Susan's 504 Plan

Like many parents I know, I had a back-to-school list of things to accomplish with or for all of my children.  Susan's list looked something like this:

Susan:

-- Dr. Joe (tooth cleaning)

-- Dr. Robb (she's going to get braces...)

-- Backpack (to replace the much adored 4-year old one she had from Pottery Barn Teen)

-- School Supplies (to enhance the "kit" we ordered through school -- think fun erasers)

-- Shoes (her feet grew 2 sizes this summer!)

-- First-Day Outfit

-- Haircut (we'll get there, Amanda, I promise!)

-- Revise 504 Plan

While everything felt doable, the last thing on the list -- revisions to Susan's 504 Plan made me feel slightly queasy every time I thought about it.  Just thinking about Susan's 504 Plan (and the revisions we would need -- and want -- this year) kept me awake for hours over the course of the summer.  (For those unindoctrinated, a 504 Plan is a federally mandated plan that provides for accommodations for students who have an identified medical issue or disability that "substantially limits" major life activities.)

While "haircut" has not been checked off our list (here's hoping we'll fit it in soon, Amanda!), everything else -- including Revise 504 Plan -- is done.

Many parents of children living with food allergies face this task each year -- for some, revisions to the 504 Plan are made at the end of each school year, in anticipation of the upcoming year.  For others, this is a project that the school district tackles at the beginning of each year.  While our district has typically started the 504 Plan revision at the end of the school year, no one approached us to ask that we do that in May and given all that we had going on in the clinical trial, I was just as happy to let it go -- knowing that we would have to address it when school started in the fall, and feeling fairly certain that any revisions we made in the spring would simply be guesses for the fall.

While most of the back-to-school tasks were relatively simple, although some required a bit of planning -- calling the dentist, for example, to schedule an appointment, finding a time that worked, etc.  When I thought about Susan's 504 Plan -- and considered the identified accommodations in contrast to the accommodations I knew she would need, I was nearly overwhelmed.  I knew Susan's attendance would be spotty as she completed the open-label injection/build-up phase of the clinical trial, and I knew that she would miss school for the rapid desensitization in the middle of September.  I also knew she would miss school for weekly updose appointments...and that somewhere in her day we would have to find a time for her to take her peanut dose...

As the summer wore on, and I turned the plan and possible accommodations over in my head endlessly, I felt that everything was doable...except the daily peanut dosing.  The daily peanut dosing requires careful planning.  The dose is to be taken no more than 24+4 hours after the last dose and no less than 12 hours after the last dose.  Ideally, the dose is taken as close to 24 hours after the last dose.  With morning updosing appointments (necessary given Susan's history of delayed reactions), timing becomes a problem.

For example, when Susan has an 8:30 am updosing appointment, she typically takes the increased dose by about 9:00 am, maybe 9:30 am.  For obvious reasons, the clinical trial coordinator works to keep updosing appointments early in the week, so that their subjects do not go into a weekend with a relatively new (higher) dose.  So, if Susan has an updosing appointment on a Monday at 8:30 am, she really has to take her dose on Tuesday by 1:30 pm (earlier would be ideal, of course).  But, that's in the middle of the school day...

We struggled with the timing of the daily peanut dosing in the spring, too, but with the end of the school year in sight, simply cobbled a plan together day after day hoping to hold it together until school let out.  And as the start of school bore down on us, I honestly could not see a real solution for the timing of Susan's daily peanut dose...and that's what kept me up at night.

It was hard to put this in writing, because it seemed almost too good...too easy...to be true.  And yet...it is true.  We have a 504 Plan for Susan.  And, we accomplished it in one (relatively short) meeting.  [Arriving at a 504 Plan for Susan has never been this easy...never.  And last year it was...downright difficult.  While I don't know it for a fact, I have long since felt that -- despite our efforts to be rationale, reasonable people -- administrators and other staff in our district cringed in advance of having to deal with us (maybe even while dealing with us).]

