Monday, November 24, 2014


MONDAY, NOVEMBER 24TH 
I would like to take an opportunity to introduce the most dynamic and brave little person I have ever met – my daughter, Pressley. 

Before she got sick, she was vibrant, outgoing, and incredibly advanced beyond her tender age of two.  And even sick…she still is.
She was alive and alert from the moment she arrived; Her eyes bright and her smile infectious.  She walked at 10 months and was using sentences by age one.  She is like every other toddler – gregarious, bossy, gentle, and precious.  However, she is also unlike any other.  She is special and not just because I am her mother.  If you could meet her, you would understand why.  She grabs the hearts of those she meets and she, as one of our nurses said, “has been here before.”  She is our life.
I am a recovering addict and my husband a recovering alcoholic.  We have often wondered what odds would have in store for her and how we could protect her from a disease that we were both very familiar with.  What we did not count on, as parents never do, is that we would end up having to protect our precious angel from a disease we had never even heard about. 
Although the medical world never wants to put a cause to the effect, I have my suspicions about how my perfect creature got this sick, seemingly, overnight and how our worlds changed forever.
At 6mo. pregnant with our second beautiful blessing, my husband lost his job.  The financial stress of living in the area we do, which is one of the highest per capita in the country, and the knowledge that we were down an income and without medical coverage was enough to drive anyone to the brink.  Or so we thought. 
Just two days before Pressley became noticeably ill, I had thought to myself ‘could you imagine if some tragedy were to strike in this interim of being without medical coverage?’
I had no idea that the message I sent into the universe would come to fruition and that worrying about finances and medical coverage would become the least of my worries.  Keeping my daughter alive became the only thing I could focus on. 
For ten days, we have seen almost nothing but the pale peach of the hospital floors and the sage green on the walls.

On Friday November 14th, I received a call from preschool that my daughter was not acting her usual self.  The few days before that, she had a runny nose and a mild cough-  mild cold that did not stop her from her usual, active self and did not keep her from school.  She had some trouble sleeping, which was not unusual for her but the Thursday before, I opted to sleep with her – cuddled up in her room and battling what I thought were nightmares. 
Friday morning, she was lethargic and we carried on.  Walking into preschool, my daughter said “mommy, my legs feel wobbly.”  I giggled. I thought she had picked up a new word and was trying it on.  I didn’t give her enough credit.  She was about to begin the rapid descent down the scariest road of our lives.
When her Godmother (who was closer to the school by the time I got the call) arrived, it was clear to her that something was terribly wrong.  She could not walk up the small, carpeted stairs, something she mastered long ago, and her head was down and to the left.  By the time we got to the pediatricians office, my perfect child looked like a stroke victim: she could not walk, talk, or hold her head up and she was paralytic in the face, drooling and slurring her words.  This was NOT my child.
We were rushed by ambulance to the hospital across the bridge in San Francisco and taken into the ER.  After some blood work, which looked normal, we were told that they suspected a virus had caused this and that she would get better.  The ER doctor said we should go home and wait it out.  My motherly instincts were in overdrive and I realized that this woman probably did not have kids of her own.  I asked.  She didn’t.  I said “show me a child who can walk and we will leave.”  I picked up my daughter and set her on her feet.  She took a step or two and collapsed.  Book us a room, we aren’t leaving.


We spent that night and the next morning met with a lot of shrugging shoulders and puzzled faces.  Speculation of seizures came up, virus’ came up, a lot of “I don’t know”s came up.  She was poked with needles endlessly looking for a vein;  Unsuccesfully and endlessly.  I watched my baby girl passing out from the pain of the repeated stabbings and I finally put my foot down. “STOP!! You’re hurting her!! STOP!!”
Saturday afternoon, she was put under general anesthesia for an MRI, which covered only her brain.  It showed no swelling, no damage, no nada.  An IV was successfully placed, thankfully.  Not so thankfully, the nurse in the MRI removed her IV before I could blink and I was met with an overwhelming feeling of defeat.  If she was going to need another IV, that would mean more trauma and more pain.  There is only so much she can take, I thought.
We met with a neurologist who said “it must be a virus, I can’t see anything outstanding on the MRI.”  Sunday we were sent home.  “There is nothing we can do here that you can’t do at home,” we were told.  My husband and I blinked at each other and prepared for the long drive home.
While I was glad to go home, I was worried and uncomfortable with the decision.  So, I carried my lifeless toddler, who screamed in pain the whole way, unable to lift her head or tolerate being touched, and put her in the car.

That night we tried to keep her as comfortable as possible.  She barely ate or drank and she cried tears of pain every time someone touched her.  My usually cuddly, affectionate, and loving daughter lay on the couch in virtual isolation – burying her attention in the television and unresponsive to anything except pain.  What was happening?!  Nothing got better.  Nothing changed.
Monday afternoon the pediatric office called to check on us.  I requested permission to please please please give her something for pain.  They had done nothing in the hospital for her pain and I certainly was not going to be the one to second guess their decisions but I could not bear it anymore.  My heart was breaking and I went into full mom mode.  Her pediatrician was off that day and our point of contact said she would double check to make sure it was alright and called us back with two pieces of information: 1. Give her Motrin!! 2. Do NOT wait until Wednesday for the follow up.  Our pediatrician wanted her in first thing Tuesday morning.
Again, I carried my screaming, lifeless toddler, barely able to make a sentence, to the car and as my husband drove, I watched her dose off.  I thought she was falling asleep.
We were seen right away.  And within minutes, my daughter was losing consciousness.  She was leaving us.  I was watching her die.  The oxygen tank came out and another ambulance was called.
This time we were rushed to the nearest hospital for stabilization and she was, once again, unsuccessfully stuck with needles for a blood draw and an IV.  She cried out again and again “you’re hurting me! STOP!! Please…!” She was begging.
The decision was made that she was stable enough to be transported and, another ambulance ride, we arrived back at the same hospital and admitted into the PICU – the pediatric intensive unit.  This was not a good sign.  They attempted more blood draws and another IV.  Unsuccessful and painful, again I could see the life leaving her face.  Profanities came flying out of my mouth.  Please – just stop hurting her.  I can’t bear it.  Please.
Tuesday after our arrival in the PICU, Pressley was set up in PICU for an EEG to determine if she was suffering from seizures.  A new neurologist and a swarm of doctors came in and out.  I was dizzy and I was scared.  The results – no seizures.

What the hell was happening to my daughter?!
When the EEG determined that we could rule out seizures, she was scheduled for a second MRI – one to include her neck and cervical spine.  It was also decided that her IV would be placed at this time and, in addition, she would receive a lumbar puncture to determine if there was any information we could gather from her spinal fluid.
Some results would return quickly and some wouldn’t return for days.
We waited on pins and needles for that door to the MRI room to open.  I had now laid her down in there twice, singing Hush Little Baby as the gas quickly sucked the consciousness from her and took her into a pain free place for more testing.

I needed to see her.  It was all I could do.  We stared at the door, waiting for it to open.

The MRI showed nothing wrong.  The lumbar puncture showed something.  Finally!! She had elevated protein levels in the spinal fluid and no sign of white blood cells.  There was no virus and no infection.  The protein levels showed markers that there was inflammation in the peripheral nervous system. 
We returned to our bleak, windowless room in the PICU.  We had the two signs that our doctors and neurologists needed to throw a dart at a diagnosis. 
Guillain Barré Syndrome. 

We spent that night trying to keep Press comfortable and by Wednesday, they were starting IVIG.  Intraveinous immunoglobulin. 
For two days, she would be flooded with antibodies to pair with her immune system and tag team the negative antibodies that were attacking the myelin coating around the nerves at the base of her brain stem.  This myelin coating deterioration was the reason that messages from her brain could not reach her body and the damage was causing the excrutiating pain throughout my darling daughter.  Every nerve in her beautiful little body was lit up.
After each treatment, we noticed significant improvement.  And as cultures came back, the doctors were able to narrow her GBS down to a variant called Fisher Miller.  My daughter was of the 5%, of the already rare, 1 in 100K who get GBS.
She truly is one in 2 million.

We watched the movement return in her arms and legs.  She was speaking.  Although she was ataxic (lack of voluntary coordination in muscle movements), she was alive and she was moving. 

Friday afternoon, we returned the 5th floor; The pediatric unit.  It was like I could see the light at the end of the tunnel.  I envisioned waking up to my walking toddler.  I guess I got a little carried away because no miracles had happened and they were not going to.
We were met with a nutritionist.  Pressley would need to consume 1000 calories a day, comprised mostly of fat and protein – both crucial in restoring the myelin to the nerves that were stripped and stripping me of my daughter.
She barely ate and she barely drank.  For just over 48 hours, we did everything we could think of to coax this little girl to eat.  We used to joke that she would eat us out of house and home – demanding “I want something from the fridge, mommy.”  I think of the times when I would giggle, looking at her perfect round body that looked like rubber bands had been placed around her major joints like sausages.
Saturday, her IV came out.  It became even more crucial than ever to keep her hydrated and fed.  We were unsuccessful.

On Saturday, the nurses came in around 10pm, ready to place a feeding tube in her nose.  ‘It takes 10 seconds’ we were told.  They started in one nostril –my daughter shreaking and screaming, tears rolling down her gaunt little face, and choking on the yellow rubber tube.  Sit her up, they said.  Sit her up??!! It hurts her!!  But I got behind my daughter and held her forward, hoping this would be quick and painless.  It was absolutely not.  Traumatized and in tears myself, we laid her back down and with horror in my face, the nurses got ready to go the other nostril.  The second tube did get further down than the first and then, to my sheer horror, she began to gag.  Whether it was her resistance or her anatomy, the second results were worse than the first.  She vomited a mixture of bile and blood and that was enough.  Enough was enough.  My husband, my daughter and I lay on her hospital bed, crying together in agony.  All of us just lay there, crying in defeat and my incredibly brave little girl said “mommy, are you ok?”  She has never been without compassion and concern, even in her own misery.  And then we lay there, wanting to go home – wanting to be normal again.
Sunday we were informed that, because of the issues with her IV and her feeding tube, she would, once again, be put under anesthesia and we would try again.  This time, she would get a PICC line – similar to an IV but leads to a larger vein near her heart to administer fluids and the next round of treatment, if necessary, and a feeding tube.
Once again, we were in an ambulance for a ride to a different campus to place the tubes necessary to keep her fed and hydrated.


As I sit here, staring at the tubes infiltrating my once highly active daughter, I am compelled to state how completely grateful we, as parents, and our extended families are that something has gone right.  The procedures were a success and she has hardly attempted to remove the feeding tube.  “OK mommy,” she said. “I won’t touch it.”
Thank you; All of you who helped in the procedure.  We needed a little reprieve and some good news.


The incredible fortune we have had with her new neurologist (the one we got when we returned, not the one who sent us home) has restored some faith in us.  And the care we received when we returned has helped alleviate some (not all) of the resentment I have for being sent home in the first place.  Gratitude for her pediatrician who went “bulldog” for us and has been keeping tabs on us and advocating for us cannot be described.

To everyone who has visited, sent gifts, called/texted, offered to help, started fundraising pages, etc. – there are no words.  We are being carried. 

Unfortunately, we will be here for another 10 days, roughly.  Gauging from her plateau of progress has doctors saying that it is likely we will need to do another round of IVIG – this time slow and steady.  Five days.  With some days after to observe and, hopefully, watch my daughter return to an upright position.
After it is decided that we can discharge from the hospital, it is more than likely that my fighter of a child will be admitted to an inpatient acute care facility for physical therapy.  Most like followed by outpatient and/or in home follow up physical therapy.  More will be revealed…

To say the least – we will do whatever we need to do to ensure the recovery of our daughter.  And – we will stay away from unnecessary vaccines.
While the medical community clearly hesitates to point at any cause and effect, and some may say “bad luck,” I am not so convinced.  Based on the timeline of events and what I have read, a simple vaccine has altered our lives forever.

And while I want to blame and be angry, I am grateful for the hope and the living, breathing baby girl lying in her hospital bed in front of me.
I will not, however, ever ever ever get used to Dora the Explorer.

WEDNESDAY, NOVEMBER 26TH 
It has now been a couple of days since I wrote the above.  Sitting on the plateau of progress that Pressley had made became defeating and discouraging.  How was she not sitting up yet? Why wasn't she walking, let alone still in pain with every attempt at movement or touch?  It had been days since her treatment and while there was progress, I was eager for more.  Who wouldn't be? I was becoming irritable, frustrated, and tired.  I still am.  But I am the kind of tired that keeps me determined to keep moving, keep keeping her occupied, comfortable and feeling as safe as she can in these most depressing of times.  I am so relieved by the knowledge that soldiers her age are, truly, in the moment and yet I can't help but worry that she must be feeling some amount of depression herself.

Yesterday the doctors came and told us that treatments would start again today.  Without much medical information, studies, or a lot to go on in terms of good timing for repeat treatments, our amazing neurologist determined that today we would try again.  Any backslide that could have happened over the last few days would result in plasmapheresis - a process where blood is removed, treated ("cleaned") and returned to circulate within the body.  This medical procedure, performed outside the body, sounded like the absolute last thing I needed to happen to my daughter and, yet, if it were necessary - I would have to again weigh options about the benefits and the dangers.  "Please, for the love of all that is good and right in this world, don't make us take that route"I silently begged the powers of the universe.  I cannot possibly comprehend putting her already fragile body through one more procedure and...have one more thing go even remotely wrong.

This morning the nutritionist came back.  It was not great.  Pressley was still not eating or drinking.  She was supplemented at night, yes, however her calories needed to be upped.  If she doesn't start eating on her own, the feeding tube will run during the day as well and she will get lazy - resulting in muscle loss of the mouth, throat, stomach, etc and it will be one more thing that I need to worry about.  The nutritionist shook her head but she did tell me not to give up; She would give it a couple more days.  As I watch the chub fall from Pressley, ribs begin to emerge, and her once thunderous thighs turn into scrawny little chicken legs - I once again beg - "please, please, please help my child with the desire to eat," begging the powers that be.
We have been holding onto particles of air, grasping tightly as if we could fall from the face of earth, for a break.  We just need something.
Visitors have come, cheered up my daughter, and provided as incredible sources of strength for our family...as well as distractions from the pain of all of this.  Those breaks are invaluable. Our close loved ones, even people I haven't seen in years, and parents from the preschool have come by.  The ones we consider family come and climb right into bed with her, tolerating Dora the Explorer, chatting, and some tickle her back, relieving my arms of the duty.



And today I awoke, afraid to get hopeful.  Again.  Eager to start round two of treatment, and exhausted from waking up every hour to my daughter's cries of pain and need to be rotated in her bed, I sucked down awful coffee and forced myself to eat. 10am rolled around and the treatment began.
I watched her drift into a Benadryl haze, unbothered by the every-15-minute beeps, telling the nurse to turn it up a notch.  I kept myself distracted with a visitor, the mother of Pressley's dear friend/sister - a little girl who I nannied for when I was pregnant with P.  I have known their family, become their friends, and now - am supported and loved by.  And so is Pressley.  She held Pressley's hand and stroked her hair as she slept.  I marvel at some people.  She and her husband are some of those people.
Then they arrived -- my best friend, who has been by my side since I met her, and her 10 year old.  This is not their first visit, mind you.  She has made the trip into the city more times than I can count, never shown up empty handed (although I wish she would - theres just no more room!), and has brought the whole fam-damnly to love and support us.  I have learned from her, grown with her, and taken turns falling apart with her.  She has been an integral piece of this process for me and for Pressley.  She watched as my daughter rapidly declined, cleaned the vomit from the carseat, cried with me, sat in PICU with me, and shared every ounce of pain and fear with me.  And she has been right there with me...watching my daughter want to draw again, getting marker all over the hospital's bedding, encouraging her to place stickers all over her body, and feeding her sweets relentlessly...some things will never change. There are no words.

