Rainbow Families Foundation Newsletter - January 2004

January 2004

I spoke to Dr. Sheridan at Shriner's Hospital the other day regarding Anny. He received the two photos I sent and wanted an update. He wants to be absolutely certain she is able to travel and will not be infected in any way. Basically her spirits continue to improve and she has a healthy appetite. Dr. Reyes says her wounds are healed enough that they cannot get infected. Dr. Sheridan continues to be concerned about the neurological damage and emphasizes that they cannot help with this problem but an affiliate hospital can at a cost. I explained that Anny's hands are drawn (hence her grandmother (Alyandrina) has to feed her) and he said they would be able to help with that. I thought this was part of the neurological damage so I am not sure how they can help with this and not with her ability to walk. If she tries to walk she has no control and her legs are like jelly.

Dr. Sheridan continues to emphasize that (1) Shriner's is first committed to the needs of American children and he cannot occupy a bed for the extended period of time that Anny will need, (2) because the budget will not allow such an extended stay for one patient, (3) if a critically acute patient comes in they need to have a bed available, and (4) they are not equipped to provide round the clock nursing care. Anny wears pampers and cannot feed herself so her grandmother takes care of that anyway. He said that the YMCA allocates 5 rooms to Shriner's but the cost is $79 US dollars per day, including all meals. He has basically agreed to allow Anny to come for 2-3 weeks and will try to perform two major surgeries in that period of time. Then she would be moved to the YMCA Hotel (if a local sponsor is not found) and further minor surgeries would be done allowing her the short periods of time in the hospital to recover.

Previously Dr. Sheridan told me that the Shriner's group (separate from the hospital) agreed to donate money for Anny and her grandmother's airfare. I told them I have a donor to pay for this and asked if this Shriner's group can allocate the equivalent amount of money towards her care. He thought this would not be a problem and will let me know. Therefore, assuming the airfare would be about $1,500 for Anny and her grandmother, they could stay at the YMCA Hotel for about 18 days, beyond the 2 to 3 week initial period at the hospital. He said the local affiliate hospital may be able to help with her neurological damage but at a cost.

He explained that once before they sent a patient there and the cost was about $40,000 and Shriner's had to pay and he got in a little hot water over it so he is being overly cautious from now on. He explained that if they have a patient within a reasonable driving range they will pay the transportation expense for child and guardian to come for the surgeries. Also, he said they should be able to find a doctor to check her eyes and learn if they can get her vision back. Dr. Sheridan said that Anny will need many, many surgeries for many years to come but she will never be normal again. He and a group from Shriner's Hospital have come each year in April for a one day scouting trip looking for potential patients. He offered that if he performs 2 major surgeries during the 2-3 week period in Boston, he will be able to extend his stay and work with Dr. Reyes here in Santiago on other minor surgeries in April when he comes. So . . . I need to send Dr. Sheridan an email to get a formal agreement and timeframe to propose the 3 week stay at Shriner's for 2 major surgeries and then if the Shriner's group will allocate the travel money towards the YMCA stay for another 2-3 weeks for a couple more minor surgeries. Also, he will need to send a letter to the U. S. Consulate for a medical visa, which I understand can take 5-7 working days. She and her grandmother (Alyandrina) already have a Dominican passport. With God's will and much perseverance there will be a way for Anny to go to Boston and get the proper surgeries she needs. My preference would be for her to get all her surgeries done at Shriner's but the cost for the YMCA stay is prohibited. My email to Rotary International ended in a negative response. I am still searching for the woman I met earlier this year but nobody knows her last name. I call the phone number she gave me and her voice says to leave a message. I leave a message but she doesn't call back. I suspect she returned to Boston but didn't cancel her cellular phone service here. I have a couple other leads that I need to follow-up. I went to see Anny and her grandmother and they are very excited. Anny was in very good humor. I explained what I looked like to her and she remembered that I was in her school to collect money for Jose Antonio. She said she remembered I was very beautiful with long beautiful blonde (rubia) braids and my speech about little Jose Antonio made her cry. I don't know how I got the strength to pull through this one but let me tell you it was very emotional for me. Just to see this child is so traumatic and emotional but then to hear her sweet voice behind such a grotesque face is hard to bear. Then to hear her speak about her concern for Jose Antonio, WOW! Alyandrina asked her to sit up along the side of the bed and show me how when she lifts her chin the bottom lip is drawn downward because there is not enough skin on her neck. This will be one of the major surgical areas. Alyandrina has not been able to get a photo of Anny before her accident. School is out for the holiday and she has to wait until school starts again to get a copy of last year's school picture. I will put it on the website. I met with Dr. Alexis Reyes (the plastic surgeon here who performed the 5 operations) and he wants to help all he can if Dr. Sheridan is able to come here in April. I was able to meet his wife, who is also a plastic surgeon and they have an office together. Fortunately both of them speak a little English so communication is easier for me.