I walked out of our meeting elated.  Relieved.  I felt both physically weak...and nearly giddy at the same time, as I let go of all the uncertainty-driven stress that had built up over the summer.  I texted several close friends and called another.  As I shared my news, and talked about feeling like we were a part of a team, my friends responded with "That's incredible" and "Awesome."  

When I shared our plan with a friend who has two children with special needs in our school district she was...less than enthusiastic, pointing out many potential problems.  When I shared the plan with several others, their reactions were similar -- some wondered why Susan would get "special" treatment, others wondered about the necessity of our plan, the wisdom of our plan, and on and on.  As I talked about our plan, I was struck repeatedly by the feeling that some of the parents were...envious...maybe even something more (could that really be possible?) of our plan.  (And even as I thought that, I wondered how anyone could feel that way, given the road Susan has traveled...)  

I stopped sharing our plan with others.

And then I found myself thinking -- if I am not talking about our plan with those in our life about what our plan is, how can I blog about it?

Simple.

My blog has become a place where I write openly and honestly about what is happening in and as a result of the clinical trial.

What started off as an e-mail to family and close friends has morphed into something more...something that I hope helps others...in a myriad of ways.

So...

With a deep breath...(and a hope for understanding)...here is our story:

A few days before school started, we had Susan's 504 Plan meeting with assorted professionals (read:  the Principal, the Assistant Principal, the Social Worker and the Associate Principal of Student Services) at Susan's school.  Susan, my husband and I all attended.  I was beyond nervous before the meeting. 

The backstory is simple.  We were the catalyst behind our school district's development of a (groundbreaking) food allergy policy when Susan was in Kindergarten.  While the policy was a huge improvement over the nonexistent policy, with it came tremendous controversy -- hate mail (it WAS that long ago), viral e-mail and irreparable rifts in friendships once held dear.  Even now, while I still feel the pain of friendships lost, I know I would do it all again...

Protected by an administrator who understood food allergies well, Susan's elementary school years were better than we could possibly have imagined.  However, the move to middle school left a lot to be desired.  Since I do not want to create any ill will, let it suffice for me to say that we retained an attorney who specializes in special student services after our 504 Plan meeting one year ago (just before Susan started sixth grade).  While we eventually arrived at a plan, it has never been something we have fully embraced.

Knowing that Susan needed far greater accommodations than she ever has in the past, I went into the meeting with a pit of fear in my stomach.  While I was willing to compromise, I honestly could not see where or how compromise would work.  The plan I had arrived at (and which I hoped the district would endorse) was the only workable solution I could think of.  (I was open to other ideas, but, having worried at the problem of the timing of Susan's peanut dose all summer long, I felt our options were pretty limited.) 

I dreaded having Susan at the meeting (some of our 504 Plan meetings have been rather heated), but I also felt strongly that it was important that the decision makers witness first-hand Susan's commitment to the clinical trial.  I have been her strongest, staunchest advocate over the years -- and while I have been unwavering in my commitment to ensure her safety -- I was not really prepared for her to witness the type of battle we have sometimes had.  Right or wrong, I worried that if there was not consensus, if I had to advocate for her, she would in some way interpret it that some of those in the room were not as concerned for her safety as we are (and while we have had our issues, I never thought that was the case -- sure, sometimes some of the people involved needed to be educated, to be more informed -- but I never felt that those involved did not genuinely care about her).  While she is a mature, wise 11 (nearly 12) year-old, I worried that she would not be able to process the subtleties of the meeting.

As Susan, my husband and I walked into her school, I found myself trying to find something encouraging to say.  Susan is perpetually positive and optimistic -- with a calm exterior.  She always sees the best in people and walks through life expecting things will go well.  In a quiet, understated way, Susan is a glass-half-full (or maybe-even-overflowing) kind of kid -- not in a bubbly, cheerleader way, but in a steadfastly calm and certain way.  She just knows it (whatever it may be) will work out.  I was deeply concerned that our meeting might shake Susan's world-view to the very core.

