image
image
image

Diaworseh Duopu Status Update


 

April 15th  2014

To donors and support team,

Diaworseh is still doing well in her school, International Light School, web site: http://LightSchool.net. We speak with her or Georgette, her caregiver, every week and sometimes her lively sister, "Sugar". From time to time, I call her teacher, Ms Jeroline Wright, to check in. She gives Diaworseh good reports. I spoke to her grandfather, Bernard, last week.

Diaworseh's progress continues, and she is thriving. Not only has she stopped using crutches, but recently stopped using AFOs (ankle-foot orthotics) and is now wearing regular shoes to school--remember the little crippled girl; isn't it wonderful? Thanks to you all for helping make this happen!

Diaworseh is gregarious and socializes with friends in the neighborhood. She tells me she has friends at school. She is able to make her way to school on her own. Also, while her speech is still affected by CP, it has cleared up nicely, and her English is now fluent. We are able to understand her on the phone. She helps with household chores. Diaworseh still has a good sense of humor and sometimes "pulls our leg" over the phone. She remains strong minded and a teenage girl - all the positive and negative that implies, e.g., sleeps in late, argues, charms people. She is still independent and recently cut her hair to a short do because she was tired of keeping it neat. All-in-all seemingly from our perspective, a normal, healthy, happy young lady. We miss her a lot.

We are very grateful to Georgette who is now Diaworseh's surrogate mother. She is a single parent to two young girls for the first time, of course. Being an experienced first-grade teacher, she has some child management skills, but sometimes she and Marsha have extended conversations over the phone discussing child rearing strategies. Oh, the trials of teenage girls! If you remember the story, it was a "miracle" that we found Georgette. She and the girls live in a small two-bedroom apartment that we rent for them. We continue to provide money for Diaworseh's food and clothing. One donor couple paid for Diaworseh's tuition for the past two years at the International Light School, a private school. WOW!

Last year, the US Embassy denied her, Georgette and Sugar visas, so they did not visit as planned. If the mountain won't come to Mohammed, Mohammed will go to the mountain. Marsha and I have changed our plans to visit her and now intend to visit her in Liberia later this year after we return from our bicycle tour across the USA.

It seems to me that each of you is interested in hearing of Diaworseh from time to time. Thank you for your continued interest. If you have particular questions or thoughts, Marsha and I will be pleased to respond.

 

September 12th  2012

On Monday September 10th, Diaworseh Duopu started school at The Light International School located in Sinkor, a suburb of Monrovia. See websites listed below:

http://lightschool.net/index.html
http://www.panoramio.com/photo/19945226.
http://www.news.heritageliberia.net/index.php/inside-heritage/general-news/447-liberian-turkish-light-int-l-school-opens-dialogue-center-soon

Diaworseh has been in summer school since June, as well as tutoring by her caregiver, and has passed from kindergarten level through first grade. She has been placed in second grade. She lives with Georgette Diggs, a first-grade teacher who is both her tutor and caregiver. Diaworseh is thriving well and is happy. We talk to them almost every day.

Georgette is a single parent with a ten-year-old daughter, Sugar. Diaworseh and Sugar share a room and have become like sisters. Georgette is a diligent and detail person who is both firm and caring. She teaches first grade at the Bridge of Hope school in Mahtaddy. See the Bridge of Hope School website: http://www.bridgeofhopegirlsschool.org/wordpress/?page_id=9. It was at this school where we met Georgette while interviewing them for possible attendance by Diaworseh. We were very impressed by Georgette's comments and answers to our questions. We continue to be very impressed with her. Diaworseh was accepted there, but we settled on the Light School.

We have rented a two-bedroom apartment for them in Mahtaddy, a community near Diaworseh's school.

Also attached is a copy of a Monrovia newspaper article on the Diaworseh project.

We welcome comments and questions. Thank you all for your support and help!

Brian

PS: We welcome further contributions to the Diaworseh Duopu Trust (irrevocable). For information on donations to the trust and details on Diaworseh's story, visit our website, www.HelpLiberianTeen.com.

