Maria Deysi's Story...

MARIA DEYSI'S STORY...

Maria Deysi Aguilar was born on March 15th, 2003, in Okinawa, Bolivia (in the department, or state, of Santa Cruz). She is her mother's third child and only girl. When she was three months old, her mother left their dwelling (a wooden structure with a tarp roof) to look for food, leaving Deysi and her two older brothers alone. As it was a cold night, she had left the embers of their cooking fire burning. A stray spark made it up to the tarp, which caught fire and began to melt and drip onto the dirt floor of their home, where Deysi was sleeping, wrapped in a blanket. The only exposed parts of her body (her face and hands) were severely burned by the burning, liquid plastic of the tarp. By the grace of God, Deysi and her mother made it to the city of Santa Cruz (a two-hour drive) and Deysi spent four months in the burn center at the city's childrens hospital. After two skin grafts and many weeks of painful recovery, she was finally released, but after realizing that she was unable to adequately care for her daughter, Deysi's mother chose to place her in the girls orphanage "Hogar Sagrado Corazon" (Sacred Heart Home) in Montero, shortly before Deysi's second birthday.

How is she now?

HOW IS SHE NOW?

Deysi is now 10 years old and will start fifth grade in March. She still lives in the childrens home "Hogar Sagrado Corazon" and is well loved by all. She has a sweet disposition and a quick, easy smile. She is doing well in school and is a hard worker, not easily frustrated and generally well behaved. She has been blessed by more frequent visits from her mother and brothers recently and continues to rekindle the bond that she has with them.

Her skin is completely healed (and has been for some time now) but the effects of the burn are still very noticeable. Deysi has never been self-conscious about her differences, but is approaching an age where those differences will start to matter more. In 2014, thanks to the generosity of Shriner's Children’s Hospital in Boston, and the skill and dedication of their professionals, she has undergone a second surgical procedure (on January 27th). This most recent surgery removed the nail bed of the thickened fingernail on her left hand and grafted skin from her leg onto the back of her left hand, allowing more movement in her fingers and replacing a portion of the scarred skin with her own healthy skin. She has also undergone the first of a series of laser procedures to gradually lighten the areas of (darker) grafted skin on her face. We are so grateful to Shriner's Hospital and to all those who have contributed to allow this second trip to become a reality!

Sunday, March 9, 2014

There and back again

So...

We loved staying with Jill and Ben and their family, and will be back there again Monday - Wednesday of the coming week...
Deysi with Ryan, their newest addition

Deysi, Avery and Connor

A giant game of connect four!

Playing with a new friend

We also visited the sisters in Cresson, PA, and had a lovely, though short, visit.  Mother General (superior of all the SSCJ sisters in the world!) was visiting from Poland, and we were able to spend some time with her and her secretary, Sr. Sebastiana.

Deysi playing Bingo! with the residents of our home for the elderly, the John Paul II Manor

(l-r: me, Sr. Sebastiana, Mother General, Deysi, Sr. Frances Claire, Sr. Miriam Joseph and Sr. Margaret Mary)

Love.

With Sr. Maria and our novices

With Dusty, guardian of our novitiate

In front of our novitiate

Thanks for the donuts, Sr. Claudiana!

You might notice that in the first pictures she is still sporting the hand brace, but the more recent ones show off her new (blue!) pressure glove, which she really loves.  Which is good, because she'll be wearing it for the next 6 months!

Saturday, March 1, 2014

Back in Boston and PT

We had our appointment with the surgeon on Wednesday and he was...less than pleased with Deysi's range of motion and flexibility in her left hand (the one with the skin graft).  So...we're up in Winchester and enjoying some extended visiting time with our dear friends the Blacks, who are kindly putting us up as we are introduced to the new and not-so-fun, but really not-so-terrible, world of physical therapy.

Deysi is absolutely loving everything about this particular trip: Jill and Ben, their three adorable kids, their two fun-loving dogs, the Science Museum...everything, that is, except the physical therapy, which is why we are here for so many days in a row in the first place!  But it gets a little better every day, as her hand gets used to being used again, and we are scheduled for our last visit on Tuesday, which is AFTER the big snow storm set to fly up the east coast AGAIN on Monday (whew!).

