Saturday, April 12, 2014

Gratitude

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Yesterday Sophie went to her friend E’s “Birthday Party in Paris!”  I think the scarf and blue stripes fit the theme quite well.  Soph actually kept the scarf on the whole time.  E’s house was decorated in bubble gum pink, Eiffel towers and pink poodles.  So cute!

I brought a bag with an extra pull-up, wipes, and a straw/lidded cup. I pulled the birthday girl’s mom aside and for the first time ever (and Soph has been to a LOT of birthday parties) I truly did not feel apprehension.  I made sure she knew to use the cup to avoid a spill.  I showed her the pull-up and wipes and made sure she was comfortable helping Soph should the need arise.  She is pretty independent in the potty, but has a regular need for a change if we don’t initiate a bathroom break.   


AND THEN I LEFT! Mark and I had a babysitter coming over and I needed to get ready.  I actually RAN out the door. 


It wasn’t that the dozen girls swarmed Sophie when she arrived as if they hadn’t seen her in ages (it was 1 hour after school got out).  It wasn’t that the birthday girl’s brother exclaimed how much everyone really likes my daughter. 

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silly faces!

It was the quiet arrangements and understanding from the birthday girl’s mom that have me on.the.floor. 

She knew Sophie has to be closely watched or she is likely to run off and she’s fast.  As keeping a dozen 6-7 year old girls entertained is difficult enough on it’s own, being far into her pregnancy meant that she knew she needed reinforcements.  So, she got them.  She had a wonderful young lady there who as far as I could tell was the official Sophie Minder.  Now, Soph’s peers do a great job refocusing her, but she can be stubborn.  This helper was fantastic.
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spinning girls!

The mom didn’t blink at the idea that Soph came with an extra pull-up or lidded cup.  She didn’t have a look of anxiety on her face when I told them to have fun and headed for the door.  She was unconcerned and ready.

I’ll say it again.  I dropped Sophie off at her friend’s birthday party without a trace of anxiety, knowing she was in loving hands with people who accept her as she is.  The adult in this scenario made arrangements ON HER OWN to be able to make this happen.  It couldn’t have felt more natural.

THIS is why we believe in inclusion.  It’s not about academics alone.  It’s about building a community where everyone belongs AS THEY ARE inside and outside of school!  Sophie's friends have embraced her for as long as I can remember, but folks, she's got multiple generations on her side and it is AMAZING!

Tuesday, April 8, 2014

Thursday, December 5, 2013

Bionic Woman

continued from part 2, HERE.

I did my due diligence, believe me.  Spinal surgery isn't something you jump into just because one or two specialists tell you to.  The first neurosurgeon I met with impressed me.  Kind, patient, thorough and smart he instilled confidence as he explained my options.  Despite having done my homework on the two surgical approaches, I learned quite a bit from him.  He did a series of neuro tests and we discovered that my walking had been altered, a fact I hadn't noticed.  It's strange how we compensate without realizing it.  He asked me to do the field sobriety test that police use, walking heel to toe in a straight line.  I flunked as I could not take one step without falling over.  I admit, it jarred me.

The pain in my neck, shoulders, and left arm had continued to increase daily and my right arm and hand is now symptomatic.  Although I hated to do it, I had finally accepted that I could no longer work and went on medical leave.  Though I had tried a long list of medications, I had declined pain killers any stronger than Ibuprofen, wine, and muscle relaxers.  Something about failing the walking test and the potential permanence of my condition led me to accept the neurosurgeon's suggestion that I try a nerve pain killer as well as a narcotic pain medication.  The good doctor ordered additional tests including a C-spine CT and X-rays.  In the meantime I continued to seek additional opinions.

Research kept pointing me towards Jefferson University.  Still, I met with another neurosurgeon that my neurologist had recommended.  He was very pleasant but was ruled out almost immediately as his medical group was not authorized to perform the type of surgery I was hoping for.  In most cases like mine, the bulging disc is removed and replaced with a bone graft either taken from the patient's own body, typically the hip, or from a cadaver donor.  The vertebrae above and below are fused with a plate and screws. This limits mobility of the neck.  Also, just as with my congenital partial fusion of C5/C6, the added stress on the bones above and below the fusion will begin to degenerate.  Additional surgeries are likely.  The other option and the one I prefer is an artificial disc replacement.  Just as with the fusion surgery, the bulging disc is removed.  Then a metal plate is secured to the bones above and below with a plastic ball in the middle creating a ball bearing.  Mobility is much greater and the stress on the bones above and below is not a concern.