 
Nana arrived and Pressley's face lit up.  We were already on the upswing with the previous visitors but as healing and as important as it was for P to see Nana, it was equally as important for Nana to see a happy, pain free, and chatty little Press.  I cannot begin to go into her story, as it's not mine to tell, but believe me when I say...this woman knows pain.  And I admire her for persevering and making the strides that she has.  I love watching Pressley love her and vice versa.  They are truly bonded and I know Caitlin is alive through Pressley - bringing Nana smiles, joy and peace.

I took a walk with my husband for the first time in days.  Fresh, crisp, San Francisco air and a trip to the bakery.  I missed my baby and we headed back to the hospital - hand in hand and hopeful.
When we arrived, our fabulously attentive and kind nurse had created a chariot for my daughter - a little red Radio Flyer wagon, complete with blankets as a cushion and a pillow to support my daughter's head.  She was not thrilled about the idea but I was.  Nana, my husband and I loaded the baby and headed down the hall and Pressley focused on the cream cheese frosting from her mini cupcake as we eagerly headed down the hall with her.  This would be the first non-medical trip we had taken from the room since we arrived.  Into the play room!! I had been dying to get my daughter in there and play with her! It was the first semblance of normalcy I had had since 12 days ago when I walked her into preschool.
P's head started to move, noticing the toys and hearing the Christmas (already?!) music.  She handed me the cupcake - it was no longer interesting.
Hopeful, I picked her up from under her arms, dying to feel my daughter wrap hers around me in return.  It did not happen.  Her body was limp and her head was heavy.  She cried out in pain.  I just wanted to hold her - I didn't want to hurt her.  She just hung there, crying out.  I was swarmed with pangs of intense guilt for selfishness and thought 'what if she never wants me to hold her again?' 'What if my arms and my love will cause her fear of pain or remind her of this awful trauma?'  It's amazing what the mind can do.  It's amazing the torture I am willing to cause myself and the way I can go to the worst.  In my heart, I know my daughter will always be loving and cuddly - and, as my husband pointed out, she may never let me go after this experience.  I sure as hell hope she doesn't.

In the playroom, I lay her down on large blue blocks made of sturdy foam and we put the pillow under her head.  My husband and his mom stacked smaller versions in front of my daughter and as she knocked them down, she came alive.  She laughed out loud, she shrieked with joy and not from pain, and she did the "happy wiggle."  The happy wiggle is a version of the happy dance, done by my daughter as she has had moments of reprieve from her misery while on this medical roller coaster.  And then it happened...she lifted her head from the pillow, about an inch or so, and tilted her head to look in the direction behind her.  She had done a version of this after the last round of treatment and, although that movement had been lost in the days after and the sadness that caused me, I could not help but to cheer her on and...my hope increased.  She did it again.  I ran to the hall and had the nurse call the doctor on duty.  He came.  He saw.  He nodded. He agreed it was great.  But my husband, Nana, and I continued to be the ones to yell and cheer and encourage her.  And she did it some more; Maybe 10 times and then she got tired.  My heart soared.
When the neurologist came to see us today, it was the end of the day.  We had just returned to our room and were still lifted from the 30 minute visit to the play room and from the movements my daughter made.  He held his chin and he stared at her. "I wish I could read your mind," I told him but it was not the first time I had said it.  Why wasn't he even semi geeking out like we were (but in a more refined and controlled doctor kind of way)??  He used the words "cautiously optimistic" and my heart fell a flight - not to the bottom but just down a story.  He had really hoped for more than this sooner than this.  While I had hoped for more a while ago too, I was really just overjoyed at having a that much needed break: a little laughter from Pressley's tiny-yet-mighty voice and a break from the feeling that I may never see my daughter again the way that I remember her.

As if that trip to the play room wasn't good enough...she ate.  She took 15 or 16 bites of my burrito and sipped the watermelon agua fresca that my husband (genius!) picked up for dinner.


A perfect way to end the day before Thanksgiving...even with 72 rounds of Dora the Explorer under my belt from today alone.

SATURDAY, NOVEMBER 29TH
So far, Pressley's best day was Wednesday.  I was thrilled to write about her progress and, against advice, I got excited.  I keep holding my breath for post treatment afternoons and evenings where my little soldier baby will sit up or start walking.
Thursday, Thanksgiving.  Could it be a holiday miracle I was waiting on? Probably.  But it didn't happen.  People came and went all morning, overlapping visits and making small talk with one another.  I was tired.  Too tired to "entertain" in our little hospital room and, honestly, I couldn't really focus on a single one of them.  I was anticipating her round of treatment and the results.  Her spirits were up and down, as I am now told is a side effect of the nerve pain medication, but I chalked it up to a sick toddler, cooped up in a hospital bed and tired of being poked and prodded.  It was probably both.
We had more visitors that day than was probably tolerable for Pressley, staff, and ourselves.  Yet, each one of them dearly loved by us.  Some really reached Press, making her smile, laugh, and return to her chatty little self.  One of our generous visitors, an angel in her fundraising campaign as well, brought tupperware full of all the Thanksgiving goodies my husband could dream up.  It saved Thanksgiving for him.  I, personally, prefer the company and the festivities over the food.  I am not impressed with cranberry jelly, stuffing, gravy, pecan or pumpkin anything...and my husband - impressed with them all.
The highlight of Pressley's Thanksgiving, a visit from my brother.  Sometimes I joke that I don't understand what she sees in him but, truly, she loves him an incredible amount.  And I know why - he is, at his most authentic, kind, sweet, gentle, and (dare I say) sensitive.  They have a very special and unique relationship.  I think she sees the qualities in him that can be buried deep at times and I see them shine when he's with her.  He walked in the room and her big beautiful eyes lit up.  That was Thanksgiving enough for me.  I cannot thank him enough for that visit.  And I can't wait for him to come back so I can see her smile like that again.

We made the trip down the hall in the little red wagon, hoping for some more major signs of improvement in the play room.  Hugging my brother at the elevator, I wonder if he really understood the severity of what had happened and was continuing to be a struggle for her.  I don't think he did.

My husband and I set Press up on the foam blocks and prayed for some more movement in her head.  We knocked down blocks, played with the farm animals, and my husband choked down some of the hospital's attempt at a Thanksgiving spread.  Again, we gave thanks to our lovely friend for the meal earlier that day.  Without it...Thanksgiving was another let down of a day in the walls that were closing in.  Defeated, I loaded her up and went back to our room.

Friday - more visitors.  This time my husband's uncle and aunt made the trip from Santa Rosa, bringing food and...themselves.  We had been trying to get together with them for weeks (maybe months?) but something always came up.  I was sad to see them under the circumstances but they were gracious and loving and it was nice to have their company.
As we visited, I waited for the jump in Pressley's improvement.  She was finishing her round of treatment as we talked about family, pasts, and how complicated it all can be. Though she was awake, she was not interested in visiting and Pressley lay in her bed watching...you know what.  The dreaded Dora.
While my husband's family was visiting, and P was finishing her treatment, the entire unit was moved down the 3rd floor - the floor where P lay in PICU for days and that I never wanted to see again. The unit hadn't really been used in years and, due to the noise of the construction on the roof, we moved.  Nurses were uncomfortable, we were uncomfortable and yet there we were - in the 3rd room of our 15 day stay so far.  It was awful.  The air blew loud like an airplane and the temperature would not regulate, despite the thermostat on the wall.  We were all miserable.
And...Pressley's progress was still at a plateau.  I was disappointed and frustrated.
One of the nurses came and told me that Press' neurologist was on the phone.  He explained to me that he was not discouraged by, what I considered, a lack of real progress, and that as long as she did not back slide, treatment would end on Sunday and we would be moved to an inpatient acute care facility for monitoring and intense physical therapy as early as next Wednesday.  I returned to my room with mixed feelings.  He said it was time to "move on" but I was terrified.  I had seen and felt too much to feel confident in leaving and, although we were going to another very highly respected hospital, I was terrified to be away from this place.

I sat in the chair at the foot of her bed.  I stared at her helplessly. The doctor on duty came and sat next to me.  She explained that she had spoken to the neurologist and, while he was not discouraged by the "plateau" (I will forever hate this word), that her recovery was probably going to be longer than we anticipated.  The general understanding between the neurologist and the staff that had been by our side through this hell was that Pressley's damage was probably more severe than anticipated.  The belief is that not only has the myelin coating around the nerves at the base of her brain stem been damaged but, also, the nerves themselves.  They likened the anatomy to a copper wire with insulation.  Her insulation had been eaten through, torn, and the wires were frayed and splitting.  The doctor who sat with me explained that this was probably why I was not seeing the progress I wanted. And...it could be six months before my daughter could walk.  There was no predicting anything at this point - the test to determine the extent of the damage would be painful and intolerable for her.  I figured I would have to prepare myself for a long haul...longer than I was ready for.  And I cried.  I could not imagine what life would look like...Pressley not walking and a newborn baby.  I felt sorry for myself.  For her.  For us.

We went to bed early and I was ready for the sleep.  But what happened instead rocked my foundation and, ultimately, took me to a place of near break down.

As usual, around 1:30am, Pressley whined in her sleep, crying out for me.  I sleepily crawled in her bed, rotated her limp body, and tickled her back.  She whined and moaned and I, sleepless and frustrated, got mad at her.  "Close your eyes, Pressley.  It is not time to be awake."  She began to sob her sleepy sob and I reached around her body, apologizing and wiping tears.  But what I found was not the purity of her salt water tears...it was blood.  Horrified, I woke my husband and he turned on the lights.  She was bleeding from the right side of her nose, the opposite of the one with the feeding tube.  Alarmed and half asleep, "get the nurse!" I said.  "Hurry!!"  And as I lifted her heavy head from the pillow, my frightened little girl began to vomit.  She vomited violently - a mixture of the liquid Nutrin from her feeding tube bag and blood.  A lot.  She cried and she vomited and she bled.  And I held her in my arms, the best I could without hurting her, and I tried to keep her upright.  Through the blood and tears and in between heaves, she cried "you're hurting me, mommy..."
Nurses and doctors and staff swarmed around us.  It was unlike anything I had ever seen.  Covered in the thickness and the horror of what her little body expelled, I shook.
We managed to get the bleeding to subside and I stripped down, trembling and in shock, I lifted her through cries of pain and took her in the shower.  Unable to maneuver in our new quarters, I rinsed what I could and returned her to bed.  We stayed awake, the three of us, unable to sleep and reeling from the events.  At 4am, semi confident that this was an isolated incident and that the bleeding had been managed, we turned off the lights and tried to sleep.

8:15am and Pressley was awake. Her nurse for the day and I determined that we would locate a large shower on the empty 5th floor and wash the blood and vomit that had dried in her hair, attempting to eradicate the scent of the horror show from earlier that morning.  As we discussed the plans for transport and how nice it would feel for her to be clean and fresh and ready for her round of treatment, calmly, the nurse informed me that Pressley was bleeding again.  I propped her up and tried endlessly to have her let me pinch her nose.  I was incredibly unsuccessful.  The blood poured from her face and she fought all attempts at tissues or intervention.  My husband returned from his trip to the coffee shop to find the baby and I soaked in blood - sticky and scared.  We went through kleenex after kleenex, towel after towel, and again - staff swarmed her bed.  She bled profusely and choked the blood and vomit from her throat.  What the fuck was happening? Was it the air control, or lack thereof, in the room or was it something more serious?  My mind went straight to the sister in law I had never met.  The discovery of her illness had come with the endless bloody noses and, although, they told me the vomit was from the blood she had swallowed, I could not shake the fear that the diagnosis could be dyer.  They drew blood.  More lab work. It would take an hour.  She vomited more blood, this time old and dark.
And because she was exhausted, loaded with Benadryl for her arriving treatment, she drifted to sleep, head propped up and to the side as her tiny little bunny nose did its best attempt at clotting.


Emotionally spent, taxed and maxed out, I lay on the bed opposite her...staring at the blood on her pillows, her sheets, in her hair, and smeared across her face and arms.
As the fear and defeat wrapped themselves around my broken heart, I sobbed.  I sobbed like a fountain without control.  The tears came from a place within me, so deep and buried, that every heartache and every fear, came with them.  I had never ever felt a pain in my heart so physical, so completely raw.  I wanted to wail, I wanted to scream, but I could not.  I could not get enough air to make a sound.  My husband sat on the bed next to me, rubbing my back and wiping the stream from my cheeks. I hid my face in my hands, wishing that I could just disappear into oblivion and trying to hide my heaving shoulders from the nurse monitoring my daughter.  I was tired.  So unbelievably tired.

We spent the rest of the day together, cancelled the visitors, and gave my daughter a sponge bath and I looked at her body, growing longer and thinner, there in that hospital bed.  I couldn't help but wonder how much taller she would look when she could walk again.

MONDAY, DECEMBER 1ST
The rest of that day seemed to go smoothly.  Pressley's Godmother, my best friend, came and stayed all day with us in this dreary hospital room.  When she arrived and saw Press, she gasped.  The blood had dried all around her nose and was almost black.  The bandages were caked in dried blood and P, none the wiser, cheerily greeted her Auntie and focused her attention back to Dora.  We sat around all day, distracting ourselves, getting take out and painting P's nails.  Again.  This woman: I have no words.

Yesterday, Sunday, morning was amazing.  We had two good chunks of sleep, four hours and about three hours.  I crawled into bed, "well rested," with my blond, blue eyed babe and we began to giggle.  We hid under her soft white blanket, literally - the only blanket she will tolerate.  We hid from the nurse as she came and went, giggling uncontrollably, and humored, I listened to my daughter attempt to say the word 'ridiculous.'  I was delighted with the start of our day.
I propped her up in the bed and then wham! She threw up.  She threw up all the formula that had been being pumped into her shrinking belly from the night's feeding tube feed.  Now, covered in wet formula - looking and smelling the way it did when it came out of the bottle, she lay there on that wet bed, crying.  She was able to tolerate me holding her upright so as to avoid choking but I could see that it scared her and I am not sure that that feeling ever goes away.
When she was finished, we gathered her up and took her to the shower.  Still afraid of being held and in anticipation of the pain, she cried as we let the warm water rinse away the previous days nightmares and soaped her up.  When we returned her to fresh bedding and her soft white blanket, I could see the relief and the fear slip away.  She was back in her safe place.  I ache for the day when her safe place will be in my arms again.
I got in the shower and closed my eyes.  I focused on the sound of the running water and tried to ignore the cries from behind the veil that poured over me.  Pressley's nurse, one whom we have grown to adore, and my husband cleaned the blood from around her nose and held her head still while they changed the tape securing her feeding tube to her nose and face.
When I emerged, I saw the most beautiful little creature...the one I remember from before this nightmare began.  I saw Pressley.  She was sitting up and she was smiling. For a moment, I forgot that my child was sick.