 

July 25th  2012



Diaworseh was returned to her family in a large ceremony in Duopu Village that included dancing, singing, speeches, and hugs. Diaworseh walked to the crowd's applause. She gave a short but eloquent speech in English then sang a song in her native language, Geo, which translated says, "God has given me an unexpected blessing."

For details (PDF) on Diaworseh's return to Liberia follow this link.



June 13th  2012

All donors and Diaworseh Team:

Yesterday, Diaworseh after finishing climbing to the top of the jungle jim, walked all the way back to our apartment from the Portland school playground without crutches; it is over two-tenths of a mile. She was very pleased with herself. I was walking along beside her, spotting, which turned out to be unnecessary. It was trash day, so as we arrived at our apartment, I jokingly threw the crutches on the trash. Well, she thought that was so funny, she "fell" laughing. Her sense of humor is outstanding. We laughed together for some time.

Diaworseh has revisited each of her doctors one last time and been given a clean bill of health. Her hearing improvement resulting from surgery is beyond that expected. And her teeth have been repaired, including a root canal and to crowns. Our last visit to Shriners for physical therapy is tomorrow, Thursday. She has many friends there. With the help of a Shriners child life specialist, Diaworseh has made a photo album of favorite pictures of her stay here in the USA.

Diaworseh was "under socialized" and somewhat immature when she arrived. Her English was minimal. While still somewhat difficult to understand sometimes, probably because of her CP speech involvement, today, she is fluent in English. She is maturing daily, much less frequently acting below her age level of seventeen. Yesterday, at the dentist's office, she withstood hours in the chair without compliant. She is learning to stand and face people, looking them in the eye as she addresses them. She insists that medical professionals address her rather than and not me when asking questions. She's tough, brave, and intelligent.

Marsha, Marthalene Grupee, Diaworseh, and I leave for Liberia on Sunday, June 17. While there, Marsha, Marthalene, our friends there, and I will look to place her in a safe, reputable boarding mission school.

All of us as a team, including Diaworseh, have made these beneficial changes possible. Thanks to all!

Brian & Marsha

PS: You have seen the photos of her feet, "before," note the manicure and pedicure and her feet, "after." She is very pleased with her new ability to be mobile and upright, especially the look of her feet, which I sometimes notice her staring at.

 

May 15th  2012

Diaworseh is rapidly gaining ability to walk. The walker has been retired; she is now using Lofstrand crutches and only requires a wheelchair for long distances, e.g., between hospitals on the MGH campus or in malls. Orthopedic surgery is finished, and Shriners is providing physical therapy. We have one more visit scheduled with the orthopedic surgeon before return to Liberia. Physical therapy includes electric stimulus of her lower-leg muscles to help get them stronger and make new “connections” with her brain, i.e., “Yup, I am really here ready at long last to be used.”

The MEEI audiologist tests yesterday indicate that she has regained hearing in her right ear from nearly nil to nearly normal levels! Dr. Cohen, the larynganologist (sp?) surgeon of MEEI, is very pleased with his exam and audiologist tests outcome. He suggests one more pre-departure visit in about four weeks.

Diaworseh has one more dental appointment to cap the root canal on her right, lower six-year-old molar. Work on the other molar is complete.

She has anxiety regarding return to Liberia, mostly around her safety, stability, and living circumstances. She is visiting a child psychologist at Shriners to help her with protecting herself. One of the therapies in progress is to assemble an album of photos and memorabilia to form the basis of relating her story to friends and relatives in Liberia.

Marsha and I are helping her to be more mature and more in control of her life, as is appropriate for a seventeen-year-old. As she has matured an enormous amount and because she will be standing face-to-face with others, she will be challenged to be perceived as a young adult by those who remember her as the crippled child crawling.

We leave for Liberia on Monday, June 18. Marsha and I will be there for three weeks, during which time, we will look for a boarding mission school in which to place her for on-going basic education. We think it best that she not return to her life in the village, at least not yet. She agrees, and we will talk it over with her parents.

While not out of funds, the Trust balance is low. Some donors have voluntarily contributed more to the Trust – Thank you!