This doctor agreed that artificial disc replacement was a good alternative and he began to think out loud of colleagues he could refer me to.  The first place he mentioned was Jeff (Jefferson).  I told him I was aware of Dr. Heller at Jefferson and his response sealed the deal.  "I couldn't be in better hands," he said.  He couldn't be happier that I would be with Josh, his good friend.  Dr. Joshua Heller was the first opinion I had sought.  Happy with the ringing endorsement, I was relieved to have made my decision.  Next was the CT and X-rays.

I've taken my meds as instructed, though they don't really make a dent in the pain.  The zapping electric shock in my hands has been unrelenting.  I constantly drop things due to weakness.  Simple tasks like washing my hands or buttoning buttons are difficult and increase the sensation. The meds have, however delivered their promise of weight gain as a side effect.  I feel like a hose has been plugged into my belly button as I've blown up at an alarming rate.  My face is as round as a cherry tomato.  My eating hasn't changed and I actually crave salad, but I am not able to move around much.  I've also developed twitches that occur while awake or asleep.  I get woken often by them and also by my jaw opening and slamming shut, sometimes catching my tongue to the point of biting into it.  This is likely caused by the spinal cord damage, almost like I'm getting erroneous signals from a fried wire.  So, I've done what anyone would do in my position.  I've watched all of the episodes of The Good Wife (prior to this season) and I'm on the last season of Breaking Bad on Netflix.

Mark is my Prince Charming.  He's everything to everyone in our little family, mostly without complaint though he has episodes of what he calls "Rage Cleaning."  I am grateful that he is on sabbatical this semester and able to take over for our family.  He not only shops, cooks, cleans, and chauffeurs the family, but he also spent most of Thanksgiving decorating for Christmas.  The outside of the house can be seen for miles and it is fabulous.

At my second appointment with my neurosurgeon, he ordered more X-rays as he needed additional views with my neck in different positions to gauge stability, so I headed back to radiology.  While waiting for him to decide if I would qualify for disc replacement versus fusion, I watched a few videos of the surgery on youtube.  Mark can't stand the site of a needle, so he thinks I've completely lost it.  I used to be squeamish, but having three kids and being a fan of horror films and zombie shows has desensitized me.  At one point I caught myself thinking of tandoori BBQ chicken while watching a disc being removed and it was my own thought that grossed me out.

My mentor, friend, and boss Diane picked me up at 7:15 am and took me to my pre-op appointment on Tuesday so that Mark could get the kids off to school.  At noon my friend Lauren brought me lunch and stayed with me through the many questions, poking, and proding.  These are the kind of Wonder Women that I draw to me.  I spent all day getting my blood pressure checked (3 times), giving my health history, list of allergies and medications, an EKG, a blood draw, and conversation with an anesthesiologist.  I even had a chest X-ray and I swear in the dark I emit a soft glow.

Mark's mom will be here for two weeks, thank the lord, though getting here has been it's own challenge due to fog.  Yesterday she had flight delays and cancellations, arriving in Chicago last night only to have her last leg cancelled.  She's in the air as I type.  She too is Wonder Woman.

My health insurance approved the surgery with a modest co-pay and the good doctor approved the artificial replacement.  There is a chance that once he gets a closer look, he may decide fusion is necessary, but he is prepared for it.  I have been carrying the CDs of the MRI, CT, X-rays and reports in my purse along with my health care declaration and living will for weeks, just in case.  My bag is packed with a change of clothes and toiletries.  I haven't eaten since midnight when I wolfed down a salad and a Little Debbie Christmas tree cake (don't judge) and I stopped drinking at 8:30 this morning.  I'm ready to go.

Recently we have been given hope that I will, in time regain what I have lost.  There is no guarantee but the dismal prognosis I had been originally given isn't a guarantee either.  It makes sense I suppose to prepare patients for the possibility of permanent damage but I don't accept that.  My surgery is at 12:30pm Eastern time today, Thursday, December 5th.  It is expected to take 3-4 hours and I will stay for one or 2 nights.  Mark will be joined at Jeff by one of our pastors and his mom and will provide updates through my ReJenerationS twitter account and on fb.  In addition to prayers and good thoughts, I have another request.  I'd like to keep Mark busy and laughing all day.  Either on this post in comments or on fb, please post jokes, funny stories, and videos.  I want him bombarded and distracted while I'm getting fixed up.

I'm not particularly scared.  I just want this over.  I've got friends and family all over the globe lifting me up.  I'm in great hands at Jeff.  I've got the good Lord on my side and plenty of work left to do on this earth.  So, me and my brand new Wonder Woman uniform (pajama pants, t-shirt and robe) are headed out the door.  After all nothing else would do.