My concerns were compounded by the fact that I knew we would be meeting multiple new people (some new to the district, some new to us) -- a new Principal, a new Associate Principal of Student Services, (who had called me after-hours on her first day -- a good sign, I told myself, that she was taking this seriously...), and an Assistant Principal (who had been tremendously helpful over the phone, but still...who knew?).  While last year was tremendously difficult in many ways (we never did see eye-to-eye on Susan's 504 Plan, for example...), I felt that over the course of the year the teachers and administrators came to see Susan as a real person -- not just some kid with food allergies.  I knew we would be starting over, and I was afraid of the ground lost.

While the "playing field" has shifted as the result of significant staffing changes, as I prepared for our meeting, I could not shake the worry that clouded everything I did.  For, while I believe we are (at least generally speaking) rational people, it seems that (at least in this school district and in our community) as a result of our advocacy efforts, we are viewed as...?  (I'm never really sure... -- not rational...maybe not reasonable?  Maybe...even worse?) 

And yet, even now, nearly eight years since our initial advocacy efforts in the school district forever changed the landscape of our friendships -- altering our social lives, challenging our sense of belonging, shaking to the very core our beliefs -- I would do it all again.

Despite what some people believe, it has NEVER been just about keeping Susan safe.

When we pushed our school district to write a food allergy policy, our desire to keep Susan safe `was only part of the equation.  Our efforts have been for all students living with food allergies, for food (or dietary restricts) should not define anyone.  I have always believed that understanding is the key to management of food allergies (and understanding requires education).

Even now, Susan's participation in the clinical trial goes way beyond a potential treatment for HER airborne and contact allergy to peanuts.  While we all hope for an incredible outcome for her, if the Xolair is as effective as initial results suggest it to be, it could be a huge step in the treatment of food allergies for hundreds, thousands...maybe more.

So, as I walked into our 504 Plan meeting -- flanked by Susan and my husband -- I did so with tremendous trepidation.  While I am not sure I can articulate why, it was tremendously important to me that our 504 Plan be good not just for Susan, but, for others like her.

It is awfully difficult to advocate for something (anything) if those across the table from you think you are irrational, difficult, uneducated, biased, inflamed...or worse.  So, as I entered Susan's school, my stomach churned.  While in years past our 504 Plans had room for give and take (even if I did not like it), I felt there was little room for negotiation in the revisions we needed in Susan's 504 Plan for the year.

While management of Susan's peanut dosing is complicated in many ways (medication in the morning, medication just before the dose, food and water with the dose, restrictions on activity level, showering, and the mandated supervision), it is very easy in other ways.

I lay awake many summer nights (listening to Susan's deep, even sleep-breathing) wondering how in the world we would manage school with the most intense part of the clinical trial beginning just three weeks after the school year began.  While I had many concerns, I always circled back to the question of "When to dose?"

We had Susan's 504 Plan meeting at 7:30 in the morning.  When I realized that the timing of our meeting was unfortunately (or fortunately?) at exactly the time Susan had been taking her peanut dose, I paused for a minute.  After all, we fought for a peanut and tree nut restriction in our district...should I, would I allow her to walk into the school with peanut protein?  After significant internal debate, I decided it needed to be done.  And unlike the risk of sticky, oily, smeary peanut butter, Susan's dose was self-contained (and minuscule).  Eventually, I decided that since school was not in session and knowing that we would exercise tremendous care, we should just go with it.  Perhaps it would even be helpful for the administrators we were meeting with to see what it was like for Susan to take her 30 mg dose of peanut protein... 

We entered the meeting, Susan carrying her peanut dose, and a straw.  We started with introductions.  Susan was her typical quiet and shy self, although at this point we all know she has a voice just waiting to get out.  She opened her peanut dose with her -- blended with Dark Chocolate Tera's Whey powder and milk.  As we explained that she was taking her dose, she added that she would have to "slurp" when she was done to be sure she got it all.  We all laughed, and with that, I started to relax.