And thanks to you all for your interest, concern, and help.

Brian and Marsha

PS: We will be posting recent photos of Diaworseh shooting baskets at PT and walking and playing on the Winterport playground. Oh yes, she is a natural at shooting baskets. Basketball is second only to football (soccer) in Liberia, and I guess her dad plays basketball. He must have built a hoop at home and played it with Diaworseh and her sister. The Shriner physical therapists had to back up and raise the gym hoop twice to a third location before shooting hoops while standing and maintaining balance became a challenge for Diaworseh. Where they had placed it at the first location, she sank the first four in a row. She throws a ball with her left hand, overhand, like an athlete. Last night, during exercises, she did full fledge pushups with the toes of only one foot on the floor. That, and her right arm strength is compromised by CP.

 

May 2nd 2012

Diaworseh got up on Tuesday morning, took a bath, had breakfast, then, without fanfare, went over to the walking stick I made for her and walked from one end of the apartment to the other, about 30 feet without assistance, and then back again. When she reached the end of the apartment, she started to laugh with joy. It was quite a moment.

Diaworseh is courageous. She slept on the idea of the previous night's failure, and she must have developed resolve.

DD had tried the pole the previous evening with Marsha and me spotting. Rather than giving her feeling of security and balance, she couldn't seem to figure it out with her feet as they are now. I was discouraged and concerned that learning to walk again is going to take longer than I thought. She was upset after working with Marsha and me. She started to cry and said that she wanted to walk alone but is afraid of falling. Now, all that is behind us.

Abi Zuo, Geo for "Praise God."

 

April 16th 2012

All:

I have polled all the health care professionals caring for Diaworseh, and all agree that it is reasonable to plan for her return to Liberia in mid June. We have made reservations for Diaworseh, Marthalene, Marsha, and me to fly to Liberia, leaving Boston on Sunday, June 17. Marthalene, Marsha, and I will be returning three weeks later.

Her physical therapists say that Diaworseh will be walking, probably with a cane. Other medical issues that will have been addressed include: 1. The damage to her right ear caused by a long-term infection, 2. Latent TB infection, 3. Parasites, and 4. Two major cavities in molars. In addition, she is now speaking and thinking in English.

The most recent medical issue has been the discovery of two major cavities in her molars. A dentist in Portland, Maine has agreed to perform a root canal and repair the other cavity on a pro bono basis.

With regard to Diaworseh’s return to, and “soft landing” in, Liberia, we are looking into having her placed in a mission school for her education. Marsha and I plan to visit boarding schools with Diaworseh for her placement before we leave Liberia.

Diaworseh is ambivalent about returning. Marsha and I are trying to be sensitive to her concerns and to be sure that they are addressed as best as possible. Along with everything else, Diaworseh is learning her new role as an upright, walking adult 17-year-old. She deserves an important say in planning for her future. Diaworseh now confides in Marsha, and that is an important step to be sure we listen to her concerns and wishes.

In terms of miscellanea, now that Diaworseh is able to stand with both feet flat on the floor, Marsha and I measured her height at 4 ft – 11 in. She weighs about 85 pounds. I think that she may still be growing. She seems taller than that in my mind.

Regarding the Diaworseh Duopu Trust, we have spent all but $5,800, which is the amount left in the account. Marsha and I stopped charging for expenses some time ago. Obviously, we are running short. I am continuing fund raising efforts. We look forward to raising additional funds for her soft landing and schooling, hoping that the generosity of you and others will continue as we change the prospects of this girl’s life from one that was very grim to one of promise, THANKS TO YOU!

Brian Richardson

PS: Whereas it has been our policy to keep identities of donors confidential, I break this policy to mention my friend since high school, engineering school, and beyond, Paul Jones of Amherst. Paul and his spouse, Ruth, have been continuing supporters of Diaworseh. As a Shriner, Paul sponsored Diaworseh for her application to Shriners Hospital for Children – Boston. Paul, a vibrant and active man, died late last year after a brief but devastating illness. As a very close friend and a man who made an important positive difference in my life, I want to honor him and recognize that, without his early and constant support, ideas, and referrals, our project for Diaworseh probably would not have succeeded. Along with his family and many friends, I miss him. Last night, he was in my dreams again.

