Now that we are all back from our vacations I think I have a bit of time to update you all. Tj went on his trip to Alabama and loved it there and can't wait to go back and visit again. He got to meet his cousins and great grandma he had never met before. The induction ceremony sounds like it was very nice and we are so glad he got to be part of it. 
We also had a great vacation in Las Vegas the weekend after Tj got back from Alabama. Everything about it was great except for the heat of course. All the kids did great considering all the walking we did and the 110 degree temps. The first night we got there we walked the entire strip for the most part. We stayed at the stratosphere and made our way all the way to the MGM Grand stopping off for supper in the middle. On our way back to our room the kids were so tired of walking they decided they wanted to go back to our rooms so they got on a bus that went right to our motel. Scott and I sat and watched the pirate show at Treasure Island then we got on a bus also and went back to the room. Saturday we got tickets to ride the rides on top of our motel so we did that early in the day and did more walking. Later everyone was tired so we went back to our rooms and Haley and Hieu took naps while Scott just relaxed. Tj and I decided we wanted to go to the pool. It was a great pool and so relaxing. We were only there about an hour but it was so hot I got a good tan in that short amount of time. Tj found some people to play volleyball with and had a great time. When we got back to the room everyone got ready for the evening out. We had supper at our motel buffet then headed to do some sightseeing. We started off watching the pirate show at Treasure Island but it was still light out so it wasn't as good as it is at night. Then we stopped at the Mirage volcano, Bilagio dancing fountains, and made one last stop by Treasure Island again so the kids could see the show in the dark. By this time it was getting late and Hieu was tired of walking and Tj wanted to go ride the rides at our motel again since it was dark. Hieu called it a night while Scott, Haley, and Tj rode the rides again and I just watched from the observation deck. During the day nobody really said much about how scary it was being up so high but at night it was a whole different story. Scott was actually scared and they didn't even ride all 3 rides again because they all thought it was so scary. After they rode during the day they all wanted to do the sky jump that was also at our motel but after being up there at night Scott said there is no way he was jumping off the building and decided he didn't want to do sky jump. Nobody ended up doing it because it was so expensive! We could watch people jump from our window and I can't believe how many people did it considering it was $100.00 a jump and only took 16 seconds once you jump to touch the ground. After we were all done riding the rides Haley went back to the room and Tj, Scott, and I went to McDonald's for a midnight snack. By that time were all so tired that everything seemed funny and we had a great time. After getting back to our room we stayed up talking and laughing until 2am which was 4am Nebraska time! Needless to say we all slept in Sunday morning. We got our stuff all packed up and went up and had breakfast before heading to the airport. Once we got to the airport and all checked in we had lunch and just relaxed before boarding the plane. Our flights both ways were great and nobody got sick. On the way home most of us slept most of the flight so it went fast. Before we went I didn't think Tj would have that much fun but in the end he had more fun than any of the big kids. We are so glad we got to take all of the big kids and hope they have great memories of the vacation. When we got back to Grand Island I could not wait to see Tatum and Keely! They were so excited to see us and had a great time with their grandma's while we were gone. I don't plan on leaving them again for a long time but the vacation was great and I couldn't have imagined having them there with all the people and heat.
Now I need to update you about Tatum since I did start this sight to keep people updated on her health. She is doing well and hasn't had any pain crisis for over a month. She did have her regular check up a few weeks ago. While the results of the transcranial Doppler and blood work were good the suggestion from the doctor was not what I wanted to hear. He believes that Tatum has crisis too frequently for how young she is and for the form of sickle cell she has. So he has suggested she start a drug called Hydroxyurea. It is suppose to help her not have crisis so frequently. I can't really explain how it stops the red blood cells from sickling but there have been studies done on it in ADULTS with the most severe form of sickle cell disease but not on children. This drug was originally a chemotherapy drug that is now being used a lot in people with sickle cell disease but you can imagine the side effects that come along with it. I have joined some yahoo groups to try and research the use of this drug in children especially 3 year old children. I haven't come up with much reassuring information. So for now we are opting to not start her on the drug. If things do get worse or her Doppler's come back with bad results we will consider it but just don't feel like all the risks are worth it right now. We feel like we have been able to control her crisis very well and she hasn't been hospitalized in 6 months so it seems that we have it under control. She has also never had any transcranial Doppler with bad results meaning she isn't at risk for stroke right now. Below is some information about this drug if any of you want more specific info about how it works.
