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About Dyamond

DyamondFor those of you who are new to following Dyamond’s medical condition, I wanted to give you some history.

When she was two or three years old, she would itch her legs until they were raw. She would get out of bed during the night, while sound asleep, and she would rub her feet on the carpet until she had blisters. The doctor felt she had allergies, due to the fact that I have several allergies and take three shots a week and daily allergy pills. They tried several different allergy medicines and none seemed to help. We applied lots of lotion, thinking dry skin could be causing the itching. Dyamond would always say her legs didn’t itch, her bones itched.

Dyamond spent her toddler days at home with David. Her first involvement with children outside the home was when she started preschool at the age of four. She attended preschool for 2 ½ hours a day, twice a week. After she came home each day, she would take a four-to-five hour nap. Dyamond was always a good sleeper, and we just thought she required a lot of sleep. David and the preschool teacher had talked several times about how tired she was and the teacher suggested to not let her sleep so long. David did this and also took her to the family doctor. They tested her for mono more than once and she always tested negative. We decided to have her tonsils removed before she started kindergarten. Doctors thought this would help her get a sounder night’s sleep. There was a complication with the removal of the tonsils and she had to return to the hospital. When she returned, her hemoglobin was a 5. Normal hemoglobin is 12-15 and the doctors don’t like to see levels below 11. They thought she might be a bleeder, so they ran several tests over the next several months and her hemoglobin went back up. In kindergarten she didn’t have the energy the other kids had, and she was still very tired. We told her doctor that we wanted additional tests run on her when school got out for the summer. He sent us to a pediatrician in Ankeny, who sent us to the University of Iowa Hospitals. They ran several tests on Dyamond and told us that she had a blood disease called Congenital Hemolytic Anemia. Her red blood cells die in less than half the time as a normal child's, resulting in low energy. We wanted to know what could be done for this condition and they told us we had a bigger problem. Dyamond had a liver disease and her liver was deteriorating. They performed a liver biopsy to confirm the diagnosis. They put her on medicine to slow down the deterioration and several medications to help control the itching. They told us that Dyamond was correct in thinking her bones itched, but it was her blood. Bile was not able to be removed from her blood under normal conditions. They explained her liver disease as a tree with a trunk, branches and twigs. She does not have the twigs, which is how the bile is removed. This was July 1999 and Dyamond was six years old. Dyamond’s younger sister, Dallas was almost two years old and we asked to have her tested. They told us there was a 99% chance that she would not have the same disease. The Friday before Christmas in 1999, we were told Dallas had the same disease. When Dyamond heard this she started crying and wanted to know if she could take the medicine for her sister because it tasted so bad. Due to their age the medicines had to be made into a liquid form. Both David and I can confirm that the medicines indeed do taste terrible. Yes, we both tasted them. They also did a liver biopsy on Dallas and to this day she still calls it, “when they pinched my liver.”

Over the next several years, the girls were seen at the University of Iowa Hospitals every couple months. They performed several upper endoscopy procedures on Dyamond and only one on Dallas, so far. This is where they scope her esophagus looking for varices (large blood vessels that could rupture). Three times they have had to band off the varices in Dyamond. When the paths from the liver to the heart get blocked, the blood finds other paths, and the next favorite path is in the esophagus.They performed this procedure again on 8/14. There were no varices.

At their December 7, 2005 checkup, Dr. Bishop told Dyamond it was time for her to be evaluated by the transplant team at the Nebraska Medical Center in Omaha, NE. They scheduled her for a three day evaluation on March 13 th. The evaluation ended up taking five days. They tested everything. The following is what was conducted during the five days and I’m sure I missed a few things: x-ray for bone age, chest x-ray, ultrasound of abdomen, psychology consult, blood typing, financial consult, child life assessment, nutrition consult, social service consult, hematology, genetics testing, echocardiogram, urinalysis, bone scan, another liver biopsy and a lot of blood work. From these tests they found that her bone density was a -3.7; normal is 0 to 2.0 and they don’t like to see it below -2.0. She is now taking a new medicine once a week that goes directly to her bones. Transplantation causes low density, and with hers so low already, it is a concern. They found that her kidneys were functioning at 50%. Due to these results, we returned in June 2006 for a kidney biopsy. The biopsy showed kidney disease.

On July 21, 2006 Dyamond was listed on the UNOS (United Network for Organ Sharing) for a liver and kidney and is awaiting transplant. Dyamond will be receiving her transplants at the Nebraska Medical Center in Omaha, NE.

I want to share a little bit about Dyamond the young lady, so you can get to know her and not just the sick Dyamond. Dyamond is a very caring and loving girl. Her passion is dancing, and this is what gets her through each day. She wants to be a professional dancer when she grows up. Due to her enlarged spleen, she has not Dyamond in Solo Dance Costumebeen able to participate in any physical activity, and has been removed from physical education class for several years. With this being said, Dyamond and Dallas have become very involved with dance. They not only take weekly dance classes at Nicole's dance studio in Ankeny with the spring recital as the goal, but they are also members of the dance competition team. It has been a big commitment and a wonderful opportunity. Their instructors, fellow dancers and dance parents have been a huge blessing to our family. For the past few months, dancing has been hard for Dyamond because her body is not allowing her to do everything that she used to be able to do. She does not want to give dance up completely, but she is cutting back on the number of groups she will be in. As much as she wants to be on that stage with her teammates, she knows that they all understand why she is cheering them on from the audience. She knows as hard as it is for her to be in the audience, it is just as hard on them not having her on stage.

Dyamond’s teachers shared their thoughts on Dyamond during a recent meeting. Dyamond is a very hard worker; she has an excellent work ethic; she is a great role model for peers and adults; she has a really good outlook on life; she is very determined; she is an exceptional child; "she is my inspiration." Those are comments every parent would like to hear, but these are the qualities everyone sees in her.

I’m Diane her mom, David is her dad, and Dallas is her younger sister. I’m sure you will be hearing these names a lot on her carepage. I hope this helps to give you a little more information on Dyamond. Of course there have been several bumps in the road, but these are the major ones.

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