 

March 29th 2012

Diaworseh is now living with Marsha and me, at least for a while. Diaworseh speaks English quite fluently now, so we can communicate without an interpreter. In fact, she is a bit of a chatterbox. (Everyone is impressed how well she has learned English. Diaworseh is a smart young lady.) It has been fun; she has such a great sense of humor. She remains in close contact with Nana in Lynn -- her name for Marthalene Grupee -- and her biological aunt, Kemah Duopu, who lives in Rhode Island.

Diaworseh had an ear exam a week and a half ago as a follow up to her recent mastoidectomy and graft replacement to her right eardrum – a long-term ear infection had compromised her mastoid bone and destroyed her tympanic membrane ; all is OK so far. The only problem is that the ear doc (larynganologist) would normally want to follow progress for 6 months, but DD will be returning home before then. We are talking about compromise.

DD had a major adjustment to the external fix on her left foot on Tuesday, March 20; she was under general anesthesia and was admitted for overnight at Shriners Hospital to manage pain, etc. All went well, and the foot is in a good position. However, she was in a lot of pain over the weekend while we were in Winterport. I communicated with the nurse practitioner, and she gave us some advice and increased the dosage of Valium, used to control muscle spasms.

On Tuesday, March 27, DD was back at Shriners, and with her under general anesthesia again, the orthopedic surgeon removed the external fix and put her foot in a cast. Everyone is very pleased and impressed with how good both feet now look. We go back next week to have the cast removed and an AFO (ankle-foot orthodox) set up. DD is pleased with how her feet look. Now that the pain is managed, she is like a toddler wanting to walk (using a walker.) Marsha points out that she wants a pedicure. Diaworseh’s major complaint, other than the pain, was that the cast color, purple, was wrong; she wanted yellow. (I think that she has been around Marsha too much. LOL.)

Diaworseh has been complaining of a toothache for a while now. On March 28, I took her to the dentist. She had never been to a dentist before. Her right, lower, six-year molar had a large cavity that, as it turns out, was deep enough to have reached the pulp. The choice was either to pull the tooth or a root canal procedure. Three hours later, we left the dentist with the root canal first phase completed. Today, as I write this update, she is scheduled to have her teeth cleaned and a minor cavity filled. In four weeks or so, she will return for more work on the root canal. Diaworseh went through the ordeal bravely.

She will return to Liberia, fluent in English, and with her teeth, ears, and feet in good shape. Also, her exposure to TB is being addressed, and her course of treatment for that will have been completed.
 

 

March 4th 2012

Diaworseh was in the Mass Eye and Ear Infirmary, pediatric unit in Boston Tuesday through Thursday last week. She is still on hospital restriction until it is confirmed that MRSA is gone, so she couldn't leave the room.

It helps that she loves to draw, color, and do crafts, e.g., beading, collogues, etc. While there, she was working in a notebook that she keeps to practice printing letters and sketches -- she is quite diligent about it. I asked her to draw a person. The result is attached. It is astounding, very like Picasso. Up 'till arrival in the US, it is my guess that she has had very little opportunity to use pencils and paints. She is making up for lost time.

Sometimes -- these two drawings are an example -- we see into an unaffected nature. Later in the day when she had received lots of positive feedback on these drawings, she started trying too hard and later ones do not have the free style. After she had finished them, there were no identifiable hands or feet. I asked here where they were, and she added them later; you will note that the appendages are not in the same free style. If you have ever read Drawing on the Right Side of Your Brain, her drawings have that "right-side" aspect to them. I sometimes draw, and I will work with her to refind that left-brain place of free creativity.

Other insights: DD, (she now has that as nickname -- taken after her initials), is very affectionate to Marsha. Yesterday, as she was hugging Marsha, she ran her fingers through Marsha's hair. She pulled back and said, "Wow, your hair feels good." Oh, and early after her arrival here in the US, I took her to a movie. Now, if you don't think that theater popcorn at the first taste isn't an external as well as internal experience!! She loved it and hoarded the last half of the bag to take it home so that others could realize how good it is.