Last night's sleep was not great - broken up and inconsistent has become the usual.  At 4:30am my darling husband got into bed with Press and laid with her while she chatted and denied sleep.  After about an hour, she wanted me.  I got into bed with her and it was clear that our day was beginning.  My husband went on the early morning coffee run and I sucked back as much as I could - preparing for a long but, hopefully, productive Monday.  Pressley's nighttime tube feeds had been reduced in volume due to yesterday's episode and I expected to start our day off smoothly and keep it that way.
Around 7am, Pressley vomited.  Same thing as yesterday.  It was all formula.  I was no longer defeated or traumatized or freaked out.  I was too tired.  I watched as the formula erupted from her, her little body convulsing, tears rolling down her cheeks, and I started to mop up the bed and my daughter.
We spent the morning adjusting to the amount of people now filling the new unit - apparently there were some new kids on the block.
The pediatric doctor on duty came and introduced himself.  A new face.  A new doctor. Another round of her history and all that has happened.  Exhausted by the sound of my own voice and the same words, I told him as much as I could.  He informed me that he has called the new facility we were expected to transfer to and was waiting for confirmation from our 'insurance.'  It's complicated, I told him.  He then advised me that he was doing everything possible to keep us from getting a roommate.  You have got to be kidding me.

WEDNESDAY, DECEMBER 3RD
Yesterday happened to be a great day and I hope for more of the same today but, again, I have learned that the wind can be knocked from me at any time.  We started yesterday without any vomiting.  First great feat but it did come with a lot of anxiety.  With every moan, groan, and movement, I sprung to action in anticipation.
Nothing.  Success!
As we waited for nurses to complete their pass down and do rounds at 11am, Pressley's Godmother arrived - with beautiful blankets for my husband and I.  And bless her heart and her faith in my ever expanding size, she brought me a pair of darling leggings...a size small.  They don't fit now but they will...someday.  I love that woman's heart.

I worked on our transfer.  My husband and I scrambled to answer questions from the social worker, the discharge planner, the doctors, and various layers of insurance companies.  It's complicated.  I will reserve my commentary on the president's attempt at correcting or improving our medical care in this country but I will say this - "it's complicated.  So incredibly complicated."

When our beloved nurse checked back in, it was time to travel to the 5th floor, where we were relocated from due to construction, to give P a bath and, as a reward, head to the play room.  Our neurologist requested to be paged when we were going in to play so he could see her off the bed and in a new element.
I held Pressley in the shower as she shook and cried.  Was it pain, anticipation of pain, fear?  We may never know but what I do know is how terribly sad it is to watch her tremble under the warm water, cradled in my arms, and see her lower jaw chatter from anxiety.  This chatter of her chin and bottom half of her jaw has been a development in the hospital.  I know how hard it is to tackle anxiety as an adult and I cannot imagine how a toddler can make sense of it.  Yet, her recovery, when returned to the safety of her horizontal position in bed, is quick.  Her comfort zone is now a hospital bed.  And I am hopeful that it will be my arms again.  One day.

We moved from the shower to the play room.  Doctors and nurses came to see.  It wasn't much different than the bed.  She lay on her side, pushing blocks over and giggling at the destruction.  Pressley's Godmother got into the foam pit in front of P to build and rebuild the blocks while I made phone calls and emailed, trying to figure out how to get my daughter into the physical therapy that was necessary for her recovery.  Goddamn this system.  Goddamnit!  I was in tears, frustrated and discouraged but determined as all hell.

When Press' neurologist came to see the activity, Pressley was pushed beyond her comfort zone.  It was gut wrenching.  I watched from the table, listening to her cry, and seeing her jaw shake.  She was placed in the arms of my best friend, sitting up in her lap in that foam pit.  It went against every grain in my being but I knew that this type of discomfort would be crucial for her process.  My goal as a mother is to keep her safe, comfortable, happy and pushing her beyond physical comfort is like brushing cat fur the wrong way.

Questions of actual pain, anticipated pain, what could be attributed to nerve damage, what was simply a result of being in bed for so long came up.  All of it, I thought.  I was tired of hearing people say "I think..."  I honestly don't care what people "think" anymore.  Everyone has an opinion, a theory, a thought.  I want facts.  I want a plan.  I want to know why, how, when...facts.  I suppose that need will be unsatisfied until what is, is.
When we returned downstairs to our room, the thought came up that P might like a doggie visitor.  My best friend went to her car.  Their beautiful pup is a service dog and who doesn't need a little puppy love?!
While we waited for them to get back, the nurses came in and said that there was a family in the unit passing out gifts.  They come every year on December 2nd.  They lost their 4 year old son 10 years ago to the date and every year they deliver gifts to children in the hospital.  Incredible.  Speechless. The nurses wheeled in a wagon of gifts and told Pressley she could choose.  While they occupied P, I spoke to the mother of that little boy who passed away.  I was astonished and shocked at what she said to me. I'll never forget  it and it will always replay in my mind with the same amount of horror at the reality of what we had been through and were going through.
"I know that look," she said, staring right at me.  Right through me.  "Not every mother has that look and I have seen a lot of moms over the years.  It was close, wasn't it?  What happened?  It's not over yet."  I sobbed and I hugged her, not wanting to let go.  "I am so sorry for your loss," I wept.
She peeled me from her and she said "we are ok, honey.  It's been 10 years."  I could not imagine it ever being ok.  She was incredible.  She smiled and shared some of her story and I shared some of ours.
And she handed me a bag with a ribbon: chapstick, water, hand lotion, chocolates/mints, and I knew then that I was a part of a club that no mother wanted to be part of.  The club of moms who could anticipate the needs of another sleepless, dehydrated, terrified mother determined to stay by their child's side, no matter what the cost.

Franky arrived, the beautiful beast of gentle puppy energy.  The woman brought in her 6 year old daughter and they pet Franky and I marveled at that little girl.  She didn't witness her mother's pain 10 years ago but she was an active part of keeping her big brother alive and spreading love and healing to other children.  Pressley and our unborn daughter would be like that little girl.  I will teach them, show them.  Our lives have been forever changed.
And Pressley, Franky, and my best friend, Godmother to my incredible little girl, laughed.  It was the sound I remember...it was just happening in a different place.  I ached to go home.

My daddy arrived.  Again.  This was his second long trip down from where he and my mom lived way out in Oregon.  He had been with us in the ICU, sitting in that dreary glass box, tolerating every painful moment, not once wavering.  And he played with Pressley in there, giving me a glimpse of her old self as he played hide and seek on her bed with her.
I was delighted he could be present to see her improvement and the pink returning to her perfect little face.
"Grandpa!" she gasped.  The four of us now in a room with a window and a little girl in less pain and better spirits - alive and the light returning to her beautiful blue eyes.  It felt so good to have him there.  So comforting.  He shared how hard it must be for us as parents and for my in-laws as survivors of losing a child, to see this baby go through what she had and the possibility of losing her.  "I can't begin to imagine," he said, never once giving himself some of the credit for going through the same fears as the rest of us.  He is my best friend.  My hero.  And anyone who knows me, knows him, knows us, knows how lucky I am to have he and my mother as parents.
Pressley went to sleep easily last night and so did I.  Content in my heart and confident, yet cautious, that we would all be ok.

I am eager to see what today holds.  Our new insurance from my husband's new job kicks in and this may be the ticket we need to get into the new facility for physical therapy and begin our long journey of recovery.  It is a good sign that we are in position for transfer.  It means my daughter is no longer critical and that I will not be joining that club of mothers that nobody wants to think about.  My husband and I refuse to bury our child.  It is not her time.
And today, I have 10 years clean.  I am present and available for my daughter(s), my husband, my family.  I am present and available for myself.  I have not needed to escape this hell, although I have wanted to at many points.  But here we are - day 19 of hospitalization - as a family.  United.


FRIDAY, DECEMBER 5TH
I, clearly, am not good with change.  On Wednesday afternoon, we were transferred to the second hospital to begin physical therapy.  After hours of waiting on insurance approval, eager to go and yet nervous to leave our little nest and "family" of medical staff, we were given approval. There was a caravan...my father, his sister, and Pressley's beloved "Uncle Pimo." It was a scene: her being wheeled out on, yet another, gurney and into, yet another, ambulance.  Pressley and I holding hands the whole way down.  The family followed behind, a cart full of our belongings, being wheeled behind us...after almost 3 weeks, you would be surprised at how much 'stuff' accumulates (even after two trips home - both with 'stuff').  Pressley and I arrived first, with the assistance of the ambulance fellows.  The entrance to the ER was lined with gurneys and people moaning and groaning.  We walked the narrow halls, stale and with the smell of sterility.  A strange combination that I noticed immediately.  We approached the doors through which would begin our new journey and the one word that stuck out "Oncology."

This is where my husband and in-laws had spent years...YEARS...with my late sister in-law.  Although I believed we were here for different reasons, physical therapy, I couldn't shake the feeling of fear or grief for that beautiful young woman whom I had never met or for my family who had undergone an eternity of fear, sadness, and eventually grief.  I swallowed the lump in my throat and we passed into the corridor.  Nobody greeted us, nobody smiled, and nobody was in the room when we got there.  A third the size of the one we just left, with a crib that looked like a cage and a small couch with a table built into the middle of it, I panicked.
Pressley doesn't sleep in a crib and when she cries out for one of us, we do our best to snuggle into her bed and hold her little body or tickle her back.  I wondered about where I would sleep, I could sleep in the sink if I had to, but Pressley was my concern.  The ambulance driver left and returned, stating "it's hospital policy."  I wanted to bolt.  'Screw this...we are outta here', I thought.  Had she not been through enough?  Putting her in a cage, unaccessible, seemed like the straw...another straw...that would break her spirit.  Two nurses came in and, in my most valiant attempt at staying composed, I folded.  "I'm sorry," I sobbed.  "I'm scared and I'm sensitive and I don't know how to do ANY of this..."  The nurse rounded the cage of a crib and she held me.  Asking the baby's exact age, and me fudging her a little older than she was, they removed the crib and brought her a bed.
People came and went, but mostly went.  My entire family packed into the tiny room and my husband held me as I cried.  Soon after, family filed out and we were left there, the three of us.  Pressley cried, "I want to go back to the other hospital.  I want to go back to my room..."  How incredibly depressing this was.  My husband left - he needed to go back to work early the next morning and, as much as we needed him, we would have to be brave.
The resident doctor on duty that night came and introduced himself.  A child, he was, seriously.  Pressley requested a 'juice-baba' and she sucked it down, to my delight.  And then...she threw it up.  He stood there, staring at us, letting her sit in her liquid vomit and debating with me that my daughter had a 'swallowing problem.'
It took 10 minutes before any moves were made.  This was not what I was used to.  I do not like change.  When he finally made a move to exit, I had to request new linens, some extra for my bed, and some towels.  Apparently linens are not the doctor's forte, as he returned with a mish mosh of linens and one towel.  I cleaned the baby as best I could and I changed the bed myself...not an easy task for one person holding a screaming toddler, let alone a pregnant person.
I did my best attempt at getting comfortable.  There was no access to microwave, beverages, snacks (not that I was in the least bit hungry), linens.  Nothing.  There was no mini-fridge to store the incredible homemade risotto my darling brother made and brought for us.  There was nothing but a sink and, thankfully, an in-room bathroom (as I am told, they don't all have them), Pressley's bed, some medical equipment and a couch with a built in table that I would have to figure out how to transform into a bed.  Fight or flight.  Flight.  Fight.  Flight.  I stayed put when every fiber of being wanted to scoop Press in my arms and run.  I called my husband. "Bring the car back. I am putting her in the carseat and taking her to the hospital in Santa Clara."  "It doesn't work like that, babe," he said.  I cried.
Yesterday was a little better.  I woke up early and crawled into bed with Press.  We giggled and talked and hid from the nurses.  Around 6:45am, I propped her up a little and then...you guessed it: she vomited.  Through her tears and the volume of formula that reappeared, I called for the nurse.  What was happening?! Why can't my child hold anything?  She was no longer eating on her own and fluids filled the tube in her nose just to keep her hydrated.
When we cleaned her up I figured out how to order shitty coffee and a small breakfast, as I knew Pressley wasn't going to be joining me.  I got dressed and waited in that tiny room for the parade to begin.  And it did.  I cannot even venture to guess how many people came in during the course of the two hours.  And at 10am on the dot, her speech therapist arrived - to check her speech and her swallowing.  While she was there, the daily 'rounds' began - a process where the parent(s) join the clinical team for the day, which included residents, and discussed Pressley.  I was awkward and, as usual, used my abnormal sense of humor to lighten the mood and, hopefully, make an ally.  Blinking - a lot of blinking.
Occupational and physical therapy came soon after and my dad, by my side, watched the sessions and asked questions right along with me.  The therapist had one job, at first, and that was to make friends with Pressley.  Upon meeting the clinical pediatric director, she hated him immediately.  She screamed and cried him out of the room (and still does) immediately.  These women would have to do better.  And they did.  Pressley loved the OT - occupational therapist.  All of her sessions are based around some form of play - they don't poke, prod, or cause pain.  I was delighted.
We had a small break before the next round of sessions and my dad and I tried to get some logistical work done - making phone calls, researching, and organizing.  Have I mentioned that this man is nothing short of amazing?!
When the next round of therapy started, I thought 'oh, this is easy...she can handle this,' and then the last session, physical therapy, came.  The therapist brought the good old wagon chariot and, to my surprise, it was not lined with pillows and blankets as it had been at the other hospital.  At the precise time that I was instructed to place my fragile being in the wagon - sitting up! - a dear friend arrived.  I was glad to have the company and the support...and the distraction for Press.  I picked her up, jaw shaking and frightened, and placed her sitting up on the hard plastic in the 90 degree angled chair.  This was not going well.  Her head shook and bobbled, her shoulders scrunched up and she demanded to lay down.  After only a few minutes, I grabbed my baby.  If this woman was going to start P off with a bang, she was going to have to, at least, finesse me a little more.  Press was returned to her preferred position and taken to the 'gym' to begin working with the therapist.  It wasn't until we returned to the room that I finally got a glimpse of returning to normal...
I got to hold my daughter in my lap for the first time in three weeks.  Pure and total bliss - "like heaven rained down on me."

The therapists had gone and Pressley and I were left with our dear friend.  We played and distracted Pressley as best we could.  Although she didn't hold her head up, she lay on my chest.  It was clearly uncomfortable and scary for her at first.  And as we sat, she relaxed and there I was...holding my toddler in my lap against my unborn child, her head on my chest and content.  That was all I needed.
I could continue.

