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

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. 

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.

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.

Darth Vader & a very brave young Jedi

We are exactly where we are supposed to be.

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.Today 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.

(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.

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

Feeding School

Sometimes kids don’t eat.  I’m not referring to picky eaters who hate lima beans. (Doesn’t everyone?)  I’m talking about kids that for one reason or another have serious eating problems not caused by lax parenting or strong wills.  Some kids require being fed through a g-tube.  Others like Sophie and Alexander start out eating a wider variety of foods only to narrow their preferences down and then subsist on these same few foods every.single.day.

Sophie and Alexander both eat a small variety of crackers and chips.  Sophie’s favorite is baby goldfish crackers from Pepperidge Farm, (must be baby goldfish as she gags on the regular size), but no broken crackers.  Alexander prefers BBQ Pringles.  They both love popcorn and chocolate milk, though Alexander must have his slightly warmed up.  Cold drinks bother him.  They also both refuse nearly all fruits, vegetables, and meats.  The only exceptions I can think of are the smooth fruit medleys that come in squeezable pouches that Sophie occasionally eats.  We call them squeezies.  Alexander will eat hotdogs or chicken McNuggets (must be McNuggets) from time to time, but mostly he eats peanut butter sandwiches (no jelly) on wheat with the crusts cut off.  He doesn’t like meat now that he knows it comes from animals and complains that it makes his tongue feel funny.

Sophie had her first appointment with the children’s hospital Feeding and Swallowing specialists in September of 2012.  Yada yada yada, it’s now August 2013.  Alexander and Helena are enjoying an extended visit with the family in Iowa so that Mark and I can focus on Sophie.  She began an intensive outpatient program at the children’s hospital on Tuesday, 8/6.  For the month, Monday through Friday from 9am-5pm we will be at the Day hospital participating in the feeding program.  We hope that Sophie can learn to eat and that we can learn how to help Alexander as well. 

Sophie is allowed only 4 ounces of chocolate milk in the morning at home.  Then at 10am, 1pm, and 4pm she is with a feeding therapist while we watch behind a two way mirror.  During week 4 Mark and I will begin training to feed her ourselves.  In the evenings at home she can eat anything as long as we log it and she must drink a specific amount of liquids.  The plan is extremely regimented, time consuming, and exhausting.  It is also extremely successful.

Tuesday was Day 1.  The lead feeding therapist (we’ll call him P.)  and I observed as Mark attempted to feed Sophie.  This gave P. an insight into her food avoidance behaviors.  The rest of the day was mostly meet and greet with tours, a session (for us as parents) with the psychologist, a vitals check and physical exam.  Soph will be weighed weekly and her calorie requirements while at home adjusted based on her consumption at the hospital.  Her team consists of a lead feeding therapist, a team of feeding therapists, a social worker, psychologist, nutritionist, physician, an occupational therapist, and medical and psychology students.

On Day 2 P.  introduced the rules to Sophie, which are pretty simple.  Eat your bite = get to play with your preferred toys and receive praise.  Don’t eat = you will be helped to eat.  Keep rejecting food = no play.  There’s more to it of course, but it focuses on lots of praise for compliance while ignoring noncompliance at first.  If noncompliance continues, then they might use hand over hand to get the food in.  If that doesn’t work, then blocking her hands or even techniques to open her mouth may be used.  All of these techniques are discussed with us before they are implemented.  It is hard work for our little girl.

Her meals consist of a few different foods that are in Styrofoam cups off to the side of the therapist.  She is presented only one bite at a time so that she is not overwhelmed by the sight of the entire meal.  Sometimes the spoon or fork will have food on it and presented on a plate.  This minimizes the work she has to do so she can focus on eating.  Other times she must get the bite from the plate to the utensil herself.  A lot goes into good wrist movement, hand control, and coordination.  Sophie still struggles with this. 

For the first few days Sophie was presented her preferred foods.  She was given her favorite toys and bubbles when she complied.  This allowed the therapists to earn her trust.  Then, slowly, food she used to eat but has lately refused (such as macaroni and cheese & hotdogs) were added.  To our shock and great happiness, she complied easily.  Today is the last day of week 1 and my first day alone with her without Mark.  He prefers to drive into the city despite the heavy traffic.  I prefer the trains, so off we went!  I appreciated so much the kindness of strangers who held doors, carried our bags, and engaged her in conversations. 

At her first feeding P. introduced bananas, which is something she has NEVER eaten.  She ate the first bite and I fell off my chair.  Then it got real.

These are only a few of Soph’s avoidance techniques.

She successfully avoided or spit out pieces of banana many times during meals 1-2.  The bites got smaller and smaller and P. mushed them up to the consistency of pudding to make it as easy to eat as possible.  The first time he took her toys away she did not cry, but she was shocked.  She didn’t say a word but she looked at him as if to say, “What the heck is going on here?”  At this point, if a bite got in regardless if she spit it out, she was praised and the spitting was ignored.

Using her IEP as a guide, Sophie will have two hours of OT/week.  I watched this morning as the OT sprayed shaving cream over a foam alphabet.  As I could have predicted, when presented with it, Soph flipped it over.  She does NOT like getting her hands dirty.  They moved from the picnic table to the floor and tried again.  Sophie resisted at first but eventually used her fingers to push out the messy letters, one by one.  Her OT is challenging her to work through her sensory issues.

By her last meal with a therapist for the week, Soph showed remarkable improvement towards accepting the first new food.  As the bites of banana went in easily, they got bigger and bigger.