We saw DD at a funeral in Roxbury yesterday, and she is animated and happy. Her eyebrows keep working in all kinds of ways to reflect her humor. She has a whole host of facial expressions. She was charming everyone at the table. She is doing very well.

The next surgery will be to correct her left foot, and it will be performed at Shriners Hospital for Children - Boston on March 13. I will keep you informed as to how it goes.

Thanks to you all.

Brian & Marsha

 

February 28th 2012

Diaworseh was in surgery from before 10:00 A.M. until just before 3:00 P.M. She is doing well. All the bones of the ear are still intact. The mastoid showed evidence of having had long-term infection and had been damaged. It was removed. A graft was used to replace her tympanic membrane. In addition to being a barrier to future infection when she returns to Liberia, the graft has good prospects of mitigating her hearing loss. The surgeon is very positive about how things looked.A possible complication was cholesteatoma, which proved to be negative - good news. See Wikipedia quotation below:

"Cholesteatoma is an epidermoid cyst of the middle ear and/or mastoid. It developed as a consequence of eustachian tube dysfunction and chronic otitis media, secondary to retraction of squamous elements of the tympanic membrane into the middle ear space. Those squamous elements cause bone destruction secondary to its expanding nature and through enzymatic destruction".

Because of the absence of cholesteatoma, the "up canal" approach to surgery was taken. This approach will have no lasting cosmetic impact as opposed to the alternative "down canal" approach. As is said in her language, Geo, Abi zoe (praise God).

Brian & Marsha

 

February 15th 2012

To all Trust donors and friends:

I was in Liberia for over three weeks in January on a hydro project, and I am now back trying to get things moving again for Diaworseh. While there, I called Diaworseh’s mother, Annie, and spoke with her via a translator. Annie’s English is pretty good, but the translator was able to describe medical details and other subtleties. Annie was very pleased to hear of Diaworseh’s progress and once again expressed gratitude to our team for such generosity.

After I returned to the USA, Diaworseh had an appointment with the orthopedic surgeon in early February. He thinks that the right foot, now corrected, looks great and so do we. While we knew it would be “fixed,” it is somehow surprising to see it looking perfectly normal, other than her calf muscle is still somewhat atrophied. She still uses a walker but gets around much better.

The surgeon examined the left foot, making plans with one other doc for the corrective surgery. They plan on a somewhat different approach for the left foot, partly to prevent the skin breakdown that occurred on the right foot. As I understand it, plans call for smaller incisions and an external fixater that can be ratcheted into the desired foot position of 90 degrees from “toes down” over six weeks. Then, when the external fixater is removed, they will relocate a tendon to help hold the foot in the correct orientation – the foot currently cocks in to the right. No date has been yet set, but presumably, it will be on a Tuesday in the not too distant future.

As you may remember, we found that Diaworseh’s right ear has had a long-term infection. As a result, the tympanic membrane is largely gone, and the mastoid bone compromised. Massachusetts Eye and Ear Infirmary (MEEI) and the surgeon have agreed to participate. We have a pre-op appointment with the surgeon set up. The plans are to remove the mastoid bone and replace the tympanic membrane with a graft. The tympanic membrane replacement is primarily to prevent future infections when she returns to Liberia. Her hearing in the right ear, now compromised, may improve, but that is secondary to preventing future infection. Plans are that she will only require an overnight stay at the hospital, then several follow-up visits over time.

As for the M.R.S.A. infection, the MGH infectious disease doc’s examination and swabs test indicate that she is OK, and he has given thumbs up for the surgeries. It is unlikely that the mastoid infection is M.R.S.A. or tuberculosis. (While she does not have tuberculosis, she did have a positive skin test, and she has recently finished a long course of daily meds prescribed by her MGH PCP to prevent its occurrence in the future. Otherwise tuberculosis would have been possible, if not likely, when she is older.)