Today started like the last few...she vomited.  And, feeling somewhat immune to the panic, I just held  her and waited for it to pass.  I ordered breakfast and decided that a shower would be in order.  I wanted to start the day fresh(er) and get a real hold on this new routine and the day, in general.  I wanted to shower and be ready for the doctors when they came to do rounds and by 10am when physical therapy would begin.
It was broken.  The shower head was broken.  Starting to understand the pace at which things move, I brushed my teeth and got dressed.  My dad had arrived and the day was under way...doctors, nurses, cleaning staff, breakfast delivery, and then (yes, right then) the shower was being fixed - all at the same time...in our tiny room.  It was awkward and packed and, yet, I managed to follow the flow of traffic and answer questions from everyone at the same time.  Hard to say who trumps who staff wise but I just do my best to keep up.
My dad and I began to make some calls that would, eventually, lead to a resource we had been looking for.  Without getting into the details (because I realize everyone has an opinion), we were satisfied with the results and, in turn, both felt incredibly relieved.  We needed an advocate and my dad, as always, was right there.
Occupational therapy began.  Pressley loves her.  They play and the therapist is animated and fun, providing games and using strategies that my, now savvy to all hospital tactics, daughter cannot detect.  She is incredible at her job and in the 21 days we have been in hospital, she is the one who has produced the most results for my daughter.  She pushed her and never once made my little girl feel threatened or uncomfortable.  They have established a great amount of trust in a very short time and that is paramount for my child at this stage in her recovery.
What happened next had my father and I soaring for hours.  And through the whole process, we were in awe.  A team of neurologists (whom I don't know, nor have any idea why they come to our room other than to watch my daughter - never really talking directly to her or me...) walked in during the event and all four of them stood...eyebrows raised and just as delighted as we were.

As the other sessions were approaching, an adult neurologist came and began discussions about a pretty intense nerve test, an EMG - Electromyography, that had been discussed at the other hospital.  There was only one pediatric neurologist that our primary from the other hospital knew about to administer the test and he was here.  For that reason, and major physical therapy, we had transferred.  The test was comprised of two parts.  The first was to send electric 'shocks' through Pressley's frail little body to determine the speed and velocity at which the signal traveled to the brain and back.  This could help determine (and sometimes not determine from what I was told) the extent to which this "disease" had damaged her nerves and the myelin surrounding them.  The second part of the test was stick a needle into her and see if the nerve reacted normally, I believe, to determine any permanent damage.  I am still pretty unclear.  "Uncomfortable" was the word that was used.  I listened to the two neurologists and it seemed as though they were talking me out of a decision that my husband and I had made with our beloved primary neurologist last week.  I was so confused.  My father and I listened, trying to read between the lines of what they were telling us.  Why can't anyone just say what they're thinking?! So,  I did my best attempt at paraphrasing what I had heard in the language that I understood: "So, you're telling me that we may or may not get any information from this test and you are not convinced that it would be worth the "discomfort" and/or trauma to my already suffering child?"
My interpretation was correct.  However, I could not shake the feeling that we were a burden to these two doctors.  "Why were we told to take this test then?" I asked.  The pediatric neurologist shrugged his shoulders.
I had to make yet another decision.  I buried my face in my hands and cried.  I had nobody to call, nobody to consult with, and my dad was just as confused as I was but he said "you do what you think is right, baby.  Are you ok?" and I shook the confusion from my head and pulled it together.  I had to go with something and the time was now.  I trusted our primary neurologist and if there was ANY information that could help us understand what was happening to my my daughter, then I wanted to go through with it.
The machine was from the 1950's and nothing had been done in the way of advancement.  There were no guarantees, as I am in complete and full understanding of in the medical world now, and my child would be "uncomfortable."
We all decided that we would begin and if no information was coming up from the first portion of the test, that we would stop there.
We hooked her up.  They started with her legs, as those seemed to be the portion of her body with the least improvement, and she cried out. "Stop!! You're hurting me!! You're done...You're DONE!!"

I could see the fear and the confusion in her and my dad and I just held her and talked to her.  The doctors spoke quietly between themselves, pointing at the screen, repositioning the wand and sending currents through her.  They were finding something.  They did one leg and when they were done, said that they would not need to do any other parts of her body but that we would move onto the portion with the needle.  He likened it to acupuncture.  This was unlike any acupuncture I had seen in a long time.  I had once had acupuncture that was hooked up to some type of current and I remember hating it - "this is NOT relaxing," I thought.  I didn't get it at all.
When they placed the needle in her leg, she writhed in pain and we were told that it was good for the test for her to be moving and so we let go of our grip on her.  The computer made noise.  A lot of noise.  Apparently that was a good sign.  And then it was done.  They didn't need anymore information, they got enough.  Thank heaven.
What we found out was that the signal and velocity at which the messages traveled to her brain and back was delayed and did not travel with the usual amount of force (velocity).  There was definitely damage but he did not see anything that indicated permanent damage.  Of course, nothing was definite and there was no 100% in medicine but I would take it!!  He did explain, however, that the nerves repair at 1mm a day and based on the length of her length, it would take approximately 550 days for her nerves to fully repair.  That did not mean, however, that it would take 1 - 1.5 years before she could walk again.  It just meant that the nerves had a long road ahead of them...and so did my daughter.

A little later in the day my younger brother arrived, having driven over an hour in the pouring rain, and Pressley was tickled pink.  They played and she laughed.  And then she vomited.  Oh, for crying out loud!!
My dad and I gave her a sponge bath and we changed her bedding.  I brushed her matted hair and the four of us just hung out.
And then my phone rang from India.  It was my oldest brother.  He has been there for over a decade and, in his studies, has become acquainted with (in some fashion that I am not quite clear on) the Dalai Lama.  My brother wanted to submit a letter requesting prayers for Pressley on our behalf and he wanted to make sure that I agreed.  Ummmmmmm...YEA. I agree.
Just a few hours later, he emailed me to tell me that he was taking the letter directly to the Office of His Holiness himself.  And then it came...Pressley was being blessed and a red string, blessed by His Holiness, would be in the mail.  She would need to wear it all times.  No problem.
I may not be in contact with my brother very often but I have to say, I am touched by his thoughtfulness and willingness to ask for prayers for Pressley.  The request was specific: please relieve her pain and suffering, help her gain strength, and revive her appetite.  Yes, please.  All of the above. Thank you in advance, His Holiness.  And then this email from the Office of His Holiness, himself came...


The appointments for the day were done and my brother had to go, as he was playing a show in a few hours. We had some down time.  My in-laws arrived around 7pm, followed by the anticipated arrival of Pressley's daddy.  When everyone had arrived, my father said his hellos and goodbyes and would leave to go home in the morning.
There was more stuff being unpacked in our little room...Nana and Papa never come empty handed!  When my husband began to unpack the box he brought, the first item he unveiled was an incredible and generous blanket from two women in Southern California whom I had never met but only corresponded with one via social media and email.  She is a mom whom I admire for her strength and courage in her own battle with her son and his illness.  Again, theirs is not my story to tell but I will say that if you feel so inclined, look them up...the emblem on Pressley's beautiful new blanket, Head Regal, will lead you to the path of angels and a cause worthwhile of everyone's attention. And she looks so beautiful wrapped in their love, "Cozy Courage."  I am speechless.

In addition to the stuff from Nana and Papa and beautiful blanket, one of the parents from P's preschool sent an iPad with learning games, aiding her coordination and keeping Dora off the television.  Amen.  They really really REALLY cannot understand how grateful I am for that!

What happened next is a repeat of the incredible happenings from earlier.  I held it all day long for the sake of preserving some of my joy and, in a strange way, holding tight to something that I was afraid would disappear.  It was my own little secret, shared with my dad, and I wanted to keep it safe until Pressley's daddy and her Nana and Papa could see it first.  There are no pictures that could ever paint the picture and so, with an incredible amount of pride in my daughter, faith, and hope...I share:

SUNDAY, DECEMBER 7TH
I am struck, this morning, by how many days have gone by.  As we approach Christmas, I become more and more nostalgic, longing for the usual activities: picking out a tree, decorating, bundling up, Christmas music, coordinating schedules with family, etc.  In addition, my husband, with whom I feel more connected to than ever - despite the lack of alone time or normalcy, will be having a birthday soon.  Yet, here we are...separated by his need to work and my need to care for our daughter.  I believe that it is times like these that will break or make a marriage and, though we have had incredibly challenging times that I thought would break us, here we are...together.  

Yesterday started with an incredible amount of vomit.  It layered the baby and I.  And, sadly, I am now immune to the stench, the sticky, and the shock.  It has become part of our routine.  Something in me told me that it was time to remove the feeding tube.  What we were doing was not working.  Despite all the "reasons" and the various attempts at remedying, I felt it was time to end it.
I argued with myself all morning and when the doctors came in, I told them - Lose it.  I had to really try and remain open during our conversation.  They were still pushing overnight feeds and laxatives, hell bent that she was vomiting because she was not moving in the other direction.  We came up with an agreement.  We would reduce the overnight feed by two hours in the morning, based on whether she pooped during the day, and see how it goes. 
Well, she pooped.  And she ate.  She didn't eat much and it wasn't calorically high but she did it.  My motherly intuition was pulling me and it was strong.  I had silently made the decision that I would refuse her overnight feed (last night) and allow her body to catch up with itself.  How could she be hungry if she was being pumped full of awful formula all night long, vomiting it up every morning, causing reflux and all around discomfort?!  I wouldn't eat either.  My mind was made up.  So, I kept track of everything she ate and drank and had the nurse enter it into her chart.  By the time evening rolled around, I was more than satisfied with the day.
My daughter had sat up at the table in her various therapy sessions doing art projects and playing: she held her head up, she used her arms, she reached across the table, and she worked hard.  She made a mess and had fun.  It was wonderful to see and delightful to know that her creations were specifically intended for 'daddy.'

Evening rolled around and we were getting tired.  Instead of buzzing for the nurse, I waited.  I was about to refuse, against medical advice, her tube feed for the night.  Around 8pm, I put Pressley down and she slept soundly.  An hour later, the nurse came in, ready to hook her up to the bag of formula.  I explained to her that P had eaten, worked hard, and that I wanted to try something else.  She said she would call the doctor and let them know.
An hour later, I was woken up.  The concern was hydration, which I understood.  The agreement was made that we would do water through her feeding tube from 10pm - 2am on a fairly slow drip.
Around 2:30am, Pressley woke up whining the way she does when she is getting ready to vomit.  She stirred for over an hour, pressing the back of her hand to her mouth and crying a muffled cry.  I could tell she didn't feel good.  I prepared for a reappearing of water but nothing happened.  I requested a small dose of melatonin for her and she slept until past 8am this morning.  And she didn't throw up.  My gut is my god.  Mothers: we know our children.  I don't know medicine but I know Pressley.  And I am getting better and better at trusting myself and advocating for her.  I may be a pain in the ass but...it's working :)

FRIDAY, DECEMBER 12TH
Well, I can't believe it's the 12th of December.  Days in here become so blurred and as slow as it seems that time goes, I look back and can't believe how many days have passed.  Some are good and some are not so.
I was able to take a night and go home, on Monday, and have dinner with my darling girls - we ate sushi.  We laughed, we cried, we shared stories, and we ate sushi.  Need I say more?  It was an incredible break.  I was shocked and amazed at how frightening it was to be out in the world.  Finding my way to the car, people slamming into one another, unable to forge a smile or a kind gesture, moving way too quickly...It was surreal.
I felt as though I was walking around with a stamp on my forehead 'I am the mother of a sick child and I am fragile and have been through more than many people can imagine so, please, please, be gentle with me.'  Yet, nobody could see the stamp.  I suspected that they may, however, detect an energy of discomfort and probably perceive me as odd.  I wanted to send a disclaimer to everyone I came into contact with to explain away my complete lack of consciousness and my awkward interactions.  If anyone has experienced death or serious illness, then you may relate when I say that I had survivor's guilt, although my daughter was absolutely surviving.  I felt guilty for smiling.  I felt ashamed for wanting to enjoy a piece of my old life.  I felt like everyone was walking around, unaffected by the reality of what was going on...and they were.  So, when I say that I completely believe that kindness should be spread and a smile can go a long way, I mean it.  You never know someone else's suffering or struggles.  You cannot imagine how nice it would have been to walk down the sterile halls of this enormous hospital-city and have someone smile at me or ask if I needed help.  Yes, I would have said.  I haven't left the room in days and I am lost.  So very lost.

When I returned to the hospital, I connected with a woman who was referred to this amateur, strictly-for-my-own-therapy blog.  She and her daughter were, literally, steps down the hall from us.  It is amazing how interwebs and social media work.  Although I could not meet them right away, I was glad they would be around for one more day, before returning home, and that I could meet another family who was "one of the families you read about."  When we met, I was amazed at her profound faith in God and determination to see her daughter walk again.  They had been in the hospital for 11 weeks.  Her daughter, four years old, was unable to move her legs.  She was active and smiling and friendly and sweet - she was everything I could not have been.  Her mother and I remarked at how incredible this little girl was and how we would respond had we been the ones... These children are astounding.  How can we pity ourselves and our situations when they know nothing else but determination and stay so in the moment.  This mother and daughter were beautiful.  They were everything I wished I could be in these moments of fear and grief.  And while I know that beautiful mother cried "every other day," she was stunning and she was faithful.  Miracles are bigger than doctors.


Pressley has made incredible progress.  She had one episode of vomiting after a calorie rich dinner (dammit!) and that has been it since removing her from formula.
The night before last, after our family meeting with Pressley's treatment team and extensive conversation with an incredibly talented, kind, and knowledgeable, nutritionist, a doctor whom we hadn't worked with knocked on the door. She came in and approached my husband and I, with my in laws visiting, and tried the formula topic again.  I had been having a particularly emotional day and she made me angry.  And I was not nice.  We were not nice.  I have since had to make amends to her for displaying my attitude but I was still unwilling to budge on the formula topic.  I will not budge.
Pressley's calorie count has gone up dramatically after starting an appetite enhancer and I feel confident that the formula topic will be put to bed.  And, more importantly, I feel confidence and pride in being a voice for my daughter and listening to my motherly instincts.  She will get better.  She will gain weight.  She will recover.

So many things have happened in our favor.
First and foremost, Pressley has begun an incredible journey of recovery.  She is thriving and getting better every day.  She has a new "magic wheelchair" and we are able to take her to and from appointments on the hospital floor in it.  She eats her meals in it...She is eating!  She is doing an insane amount of work in physical therapy and it can't be easy but she is handling it.  Her pain seems to have lessened and her medications have been reduced, slowly but surely.  The light in her beautiful blue eyes has returned.