The first bite (above) was banana.  Her only trouble was handling the spoon.  SHE’S EATING BANANA!!!  This was followed by play and a bite of mac-n-cheese.  We are exhausted and happy.

Summer Wind

Mark’s paternal grandmother Margaret went to bed as usual on Friday, July 19th.  My birthday.  Sometime in the night she crossed over, warm in her bed.  Though she was 92 her passing took us all by surprise.  She had been doing so well.  It was exactly the way she wanted to pass.  She told us so.  Can you imagine, one moment here and the next – gone?  We should all have such a sweet sending off.

Our hearts and thoughts have been in Iowa since we got the news.  In an effort to celebrate life and recharge our batteries, we headed off for a day at the Shore.  Ocean City, NJ never disappoints. 

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In the coming weeks we will make the 18 hour drive to Iowa.  We will attend Mark’s 20th high school reunion, visit with family and friends, and then Alexander and Helena will stay in Iowa for a long visit when we return.  Sophie will enter an intensive feeding program at the children’s hospital from 8am-5pm, Monday – Friday for the entire month of August to train her to eat.  Sophie and either Mark or I will be at the hospital for the duration. 

We are in the midst of grief and apprehension, yet all we can do is move forward.  We boogie board.  We body surf.  We build sand castles and work so hard to create memories filled with joy for our children.

Wood Rot & Carpenter Bees

When we bought our home two years ago we didn’t have rotten wooden window frames, or so we thought.  Being from the midwest, we were unfamiliar with the damage that carpenter bees can do on fascia boards.  We would quickly learn about both.

When a part of a window frame swung off the house this spring, we knew we had a problem.  When we were bombarded by low flying Cessnas (dang loud, dumb carpenter bees) and had to avoid their falling larva from the roof (yuck), we took a close look and found that they had pretty much destroyed a number of boards at the roof line by drilling holes for their nests.

Grumble, grumble.  After taking a few bids, we settled on a company called PJ Fitzpatrick to help us.  We would need the rotten wood replaced, new gutters, soffits and fascia which would be capped (but with wood grain design) to prevent the dang bees from being able to nest and to protect the wood from rotting again.  This type of work is way above our skill level so we were happy to let the experts have at it.  Frankly having professionals help us makes me feel like I’m actually a grown up.  Weird, I know.

They finished at 5pm today, just in time for us to set up for our 4th of July party.  They got the job done in two days and spent much of it working in the rain.  The crew of hunky Russian guys were skilled, polite, cleaned up after themselves, and I highly recommend them.  I sent them home with goodie bags of left over candy from Sophie’s 6th Candyland theme birthday party (which will be another post as soon as I get more pictures from the other parents).

So before I put up our decorations for the party, I decided to quick post the before and after shots.  The transformation is amazing and better yet, Mark should have no reason to be on the roof spraying the dang bees!  Peace of mind, baby.

BEFORE

*basement and 2nd floor windows had horrible wood rot unrelated to the dang bees.  Look at the damage the dang bees did to the wood!

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AFTER

So pretty!

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Ladies Who Lunch

Helena, (A.K.A. the Schmoog or Schmoogie) and I had a great day together.  It started in court for my hearing to contest two tickets related to our annual van inspection and emissions certification.  She was great and charmed the police officer that we worked with.  We won our appeal!

After our brief court appearance, we decided to hit up our favorite thrift stores.  Mark, myself, and Helena love thrifting.  To us it is a treasure hunt and an adventure.  It’s not wise to head out with a particular item in mind, but rather a “let’s see what they’ve got today,” attitude. 

Helena and I like to peruse the toys, jewelry (pins/brochures in particular), hats, books, and antique furniture.  I also love to find the exceptionally strange or unique items that pop up from time to time.

After a quick deposit at the bank between thrift stores, I decided to take us out to eat for lunch.  No place would suffice except our favorite Indian cuisine restaurant, Ekta.  If you know our family, you understand that Sophie and Alexander have very limited foods that they will eat.  Mark, while he has expanded his palate considerably in the last decade, is still a mid-western meat and potatoes guy.  Schmoog, however, enjoys a wide variety of food.

As we waited at our table by the window, she breathed deeply and listened closely to the music.  She exclaimed her joy with the rhythm and declared that the instrumental songs must be about Jesus.  I marvel at the way her mind works.  The smell overwhelmed her and she became patiently impatient for our meal. We started with vegetable samosas with mint and tamarind chutney. 

Then, we split basil naan, basmati rice with chicken tikka masala and saag aur paneer.  “MmmmMMMmm,” she declared over and over.  We stuffed our bellies and she delighted over a simple slice of orange.  Enough was left over for 2 more meals.  Yum.  As we ate we started getting texts, fb posts, and phone calls about the tragic building collapse in Philly.  A building adjacent to the Salvation Army Thrift Store collapsed and trapped a number of people.  I had recently posted on fb that we were thrifting and people were worried.  Have I mentioned lately how much we love that we are loved?

Logy (loooo-g-E means happily stuffed) after our feast, I thought we should head home for a nap.  Instead Schmoogie asked (repeatedly) to go to a candy store.  So we did.  On the drive home she munched on Swedish fish and I on a dark chocolate covered graham cracker.  Then we snuggled and napped.  We needed this kind of low key day. 

I watched the 11pm news conference that night with Major Nutter about the building collapse who said, “We are a pretty tough city and we are quite resilient.”  Nonetheless our prayers go out to those who are seriously injured or who lost loved ones.