We were able to make another brief stop at Tufts University, my alma mater, for a delicious lunch with my thesis advisor, Prof. Jan Pechenik.  On our way to Boston Ave., we stopped by the newly-installed medallion celebrating the Jackson Jills 50th Anniversary (I sang with the Jills in college, as did, appropriately enough, our lovely hostess Jill!).




We have now also confirmed our flights back to Bolivia: we leave Philly on the 17th and arrive on the 18th in the afternoon.  Between now and then: many last visits with loved ones, one or two more trips to Boston, a new pressure glove to be worn from now through August (!) and...someone's 11th birthday!

Sunday, February 23, 2014

A bit of sunny weather

We were getting a little tired of this...

(and so were Mary and the three Fatima shepherds, apparently!)

...but by the time we were done with getting the stitches out in Boston (and playing the ever-interesting video games in the clinic lobby)... 

...and had enjoyed the Boston Science Museum...
 

...we drove home to Princeton and got some of this: 



ahhh...

And then last night we were invited to "Never, Never Land" for a very special birthday for an adorable one-year-old Peter Pan named Grant.  (The Laffertys, baby Grant's family, who are such wonderful friends to us and to all of our girls in Bolivia...and boy do they know how to throw a party!) 


Deysi's hand is looking a little better every day (and we can actually see it now because we can remove this new splint when she showers!  hooray!).  We go back to Shriners on Tuesday for a Wednesday afternoon appointment; we'll see how we score on the "caring for a skin graft" scale and what they say the next step will be for her hand.  Meanwhile, a very special little girl named Avery is going to be turning 5 on Tuesday and we get to help her celebrate!  We seem to be turning into party animals...and enjoying it thoroughly! 

Tuesday, February 18, 2014

Princeton...and then Boston, take two.

So...we've been back in Princeton for quite a while now.  Deysi has been recovering nicely and the graft site on the back of her thigh is pretty much totally healed.  She can shower with the help of a plastic bag and an extra set of hands, and can almost dress herself.  Her face is also almost totally healed, though we are continuing to slather it with Vaseline, per doctor's orders, just in case (hence the headband in every picture--it keeps her bangs from turning into a greasy mess).  

Our days have looked a lot like this:



(snow, ice, indoor activities, repeat)

But it does mean we're getting a lot of school work done! 

We had a lovely visit from Melia West, Deysi's baptismal godmother and a former Hogar volunteer, who flew all the way from California to visit!  

snowballs into the Delaware Raritan canal

two beautiful faces

gift shop at the New Jersey Aquarium--the most interesting part was the prank section--
don't ask about the squirty rings or the disappearing ink!

nun...attacked by shark...head first

beautiful...

...and very silly!

We are now back in Boston for stitches removal (tomorrow at 11am).  We came up a day early to avoid being caught in the snow (again) and are currently watching the flakes fall from inside our warm, comfy hotel room (instead of from inside the car, thank Goodness!).  We are hoping that the size of her bandage will at least be a bit smaller (perhaps allowing long-sleeved shirt sleeves on?) and that we will be heading back to Princeton on Thursday at the latest.



Sunday, February 2, 2014

We made it!

Just in time for the Superbowl. :)

Leaving a day early...

...to try to beat the storm that's set to hit the east coast on Monday.  I certainly don't want a repeat of our 12 hour odyssey up here!  Hope to be in Princeton by this evening.  Chau!

Saturday, February 1, 2014

A few photos

Now that she's feeling much better and we can get out more, here are a few photos of the last few days.

The night before the surgery, watching Free Willy

The view from our room at the hospital

First trip outside (yesterday) to get lunch across the street
  
Big trip (today) to Walmart

Owl (!!) in the Walmart parking lot

As you can see, her face is still much darker than it was prior to the surgery, but we are looking forward to the long-term results, which are supposed to be quite good (but can take a while to be noticeable).  She is still not totally comfortable sitting (in the car or anywhere else), but the fact that she was fine riding to and from Walmart today (about 20 minutes each way) makes me feel much better about our upcoming trip home to Princeton on Monday.

We're still resting a lot of the time, but short trips outside do a world of good for morale (both hers and mine!).

Friday, January 31, 2014

Staying a bit longer...