We were fortunate to have been granted retroactive coverage for some of the medical needs and my husband's new health insurance all came together to assist with some/most of these incredible amounts of bills and costs.  It has been a relief.  Now that I am able to spend my attention in other places, the places it has gone to have been those of stress and strain.  Any relief I can find in the details surrounding my daughter's illness are welcomed and treasured.  Although we still don't know the exact outcome of what is/is not covered, it is a relief to know that something is in place.  And we have received an incredible amount of support from friends, family and the community and that, in turn, has begun to restore my faith in the kindness of people - many of whom are strangers. So, to those of you who sent prayers, healing vibes, and other sources of assistance, hope, and treasures...we thank you.  This fight is not over and we have a long road ahead but there is a light at the end of the tunnel...finally.
Our family meeting went as well as can be expected but still in our favor.  Pressley was doing amazing and they could see it.  The prognosis was really really good.  While we were prepared that we would not be home for the holidays, or my husband's birthday, we were given an estimated time left here.  It was also explained to us that this projected length of time was a 'moving target,' it could be shorter but it could be longer.  3-5 more weeks was the marker given. One of the medical staff said something to the effect of 'we know how hard it may be to not be with family for Christmas..." and then I drowned her out with the sound of muffled tears.  "It's just another day," I choked.  But, truthfully, I didn't feel that way.  I longed for the smell of pine, the sound of annoying Christmas music, the gatherings and events.  I keep telling myself that all I need is a living, healthy daughter, in any condition, and that I have everything I need.  And while that is absolutely the 100% truth, there is another truth.  I long for normalcy.  I long for chaos.  I long to be home with family for Christmas.  I can justify it and explain it away and I am SO grateful to have my beautiful baby but I cannot deny my truths - and that is one of them.  Despite Pressley's increasing strength and health, I cannot help but to wish that things were the same before she got sick.  I wish she had never gotten sick and that we were at the Christmas tree farm, taking family pictures and deciding on a tree to decorate.
And also...that Dora the Explorer was not ever present in the 28 days and counting that we have been in the hospital.

I would like to touch on the physical therapy and occupational therapy topic.  It is bru-tal.  Effective, yes.  But dammit if it isn't so painful to watch.  While I look for progress in leaps and bounds daily, I was told today to look at the progress weekly.  Pressley's two main therapists assure me that even when it looks basic, she is doing things that help her process.  I, however, am eager to see the leaps and bounds.  Let me say, though, that these leaps and bounds are excruciating.  So...I want them but they break my heart and, often times, I wind up wanting to request slowing it down.
Hearing my daughter cry is never easy.  Telling the difference between manipulation and something being wrong is easy.  The tricky piece in this whole nightmare is knowing when she is crying out from fear or pain...or both.  Often times, she cannot tell me or the therapists.  She is engulfed in whatever sensation or feelings she is having and communicating is not an option.  These are the times when I want to unhook the straps, remove her from the mat, take her off the 'toy,' and just hold her until she can calm down.

I believe she gets confused about the difference between fear and pain.  I believe she knows the difference, too.  Its a fine line to walk.  She is pushed and pulled in ways that have to be crafted by her trusted therapists.  However, there are also times when I tell them to go for it...she is too damn smart to try and create opportunities through diversion and she has heard too many adult conversations about herself, the tactics, and every situation we have come across.  I know this because she will mention key things later in the day or refer to conversations that she has been privy to.  Regardless, to see her suffer is an unbearable experience for me.  She tends to recover quickly but I have to take deep breaths and remind myself of the benefits.  If I could wrap up every pain and every fear in her tiny little body, I would multiply it by a million fold and take it for myself...just to spare her.  But she is a warrior.  No doubt in my mind this child will accomplish everything she sets out to do.  I do know, on the other hand, that she may not go for things that seem scary or that she is unsure of.  She has been through so many challenges and it takes repetition, sometimes by way of telling the therapists to "go for it," to get her comfortable and willing.  Before this happened to her, she was fearless and she tried everything.  She has become weary and unsure.  I guess only time will tell but I want for her to be confident and try new things.  I want for her to live with abandon and be a fearless child again.  I want so many things for her but, mostly, I want her to be confident and trusting and to live freely.  There are so many types of child - all beautiful and all perfect...I guess that in whatever way this experience will shape her, she will be how she will be.  My goal as her mother is to hold her hand, let her go, and be prepared to wipe up the tears and clap for her victories, in whatever size and shape they come.


SATURDAY, DECEMBER 13TH
This is hard.  All of it.  It wasn't easy being a parent before this, don't get me wrong.  It is, seriously, the hardest job in the world.  I have a new appreciation for a lot of things since Pressley got sick - I always thought I knew gratitude and appreciation but now...I see things differently.
I got up before the baby, as usual, and did my morning routine.  A quick rinse, dressed, unmake the ridiculous camper-style sofa-turns-to-bed contraption that they have set up for me, pull up the blinds, and start making some noise until P wakes up.  I call down and order breakfast (every meal is a guessing game to see what she might eat but bacon tends to win) and two coffees for myself.  Then I wait for the nurse to come with meds and the doctors to come so we can begin the battle of what I will negotiate on and what I won't.  I hate the mornings here.  Then, after all that, it is time for rounds.  This is a time when doctors in their residency, interns, students, nurses, nutritionists all pile in the room and talk about Pressley in the third person and I feel on the spot and defensive.  Having gotten more comfortable in my role as the 'difficult parent,' these rounds aren't as unbearable but I still dread them...like a kid anticipating a spanking or a good talking-to.  Blech.
This morning, we were in therapy during rounds.  A-men.

However, after beginning my day with the daily routine, the unthinkable happened.  I had Pressley in her "magic chair," aka-hot wheels, and her feeding tube (NG tube) was tucked under the pillow that she was sitting on.  I piked her up from her seat at the breakfast table and WHAM! The feeding tube pulled completely out of her nose.  I was beside myself and so was Pressley.  I am sure that it was not a good feeling and also extremely scary for her.  My heart sank - I had visions of IV attempts and more talking-to's from doctors about hydration and calories.  Another step back.  I held her as she cried in my lap, refusing to eat or drink and for obvious reasons.

I would again have to make some decisions about what course of action would be taken and I needed to weigh out pros and cons and factor in more trauma for my daughter.  I really, truly, believed that, at this point, those decisions and those traumatic events were behind us.  I was guilt ridden and terrified.  And I was alone - my husband was at work.  It was just Pressley, the doctors, and I.  Thankfully, she was well hydrated from the overnight Pedialite routine and it would buy us some time.  The doctors that came in to discuss the events were gentle and not pushy...I think they had gotten to know me and my style a little bit better.
The course of action would be to see how well she did on her own but we did not want to wait too long for her to dehydrate and her veins to shrink if doing an IV was necessary.  I asked for the "best" IV nurse on the pediatric floor to be called and if Pressley hadn't taken in a sufficient amount of fluids by the end of the day...that would have to be the next step.
I have spent the majority of the day begging, making deals with, rationalizing, and pushing fluids on my daughter.  It has not been easy.  Everything today has been a trade.  "You can watch Peppa Pig (notice I did not offer up Dora...it is not that serious yet!) if you take some sips of apple juice."  I had the nurse on duty sit with her while I ran to get her a "pajama juice."  I have tried everything short of baby-birding liquids directly into her mouth.  The day's not over yet...

Physical and Occupational therapy today were awesome.
Need I say more?!

On another good note, the nutritionist on this weekend came and informed me that P's calorie count from yesterday was 1071!!  That's 200 up from the day before.  I have hope and I am optimistic and I am feeling really good about the choices my husband and I have made around her 'formula versus food.'
Now...to drink or not drink.

MONDAY, DECEMBER 15TH
Naturally, I am losing track of days.  I do know, however, that today is 31 days from the day Pressley went into the hospital.  I also know that I wrote yesterday (or the day before?) and, in true technology fashion, the blog entrance did not save.  So...am I missing a few days and/or they have all blended together? Yes, quite.
I believe it was Saturday...no, actually, I am sure it was Saturday morning.  I accidentally pulled out the NG tube from Pressley's nose - The source through which she received necessary hydration and, also, her medications.  I cannot begin to tell you the swell of fear, guilt, and anxiety that took over my whole body in an instant.  My first priority was to hold, and apologize to, my frightened little girl.  I am sure that it was not comfortable to have that thing ripped from her face but, also, quite scary.  As I have posted pictures of her or sent to friends and family, I keep getting greeted with things like "hooray, the tube is out!" and "look at her without that tube" and "you must be so excited!!"  Well, no.  I was not.  I was terrified.  The thought of replacing that, or installing more hardware into her veins, was absolutely not exciting.  But, I must say, it was lovely to see her beautiful little face unobstructed by medical intervention.  Sad and scared but incredibly beautiful.

Thankfully, we had bought some time since she had been hydrated over night.  There was no need to go into panic mode, as I was told.  We had a couple of options.  Perhaps the doctors were starting to get to know me better or, perhaps, there really were options.  We did not have to spring into action - we could see how far Pressley would get taking in fluids on her own and then assess later in the day.  This put the pressure on, much like that of the calories.  I was up for the challenge but getting as much liquids on her as they considered necessary for her weight was near impossible.  She did not even drink 40oz in a day at home.  Part of this puzzle was that we could have an IV nurse come and look at Pressley's veins to see if they were plump and accessible and, rather than wait for her to become dehydrated and make an IV harder, we could try while she was good and hydrated.  Another decision.  Bring the nurse, I told them.  Bring the best one you have.  I was absolutely not going to allow the horror of being repeatedly stuck, looking for an impossible vein.  It would not happen again. Not to my daughter.
Early in the afternoon, one of the women from Childlife, a service for children and families, came and was followed by the IV nurse.  I excused myself from our visitors and stepped with them into the hallway, out of earshot from P.  I described the unsuccessful IV attempts to them, explaining my side of why it would be intolerable if this did not work.  12-15 attempts at an IV in the prior hospital, fainting from the pain twice, and only having success while she was under anesthesia.  If I could paint the picture any better with words, I would have tried.  To see a two year old, covered in bruises on all four limbs, peppered with needle marks, is unthinkable.  I was not going to allow it.  "One chance," she told me.  This nurse was requesting one shot while Press' veins were still fat from the overnight fluids.  "And if it doesn't work, I will be back on Monday - she will be dehydrated by then, mind you, and we will opt for sedation in order to get an IV started."   Holy crap.  I, then, described to her the events of the NG tube attempt and how my daughter, essentially, laughed off the benzodiazapine sedative they had given her...and how, after the unsuccessful attempt at the NG tube, she proceeded to speak gibberish until 1am.  My kid was not going to make this easy on anyone.  "One shot," she said.  I agreed.  One shot.
And it was done.  One shot.  Thank you, heaven.  Thank you, nurse - whomever you are.  One shot.
What a relief.  Aside from having to administer her medications orally now, the threat of dehydration was off the table.  The focus was still calories and we were improving a great amount.
Pressley and I returned to our beautifully distracting visitors and while our darling 12year old neighbor read to P, her mother and I gossiped and laughed and talked about parenthood, kids, and the challenges in life we never thought we would face and, yet...here we were.  Parents.  Moms.  Who would have thought...

Yesterday we had more mother/daughter visitors.  Both whom have had their fair share of trials and tribulations.  Both with whom I have become very close and very fond of.  Both survivors.  Fighters.  And both of whom Pressley has become quite fond of, as well.  Grateful for more distraction, and relief, this 23 years old miracle lay on Pressley's bed, playing games with her endlessly, and never tired.  We took P outside on the 6th floor for fresh air and, using finger puppets for entertainment, we laughed.  All four of us.  Ridiculous and sweet and comfortable in all of our silliness.  These are friends you keep - ones who know you, see you in your entirety, and love you anyway.  And, although I feel a sense of responsibility to this young woman, to help guide her and hold her through her own process, she helps me...and she probably has no idea how much or how deeply she does that.  And so the miracles keep on working...

Last night, Pressley's daddy came.  He had been gone for four days in order to work and keep our lives moving at some semblance of a normal pace.  I am grateful to him for that and, yet, it is so hard to be separated for that long in this situation.  I craved the togetherness but, also, the relief.  Being the primary caregiver without a break is beyond exhausting.  Triplets can't prepare you for this type of exhaustion.  I was so glad to see him walk through the door and so was Pressley.  She lit up.  Her face, her voice, her eyes, and her spirits.  We had a surprise for her.  In order to keep her interested in food and her life semi normal, we were written "orders" by the doc to take her to the cafeteria on the second floor.  Mind you, these are one-time-only orders...to see how it goes.  While Pressley only ate tangerines, her spirits soared.  She and her daddy had become closer than ever...a true to life daddy's girl and having him there with her was, in fact, priceless.  This moment captured is, by far, one of my favorites.  For many reasons...

I cannot begin to tell you how hard it had been for my husband to, naturally, feel a part of the parental process when, at first, it all revolves around the mother and child.  From pregnancy, to birth, to breast feeding, and neediness in general, having her reach for him and prefer his help over mine has been an incredibly beautiful process to watch.  And...he is an amazing father.  Their bond brings me to tears.  "Daddy!" she squeals with delight when she sees him, her voice little and, yet, so powerful.  And when I call to check in and my husband says they can't talk because they're playing tea party and she is painting his nails baby blue (which he wears proudly to his construction job), I swoon.

I feel comfortable, at this point, after negative results have been granted my family, to publish an entry that I omitted previously.  There is a piece of my husband, as open and as raw as this all has been, that was important for us to withhold  based on the nature of the topic and the effect that it would have on our families - to spare them the misery of waiting on results,  the increased worry, and to spare them all the trauma that the "C" word has.
This entry was written and omitted from the end of the entry on Monday, December 1st.

*****Soon after, our beloved neurologist arrived and the two of them stood.  Staring.  I invited them to sure their thoughts.  What I heard next was the furthest thing form what I had expected and what I could handle.  On limited sleep, I tried to follow the information.  Because of the slow progress, there was another possibility - neuro blastoma.  A cancer that releases protein into the body but would not be detected in an MRI or any of the other tests and procedures she had been through because it was "on a cellular level."  Cancer.  And it could be anywhere in her tiny little body - poisoning her.  I couldn't even cry.  Run the test.  Draw the blood.  Catch the urine.  What the fuck are you waiting for?!!  Stop standing there and start finding answers!  My husband's parents and his little sister swam through my head and all I could do was crawl under the blankets.  I stared at my husband.  I called my dad.  I called my best friend.  And we, collectively, decided not to call anyone until we had answers.  Cancer is not a word to casually be mentioned.
The likelihood may be minimal and rare but someone said "cancer" and I went numb.  I don't care about numbers or likelihoods.  I care about what was keeping my daughter from her friends, the playground, our families, and from dancing.  She loves to dance.
A few hours passed and there was no word on the transfer or the new possibility on the table.  Cancer.  A second neurologist came and woke my sleeping baby (from a much needed nap) to do an exam.  Before she started, my husband and I told her the story.  A new face.  A new doctor.  Another round of history and all that has happened.  I showed her the video from the preschool the morning that my world crashed.  We answered questions and gave information.  I could not believe how detached I was - normally, I would be in tears. The well was dry.  I was tapped.
She listened and she examined.  She was reassuring - she believed the correct diagnosis had been given and cancer did not fit the description,a although some features were similar.
A urine test would be done, just to be sure.  Run everything.  My husband and I were ready to rule out more of the things that scared us the most.
Tests were ordered and my husband left to go home, collect mail, check in, and take a break.  Press had a popsicle and a few M&M's and then...she vomited.  Something inside me sank.  What was causing my already sick and suffering daughter to vomit??!  It was suspected that the increase in her medication was the culprit - 'vomiting as a side effect, especially in small children.'
So...the nighttime feeds of formula and the nerve pain medication would be reduced and we would go back to what was working when we started this regiment days ago.  Just to "test it out."
I would love a solid answer about something.  Anything.*****

So...it is with light in my eyes and hope in my heart that I say..."negative."  My daughter will be ok.  She will be better than ever.  She will recover.  There is no other option.  I will not have it any other way.  Not now.