Wednesday, December 4, 2013

Emulating Wonder Woman

continued from part 1, HERE

As a tot my heroine was Wonder Woman. Beautiful, strong, justice fighter and feminist icon, I didn't just look up to her. I wanted to BE her. According to family lore, my parents took me to Penney's to buy my very own Wonder Woman costume. This was in the late 1970s and I was about 3. They had other costumes in stock but not Wonder Woman. No other costume would do so I stood my ground and we left empty handed. My Aunt Sandy was living in Florida at the time and she went on a search and found it. Back then we had to wait for Saturday morning to watch cartoons. The way my mom tells it, I woke up early in anticipation of the show and put on my costume believing that it would give me the same powers as the Amazonian Princess. When my powers failed to materialize I had a complete meltdown, barging in on my still sleeping parents. In my first identity crisis I screamed in disbelief that it wasn't working and where was my invisible jet?!

I consider myself to be young, even at 37, with more of my life ahead of me than behind. My purpose here on this planet is to be a justice fighter and I accept that role with joy. When I take a step back and look at my life I am amazed at what I've survived and what I have accomplished either in spite of or as a result of some pretty heavy experiences. Whether it be my work in high school and college in child abuse prevention, my years of community service through AmeriCorps*VISTA, my 20s in domestic violence intervention, or my 30s as an advocate for the disability community, I am honored to serve the underserved and blessed to have found work that shares my focus.

My pain, numbness, and increasing weakness were no longer just annoyances. It was stopping me in my tracks, preventing me from my work. Weeks of conservative care didn't help so I saw a neurologist who ordered an MRI of my C-spine. Our assumption was that I had a bulging disk in my neck that was pinching a nerve. I was given a CD of the MRI images and it was clear that my disc between C4/C5 was herniated. The radiologist posted the written report on-line which I accessed through my health care website on a Sunday morning. I spent the better part of the day combing through the one page report. Going only to well respected medical sites I meticulously deciphered each finding and reported them one by one to Mark. He was dubious about my layman interpretations and reminded me that we would be meeting with the neurologist in a few days. "Leave it alone," he insisted.

By late Sunday afternoon I felt confident in my understanding of mild endplate irregularity, discogenic marrow signal change, mild to moderate loss of height and signal, marked hyperplasia, uncinate hypertrophy causing moderate to severe neuroforaminal stenosis and paracentral disc protrusion that focally deforms the ventral theca. As a Momologist I do not need to have a degree in neurology to read and grasp medical terminology. We Momologists hone skills out of necessity to help our children with special needs.

The third impression in the report is the one that made my blood run cold. Posterior disc bulge at C4/C5 that compresses the spinal cord, eccentric to the left. The central cord shows associated focal T2 hyper intensity at this level consistent with myelomalacia from chronic impression. The report lists 5 impressions. Why the radiologist stuck this one smack dab in the middle baffles me. Irrational, I raged at the injustice of the order of findings that in my mind should have been ranked in some kind of order that made sense, such as; least important to most pressing or the reverse.

Myelomalacia. I searched and searched for more information, desperate enough to peek at Wiki. Mark categorically dismissed my discoveries, even taking away my computer and insisting that we wait to hear from the neurologist, but I knew what I read. I spent the rest of the Sunday and Monday in a very dark place. Then, in the middle of the night I woke up for no reason feeling a peace I did not understand and I knew everything would be alright.

We saw my neurologist who confirmed in the first 30 seconds with him what I had already come to accept. I have a bulging disc that has been protruding into my spinal cord for some time causing damage that is likely permanent. Without surgery it would progress but it would not improve my condition. Mark went pale and got very quiet. I knew he was entering the dark place that I had been just a few days prior. My doctor did a EMG and found that my nerves are fine, giving further support to laying blame for my symptoms firmly at the feet of the spinal cord damage. We left with an appointment to see a neurosurgeon.

In some ways I had come to believe I was a mild version of Wonder Woman or that I at least emulated her in some ways, but my body had failed me and my super powers weren't working.

continued in part 3, HERE

Tuesday, November 26, 2013

Regenerate

When I started this blog 5.5 years ago I wanted to come up with a name that had meaning.  Change the G to a J and you get ReJenerationS which has my name in the middle and my initials (JRS).  It nods to multiple generations, but more importantly the definition and concept of regenerating resonated deeply with me.  It’s not just about growth but about healing, restoring what once was or making something better than it was before it was broken down.  It can refer to physical or emotional states.  Regenerating can be spiritual in that a person’s faith can be questioned, examined, and radically changed.  Relationships sometimes go through this metamorphosis.  Those that survive a trauma come out stronger.  Sometimes this takes months.  Sometimes it takes a lifetime.