As we talked, it quickly became apparent that the people in the room were prepared.  They had read the e-mails I sent, and they had checked out my blog (which really has become the best way to get a sense of what the clinical trial has been like for Susan).  I was beyond impressed by their preparation, and I started to feel like...just maybe...it would be..."okay."  Whatever that meant.  I liked that the administrators in the room had clearly prepared for our meeting.  They had read the e-mails I sent providing an overview of Susan's food allergies, and they were prepared with questions and ideas.  They had even tweaked Susan's schedule a bit in advance of the meeting...

I felt myself relax.  If understanding is the key to management of food allergies, we were off to a good start.  While most of the people at the table did not know Susan, they had taken the time to learn about her.  I felt like we were going to work together to make a plan.  We were a team.

The answer to the question that kept me awake hours this summer?

(When to dose?)

At 7:30 am.

With this plan, Susan will be able to take her dose at approximately the same time every day (with a slight exception on the days that she goes to the Clinical Research Unit for updoses).

With this plan, Susan will be able to skate from 6:00 am - 7:30 am, and then take her peanut dose.

With this plan, Susan will miss her CAPE (read:  Art, then Music...and should the clinical trial go on that long, STEM and CME) classes and her PE class. 

With this plan, Susan will NOT miss any significant instructional time.  (Nothing against Art, Music or the other classes...and no harm to PE, which IS a key component of her Dual Language Immersion Program as it is conducted entirely in Spanish...)  She will NOT miss lunch (as painful as it was at times last year, I still believe it is a key part of the day in middle school -- at least from a social perspective), and we will NOT have to constantly, every day figure out how and when she will take her dose -- it will be neatly scheduled as early as is reasonable in her day...and this plan should keep it from completely taking over her day...

I have been told (by people I am sure are well-meaning) that there is simply no way Susan can miss PE, as it is a state requirement.  I have been told that "no parent in her right mind" would allow her to miss art (the art teacher at our school IS incredible)...

And yet, Susan has to take her peanut dose SOMETIME each day.  And the sometime has to be within 24 hours of the previous dose, plus a maximum of 4 hours.  And, we know that if we can maintain a 24-hour interval it is ideal.   So, while there are those I've encountered (far more than I would have expected) who DO NOT see this as such a good plan, those involved -- Susan, us, the administrators -- all see it as the best possible option.

In a matter of minutes, really, the biggest, most difficult part of the revisions required in Susan's 504 Plan were done.  Phew.

(We also scheduled a follow-up meeting for the week after Susan's rapid desensitization, as everyone in the room recognized that however good our plan might be, it might need some revisions then...


And as much as I wanted to be able to revisit some of the parts of the 504 Plan we never really loved last year, I knew we could not -- for we agreed when we began the clinical trial that we would not change the management of Susan's food allergies in any way.  As we were wrapping up our meeting, I kindly and ever-so-carefully let it be known that it is my hope (my plan, even if the clinical trial does not result in Susan needing fewer accommodations) that we can revisit certain components of her 504 Plan (read:  the lunchroom...)

Momsense

I have a sixth sense.

I don't mean this in a psychic sort of way...it is just something that kicks in for me as a mom.

A friend of mine calls it a "momsense."

Last year, when four of my just nine-year-old son's (permanent) teeth were shattered during a soccer game, I KNEW the minute he hit the ground that something was not right.  And the moment I heard his keening wail, it was confirmed.

I don't think I am unique in this "sense" I developed after my children were born.

I suspect most -- if not all -- parents reading this will know exactly what I am talking about.

So, when my cell phone rang shortly after 9:00 pm on Friday night (about 5 hours after we dropped Susan off at Lydia's house)...and even though we were in the middle of nowhere and I had such poor cell reception that my phone did not register the number (even though ALL of Lydia's family's numbers were pre-programmed into my phone), I just knew -- sensed -- that Lydia's mom would be on the other end. 

And of course, I was right.

As I was answering my phone, I calculated how much time had elapsed since Susan's peanut dose...more than 9 hours...