Although Deysi's recovery is going very well, she is still in a good deal of pain from the graft donor site (on the back of her thigh), and we have decided to prolong our stay here in Boston through Monday.  Because of the location of the donor site, walking and sitting in chairs is particularly uncomfortable, but each day the site gets a little better and we get a little braver.  Today was a banner day in that we got outside twice and were able to walk a total of almost 5 blocks!  Pizza for lunch is a good motivator, apparently.

Tomorrow we have a trip to Walmart planned--we need a few supplies, perhaps a couple new DVDs from the sale bin (in Spanish, of course!) and a few tee-shirts, as I hadn't taken into account the fact that we wouldn't be able to get her into any of her long-sleeved ones because of the splint.  We are currently using tee-shirts and a modified sweatshirt on top (with the left sleeve opened up to above the elbow and a snap added to make it look a bit less like a pirate's costume!).  Between that and (hopefully) getting to midday Mass, tomorrow will be our most active day yet.

We're both so grateful for her continued improvement and for all the prayers going up on her behalf.    

Wednesday, January 29, 2014

All is well

We are done!  We are back in the hotel resting and grateful to not be in the hospital (though the doctors and nurses at Shriners certainly couldn't have done a better job of taking care of us).

The surgery lasted four and a half hours (!!) and was quite a bit more complicated than I had anticipated. Our surgeon did mention that he would see about a skin graft for her hand once in the OR, and he did in fact deem one necessary--I'm guessing that was the reason behind the long surgery time.  She had the graft taken from the back of her left thigh and it is the size of a large bookmark.  Everyone tells us that this will be what will hurt the most, but that it will dry out and heal within about a week--since the former has certainly proved to be true, I am hoping that the latter does as well.  The donor site has a sort of "fake skin" type patch on it but is otherwise unbandaged and we are required to keep it open to the air to help it to dry out as quickly as possible.  Her left hand is in a very large splint with a hard base and mounds of gauze wrapped around it almost up to her elbow, all in an effort to protect the skin graft and stitches on the back of the hand, in between her second, third and fourth fingers, and around the nail bed of her ring finger.  That all LOOKS worse to me, but she is very sure that what really bothers her is the leg (graft donor site).  Her face at this point doesn't bother her much, though it was painful for the first few hours after surgery (she had a laser treatment done on the scarring on her face) and though it looks quite dark and splotchy now, the effect will surely be good in the long run.

She did have a hard time coming out of surgery--she was (obviously) very disoriented and was quite...active (as the lovely attending nurse, who was so very patient, put it)--she managed to undo the bandage on her donor site within an hour of coming out of the OR, garnering her the nickname "Houdini" and causing some consternation for those that had to re-wrap her!  Once we got down to our room she had calmed considerably and, though she did have a bout of nausea once she started to really wake up from the anesthesia, our wonderful nurse was able to give her just the right amount of Benedryl to get her past it and into a nice, deep sleep for the night.

Today she started to feel much better once she was able to eat and drink, and we were able to leave the hospital after lunch.  Getting from the 7th floor, down to the parking garage (one level below ground), into the car, out of the car and up to the 3rd floor of the hotel with all our many belongings proved to be a bit tricky, but I just got her comfortable wherever that was possible and then made as many trips as it took.  We spent the afternoon resting and watching a movie (her) and doing some laundry and trying to figure out what to have for dinner (me).  We managed both fairly well.

Once things are a bit less painful and we start to venture out (and once she can be fully dressed most of the time!!) I will post a few pictures.  We really are well and so grateful to all those who have prayed for her and helped us to get this far.  Do keep those prayers coming for a speedy recovery--a Deysi who stays where you put her is a strange and unnatural thing, and we are both ready to have her back to normal as soon as possible!

Saturday, January 25, 2014

Adventures in Boston and...Medford!

We've been trying to take advantage of our free time before the big day, filling our days with some fun and keeping our minds and bodies busy!

We took a trip to the New England Aquarium on Friday and enjoyed it even more than last time, if that's possible!  We got to see the penguins getting fed and the harbor seals getting trained and two divers move around the huge central tank.


The tropical tanks



The photo with the dolphin statue...check out the one from last time (below)--how she's grown!

(2011)


Today (Saturday) we had lunch at Faneuil Hall with Angelica Rojas, who lived at Hogar Sagrado Corazon for a number of years when she was younger, and now lives in the Boston area.  She did a few months as a volunteer at the Hogar recently, and it was so nice to catch up with her!  
She went with us to a Tufts Ladies Basketball game on campus (in Medford) and the Jumbos trounced the Bates women, remaining undefeated so far this season!