Jacobo and I went to see Antonia. Her return from the hospital was delayed and she just returned home on Tue., 30 Jan. Apparently her illness was attributed to the mother (Santorina) not buying one of her medications when she finished with the prescription so Antonia was not able to take the medication for several days, making her come down ill again. First she didn't have the money and then when she got the money the local pharmacies did not have the medicine in stock.

Antonia will be in the hospital and she will never be well enough to undergo the heart valve transplant. Very frustrating. It was so cold in the mountains where they live and obviously they do not have any heat, electricity or running water in the house. The view where they live is absolutely breathtaking. They live high into the mountains in Severe and we have to walk about a mile and cross a rapidly flowing stream (because of all the rain) to get to their house. Jacobo's family came with us on this trip and it was difficult getting the children across the river, balancing on the rocks. On the way back down the mountain it started raining and it was dark with nearly no moon shining and I just crossed the river through the water rather than trying to balance on the jagged rocks placed for walking. Because of the rain we were unable to go further into the mountain to visit Franklin or Jose Antonio. I will have to send a motorconcho to ask Jose Antonio and his mother to come to Monte Llano by motorconcho on a scheduled date so I can see them. Perhaps I can get a ride with Franklin's aunt who goes to the countryside on Sunday's since her mother lives next door to Franklin's family. Her husband has a four wheel drive. On the way back to Jacobo's we stopped in Severe at the girl's house that Jacobo wanted me to see. Rosangela Almanzar was in church but her mother was in the home and showed me the x-ray taken of Rosangela's spine. Clearly she has scoliosis. Dr. Galan, an orthopedic doctor in Puerto Plata, ordered the x-ray and wrote a prescription for a corset back brace. (This can be specially made in Santiago.) I know a woman named Gabriela who is a physical therapist and I took the x-rays to her, in an attempt to search for suggestions. Gabriela is either from Switzerland or Germany. She said her teacher is here from Switzerland and she wanted to show him the x-ray. Today (Saturday) I saw her and she said her teacher is suggesting physical therapy, that the spine is out of alignment at a 12 degree angle and that he said, in Switzerland, corsets are recommended if the alignment is 30 degrees or more. He felt that extended physical therapy can correct her problem along with correct posture. We made an appointment for Thursday at 3PM so I asked Jacobo to send a motorconcho and tell the mother and child to be at his house at 2PM on Thursday and I will take them to see Gabriela. She has agreed to do the treatments for free for me. Gabriela believes that this type of problem is organic and caused by an internal problem. She wants to check the pressure points of the internal organs to learn if this is the case. She believes that proper diet can alleviate problems such as this. Quien sabes! Jacobo's truck is having problems with the clutch and appears to be leaking brake fluid from the back left tire. If the mileage is correct he has nearly 190,000 miles on this '88 Toyota. It is really sturdy but takes quite a beating on the roads in the countryside. The boys have not been playing baseball, (1) because it has been raining so much and (2) Jacobo's lawnmower is broken and the baseball field is overgrown with weeds. When I enter the community they all wave and say hello to me and chase my car. Jacobo turned 37 years on 28 November. He said I was the only person to remember his birthday. He said he didn't tell anyone either. There are so many brothers, sisters, nieces and nephews it would be difficult to keep track. He's a Sagittarian, like me. Yanaris will be 2 on 11 January, five days before McKenzie. His mother is not doing well. She has heart problems and also needs all her teeth pulled because her gums are infected. They don't have the money for the dental care so she remains in pain with the infection. I enjoy to drink Chinola juice (passion fruit) and buy it most of the time. I was checking the nutritional values and learned it does not have the daily minimum requirement of vitamins A, C or Calcium and iron, based on a daily 2,000 calorie diet. Now I've switched to orange juice with 110% of vitamin c and 2% vitamin A and apricot juice with 100% vitamin c and 3% fiber and also pear juice that has 160% vitamin c and 3% fiber. Drinking mostly chinola juice could attribute to why my resistance was so low and getting the flu so often.