Diaworseh is spending the period Feb. 9 through Feb. 16 with Marsha and me. Diaworseh and I have been working intensively on writing and reading. Her English is much improved, and a dialogue with her is now possible.

 

December 12th 2011

Diaworseh’s right foot appears to have been corrected. The second skin graft has healed well. Yeah!

Marsha and I took her for a visit to Portland, and while there, we went to a running-shoe store and bought her a pair of quality sneakers. The next week, she had an appointment with Mass General Hospital (MGH) orthotics where they fitted her for a foot orthotic and adjusted the height of the new right shoe to match the height of her left foot, until that one is repaired. She walks with the aid of a walker and is very pleased to see her right foot in the shape and position of other people’s. The orthopedic surgeon is ready to proceed with the left foot, but he suggests that he wait until infection (MRSA) and ear issues are resolved.

While Diaworseh was hospitalized at Shriners, we noted drainage from her right ear. After cultures taken, antibiotics administered, a CT scan, hearing tests, and examination by an ear and throat doc, it has been confirmed that she has significant loss of hearing in that ear, her ear drum is perforated, and that the mastoid bone behind the ear is compromised, having developed in the presence of an infection that she has had for a long time. (Growing up in rural Liberia, antibiotics for ear infections were not available.)

To send Diaworseh back to Liberia with this condition would expose her to further problems, he recommends surgery to graft a replacement of the ear drum and removal of the mastoid bone. The ear doc expects the surgery to involve at most an overnight stay with several follow up visits. While the graft to replace the ear drum might improve hearing in that ear, the primary purpose is to replace the barrier to further infection.

Because there are so many “moving parts,” Dr. Curran, Diaworseh’s pediatrician, is coordinating the various treatments. She has referred Diaworseh to an MGH pediatric infectious disease (ID) physician, and Diaworseh’s appointment is this Friday. The ear and left foot surgeries are on hold until MGH ID recommendations are received.

Diaworseh arrived in the USA on May 23 of this year, and we projected a stay of one year. Getting all this medical work done before the year is up will be tight.

Your donations are making this medical remediation for this child possible!

Thank you sincerely,
Brian & Marsha

 


November 11th 2011


Marsha and I want to thank each of the donors again; generosity has been nothing short of astounding! For this small philanthropic project, the total of donations and pledges received now exceeds $25,000. When I had budgeted $40 - $50,000 for the year, frankly, Marsha and I were very nervous. I am still contacting friends and family, and donations continue to come in. Thank you so very much! Diaworseh's family in Liberia continue to express their gratitude to all of us who are facilitating this positive change in Diaworseh's life.

As for Diaworseh's status, she spent all of last week at Shriners Hospital for Children in Boston. At the beginning of the week, she had surgery to attempt a second skin graft on the back of her ankle where the first graft had failed. At the end of the week, after maintaining a continuously-wet dressing soaked every two to three hours with silver nitrate, the second graft appears to have succeeded very well.

A complication is that the graft site has been infected with MRSA, and Diaworseh was restricted to her room all week. A recreation therapist did take her around to various departments for trick-or-treat on Halloween, which was her first time. I stayed with her all week, sleeping there most nights, working on education materials, games, reading, singing, art, and a couple field trips to the outside deck. Marsha worked with her on beading based on one of your donations. Despite spasticity in her right hand, she seems to manage fine motor movements quite well.

It turns out that despite CP, she has an athletic bent. She throws a spiraling football some distance with her good hand and scoops to catch my off-the-mark tosses back, all while sitting in her wheel chair. Her physical therapist has exclaimed several times about Diaworseh's unusual upper body strength, flexibility, and willingness to do the stretching and walking exercises - "one of the best ever."

After confirming that the skin graft was successful, the Shriners skin doc confirmed that she could be weight bearing on the foot. In short, the second skin graft on the area that previously failed appears to have been successful. Her right foot is now in the normal orientation; the left foot is next. After a session with the physical therapist, Diaworseh was discharged late Monday afternoon. We took her home in Lynn, MA to her caregiver whom we have hired, and using a walker, Diaworseh walked from the car to her room in the apartment.

