Rainbow Families Foundation Newsletter - May 2004

May 2004 I took Antonia and her mother to Santo Domingo as planned. I called Dra. Toribio the day before to confirm the appointment. When we arrived at Clinica Corazones Unidos Dra. Toribio was not there. Her secretary said she left early for a party at her child's school. Apparently she forgot about our appointment. The secretary called her and Dra. Toribio gave us the option to come another day or else come to Hospital Plaza la Salud where she could perform the echocardiogram. Obviously after getting up early and driving to Santo Domingo we went to Plaza la Salud but had to wait two hours for her to arrive. I always call her directly on her cellular phone but now I will make appointments with her secretary so Dra. Toribio will have the appointment on her schedule. Anyway, the echocardiogram reflected some calcium deposits in her posterior mitral valve. Dra. Toribio discussed this with another cardiologist and it doesn't appear to be a problem. The mitral valve is functioning fine. Antonia is to continue with four medications with adjustments to two of them. Dra. Toribio also prescribed Coralot (like a children's aspirin) to thin her blood and prevent thrombosis (blood clots) in the left atrium since the EKG reflected some blood clotting. I bought one bottle of 60 pills to get her through two months. She is to see Dra. Toribio in four months (end of August) for another echocardiogram. Prior to her appointment she must get an x-ray of her “torax” and bring it to the next appointment. Dra. Toribio said the American doctors from Heart Care International will be at Plaza la Salud in October. She would like Antonia to come for an appointment so they can check her. Antonia looks very good with nice color in her face and now weighs 62 pounds. She has gained about 10 pounds in two months. Franklin is continuing with his weekly chemotherapy treatments and is responding very well and doing great. He has a couple more months of weekly treatments to go to finish the 8-month treatment plan. He looks good though still very thin but his hair has grown back. Roseangela is continuing with her physical therapy for scoliosis. She sees the therapist every third Monday. She is doing fine and her family is pleased with her progress. Luitka has been in and out of the public hospital in Santo Domingo. You may remember she was born without an anus and the doctor in Puerto Plata did emergency surgery when she was born. I was told she would never be able to have children, which is a tragedy for her mother since the Dominicans are proud of extending the generations. Jose Antonio is doing very well and growing like a weed. Don't know if I mentioned this before but his mother is pregnant again. She told me she had surgery and couldn't have more children but perhaps I misunderstood somewhere along the line. Her husband lost his job and is now a motoconcho (motorcycle taxi). I see Anny everyday for therapy. She has become very dependent of me. When I returned from Santo Domingo with Antonia I went to Anny's home for a couple hours. When I wanted to leave she wouldn't let me. She literally held on to me with all her strength and wouldn't let me go. Her psychological counseling is only once per month which is not enough. When she is angry she speaks very harsh to whomever she is angry with, especially her grandmother. Now she has started to cut loose on me, except I don't understand everything she is saying and the names she is calling me. We continue to go to physical and occupational therapy but I am not sure how much longer I can continue. First, Anny wakes up late and we are nearly always late for therapy. When we are late we have to wait until the therapist is ready for the next patient because we've missed our turn. My personal opinion is that her grandmother allows her to sleep late so she can have some quiet time in the morning when her husband is at work and Anny's younger brother is in school in the morning. Second, her occupational therapy in Puerto Plata seems to be more of a social outing than actual therapy. The therapist is pregnant and is always tired and doesn't seem too interested in working, just talking. I asked Anny's uncle to install a bar along the wall in her bedroom, which he promptly did. Her grandmother moved her bed to make room for her to walk about 5 feet while holding on to the bar. When I can get her cooperation I make her walk the bar. I loaned her my five-pound weight to build the strength in her arms. We do situps as many as she feels. I also brought her a tennis ball and a ball filled with sand to work her hands. One of her therapists said she could braid my hair to exercise her hands, which we are doing. We also have two socks filled with sand that are tied to a rope. We do leg lifts with this. Unfortunately it is a constant fight to get her to exercise. I must threaten to leave just to get her started. However, I think we are making more progress on the home exercises than the hassle of going to Puerto Plata for therapy. I'll give it some more time before making any changes. Anny's grandmother told me she wanted to put Anny and her brother in psychological counseling even before the accident because they always wanted to be in the street and didn't abide by her rules. Somebody told me that her uncle told her to get out of the building where the accident happened. Thirty minutes later she returned and was electrocuted. Her grandmother is anxious to go to the United States but forgets that Anny must learn to walk first. However, she feels sorry for her and doesn't push her. In