When I picked up my phone, in a jumble of words Lydia's mother rushed to explain that Susan was "fine," but...and in that moment I felt trapped -- too far away to be of any good...and I wondered why in the world I had ever agreed to (devised? supported?) such a plan...Susan had vomited (suddenly, as with all of her delayed reactions) while playing on the Slip-N-Slide.

I have no words for how I felt when I heard that.

I realized in a moment that it was about way more than whether or not I trusted this family, these other people who were not me, to care for Susan.  It was about the fact that I wanted it to be me. 

I didn't want Susan feeling unwell with someone else.

I didn't want someone having to deal with Susan's vomit (even thought I knew full well Lydia's mother was NOT vomit-adverse, like me...).

As her mom, I wanted to be there with her.

As Lydia's mom and I talked, it quickly became clear that she really did have everything under control.

Dr. R., who was the on-call physician from the clinical trial was on the other line (Lydia's mother had had it out with the phone company when mid-week their home phone line went out.  She wanted to ensure she had two functioning lines just in case something like this happened.  I must say -- I appreciated her diligence, but I thought it would be unnecessary). 

I talked to Susan while Lydia's mother talked to Dr. R.

Then I talked to Lydia's mother while Dr. R. talked to Susan.

As much as I felt as though I was intolerably far away (as I squirmed in the car), wishing for a different scenario, I also started to feel like things really were fine. 

Susan had an episode of vomiting.

It was over, done.

She was snuggled up in a blanket on a comfortable chair.

She was in good hands and even though she had not felt well, she was clearly still happy to be with Lydia's family.

I realized in a flash that this was exactly why making the plan for Susan to visit Lydia's family had been so important. 

At least for now, Susan was going to have periods of time where she did not feel well.

But she wanted to be a normal kid -- just like everyone else. 

We have spent much of Susan's lifetime working to shift boundaries and to negotiate accommodations that allow her to be more similar to her peers.  We have taken on the school district, our community, our friends and even our family to ensure that Susan can navigate life as safely and with as few restrictions as possible.  We have lost friends along our journey...and seen our community divided over peanut butter.

And I realized, as we drove North through the darkness, away from Susan, away from Lydia's house, that helpless as I felt, this was still exactly what Susan needed. 

My husband and I sat quietly in the dark as he drove.

Breaking the silence, I reminded him that there are more lessons from this clinical trial than we could possibly have imagined...

...and that while many years ago our advocacy for Susan narrowed our community, the clinical trial has -- surprisingly -- widened our circle.

Operating Instructions

How do you instruct someone in subtleties you are only just starting to understand yourself?

As we prepared to allow Susan to spend an afternoon, night and most of the following day (so there was no getting around the fact that she would have to take a peanut dose while away from us), I struggled with this question.  

I wondered if I was crazy to entrust my child to another?  
(Even a parent of a child with food allergies...who also happened to be a doctor.)

I reminded myself that Susan has always refused to be defined by her food allergies.
(I reminded myself that we DO NOT want her to be defined by her food allergies.)

I stared at my computer screen, trying to find the words that would ensure my daughter's safety.  All the while, a part of me wondered why I would take such a risk...while another part of me asserted that the risk was not so great, and that the only way we could see ourselves through the clinical trial was to try to find some sort of balance.

As I am sure any parent of any child (and most especially those with a child with special needs) can attest, there are certain things a parent knows that they...well, just know about their child.  A parent sees things in their own child that others -- even those looking carefully and listening attentively -- will miss.  That's just the nature of the relationship between a parent and a child.  And so I wrote, and I edited, and reviewed with my husband and finally...I decided I just had to...trust the universe.

Susan's "operating instructions" were entitled "Susan's Peanuts."