FRIDAY, DECEMBER 19TH
It's a strange thing, fear.  Although I know we are no longer fighting for her life and are in the stages of recovery, I am still so affected by what has happened.  My dreams have become horrific.  As if having pregnancy-crazy dreams wasn't bad enough, I now have vivid and gory nightmares that wake me from sleep and have me trying to catch my breath.  The things I see don't really make sense in a direct application to my daughter but they are powerful and frightening.  Seems like I might need therapy.  More therapy.

My husband and I talked today about how Christmas keeps slipping our minds.  It's sad, really.  Living in this bubble has become so isolating that, even with the bustling going on around us, we have to be reminded about Christmas.  I thing, too, that it is easier for me to forget and put it out of my mind than to think about our families gathered around tables, eating and drinking and being "merry."  While I imagine we will have festivities here, there is nothing like being surrounded by family from out of town and family who live nearby.  It is also the realization that, even though she is so young, Pressley will not come out of her room early in morning, wearing some tacky fleece Christmas footed jambes and gasping at the transformation in our living room.  Even at the little age of one, last year, Christmas morning was magical and thrilling.  And it was just as such for her daddy and I as it was for her.  It will also be the last year that Pressley has Christmas as our only daughter.  Next year she will be 3, she will have a little sister, and...it will be just as magical and thrilling.  I am doing my best to stay off the proverbial pity-pot but man...it is really hard.
"How did we get here?"  I cannot shake this thought.  "How on earth did we get here?!"  I cannot shake it.  It is absolutely mind blowing.  And, again, I do my best to stay away from these thoughts as I know they don't aid our process as a family but I really can't believe the hell my daughter has endured.  And why her?!  Not that I wish anything like this on anyone, ever, but I really can't wrap myself around how...and why her.  It's just so much bigger than anything I could have imagined.

With all that said, my daughter is a hero.  She is a true champion.  Yesterday she was taken to the physical therapy pool and, though it was scary at times, her therapists managed to work her off the seat and into the water.  She splashed and 'played,' kicking her legs and making movements that we have not yet seen her make.  Incredible.  And as hard as it was to see her long and slender in her pink shiny mermaid suit, a skinny little version of the cherub I knew 35 days ago...this phrase runs through my head:
                                                 "Although she be but little, she is fierce."

Every day they manage to make her therapy into play.  Every day they become innovators of recovery and friends to her.  Every day they get us closer to the daughter that I remember.  Everyday I see a little bit more of that little girl.  And every day...I express my gratitude.
I am continually amazed at how gracefully and successfully they have been doing, and continue, to do their jobs.  They may be at work but, in our eyes, they are making miracles happen every day.
I have learned to let go of the hope that Press will bound out of bed and run out of this hospital.  I have learned to look at her progress in weekly increments.  When she got here two and a half weeks ago, she couldn't hold up her head.  Today she was in the contraption we have named the 'magic swing', suspended by her 'magic flying vest.'  She walked the halls with a complete entourage, being serenaded by the music therapist (who sang impromptu about every step and move she made), and stopping the staff and visitors in their tracks.  People came out of rooms, physicians rounds stopped, and people watched this little girl "step...and...step" along to the music.

SUNDAY, DECEMBER 21ST
Family is everything.  Having the reality of almost losing a child ever present in the back of my head and reeling in my psyche, I am struck by how much more appreciative I am.  I have always understood the importance of family, whether I honored it at different periods of my life or not was questionable.  My parents did a very good job instilling some values in me that I did not truly respect or integrate until later in my life...but the foundation was there.  Now, almost 40, having been through this process with my own little family unit, and sharing it with the rest of our families and extended families, I have let the little things go.  I cannot say that, as time goes forward, I will not lose some of this insight but I do know that my perspective on life has forever been altered.  Gratitude.

It's weird - people have approached me about the blog; About my (our) experience and shared their own stories.  People have made some comments about the writing, the graphic details, etc.  Not to say that any of this was negative feedback but, honestly, I cannot go back and re-read what I have written.  I cannot revisit the horror or the pain.  It is much like how we are moving through this...we are just going forward, barreling through every day the best we can.  To stop and process it all seems too hard.  There is no time to do any of that.  Each and every minute of each and every day is about getting through to the next.  I savor every victory and every movement towards the goal of bringing Pressley home.  If I were to stop and really, truly, go back and relive the last 37 day, what good would it do?  Am I ready to do that?  It feels like a nightmare and we are slowly waking from it.  The fear of a reoccurrence is already looming and daunting and keeping me from ever having a full, rested night's sleep.  I guess that is what happens...

MONDAY, DECEMBER 22ND
There must be a reason why the last few times I have attempted to sit down and write, Safari closes and my entry erases.  There's always a reason.  There must be a reason why the freeway is closed due to a boulder and my family is on the other side.  There must be a reason.
One thing I am learning in here is the definition of powerlessness.  This concept is not new to me but this experience, really, is the teacher of it.  I don't have a choice but to go with the flow.  I have spent years perfecting 'control.'  And the truth is, I never had control...not in any form.  I am forced, in these walls, to consider the input of others, to move like water, to take every day as it comes.  Don't get attached to the good or the bad, I tell myself.
Right now...things are good.  Pressley has been initiating standing, still with assistance but it has become a choice for her.  She is pleasing the nutritionist and the staff with her calories.  Her urine output is still not up to par but the doctor just told me he was "going to let go of anal retentive tendencies" around measuring her output.  Wait...what?!!  That's the closest I will get to what I want to hear.  I'll take it!  Her IV may be able to come out, based on the next couple days of fluid intake.  Things are happening.  Things that allow me to see us going home, although the timeline has not changed.  I am trying not to get ahead of myself.  Don't get attached to the ideas in my mind, either...

WEDNESDAY, DECEMBER 24RD
Today is Christmas eve.  It is also my wedding anniversary.  Funny how things seem to go unnoticed when your life is on hold.  In the scheme of things, these dates are days in our lives.  Granted, they are important and monumental days but I can't help but to feel like every day should be that important.  My husband and I are making Christmas magical for our daughter - that feels celebration enough for me.  She is spending her last Christmas as our only little person in the hospital and while she may not fully get what is happening (or as happened), we do.
Santa is coming.  He likes cookies and milk.  He will be bringing presents.  These are what little she understands about Christmas.
What we know is that the tradition is magical but it is not about the presents, or the gifts, or the over abundance of chocolate and cookies...it is about being with the people you love and cherish.  And if you can't be with them, it's about loving where you are in life and if you don't...why don't you?  Then there's the whole New Year concept...make the year what you want it to be.  What is important to you?  If you aren't living the life you love, why not?!
We have had family upon family visiting us this week.  Each one special and amazing and important. And, yes...my daughter is recovering from something that almost blew a hole through my chest but it didn't.  My heart is full and my family is together - even when some of them are far away, I know that we are together in spirit.
My parents left yesterday.  They were here for the weekend and I valued every minute we had together.  They drove back and forth to the city, they shuffled dogs, they shlepped palatable and delicious food for us, they ran themselves exhausted...and they are with us every minute of every day, even when they're so far away.  It was so great to have my mom here, just recovering from knee surgery.  People have asked me why she didn't come until now.  Well, for one - she just had surgery and was unable to sit in a car for that long trip down.  My mother sat at home, agonizing the condition of my daughter, as well as her own.  I could hear in her voice how distraught she was over the whole thing and I will never forget her saying, through tears, "I cannot imagine what you and Patrick are going through; my heart is breaking for you guys."  But when she said "I just wish I could come and hold you, my baby," I realized that I, too, am someone's little girl and I will always need my mommy.  her love has never wavered and neither has my dad's.  I am a blessed little girl and I hope to be the same blessing for ours.  I also believe in my heart that it would not have done my mother any good to have seen Pressley in the condition that she was in only weeks ago.  Being able to see her thriving and getting better was the best way for their visit to happen.  They decorated a mini tree and played with my mom's earnings and, quite frankly, it was the best way for her to see her granddaughter.  We knew she was loving us and praying to Grandma Dillon for us.  It worked.
My husband's family has welcomed me into their folds and they have shown up for us in incredible ways, as well.  We have had visitor after visitor these last few days and it has been such a testament to the strength of his relatives.  Aunts, uncles, cousins, second cousins, Nana and Papa, and Pressley's great grandfather...a large and lovely family who, in the craziness of all our lives, show up for my little family unit on a regular basis.
We are so incredibly grateful.
Aaaaaaaand...to add to the gifts...we get a pass from the hospital tomorrow!  We get to leave for a few hours and take Pressley to see my best friend and her family and then to my husband's family to have Christmas dinner.  While I am nervous, I could not be more thrilled.  Some semblance of normalcy.  A Christmas gift for the little miracle child in my life.

SUNDAY, DECEMBER 29TH
Let me first say that Christmas this year was the most profound of the 38 that I have experienced.  After we opened the bounty of gifts from Santa and marveled at the cookies and milk, and the note he left for P, my in-laws came.  We had the traditional breakfast casserole and opened more gifts.  And then...it was time to go...
I told Pressley about an hour before we were leaving what was going to happen and the unexpected happened.  She panicked and cried out "noooo!"  She had grown accustomed to the safety of the bubble we had been living in and I couldn't blame her.
As we started the walk to an 8hr pass of freedom, I got nervous.  I knew that everything would be fine but the nagging voice in my head would not leave me alone: what if something happened?!  Everything was "fine" before Pressley got sick and within a matter of hours she was near dead.  I know that I can chalk it up to the trauma and the PTSD caused by the whole ordeal but just because you 'know' something doesn't mean the feelings follow.  I swallowed the lump in my throat and the four of us walked out, pushing little P in her wheelchair.  I could see the wind hit her pretty little face and the reality struck me.  She had been on the courtyard on the 6th floor twice - she was about to see the world again.

I couldn't help but to turn around and watch her, check on her, stare at her, there in the back of the car.  My husband remarked at how long it had been since he had heard her tiny voice chirping from the back seat and how odd it felt.  All I could do was replay the day that my best friend and I had Pressley in that same car, same car seat, crying out in pain, a look of fear, her head hanging, with her 'wobbly legs,' and finally, covered in vomit as we arrived at the pediatricians 6 weeks ago.  I must have turned to look at her 100x before my hubby asked me to try and relax, reassuring me that she was ok.  I couldn't help myself.
After sitting in traffic, for what felt like forever, I looked back and saw the most marvelous thing I had seen in many many weeks. Pressley had her arm slung over the side of the carseat, holding Hello Kitty in the other, gazing out the window as we cruised over the Golden Gate Bridge towards home, and her head bobbed to the music, relaxed and content.  She put me at peace - right smack in the middle of the bridge.  She took it all in, sun shining in through the back window, illuminating the face that I remembered so well.  My beautiful sunshine bunny, seeing the world for the first (again) time.  It was going to be a great day.
We pulled up to the my best friend's house and were greeted by the bouncing blond curls of my 10 years old God-daughter, followed by her barefoot mom...and there we were.  Together again.  Like it used to be.  With Pressley in my arms and Ruby wrapping hers around us, we put our faces together and cry-laughed.  And Pressley was right there with us...giggling and intense.
Inside, more hugging and more gifts; Family strewn about the living room.  Some left, some stayed.  I planted myself on the floor with Pressley and, as the minutes ticked by, I realized exactly how hard going home was going to be.  My body ached.  My back sent searing pain down my legs and into my shoulders as I propped Pressley up so she could play at the toy kitchen with her best friend.  I noticed how incredibly hard the transitional movements were for her and how those movements had been supported at the hospital by staff and by her dad and I.  She couldn't bend down to pick up dropped toys, she couldn't get herself to sitting, standing, or even crawl position.  She had to be held and helped through all the movements that used to be so natural.  And my ever growing body screamed but I was not going to deprive her of any of the joy that she was experiencing, standing at the play kitchen...like a normal kid.
Relieved that she was ready to sit down for a snack, I placed P on her bottom on the floor between my legs.  And then it happened...something I had not expected - a moment that swelled my heart with sadness.  From the corner of my eye, I saw Pressley look up and hold her glance across the room.  My best friends girls were across the room, sitting on the floor in front of their dad.  He was leaning down to play with one of the Christmas toys they received and the girls giggled with delight as they fished with micro fishing poles for micro fish with gaping mouths.  This was a game that Pressley had remarked on when we arrived - something, surely, she would have loved to play.  But she couldn't get there.  And I could feel her defeat.  I leaned down and asked her if she was ok and she said "I just want to play here, with the kitchen."  So, again, I propped her on her feet and she stood at the play kitchen, with her back to the rest of us and played there, where she knew she could hold on and be supported; By the kitchen and by me.
A Christmas walk felt in order.  So, we bundled up the kids and we put Pressley in her wheelchair and we walked.  We walked to the park where my husband threw the ball for the dog and Ruby carried Press through the grass and mud to the bleachers.  They have a truly unique bond and the love radiated.

We played on the swings, something P loved to do at her preschool...and every park we have ever been to.  She wanted to go fast and she wanted to go high but I couldn't let her.  I held her body and pushed her gently, watching as she tried to 'pump' her legs and when it was time to go, she cried for more.  I cannot wait for the day when she can go as fast and as high as she wants and I won't worry.

We drove across town to my husband's grandparents for a family dinner where, graciously, Pressley's great grandmother "added water to the soup" in order to accommodate the last minute guests.  It was just as it had been the last few years: family, laughter, food, and love.  It was exactly what Christmas is supposed to be.  And Pressley wanted to walk, to show off.  She held her daddy's fingers, him walking behind her, and she squeaked "waddle, waddle, waddle," as her wobbly little legs zig zagged she and her daddy around the house.  And when it was time to go back to the hospital, she cried "noooo!"  I understood.  We understood.  We didn't want to go back either.  But we ended our Christmas expedition exhausted, full of gratitude, and beaming with joy that this was, in fact, a Christmas spent with a miracle.

I was also acutely aware, after the day's events, that she was not ready to go home.  I was not ready to go home.  As hard as that was to admit, we were not ready.  It would not be safe for Pressley.  I could not, as badly as I wanted to, care for her the way that would be necessary to take her home.  In fact, it was glaringly obvious that, as hard as it would be on us, we were going to need to hire help when we did go home.  And then it struck me...another baby would be coming along in no time, as well.  We were going to need more and more help.  We would make it work, all of us, as a family.  We would figure it out.  As a family.  Because that's what family does.

SATURDAY, JANUARY 3RD (2015!)
I continue to be amazed in this process.  It doesn't matter how much time goes by, the days last so long and, yet, the time flies by.  We reached the 8wk mark yesterday and, still, I find myself scrambling to hold onto the time as it flies by in this place where time stands still.  How does that happen?!  It's like some crazy matrix phenomena.  I realized only a day or two ago that I felt unfulfilled - I hadn't written in days.  This is the therapeutic process that allows me to emotionally vomit and provide a map through this experience - as I am sure I will (and already have) begun to erase some of the horrendous memories and feelings.  It will be so important for me to have and to share with my daughter in many many years when I try describing to her how I knew she was a fighter way back when...
And when I sat down to start writing yesterday...Safari crashed.  So, I sat down, closed up the laptop and continued in the Ground Hog's Day that happens here in the hospital.  Only this morning did I figure it out after much determination.