December when Anny was released from the hospital in Santiago, Dr. Reyes told her to get Anny into physical therapy. The grandmother forgot so she lost 4 months just lying in the bed. When we were in Santo Domingo and the American doctor told me she must get into rehabilitation and learn to walk before coming to U.S. I immediately got her enrolled into physical therapy in Puerto Plata. Through 3 people I know who know the Director, I was able to get Anny's therapy for free. The grandmother is also in therapy for her knee problem but she must pay 30 pesos each visit. We were able to get a new wheelchair donated through an organization in the U.S. We went to Santiago to see a rheumatologist because Anny was complaining of constant pain in her back and legs. The rheumatologist said he could not do anything and referred us to a neurologist. The neurologist sent us to the laboratory to have an MRI done to her spine to determine if her spinal cord was damaged. Thank God she has no spinal cord damage. He prescribed a medicine to relax the nerves as a result from the electrical shock. I took the pills for one day to be sure it wasn't something strange but it didn't have any effect on me. It seems to be helping Anny. I ask her on occasion if she is having any unusual side effects. She says no side effects but it is helping her leg nerves to be a little more relaxed. I thought it was contributing to her aggressiveness but now believe she just doesn't want to exercise. Every once in a while her legs will flinch like electrical current is passing through. As for her pain in the legs and back I believe it is a result of lying in the bed most of the time. I've convinced the grandmother that Anny must come to the kitchen table and eat her meals rather than lying in the bed. Anny doesn't like it and puts up a fight but while I am there she is not permitted to eat in the bed. Who knows what happens after I leave. As a result of the good news with the neurologist I have stepped up the exercise program to twice a day (when possible) and now doing occupational therapy in the home as well. I can see a good improvement. Because Anny is blind she will not be mobile and independent to walk by herself but hopefully we can get to a point where she can walk with little assistance from her grandmother when we come to Boston. Anny must built strength and mobility in her legs to get up and down the steps of the third floor of the apartment in Boston. I can see a small improvement in my own muscle tone because I am starting to do the exercises with her. I took Anny, her two brothers, the grandmother and Anny's young cousin to the beach. We had a good time until she bumped her deformed hand on a surfboard and she started crying and we had to leave. She wants to go to the beach again but I don't know when we'll go. It was a little expensive for me buying food and drink for everyone. Plus, her grandmother must get someone to work in her store. The last time we were to leave for the beach at 1:30 and didn't leave until 4:30. Someone in the family had a problem and the grandmother was chasing around trying to help them. I went to see Dra. Sanchez, an ophthalmologist in Puerto Plata, to learn what is happening with Anny's eyes. Dra. Sanchez referred us to an ophthalmologist in Santiago who has state of the art sonografia equipment. Dra. Sanchez said the cataracts are causing her blindness but couldn't tell if the cornea was damaged. The sonogram results reflected no damage to the cornea or backside of the eyes, thank goodness. The doctor explained that when the cataracts and her natural lens are removed an artificial lens transplant would allow her to see again. They are not recommending this surgery prior to her plastic surgery because Anny does not have enough skin on her eyes in order to close them. I told the doctor that the family was very poor and could he give me a discount. He deducted 600 pesos from the bill. Anny and I usually have a big blow up once a week because she wants to make up excuses not to exercise. The next day she will tell me she loves me and I am her sister. She calls her two friends and then wants me to speak to them. It is like I am a token “gringa” that she is proud of and wants to show off. I am also talking with two other families who have baby daughters with heart problems. I have set them up with Dra. Toribio, the pediatric cardiologist at Corazones Unidos in Santo Domingo. She also works at Plaza La Salud where the doctors from United States perform the surgeries. I am not able to work with them closely like Anny and Antonia so the families will have to help themselves. It is difficult because they are not educated enough to understand. They need someone to take them by the hand and do everything for them. I have been looking at a lot of Toyota's and Honda's and everything is so expensive and the cost continues to go up. A political person in Monte Llano has a friend in Santiago with a '01 Honda CRV. He wants to sell it and will let me know when it is ready. The jeep was in an accident and is at a body shop getting repaired and painted. I am also looking for an “opportunity” where somebody must quickly sell their car at a good price. I always hear about it after the fact. Jacobo bought a 2001 Suzuki Sport Jeepeta for 800,000 pesos after taxes, insurance, loan interest, etc. He borrowed money from his cousin. During the heavy rains he had to park it at the police station in Monte Llano for five days because he couldn't drive it through the flooded sugar cane fields. His family is fine except he has high cholesterol and is on a strict diet.