She is excited because at last she can see where all this is headed in terms of being able to walk. On Monday, we will buy her a pair of shoes and have an appointment with orthotics to be fitted with an OFC and temporary lift. Because her left foot is still extended such that she walks on the extreme of its toes, until that foot is re orientated, she needs a lift on the shoe of the right foot. (While Marsha and I cover many of the expenses, we submit detailed expense reimbursement requests with receipts to the trustees. Your donations and that of many others help cover her living and transportation expenses.)
 

 

November 2nd 2011

On Tuesday, Nov. 1, Diaworseh returned to the OR where the surgeon redid the skin graft. The most painful part is the donor site where they took the skin. She has had morphine. The surgeon is taking special precautions to address the MRSA infection that is probably responsible for the last failure. He applied a "wet" dressing that requires re injection of silver nitrate every few hours. She will need to stay in the hospital until next Monday to keep up this practice. On next Monday, she will return to the OR for a review of the graft site and change of dressing.

Diaworseh has an incredible sense of humor, and she has developed relationships with the staff here; they now "get" her brand of humor; it's too funny. When she is up, she is up; when she is down; she is down. She seems to be doing better as she adjusts and becomes more trusting.

Diaworseh has worked with a music therapist, drum in hand. She can match tones and is learning American songs from me. The music therapist is impressed! Diaworseh is into music and sings along with the movies she watches that have songs. The therapist has Suzuki Omni Chord. It allows the child to participate in the playing and sing along in the given key. It's amazing! Diaworseh also sings songs in her dialect, "Abi Zo -oh - Abi Zo-oh," which means, "praise" or "thank you" God. Abi is the Geo / Dahn name of God.
 

 

October 20th 2011

To all donors:

This e-mail is the first of updates that I intend to send to all donors as bccs in order to keep you informed regarding Diaworseh's progress.

First the bad news, late last month, Diaworseh had surgery to place a skin graft on the back of her ankle. The skin in that location had failed as a result of stretching when her foot was moved into position. We have visited the hospital several times since. Most recently on October 18, we visited the hospital again for a check of the condition of the graft, and the skin doctor said that the graft was not successful and will have to be attempted again.

The good news is that the orthopedic surgeon, during an examination a week or so prior, said that the external fixator on her foot can be removed as soon as the skin doc says that it will be OK. The plan is now to schedule the Shriners operating room when both the orthopedic and dermatologist doctors can be there. That will mean one general anesthesia time for Diaworseh, rather than two, during which the external fixator will be removed and the new skin graft placed.

Diaworseh is in good spirits and now trusts the doctors, nurses, and the hospital environment. However, I get up tight about being sure that all goes well in the long run for Diaworseh. It is a huge responsibility for Marsha and me.

While we have been too distracted with the skin graft issues, Diaworseh’s schooling has not been settled. I will work on that as a second priority. When I asked Martha in the car if we should go back to the house to get Diaworseh’s d-o-l-l, Diaworseh said, “Yes, get me my doll, so she is picking up some minimal reading already – by osmosis, I guess.

As Marsha and I have a number of LL Bean coupons, we have suggested coats and other winter items for Diaworseh to select color, etc. to purchase for her. After choosing colors on our selections, Diaworseh proceeded to go through the catalogue as a true shopper might, and she circled a number of other items she wants. Selections included a cashmere scarf; price was no object. It was cute to watch. (I took a photo that I hope to have placed on the web site soon.)

As for fund raising, donations have slowed, and I will get back on my long list of potential donors and make more contacts. For those of you who have contributed, Marsha and I are very grateful for your help!

Brian

 

September 12th 2011

Diaworseh’s birthday –
Diaworseh turned 17 on August 2. It is a milestone for us all. When I first saw her in Duopu Village in 2008, she was 13 and slight. Now she is a young woman. For her birthday, we and her Lynn-area relatives went to McDonalds, brought in cake (Mickey D would not let us order in Dominoes, not sure why.), and had lots of fries, shakes, and burgers. We had balloons, sang happy birthday and celebrated, interrupting other diners’ quiet dinners. Among her gifts was a photo album, and we gave her photos of her parents, relatives at home, and of more recent events for her to put into the album for memories.