Regenerating over and over is how we experience life’s lessons.  My greatest challenges, even the most painful have resulted in growth that could not have come any other way.  It occurs in cycles, sometimes overlapping, never within our control.  Some are more serious and have more impact than others.  I’ve come to believe that this is the whole point to life.  That we experience the full range of joy and sorrow in order to learn and evolve.  We are charged with coming through these challenges better equipped to bring joy to existence.

My current challenge began while I was still being knit together in my mother’s womb.  Before I was born two bones in my neck that were supposed to separate failed to do so resulting in a partial fusion of the bones C5/C6.  For my whole life I’ve had a slightly less mobile neck as a result.  I didn’t know any differently.  The trouble with unseparated vertebrae is that this causes arthritis or degeneration in the bones and discs above and below the fusion due to the added stress placed upon them.  This degeneration was a process set in motion from my beginning.

As we age the majority of humans, if given an MRI, will eventually show wear and tear of our spines.  That is because we carry our 10 pound heads around on little bones designed to be strong, yet flexible.  Spines are a fantastic design, but they often experience injury regardless of how careful we are. 
In 1997 I was a passenger in a car that was rear ended by a drunk driver on an interstate.  My neck suffered trauma but no broken bones.  Conservative care for many months by a talented chiropractor brought relief.  Through the years I have reinjured the area by seemingly harmless activities like housework or exercise.  Chiropractic care has always come through for me.

During the month of August, Mark and I took turns taking Sophie to a feeding program at the children’s hospital every day, Monday through Friday.  On my days we would take the train.  I would help her on and off and lug her heavy back pack on my shoulders all day.  In early September my symptoms set in. 

At first I noticed a tingling sensation in my left pointer finger and thumb, like it feels when your hands or feet “fall asleep” by sitting the wrong way.  Then my neck and shoulders began to hurt in the old familiar way so I did what I knew and went back to my chiropractor.  I’m a busy person so despite the pain, I went sporadically in September.  One day, I arrived in a ball of snot and tears from the pain, the numbness that had increased, and pain in my arms which was new.

My doc had a Come to Jesus talk with me (ironic, given that he’s Jewish).  With a soft, kind voice but a firmness I had not heard in the three years of being his patient, he spoke about walking the line between offering his patients freedom to dictate their frequency of treatment and insisting on consistency that gets results.  “Jen, we’ve talked about this.  You don’t just have pain this time.  You have numbness and an electric shock feeling in your hands.  This is NERVE DAMAGE.  If you don’t address this now, it could get worse and it could be permanent.  You’re busy.  I understand that.  You need to decide what is important to you and I strongly suggest that you put your needs at the top of the list.”
It’s what I needed to hear and I took it to heart.

continued in part 2, HERE

Saturday, October 19, 2013

Buddy Walk 2013

Team Sophie rocked our 7th year of participating in the Buddy Walk for Down syndrome awareness.  To be honest, I wasn’t sure we would be doing it this year for a variety of reasons. 

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I formed a new Daisy Girl Scout troop for Sophie’s 1st grade and Kindergarten peers.  Our troop decided to support Team Sophie and Team Nate.  Maddy is in 1st grade and her handsome little brother Nate happens to have DS.  Somehow we ended up in the local paper.

doc524b0c14aaf742252658961

By Linda Stein
lstein@mainlinemedianews.com

On Sunday about 4,000 people will gather to take part in the 12th annual Buddy Walk and Family Fun Day which benefits the Children’s Hospital of Philadelphia Trisomy 21 Program.


Trisomy 21 refers to the presence of three copies of the number 21 chromosome, rather than the usual pair. It causes Down syndrome, one of the most common genetic disorders affecting some 350,000 Americans, according to the Down Syndrome Society.  This year, 16 Girl Scouts, who are part of Sophie’s Team, will take part.


Sophie Schrad, 6, a Radnor Elementary School student with Down syndrome, will join members of her Daisy Scout troop taking part in the walk, said her mother, Jen Schrad. The Schrad family has participated in the event since Sophie was born, said Schrad, who is also the troop’s leader.  read the full article here.

Not only was I blown away by the support from Sophie’s troop sisters, but I came home the other day to find an envelope full of more donations from our elementary school community for Team Sophie.  We are overwhelmed.

Newspaper article

Darth Vader & a very brave young Jedi

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We are exactly where we are supposed to be.

Tuesday, August 13, 2013

The Trouble with Food

(New here?  I suggest you read the first post on the Children’s Hospital Day Feeding and Swallowing intensive program, HERE).