Let me go back to last Saturday, December 27th.  My daughter took several (like, 3-5) small steps on her own; More monumental than when she took her first steps on her 10mo, to the day, of life.  I thought that was pretty amazing back then but this...?  This felt more powerful, more accomplished, and more incredible than any of her firsts.  Since having to relearn everything (I mean, everything), I call these events her "(again) firsts."  The insertion of "again" means that my daughter is one of the people who I read about - the ones who suffer terrible accidents, diseases, strokes, etc who have to relearn how to do life - from swallowing to walking.  That is my daughter.  My conquerer of "(again) firsts."  You cannot begin to imagine the gratitude I had last week when I was sitting on the bench in the Physical Therapy gym and my beautiful little girl, with fear and determination in her eyes, walked into my arms...and, like her first steps at 10mo, I caught it on video.
I don't know why it feels so important to catch these moments, even though I know they are imprinted in my heart and in my head.  I guess I feel like I might miss something, anything, and that feels scary - like I need proof that these things are happening, the good and the bad, because it has all been so incredibly and utterly unbelievable.  The good and the bad.

Sunday, following the upheaval of raw bliss seeing my daughter walk, she took a step back.  And herein lies another example of 'not getting attached.'  To the good or the bad.  Sunday was a mellow and relaxing day.  We took a walk down the hall, hand in hand, like a normal mother/child combo in a strange and unusual setting.  We walked down the sterile hall and into the family waiting room to see the fish.  She held the ledge of the tank, maneuvering herself from side to side, along the length of the fish tank and I followed along in back of her, should she teeter over.  She didn't.
Sunday evening, after we had long since been in bed, Pressley woke up vomiting.  And she vomited until the wee hours of the morning.
As the nurse, the doctor on duty and I postulated what could possibly be causing this, I broke.  Feelings of terror erupted and, like a volcano, so did I.  I was tired, I was again covered in vomit, I was again without answers.  I collapsed on the bed near Pressley, sobbing, fearing the worst: a relapse.  It may have been irrational but it was real.  My trauma and PTSD from the ordeal were on the surface, screaming to be heard.  Vomit was one of the first things that occurred as Ruby and I drove her to the pediatricians that very first day.  Fearing the unknown and having a dry well without concrete answers were driving me to the brink.  "Am I always going to feel like this?," I sobbed out loud.  And the medical staff that night told me it was going to take time.  I was going to feel like this every time she got a sniffle, tripped, or...vomited.  And time was going to be the only way to tell if this was isolated or not.
There she was, in bed, pale and exhausted.  Every sip of water came out the way it went in.  There was no rhyme or reason.  I couldn't reach my husband - his cell was off and he was sleeping soundly.  I got annoyed.  I guess I wanted to have him answer and say, 'I'll be right there.'  It felt like an emergency.  In hindsight, it was not.  I lay awake all night, listening for any whining, hiccup, burp.  I listened intently for the sound of her breathing.  It is still, and will always be, the sweetest sound I know.

SUNDAY, JANUARY 5TH
I cannot seem to put together enough time to keep up with everything.  I just want to sit down and write - uninterrupted.  I just want a lot of things right now.

Anyway...When my husband came at the beginning of the week to relieve me, I was exhausted from having been up all night.  I didn't get out of the hospital for quite some time.  I went straight home and started laundry and meeting up with Ruby and her family for dinner.
The next morning I went out to the store that Ruby and I own(ed).  It was cold, isolated, abandoned.  Our last day of being opened was over, I hadn't been there in months, and I needed to collect some paperwork to file with the county.  That was it.  Our dream had officially ended.  I won't go into the circumstances; certainly Pressley's illness was a factor but there were other factors that led to this and it all seems so unfair.  But that's life, right?
As I drove over the hill towards town, the song that played in the car on Christmas (when we took Pressley our for the day) came on.  And it starts something like this: "When your legs don't work anymore..."  It is a love story but for me it was a trigger and also something very sweet.  Music has a profound effect on me sometimes.  I wept in my car, driving through town - with my husband and daughter at the hospital, our little store closed, and life as I had known it forever changed.  I called my husband, unable to control myself, I sobbed into the phone.
I just wanted my dreams back: my healthy family, my little store with Ruby, my humble little life...
That was it for me.  The day was done.  I sat on Ruby's couch and we did nothing.  I needed nothing.

The next day I got up and went and filed the closing paperwork for the store.  It was New Years Eve.  It was the end of 2014, the end of the store, the end of my old life...and the next day would be a beginning.
When I got home, I made calls to insurance companies and medical providers.  I looked at bills.  I cried.  And then it hit me: Rage.  I hadn't been angry in a very long time.  I was completely enveloped in it.  I stormed around our cold and empty house.  I cleaned violently.  I emptied out the car, I folded laundry, I walked in and out of Pressley's room.
I cried the angriest of tears.  I don't know where to put anger anymore.  I was enraged and I had nothing to do with the surge of emotional violence I was feeling.  So, I kept crying and storming, waiting for the hurricane in my soul to subside.

I returned on New Years Day to find my sweet little family exactly where I left them.  We traded places - Pat went home and I stayed in what had become our home away from home.
I hate coming back here.  I hate everything about it.  I want to be with my daughter more than anything but I want to be anywhere but here.  It takes me about 12 hours to resettle into this place.  I have to physically force myself to re-acclimate.  When she smiles and reaches for a hug, I take a breath and I wait.  I wait for my mind, body, and soul to land.  And then I am ok again.

Friday, it happened.  The words I had been waiting for "We have an expected exit date for you."
January 14th, 2015 - barring any unforeseen setbacks.  Again, a moving target but a target nonetheless.  I began counting down the days, and even hours, immediately.  12.

Yesterday was fresh air, friends, and fun.  Physical therapy took her outside in a closed-to-patients courtyard for a little walk.  Friends of ours took her to the open courtyard and popped wheelies in her wheelchair and raced around cones.  Angels come in a kinds of packages.  My family happens to know a few.

So, here we are - Sunday, a day of "rest" here.  Everything slows down.  We 'sleep in,' we stay in pajamas, we do what we want.  Pressley has been able to cruise the hall with a one-handed assist.  She likes to go see the fish in the Family Waiting Room.  She wants to go places now - it is becoming increasingly hard to keep her still.  She no longer wants to be in her bed - she prefers to sit at the table with me.  Her endurance is up and her strength is improving.
There are many things that need to get done to, not only, baby proof but to, also, handicap proof our home.
In addition to the things we need to "get," I need to find "help."  It has been decided between my family and the doctors that, given my growing body and aching back, I am not capable of providing safety for my toddler around the clock.  Physical therapy said that she has no real comprehension of her "safety surroundings" or "safe movement" for herself.  She is still unable to hold herself up should she topple off a chair.  She cannot lift her head when crawling, lay on her stomach, make 'transitional movements,' like, get herself to sitting, crawling, standing, sitting positions.  She is still very much in need of a ton of physical support.  And I simply cannot provide all of it - as much as I want to or think I can.
And the financial reality sets in.  And I get sad and angry all over again.
BUT - I am bringing my daughter home soon. And I get myself back to gratitude.  My husband, our families, and our true friends will all figure it out.  Because that's families do. 10.

THURSDAY, DECEMBER 8TH
Looking back at where we were, I never thought my daughter would come this far.  I feared that she would be 'stuck,' unable to move parts of her body, unable to recover strength, etc.  Surely I was hopeful that a full recovery would be made but, in hindsight, I am amazed.  We have such a long road to go; there are many functions that she has not recovered fully but, judging from her progress, I truly believe that we will have our daughter back...one day.  Even if it takes the year to year and a half predicted, I am grateful.
I know that 'comparing' is never a good idea, from my own history and from this experience.  However, I cannot help but to look at the situations some of these children and families are in and I get overwhelmed - with sadness for them and gratitude for us.
We have lived here.  We have seen people come and go.  But we have also seen them come, or return, and stay.  Some may never leave.  My heart breaks for these families.  I was there - I clung to her life, just as she did.  I excused the unthinkable from my brain but, still, images of tiny caskets, burying a child, making phone calls and having to say the words out loud...those things were real for me.  They were my reality at one point.  For some families, it will come to fruition.  I want to ask "why her?" and now I am more prone to ask "why them?"
The other day a friend of ours reached out.  Her brother's family had been in a horrible accident.  They were out of state, the children were in separate hospitals, the car was wrecked, and things were bad.  "Why?!"  I wanted to run to her and her family.  I wanted to give back in the way that my family received.  How can these things be happening so close together?  This year was suppose to be better.  The truth is...it will be.  The boys will be coming home soon, too.  And while so many unfortunate and unfair things happen in the world, so do good things and things to be grateful for.  These kids, all of them, are magnificent healers and carriers of light.

People have been asking me about 'how' we are going to manage.  I really don't know but we are.  I assume they are asking about finances and, really, I don't know but we will.  I focus on one thing at a time, tackling the topics as they come, doing my best to keep my head above water, and remain positive.  Last week I was angry.  I was discouraged.  I was a lot of things that kept the gratitude out of my heart.  And while the struggles are very very real, and finances and insurance and bills and blah blah blah, are all very very real...they are not everything.  I wax and wane.  I ride the roller coaster.  I weather the storm.  I sit with my daughter at this dreary little hospital table, imagining what life will be like next week and planning for her to come home, imagining all the things that will need to be done, and I don't care.  I don't care about any of it.  Our beautiful first born daughter will be home.  It will be an adjustment, everything is.  Family is everything.  As we prepare for baby number 2 to arrive, I am thankful that Pressley will be home and family will, as always, support and surround us. 6 days.

FRIDAY, JANUARY 9TH
Some time ago, in all this madness, I was worried that my daughter would never let me hold her again.  I was afraid that she would associate the safety of my arms with pain and suffering...honestly, I was really worried that she might always be in pain.  Last night it hit me, as we lay wrapped in each other's arms in the hospital bed: she is just as, if not more, loving and cuddly as ever.  She strokes my face with her soft, tiny hands.  She nuzzles into my neck.  She 'face cuddles' me - placing her forehead to mine, gliding into cheek-to-cheek position.  She fell asleep last night, facing me, arms wrapped around my neck.  Now I can't believe that I was ever as terrified about this as I was.  I am her mom.  I always will be.  My arms represent safety, security, love, understanding, and everything that every little being needs.  And that is my job.  I know that she will go through many phases in her life...some will reject me, my arms, my love.  But they will always be open to her - with the same qualities then that they represent now.  I am her mommy.  And my baby she will always be.  5 more days.




MARCH 20, 2015
It's been forever since I have revisited this blog.  This experience.  This nightmare.  I couldn't do it.  I have shied away from this piece of writing for the fear that it actually happened.  This happened.  I cannot believe it and yet I lived it. If I sit here at this computer and reflect or revisit, it will make it real.  And I cannot bear to open that wound, to expose the aftermath, to not be superhuman.  I'd like to hold it in and pretend I am ok.  But sometimes I'm not.
I don't know why now - maybe I need relief and this was something that, in the darkest hour, gave me some of that.  Maybe I feel like I owe it to the people who read, followed, felt, and held us up in those darkest hours.  I don't know.  But here I am.
I am a mother of two.  A lover of two alive, awake, amazing little girls.  And I feel I am completely out of control.
Pressley is home.  She is thriving.  To look at her, you would never know how sick she was, how close it came.  Her rehabilitation is astonishing.  I could not be more proud.  She is, now, a back-talking, sassy, dancing, sweet, toddler.  She does everything other toddlers do, for the most part.  There are still a few areas where she is not 100% but she is, by all rights, recovering.  She will continue her recovery process and, hopefully, continue to progress and improve.
And she is a big sister.

Jordyn is now two and a half weeks and is beautiful and perfectly innocent and untouched.  She is a blank canvas, not yet touched by the world or marked by the things that life brings.
I want to wrap them both in bubbles and glitter...protect them, shelter them, and hide them away from the world.  And yet I know that this will only cripple them.

How do I sum up the last couple of months for this amateur blog?  I can't.

I wake up in the morning and scramble to get the three of us dressed and out of the house.  The truth is, only two of us end up in clean clothes and only two of us have bathed in the last couple of days.  I encourage you to guess which two fall into either of these categories.  It varies.
We now have our incredibly challenged bulldog, Porkchop, home.  So, inevitably, I am actually carting around the two girls and the bulldog.
I take my daughter to Occupational and Physical Therapy three times a week without fail.  I feed my newborn every 1.5-2 hours without fail.  I change 10+ dirty diapers in an 8hr span without fail.  I pick up dog poop...sometimes I fail.
I cry, as new mothers do, a lot.  I am sleep deprived.  I am tired.  I am hard on myself.  But the one thing that I am (more than anything else) is...SCARED.  I am in fear 24hrs a day.
My fear of death is overwhelming and paralyzing.  It may be rational and may be irrational but it is there.

We spent a weekend in the hospital, after a trip to the local ER and another ambulance ride to the PICU in the middle of the night, after Pressley got pneumonia.  The fear that she was going to relapse and the fact that the local hospital was not equipped to handle it if she did, had us back in San Francisco.  36 weeks pregnant, scared, and exhausted, there we were.  And she was ok.  She was home in 48hrs and shortly thereafter, pneumonia free and without a GBS relapse.  This was great information to have, actually.  I suppose I should have taken some reassurance that she was not going to relapse after every virus, illness, hiccup, etc.  To have the information was one thing but to have the information guide my psyche was another.  My trauma is deeper than that.  My PTSD has prevailed...

We spent a week with my parents at the coast after Jordy was born.  It's only about 40 minutes away from home but it's an hour from the hospital and cell service is shotty.  I was constantly assessing the emergency plans and hyper focused on Pressley's legs, her neck, her state of being.

We took a drive down to Hearts Desire Beach and when we arrived, Pressley had a bloody nose and vomit on her shirt.  How did I miss this?!  She was so casual about it as we pulled into the parking lot.  My husband and I sprang to action.  You cannot imagine the rush that takes over when, in an instant,  you believe in your entire being that hell has made its way back into your life.
My husband and my father checked her out and attempted to reassure me that she was ok.  I crumbled into the arms of my husband and sobbed.  Although the fear was so real i could taste it, I felt ridiculous.  I made my way towards the beach, following my family, as tears rolled down my face.  I watched her play in the water and sand, tears still rolling down my face.  I approached her, questioning how she was feeling and what her body felt like, tears rolling down my face...with sunglasses on.  I was unable to enjoy the day.  I could not wait to have cell reception again.  I could not focus on the beauty or the joy of it.  Even as I watched her splash and giggle and play with her daddy and her grandpa.  I was consumed.  Swallowed whole.  I just wanted to get somewhere where I could call her pediatrician and her neurologist.
She was fine.  She had another vomiting episode and a fever.  She had a low grade virus.  Again, no relapse.  Weren't these experiences of no relapse enough to relieve me? Nope.
Some of this can be attributed to the hormonal roller coaster of having just had a baby, yes, but I truly believe that I may never shake this ever present fear of loss.  And then it was confirmed.  Pressley's pediatrician told my dad "it will always be there.  She will always have this with her."  It made me so sad to hear that and know that this piece of our lives will live as an ugly demon in my head and in my heart.  Something I cannot control.  I like control.

