like space. He found this ad on Craigslist. I saw the picture and I almost fainted. Wow, a nice rehearsal space for the same price we paid at the dungeon warehouse of doom! He called the owner and we made an appointment to rehearse and to try it out. The experiences could not be any different.

Dal drumming in the trees

Dal drumming in the trees

Mike the owner of Philadelphia Music Studios is one of the nicest people I have ever met. He loves to talk music, music gear, playing music, and anything to do with music.  It is his passion and it shows. He is trying to create more than a recording studio/ rehearsal space but a community. He is so attentive to us as we set up and is very available if we need help.  He wants us to have a good experience rehearsing. The space is lovely, so nice I walk around barefoot like I am at home. There is a big window overlooking Ridge Ave so we get a ton of natural light. He has a kitchen and is kind enough to let us stash bottled waters in the vegetable crisper so we have it on hand for rehearsals. He has wifi and lets the kids use his desk to set up their computers for Mindcraft which keeps them from fighting.  One afternoon I ran out after rehearsal to a birthday party with the kids. The rest of Thorazine and Mike just hung out in the back parking lot of the space talking for two hours. One week there was a person in the HR Block office downstairs on a conference call and he could hear the music.  Since we are Mike’s loudest band he used the opportunity to listen from the store below to see how he could better soundproof the space to make it comfortable for his neighbors. We were happy to just keep playing as he listened from below.

Elliott and Hoover playing. I get to take pictures during leads.

Elliott and Hoover playing. I get to take pictures during leads.

He is great with the kids. One day Aaron arrived at the rehearsal from a play date with his scooter, being the space is in my neighborhood Aaron’s friends parents easily could drop him off. Mike says to him, you can ride your scooter in the hallway if you want.  Most of the rehearsal I would catch Aaron out of the corner of my eye streaking by on his scooter. Our last rehearsal Mike brought his dog with him. The kids adored her and she loved them.  The boys had her running around playing in the hallway for most of the rehearsal.  They also were working on a project with Mike listening to old reel to reel tapes on the tape player his family gave him. Aaron helped him to organize them into useable, has some useable tape, and unusable. Aaron was so invested he wants to by reel to reel tapes on Ebay and learn how to record on them. Of course, Mike encouraged him. I felt like I owed him for more than rehearsal fee’s after the last visit to the space.

We have been only rehearsing at this place a number of weeks but it feels like home. I love supporting this business which is in my community, run by someone with such a great idea, who is kind, and has such a positive outlook.  I hope he is super successful because I know he will always have space for his regulars, Thorazine.


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Nightmares Awake and Asleep

I had a rough day’s sleep today. My body screamed to be awake and I forced my eyes shut. I had to work tonight, after working last night, and a day without sleep, everything would be harder. After I picked the boys up from the sitter I told them I needed to try and get some more sleep. Now that they are almost eleven and nine I can trust them to play computer games and not to answer the door or go outside on occasional summer Friday’s when I need more sleep. The worst they do is raid the fridge and possibly argue. I wake up quickly to intervene when needed. I only sleep when they are awake when I really need it.

I sorta finally fell asleep.  I kept dreaming of Ryan.  We were on a highway and he decided to get out of the car in the middle of traffic on an impulse. I pull over and screamed RYAN RYAN COME HERE YOU ARE IN DANGER, but as it is these days his auditory processing was slow and he was too slow to react. He does not even register I am screaming and absentmindedly wanders into traffic. His death was vivid and I woke up crying, with his face in mine and his eyes very much alive and excited, asking is it time for you to get up so I can see my friend L?  I sobbed to see him healthy, safe, and in one piece. He kissed me on the forehead and lay on the bed with me for a little while. It scares me that this dream is not far from the scope of reality lately.

I arrived at work late. The Israeli and Palestinians who live in Philadelphia were protesting each other and the US government. Great, the traffic made me over forty minutes late for work even though I left earlier than normal. I arrived at work to a full bar and I jumped into action. Quickly the rush ended and the bar became a ghost town which is typical for a summer Friday. Suddenly, my friend S appeared. I hardly recognized her. She declared, I had to find you. I adore S.  Her career is something I aspired to do as a kid. We have a ton of mutual admiration. I rarely see her but we are in touch virtually because I never get out and she has been sober and has not been in the bar to visit for about five years. I can see she is obviously drunk.  She orders a beer and I said as your friend I won’t serve you and you are too drunk to be served. She again says, I had to find you. I asked her what she needed. She said, to get back on the wagon. I told her to go to a AA meeting and together on my phone I found her three AA meetings in her favorite part of town and the next one was starting in an hour. I told her I was going to put her in a cab to the meeting. She drank some water and I gave her a bag of pretzels. She said she hadn’t eaten in four days. She then started sobbing I don’t want to die, I don’t want to die. She admitted she was doing more than drinking and in her haze she had a moment of clarity and started talking about detox. I got her out of the bar and we stood arm and arm on a busy downtown street. I hailed a cab and when I told the cab driver the name of the hospital she wanted to go to, he took off, tires screeching to get away from us. The next cab did the same thing. The third cab stopped.  I told him where she needed to go and handed him the twenty dollar bill that she tried to use to buy beer from me. I asked him to please make sure she got to the triage. He assured me he would and I went back to work visibly shaken. I sure hope she got where she was going and chose life over addiction. I may never know.

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