Peanut Dosing Instructions

1) In the morning, with breakfast, Susan should take:

            10 mg Zyrtec

            20 mg Famotidine

2) One hour before dose, Susan should take:

            20 mg Omeprazole     

3) Preparing Susan's peanut dose:

            -- Place the taller Bullet Blender Cup on the counter in advance

               (this will allow pre-measured peanut protein and chocolate whey to settle)

            -- Fill the cup with milk (leave about 1/4 inch at the top)

            -- Blend using the Bullet Blender base

                (Do not run for more than 60 seconds continuously -- mix well, please)

            -- The short Bullet Blender Cup is a back-up, just in case something goes wrong

4) The peanut dose:

            -- Susan should have a small snack just before she takes her peanut dose

            -- Please check Susan's skin (cheeks, chest, back) just before she takes her dose

            -- I packed ones that she likes in the bag with her peanut dose

            -- Susan drinks her peanut dose with a straw (in the bag)

            -- She will need to lick the blender blades in addition to drinking the dose

            -- Once she has finished the dose, please pour milk down the sides of the cup to                       ensure she gets as much of the dose as possible. She will drink that, too.

            -- No need to wash it -- just screw the top on and send it home with Susan!

5) The 2-hour observation period

            -- Calm, quiet activity (movie, reading, board game, craft)

            -- Check Susan's skin (cheeks, chest, back) every ten minutes (I use the snooze                          function on my phone)

            -- At each 10 minute mark, ask Susan how she feels -- be sure she really thinks about                 that question

            -- Please complete the dosing journal (in the bag)

6) In case of reaction

            -- Skin changes -- observe.

                We have not treated skin changes.  It is best to watch to see what is                                     happening.  Susan can tolerate some itchiness and they have historically                               resolved without intervention (eventually, even if not right away)

            -- Nausea -- provide support, coach relaxation, remind Susan that she has tolerated                   this  dose

            -- Vomiting

                Provide support.

                Call on-call doctor for clinical trial.

                It is likely that you will not do anything else.

            -- For any other symptoms, it is preferred that you contact the on-call doctor for                       the clinical trial first, as their goal is not to provide medical intervention (such                     as Benadryl) that might mask other symptoms. 

            -- In the case of rapidly progressing symptoms such as difficulty breathing or                             sensation that her throat is swelling, administer Susan's Epi-Pen and page the                       doctor on call for the clinical trial.  In the case of an emergency, get her the help                 she needs and then contact us.

We have found that Susan does best if she has a mid-morning and mid-afternoon snack.  She has a variety of options -- it doesn't have to be much, just something so that her stomach is not empty.


That was it.
1 1/2 pages.
So much information, and yet...so little.


At the bottom, I provided both my and my husband's cell phone numbers and witnessed permission for the Hertz family to seek medical care for Susan if need be.  As I signed in front of a witness, I felt slightly ill.  I so hoped there would be no need for anyone ever to look any more closely at that piece of paper than we had...

The Clinical Trial Coordinator and doctors knew about and supported the plan.  Everyone knew how to reach everyone.  

Wanting to believe, but worried about the unknown (both for Susan and for Lydia and her family), we dropped Susan off at Lydia's house on Friday afternoon...and headed toward Bemidji, Minnesota.

Letting Go (Ever So Slightly)

I always know when Susan does not want a play date, a visit or a party to come to an end, because she asks for a sleepover.  Sleepovers, in food-allergy-land, are a very difficult proposition, and while we have hosted many, she has only slept over at a very few places.

The Saturday night of the FARE conference, Susan and Lydia asked if Susan could sleep over in Lydia's hotel room.  I don't know if they had asked Lydia's mother, who might well have agreed, but I was pretty sure Susan needed a real rest.  And after the struggle she had to tolerate the 45 mg dose earlier that evening, I was not prepared to leave her with anyone.  So, I said "no" (as gently and kindly as I could)...because I could feel the power of the new connections...

And I made an honest promise to Susan and Lydia that we would find a time for Susan to sleep over with Lydia in the very near future...knowing in my heart of hearts that as honest as the promise was, it would be harder than I might like to keep that promise. (Honestly, at the time, I could not IMAGINE how I would keep the promise, knowing only that I would...somehow.)