Hydroxyurea
HbF, also called fetal hemoglobin, is the form of hemoglobin present in the fetus and small infants. Most HbF disappears early in childhood, although some HbF may persist. Fetal hemoglobin is able to block the sickling action of red blood cells. Because of this, infants with sickle cell disease do not develop symptoms of the illness until. HbF levels have dropped. Adults who have sickle cell disease but still retain high levels of hemoglobin F generally have mild disease.
Hydroxyurea (Droxia) is a drug that reduces the severity of sickle cell disease by stimulating production of HbF. It is currently the only drug in general use to prevent acute sickle cell crises.
Hydroxyurea is recommended as frontline therapy to treat adults and adolescents with moderate-to-severe recurrent pain (occurring three or more times a year). Hydroxyurea reduces the frequency of acute pain crises and episodes of acute chest syndrome. It is taken daily by mouth. Hydroxyurea can be taken indefinitely and the benefits appear to be long-lasting.
Hydroxyurea is not a cure-all. Not all patients respond to hydroxyurea, and the best candidates for the treatment are not yet clear. Many patients who can benefit from it are not receiving it. Hydroxyurea is still being investigated for younger patients. To date, the response to the drug in children with sickle cell disease is similar to the response in adults, and few severe adverse effects are being reported. Recent research also suggests that hydroxyurea is safe for infants.
Side effects include constipation, nausea, drowsiness, hair loss, and inflammation of the mouth. More severe side effects include reduction of white blood cells (neutropenia) and clot-forming platelets (thrombocytopenia). Hydroxyurea should not be taken by pregnant patients as it can cause birth defects. There have been concerns that long-term use of hydroxyurea may increase the risk of developing leukemia, but the significance of this risk remains unclear. Still, for some patients the risks of untreated sickle cell disease may outweigh the risks of hydroxyurea� ' s side effects.
Patients should handle hydroxyurea with care and wash their hands before and after touching the bottle or capsules. Household members who are not taking hydroxyurea (such as caregivers) should wear disposable gloves when handling the medicine or its bottle.
Transfusion
HbF, also called fetal hemoglobin, is the form of hemoglobin present in the fetus and small infants. Most HbF disappears early in childhood, although some HbF may persist. Fetal hemoglobin is able to block the sickling action of red blood cells. Because of this, infants with sickle cell disease do not develop symptoms of the illness until. HbF levels have dropped. Adults who have sickle cell disease but still retain high levels of hemoglobin F generally have mild disease.
Hydroxyurea (Droxia) is a drug that reduces the severity of sickle cell disease by stimulating production of HbF. It is currently the only drug in general use to prevent acute sickle cell crises.
Hydroxyurea is recommended as frontline therapy to treat adults and adolescents with moderate-to-severe recurrent pain (occurring three or more times a year). Hydroxyurea reduces the frequency of acute pain crises and episodes of acute chest syndrome. It is taken daily by mouth. Hydroxyurea can be taken indefinitely and the benefits appear to be long-lasting.
Hydroxyurea is not a cure-all. Not all patients respond to hydroxyurea, and the best candidates for the treatment are not yet clear. Many patients who can benefit from it are not receiving it. Hydroxyurea is still being investigated for younger patients. To date, the response to the drug in children with sickle cell disease is similar to the response in adults, and few severe adverse effects are being reported. Recent research also suggests that hydroxyurea is safe for infants.
Side effects include constipation, nausea, drowsiness, hair loss, and inflammation of the mouth. More severe side effects include reduction of white blood cells (neutropenia) and clot-forming platelets (thrombocytopenia). Hydroxyurea should not be taken by pregnant patients as it can cause birth defects. There have been concerns that long-term use of hydroxyurea may increase the risk of developing leukemia, but the significance of this risk remains unclear. Still, for some patients the risks of untreated sickle cell disease may outweigh the risks of hydroxyurea� ' s side effects.
Patients should handle hydroxyurea with care and wash their hands before and after touching the bottle or capsules. Household members who are not taking hydroxyurea (such as caregivers) should wear disposable gloves when handling the medicine or its bottle.
Transfusion