I noticed this demon, Fear, at another place in our week at the beach.  It surprised me, this one.  But I noticed it and I realized just how consuming it is...lingering there in the dark crevices at the back of my mind, lurking, waiting, ready to take me to my knees.  Fucker.
On another outing, my husband took off for the far end of the beach and disappeared into the rock formations where the water meets the shore and I thought 'this is it.  He's going to get swept away and we will be one of the horror stories you read about."  There were a few more layers to the thoughts and they happen so fast, all of them at once...but that's the gist.  I noticed the sensation in my body and how powerful the thoughts felt.  'I need to go talk to someone, this is insanity,' were among the next thoughts.
I have been saying it for weeks now.  But to go, relive, revisit, shine a light in that dark crevice in my head where that demon lives would make all of the last 6months real.  And I'm just not ready for that.  Or am I?






41 comments:

  1. , thank you for sharing all of this Erin. I have been keeping up on your Instagram but didn't know all the info until now. I'm so sorry this happened to you and your family and your sweet baby. I can't imagine. I'll have my husband read this because explaining to him why some vaccines scare me won't do the trick like this blog does.

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    1. I cannot say for sure whether it was the vaccine or not but...I have my suspicions and, even after reading up since all of this happened, the possibility that it could be from her flu shot has me rethinking unnecessary vaccines...A lot! My gut is my guide and I am pretty darn convinced. The more we check off the list of causes, the closer we get to the answer...

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    2. I am a survivor of GBS and mine was definitely the result of a flu vaccine. I was 13 years old when I had GBS back in the late 70s brought on by the mandatory swine flu vaccine. My doctors at the time told me (with tears in their eyes) to never take another flu shot. During my hospital stay I had three spinal taps (which caused massive migraines), my blood was drawn on hourly intervals, and I had to learn how to walk all over again once all the paralysis was gone. I suffered miserable migraines for a long time afterward and had to be privately tutored for my school work. My time of having GBS was before the blood cleansing stuff they do now. I will keep your precious little girl in my prayers. Her recovery time will be a very long process :'(

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  2. You are a powerful Mamma and a strong family. Your little girl is going to be a fantastic big sis. We are so glad to hear she is doing well, we send our support and we will always be here, anyway we can help. Always believe your instincts, as a parent, overtime we learn to trust ourselves to know when it is not right. We appreciate the doctors that can look at our children for who they truly are and not as a medical number. Too often doctors cannot connect with the family, and I understand that it would be too difficult emotionally, but it is so unfortunate that a child should suffer because the doctor is not devoted. The doctor that will go above and beyond and never give up are a true blessing, and far to few. Every family has a story and lets pray this is all for yours, but with this we learn what we are made of, as people as parents as someone always learning and growing, as 2 people together as a team in tough times at what seems like the end of the world. It is tough for me to understand that we are given what we can handle,sometimes it is too tough, it seems unimaginable in the darkness,but it allows us to see how fortunate we are for what we now have and for what we have been blessed with. Al out love and prayers for ongoing strength to you and your family - Heffernan Family

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    1. Thank you for the thoughts, the words, the kindness and the encouragement. And for taking the time to read our story. Blessings and happy holidays!

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  3. Which vaccine do you think caused this?

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    1. Think is the operative word...we are still waiting on test results, etc but my intuition tells me that my daughter's condition is an incredibly rare, but not impossible, reaction to the influenza vaccine she received a couple weeks before the symptoms began. There are many kinds and the information on them is available as is the ability to trace the one in particular. Stay posted as I find out more, I will post again and again :)

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  4. What a amazing story of hope and determination. I am amazed at hers and your strength through all of this. Thank you Erin for sharing this and bringing awareness to vacines. Your little light sky is so beautiful .With ♡ micki

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  5. Do you still believe in vacinatons still or is it just unnecessary one like flu ? .that is such a huge topic these days..

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  6. I don't know if you know me by merrianne ..this is micki Erin. .

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  7. Hi Micki...the jury is still out on my hard line beliefs but my intuition tells me to vaccinate for things that are preventable - like measles, whooping cough, etc but I, personally, will never EVER go for an industry pushed vaccine like the flu. It is only last year's strain and doesn't even cover them all. Soooo...Flu vaccinations are like the pharmaceutical companies in my eyes. And the more the vaccine is pushed, the more numbers of people harmed will occur - it's a "numbers thing" and my daughter is on of them. Sadly. But I do not wish this on ANYONE.

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    1. I strongly suggest you look into measles and whooping cough. No one in our community vaccinates and these diseases are easily treatable. We have never even been to the hospital over them. It is wrong that so many people fear these diseases that I saw all the time growing up and we all thought nothing of having a rash and a fever for a few days. Whooping cough sucks but lots of vitamin C kicks it right out. These vaccines are ALL bad. The measles vaccine is ruining our ability to develop immunity that can be passed onto our children. The Pertussis vaccine decreases type A pertussis but makes you MORE likely to get type B pertussis.

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    2. @Lilian Isis. I totally agree with you and an example is that my two oldest are vaccinated and they were always sick, now my youngest which is not vaccinated is completely the opposite, she is never sick. Sadly I learned the truth about vaccines the hard way after my youngest had a scary episode of petichea right after her two months vaccines. We experience something very similar to the story here, very scary. I still cry every time I remember those days, seeing my daughter suffer so much, worst nightmare of my life. By the way nothing was found and of course Dr's never considered the vaccines being the cause and needless to say I don't vaccinated my kids any more.

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  8. Bless you and your little girl. My 2 year old daughter suffered life threatening seizures after a Dtap combo vaccine. Your story touches all the broken pieces of my own heart. Stay strong for her and keep your heart open. <3

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  10. You are a beautiful and strong family. The strength between your love and understanding is beyond incredible. I hope that with each day your daughter becomes stronger, physically and mentally and that the little miracle she is becomes a true statement. I am truly sorry for all that you are going through, but as a mother it breaks my heart to hear your story along with hers. I wish you guidance, patience, and most of all - hope.

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  11. Whooping cough may not be a big deal to an adult.. Treated with Zithromax... But it is deadly when passed on to babies. Which is easily preventable

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  12. I hate 99% of vaccines and you can get recovery funds here http://www.hrsa.gov/vaccinecompensation/index.html
    ...but this little girl needs prayer. Here is my prayer:
    Almighty God, I can feel this mother's love for her precious Pressley...and I know, as inconceivable as it may seem, that You love her even more. I know You as a Good God and a Great God. My first prayer as a toddler myself was, God is good...God is great and we thank him....when adversity happens sometimes that is all I can muster in prayer...and yet You hear my groaning and childish prayers and You fill in the blanks to make a beautiful wafting of prayers coming from us inept people. Im asking you to take little Pressley's face in your gentle hands and smile on her, whisper in her ears that You will heal her and bless her. Warm her with you presence and comfort her with your abiding Holy spirit. Cradle her when mama and daddy's touch cannot help. Uplift mama and daddy...give them rest and peace. I pray in the name of Jesus, our Healer and lover of our souls. amen

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  13. We are reading this story with tears in our eyes.. We are praying for you and Press... We wish we could do more to help you... Its so painful to see your little in angel and family under such duress. I cant stress enough how much we are supporting you. We have a little princess the same age... Your writing skills has brought us into your life and we gasp with every word. We love you and the strength both you and Press are showing.. We will continue to monitor and would love to help if there is anything we can do, please email us nypbbob@yahoo.com.... Please Lord Jesus heal this little angel.. She doesn't deserve the pain. :(:(

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  14. Hi,
    you don't know me, but I just wanted you to know I am praying for you and your family, and sending lots of healing vibes. A friend I know tried this organic feeding tube formula and said it did wonders, just wanted to pass it on.

    http://functionalformularies.com/#sthash.pkajGaDS.XTn4SWwt.dpbs

    take care,
    a friend in CA

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  15. Erin, have you tried breastmilk? Maybe that would help keep down some calories and it could he very healing. I don't know you, but after reading your story with tears in my eyes, sending your family light and strength. Let's talk if you're interested in breastmilk donations

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  16. Erin... I'm praying for you and your family. What a brave little girl you have..

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  17. My heart breaks for your daughter, you, and your family! I am praying she will be healed and return to her old self again and soon! I am not sure if you heard of Protandim. It is a natural supplement which has been proven to turn on our own bodies natural antioxidant enzymes including glutathione at a tune of a million per second to gobble up all the free radicals (oxidative stress) that lead to illnesses and disease. It has helped with neurological impairments like MS, muscular dystrophy, RA, and so forth. It is a caplet. I know she has a feeding tube. I know she is still able to eat. My thought it could be crushed and put into applesauce. I could contact the biochemist and see if they have something for pediatrics. The company that makes it is called LifeVantage. It could be ordered online. I would even send you a bottle. I had a patient with GBS, he was a grown man. He made improvements. I hope that will give you some hope too. Your daughter is so young so hopefully her improvements will be quicker. I am praying for that! May God bless Pressley and heal her! Keep smiling even when it is hard too! :)

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  18. I was just thinking and wondering if you are being transferred to a neurological hospital with inpatient rehab? I hope and pray you are! God bless!

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  19. I second an earlier commenter on the breast milk donations. It would be much easier for her little body to digest. If you're willing, check with your pediatric unit and see if they have anyone who donates to them. Humanmilk4humanbanies.com is also a great donation site. If I could pump enough to make it worth it, I would gladly donate. But pumping and I have never worked out. The only time I could successfully pump was for the one week my son was in NICU with failure to thrive. He gained a whole pound and a half in one week and all they did was observe us (he nursed, took pumped milk and then was put on Nutramigen formula), then said he'd recovered enough that we were sent home. Were definitely praying for your baby P. She is so loved, even by those who have not meet her in person. Hang in there <3.

    FYI, the only formula that my children are able to take is Nutramigen. Can you ask them to switch her to that one? Or give you a prescription for Neocate formula? These two are the "gold standard" of formulas and are easily disheartened by babies that have dairy allergy or dairy sensitivity (like my kids had).

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  20. Sorry, here's the correct link:
    http://mobile.dudamobile.com/site/hm4hb?url=http%3A%2F%2Fwww.hm4hb.net%2F&dm_redirected=true#2630

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  21. Wow! what a tear jerker. Poor wee poppet, so sad. Sorry for everything that you and your family are going through especially Pressley. I know you get to a point in your life sometimes where you are willing to try anything to help...I say that because my father-in-law has a business called Colour Therapy which is to do with alternative healing. No needles, no drugs....I only like to try and help if i can even if it is with someone I don't know who story touches my heart. There is a video on the homepage that explains how it all works. This is his website http://colour-therapy.co.nz/ :) that is my daughter at the end of it...she is 6 now so the video is a few years old. It's ok if you're not interested, was just a thought. I hope things start improving alot more very soon. Let Pressley know that we are sending her happy, get well vibes all the way from New Zealand :)

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  22. I probably should have specified... I am nursing a 20 month old and would happy to personally pump milk. Please reach out if at all interested. I'd be happy to answer any and all questions. Hang in there mama. Best to your family and speedy recovery to your little one!

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  23. dear God, restore Pressley to her former self. Take away her fear, pain and anxiety. Give her peace and complete healing. Send your Angels to care for her. Tell nausea and trembling and pain that they cannot come into her room ...keep away evil and bless the little tyke. Let mama know it is You, God, who is Pressley's healer. Bless them all in Jesus name ....amen

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  24. You're little girl is gorgeous and your situation devastating. I second or third the suggestion of breastmilk. Not only because it is easy to digest, but because it contains properties that assist the nervous system: http://www.ncbi.nlm.nih.gov/pubmed/21809438
    It also contains DHA, which again supports the nervous system (donor mum could also increase intake of wild fatty fish from cleaner oceans to increase levels) http://www.urbanchildinstitute.org/articles/research-to-policy/research/the-evidence-is-clear-breastfeeding-promotes-optimal-brain
    Hope your darling recovers soon.

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  25. This breaks my heart. I hope to see you around town in six months with a lively toddler and newborn baby in tow. Until then, our thoughts are with you and hopes for a speedy recovery.

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  26. Hi I am to going through a similar situation and my four year old daughter. She is currently a patient to at UCSF and getting intensive rehab. My friend read your blog and sent it to me. I am so sorry about this. The questions and emotions have been rattling my head for the last 11 weeks. Moments of shock, anger, why, and then peace are just a whirlwind. We will discharge on Wed 12/10 and I hope to connect with you. We are in room 774. Ana

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  27. He offers hope in spite of suffering; peace that surpasses all understanding. Many prayers are being offered daily on your behalf - prayers for answers, prayers for healing, prayers for strength, prayers for progress, prayers for hope!
    Hopeful for you all, Kristie

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  28. The Porrinos here in Sonoma can help with the suggestions for feeding a detoxing her. I also vote for the Breast milk!!! Please contact the Porrinos and get an opinion. Also talk to them if you decide to vaccinate her further with anything else. They are a great resource! 7079969355. Www. Sonomanatmed.com

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  29. Erin,
    I've read every post and you sound like a wonderful, intuitive, loving mother. Don't ever doubt your motherly instincts. I'm so glad to see that Pressley is starting to improve. Please give my love to Patrick and the rest of the Slattery family. I haven't seen them in years but still care deeply for all of you. Mary Anne Heffernan

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  30. My husband had GBS in 1992. His was all motor nerves(paralysis) and no sensory nerves(pain). I can not imagine what going thru this with a child would be like. He had plasmapheresis many times as his became chronic/repeating. He had not had a flu shot but had heavy metal poisoning(amalgm fillings being part of it). After having all the fillings changed he slowly got better. It takes a long time for nerves to heal. Thinking of you as you 'journey'.

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  31. Please update us on how sweet Pressley is doing. I have followed your journey and am in awe of your strength, resilience, and bravery. You all are deep in my thoughts, and I wish Pressley continued healing and love.

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  32. I have been following your blog for a while now and have enjoyed reading your posts and watching your daughter improve and strengthen. I hope all is well and would love to know how she is doing!

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  33. I'm glad to hear how well she is doing, my heart, as a mom and someone who has battled depression aches for you. I haven't dealt with a situation of such loss of control and constant dread as you have but I can feel your raw emotion through your writings. I have known my counselor since I was 14 (I am 23 now) and she has really helped me battle through depression. I only see her everyone once in a while to check in or if I have been having a rough time. She has taught me a great deal in how to deal with negative thoughts and how to recognize when I am having them and how to counter them. It is hard to say how you feel out loud, I can write all say, but when it comes to saying it, I do find it very hard; however, I strongly urge you to try to talk to someone. After you finally say it, it does help and start to relieve some of those weights on your heart. I am not sure on your stance on medicines, but I also take anti-depressants and they really do help and there is no shame in trying them if you think that is a route you would like to take. Above all I recommend talking to someone. As always, you and your family are in my thoughts and prayers.

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  34. Erin please call me 415-342-1345. There's a bill in senate trying to mandate vaccines for all children in ca and there a BOS meeting Tuesday march 31st at 1pm civic center room 329 that needs people like you to show up to to oppose this bill!!! Please call me. I'd like for you to get involved in the fight to defeat this bill SB277!

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  35. Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.

    http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/12/what-you-do-not-know-if-you-do-not-have.html

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