Recovery from surgery –
It has been three weeks since surgery was performed on Diaworseh’s right leg. Because the foot has never been in the position it is in now, the skin on her heel is very taught and, as a result, has abraded into a sore. We have had two visits back to Mass General Hospital for Children Orthopedic center for checkups on her foot. The surgeon is confident that this sore will heal on its own. Diaworseh’s next visit to the orthopedic office is on Monday, Oct. 3, at which time a decision will be made as to when to remove the external fixator and sutures. We expect that the fixator will be removed soon after the Oct 3 visit. No date has been set for the next surgery. Diaworseh will need to be weight bearing on her right foot before surgery on the left.

In the meantime, the surgeon has ordered weekly physical therapy sessions, which will be carried out by a therapist at Shriners Hospital for Children across the street from MGH. Diaworseh has developed trust in the physical therapist there and calls the therapist her best friend. Because Shriners works with children so often, they will also be working on life adaptations, including calendaring for count down until the fixator is removed and other landmark events.

It will take about a year of surgeries and physical therapy after which, she is expected to be able to walk and, as we have promised her, to dance. Last week, she was telling me the colors of the shoes she wants - red to name one of several. (Diaworseh is learning English and American teenage culture at a rapid pace.

Socializing at a Friend’s Birthday Party
On Sunday of Labor Day weekend, we took Diaworseh to a relative’s birthday party in Lynn. We keep her socially active and stimulated when we can.

 

September 8th 2011

Diaworseh's right foot was surgically repaired in a four-hour operation by a Mass General Hospital for Children orthopedic surgeon on Tuesday, Aug. 23. A significant risk was that he would not be able to completely adjust the position of the foot. All went well, and the surgeon said that he was pleased with the outcome. Diaworseh spent the next four days recovering at Shriners Hospital for Children, which is across the street from MGH in Boston.

The repair was of a very painful type, and Diaworseh was extremely uncomfortable. We and the hospital staff spent a lot of effort on pain management. She was also upset by the appearance of the external metal fixater that was used instead of a cast. It took us much of the week to convince her that it was not permanent. The good news is that she is back at her caregiver's home in Lynn, and she is smiling, laughing, and using a walker.

We were surprised by her interest in art. She chose painting and coloring as her favored pastime activity at the children's hospital. We think that right is her dominant side, but her right hand fine motor movements are compromised by CP, so she uses her left hand for painting and eating. So far as we know, she has never painted or colored, but she did very well and exhibited fine motor skills on her left hand.



June 1st 2011

After a 16-hr flight, on the afternoon of May 23, Diaworseh arrived at Boston's Logan Airport. She is now living in Lynn, Mass with her caregiver, Ms. Martha Grupee, a Liberian resident of the USA and a relative. Diaworseh is adjusting rapidly, now sporting jeans and other American teenage apparel. She relates well with Martha's daughter, Amie Grupee and her young son.

On June 6, Diaworseh, Martha, and I went to two appointments at MassGeneral Hospital for Children. She had appointments with two physicians, the first, who is now her PCP, and the second, her pediatric orthopaedic surgeon. Her PCP gave her a thorough physical, prescribed numerous immunizations and had blood and stool samples taken. Diaworseh is strong and in generally good health.

The orthopaedic surgeon did a thorough examination of her legs and feet, including x-rays. (Apparently, the CP results in calf muscles being tight, which is the cause of her prolapsed feet being rigidly fixed in place.) In conference with another surgeon, they agreed that it will be best to operate on each leg at different times.

The surgeon suggested that we consider the Shriners Hospitals for Children - Boston; the Shriners hospital is close to MGH. He will do the surgery there. Therefore, we have completed an application, and my long-time friend, Paul Jones who is a Shriner, will be the sponsor. This change has added some delay of the surgeries while paperwork is processed.


Contact us for more information

image