It was going so well!  Week 1 of intensive feeding school got us to the point of where Sophie happily ate hotdogs and macaroni and cheese in addition to her few preferred foods.

Over the weekend when she does not have the program, I was thrilled to successfully get her to eat 2 hot dogs and strawberry applesauce.  Yesterday in therapy she even ate pancakes and pureed broccoli!  I made a modification to her umbrella stroller with PVC pipes and duct tape (costing only $3.46) to extend the handles and it worked like a charm.  Those original handles are just too short!  The compact stroller is good for taking on the train and keeps her from getting too tired from walking.umbrella stroller modification-001Today was my day with her and the stuff hit the fan.  I got into trouble for feeding her in the same manner that she is fed during therapy as I could screw it up.  At her first of 3 meals she was introduced to eggs with a little cheese.  She spit it out every time and started chucking her toys across the room, yet it wasn’t that bad.

Prior to 2nd meal Mr. P. asked if they could use her iPad as incentive and I agreed.  Big mistake.  I was gone for maybe 5 minutes to heat up my lunch.  We are not allowed to eat in front of her as it is cruel, so that means when she eats we eat behind the two way mirror as we observe the session.  When I entered the observation room, this was happening.

What the what?!  She is not supposed to know that we watch her sessions so I couldn’t rush in and comfort her or pick her up and run away.  So I watched her as my own lunch got cold and she melted the.heck.down.

I am a parent.  I am not a feeding therapist so this is my layman’s understanding of the protocol.  I understand why they do what they do, but it does not make it any easier to watch.  The rules, which are stated at the start of every session are simple and clear.  Eat and you get to play.  Don’t eat and I will need to help you.  Still don’t eat and you won’t get to play.

When sessions go badly, as they did for the duration of this meal and the last meal, they will not alter protocol.  She could be having a bad day or not feeling well, so they want to give her the benefit of the doubt.  They also want to show her consistency.  However, the psychologist sat with me for 3rd meal and we had the talk.  She gets one more meal with this protocol.  If she continues to refuse food, in order to continue the program we will need to give permission to add a helper to block (hands, turning away) so that the feeding therapist can get the food to her mouth.

(sigh)

It wasn’t even the food that set her off in meal #2.  It was using her iPad as incentive.  She melted down when she had to take a break from it for the first bite and could not pull herself out of it.  After meal #2 we checked into one of the hospital resource center’s sleeping rooms for a nap.  (Now I can say I stayed in a room you order by the hour. ha!)  The volunteers gave her a choice of a stuffed animal to keep and she selected a pig with wings.

pigs fly-001 (waiting for the train)  “So you want me to eat eggs?  When pigs fly!!!”

When it was time to get up she was grumpy and was in meltdown before we even started the last session.  It wasn’t about the food, but she refused every bite.  Remember, the video above is less than 2 minutes and each feeding session is about 30 minutes.  It feels much longer. 

So, looking for silver linings…

1. We are blessed to live here and have access (fully paid by insurance) to this program which is run by experts who know what they are doing.  We have to remember that and trust them when sessions get hard. 

2. We are blessed that Sophie’s siblings are having such fun in Iowa and are getting to know their cousins well.  Their grandparents are spoiling them and we know they are in capable and loving hands.  Sophie talks about them and asks us to take her to Baba’s house (Grandma Paula) every day.

3. On my morning off yesterday I got a mani/pedi and dropped off a load of stuff to the thrift store.  Mark and I are de-stuffing our Oreo (ala Amy Armstrong), and decluttering our home feels great. 

4. Many friends have been signing up to feed us!  We haven’t cooked in a days (which is a huge blessing).  Thank you to my boss/mentor/friend Diane for coordinating this and to all you lovely friends who have signed up (Mara, Sue, Mariah, Nancy).  Sophie’s program makes for long and exhausting days so we REALLY appreciate it y’all!

5. On Friday we have our fabulous sitter because we have tickets for the Cherry Poppin’ Daddies (one of our favorite bands from way back) at the Sellersville Theater.

6.  Mark is on sabbatical until January which allows him to focus on Sophie and finish going through his latest book’s copy edits and indexing.

7.  My job is part-time and my boss is amazing.  I’m setting my own schedule which changes from day to day. 

8.  Lastly, we share the cutest pair of feral bunnies with our neighbors.  They’ve been hanging around our back yards since Spring.  Mark calls them Lounge bunnies.  It’s not possible to be upset when we come home to see our friends.

lounge bunnies-001We have 2.5 weeks left of the feeding program and we will take it day by day.  We are grateful and are moving forward.