Go Jumbos!

Angelica and Deysi after the game

We were able to sneak up to the Jills room, but didn't catch them practicing.
(I sang with the Jills, a female a cappella group, while at Tufts) .

And we took the mandatory photo on the President's Steps


We made our way to Sacred Heart Church in Cambridge for the evening mass.  It was beautiful and the faithful were wonderfully welcoming--the priest, choir and all those attending even came right over to the bench where we were sitting to pray for and with us during the homily!


Our Lord revealing His Sacred Heart to St. Margaret Mary


Now we're back in our room, resting and watching The Land Before Time.  We'll take it slow tomorrow, only venturing out for Sunday Mass at the same church at 11:00am.  We cherish your prayers and will post again once the surgery is over and we are back in our hotel room, as we cannot access the internet easily while in the hospital.  There is some question as to whether or not we will be spending the night in the hospital on Monday--all depends on how Deysi does in the hours after the surgery.  All is in God's loving hands and we are at peace knowing that He knows best.

Wednesday, January 22, 2014

Boston

We left ourselves a full day to travel to Boston, leaving Princeton around 10am on Monday...little did we know that we would actually need all of it--we traveled WITH the nasty snow storm all the way up the east coast! 12 hours and many prayers later, we arrived safely in Beantown, so very glad to have a warm place to sleep and to not have to be in the car for a while.  We are staying at the Constitution Inn, a YMCA affiliated hotel near the USS Constitution dock, that has a much lower rate for Shriner's patients and their families and a free shuttle bus to and from the hospital.  We do miss hanging out with Donna, Willy and Miles in Arlington, though!   No pictures of our trip--just imagine a snow globe with us in the middle.  That about sums it up.

Today we had our meeting with Dr. Donelan, Deysi's surgeon.  This was the big, potentially game-changing hour we had been waiting for, but there weren't too many surprises.  Dr. Donelan is as wonderful as ever, which is sort of a given, since he's a Jumbo (which is a Tufts grad, for all you non-jumbos out there).  The rest of the staff was equally fabulous and it was great to see everyone.  His plan is to work on Deysi's hand on Monday, removing the nail on her ring finger and making it so that a new nail can re-grow itself from that nail bed (amazing!).  He will also make a small incision between each of her four fingers to allow her more freedom of movement and flexibility.  Finally, he will also be starting a series of laser treatments on her face that will, over time, lighten the tone of the grafted sites.  If we like what we see, he will try to squeeze another of these laser treatments in before we leave in March.

He was in and out in a flash and there wasn't any time to snap a photo, but I am determined to get at least one of him this time around.  Maybe next week.

We see the nurse practitioner tomorrow and then have "off" until the day of the surgery, which is Monday. The best news of all today is that it will be an outpatient surgery--we'll go in in the early morning and be discharged as soon as she's up and feeling good.

After our appointment, we managed to find a Dunkin Donuts (which are so...scarce...in this neck of the woods) and enjoy a treat.

The Second Trip...so far!

Per the request of many dear friends who don't use facebook, I will try to update this blog every so often, especially now that we are in the pre-surgery phase of our journey.

So...what have we been up to since we got here in mid-December?

Enjoying the weather...

Deysi and my mom (Jane)

Advent wreath preparation


Snowy day fun



Visiting dear friends...

My great buddy Sarah Liane Foster, who taught us how to play "hot dice"

Our dear friends and benefactors from Prospect United Methodist Church in North Carolina

Deysi's sponsors (padrinos) Carolyn and Robert Deese who lovingly received us in their home in North Carolina

Carmen Deese (Carolyn and Robert's daughter)

Visiting the Franklin Institute with Mr. and Mrs. Baker, Natalie's parents 
(Natalie is one of our current Hogar volunteers!)

John and Therese Sheehan ("Tio John" and "Tia Theresa"), our dear St. Pauls pals


Celebrating Christmas...

cookie-making

present-opening

St. Pauls on Christmas day

Chocolate Santas from Tia Theresa and Tio John!


Working hard and helping out...

The vacuum really is a pretty amazing thing

Getting ready to dig out the car!


...and generally having a good time!