The subject of a sleepover came up again as we were saying our goodbyes to Lydia, her parents and Cecilia after the second day of the FARE conference.  I started working on the idea of a sleepover on the way home from the FARE conference...turning various options over in my mind -- discarding, revisiting, reconsidering...until I finally realized that there were very few people I would let Susan spend the night with (especially at this point) AND that a sleepover somewhere else was EXACTLY what she needed. 

Once I had those two facts determined in my mind...and since I was clear that Lydia's family was on the short list of places I would allow Susan to go for a sleep over, I decided I needed to just pick a time.  Any time.  (I reminded myself that sometimes in life, it seems like there will be no good time...and in those circumstances, one needs to just pick a time.)  The way things have been going, there was no guarantee that any particular time I picked would necessarily be better than any other time I might pick. 

Once I had decided to decide, it was actually pretty easy -- I realized that if I allowed Susan to sleep over at Lydia's house the following Friday night, my husband and I could go together to pick our twins up from camp in Bemidji -- and as I thought about it, I was clear in my mind that while it would be especially good for Susan, it was also something that would be good for my younger daughter and son and for me and my husband.

After numerous text messages, several lengthy phone conversations and countless e-mails, we had a plan in place -- Susan would sleep over at Lydia's house the Friday night after the FARE conference.  We would drop her off in Oconomowoc, Wisconsin on our way to Bemidji, Minnesota on Friday afternoon and we would return to pick her up on our way home late Saturday.  We would have Susan's younger brother and sister in in tow.  It was a HUGE ask, and even now, after, I marvel at Lydia's family's willingness to take it on (and as much as I primarily communicated with Lydia's mother, it WAS a family commitment to help keep Susan safe).  

There were a few caveats as this plan unfolded.  I wanted to see how Susan tolerated her Xolair injections on Tuesday and I wanted to see how the home dosing went as the week progressed.  Susan got excited.  We made a trip to the Dollar Tree for glow necklaces and freezer pops.  (Hostess gifts safe for all!)   She started packing.  I was cautiously optimistic that it would all work out, but, I cautioned her against becoming TOO excited...


I wanted SO badly for her to be able to go...

The week passed.  She tolerated the 30 mg home doses of peanut without (significant) issue.  She continued to be more tired than usual and she had times where she was swollen or puffy in the face.  Things were not perfect, but, they were pretty good -- "maybe even stable," I found myself thinking.  I helped her pack.

I wrote a set of instructions for Lydia's mother and father that ran 1 and 1/2 pages.  I called it Susan's Peanuts.  In doing so, I realized just how much this clinical trial is pushing us to shift our paradigm for Susan's food allergy management, as reactions that would normally mandate administration of an Epi-pen are first watched, carefully assessing symptom progression.  More often than not -- far, far more often than not, we allow symptoms to play out in the hope that they will resolve without intervention.  I cannot count the number of times I have stood by, watching the hives grow and multiply, watching her become more flush, helplessly holding her hair back and rubbing her back while she vomits -- Benadryl and Epi-Pen at the ready...but, not to be used.  

And while I understand the thinking behind this new protocol (paradigm shift -- a concept I struggled to understand in my college sociology class and for which this term seems to fit better than any other real-life example I can think of), I am also always acutely aware that in the end, the final decision rests with me.  I am absolutely certain that if I were to administer the Epi-Pen when I felt it was necessary, the staff at the clinical trial would support me 100%, and for that I am grateful....and ever-aware of the ways this clinical trial has pushed us all.

As I proof-read my instructions, I was thankful for the time I spent talking through things with Lydia's mother...and knew with certainty that if Susan were a different kind of child, allowing her to go off with another family would be even more difficult than it already was.  For while Susan has historically downplayed her symptoms, I AM confident that she honestly reports what she is experiencing to the best of her ability.

That said...
How do you instruct someone in subtleties you are only just starting to understand yourself?

Some times, you just have to trust the universe...

I can't write the captions for the awesome photos, because I wasn't there, but they did convince me (beyond the shadow of a doubt -- and DESPITE what happened while Susan was there, that letting go -- ever so slightly -- was just what she needed).