Ashley's been doing well lately. The anti-reflux medication seems to be helping her cough. The cough isn't completely gone but it is so much better. In other words she isn't coughing as much. Right now the only concern I have is the size of Ashley's belly. I don't know if she is putting on extra weight or her spleen is getting bigger or maybe she is accummulating fluid in her belly called ascites. Her belly just seems to be changing size almost daily, one day it's fine or at least normal for her and the next day it's huge. Maybe I am just being paranoid, and Ashley is just gaining weight. Even though Ashley seems to be doing well it doesn't mean she is without complaints; she still complains about belly pain and headaches frequently. Again, this could be Ashley complaining to get attention or maybe there is somethings else there. I get a call from the school at least once or twice a week about these complaints, sometimes I just tell Ashley to got back to class as long as she isn't running a fever and sometimes I go pick her up at school. When I get Ashley home, she seems fine and doesn't complain. Maybe I need to find out if there is something going on at school. Ashley is sometimes teased at school, at least she has been teased in the past. Not everyone at school knows she has a liver disease.
Today I took Ashley in for labs, the docs ordered CBC's, full liver panel, Platelets INR, alphafeta protein text, Diffs, etc. In other words, they took lots of blood from my baby girl, at least 4 of those vials full of blood. Ashley is such a pro at gettng her labs done. She sits in the chair by herself, she tells the phelbotomist where the best place to stick the needle and she watches the blood travel through the tubing into the vials and not one tear is shed. I hope Ashley's blood results are as good as her behavior during the lab tests. However, I am anxious to see her platelet count and white blood cell count. Her platelet count is usually between 80,000 to 100,000 which is low; normal is between 155,000 to 450,000. When a person has low platelets they bruise eaiser, have a great chance to bleed out and bleeding is hard to stop. Ashley's white blood cell count has also been low but the last time she had labs was when she had that infection in her lungs, which can cause a low white count.
The week of February 25, Ashley will be traveling from Arnold Palmer Children's Hospital in Orlando to Shands Children's Hospital In Gainesville, Florida. First, she is scheduled for a repeat broncioscope on Monday, February 25. We are hoping the scope shows that her lung infection is gone, her tracea and esophagus have healed, her tonsils and adenoids are smaller. Then from Wednesday, February 27 to Thursday, February 28, Ashley will be at Shands for a variety of procedures. She will have an ultrasound with contrast, a endoscope to check for varices, and then we will meet with the doctor for results and a consultation. My hope and prayers is that Ashley's liver cysts/masses/nodules have not grown, her portal vein is fine and blood flow from the liver is fine as well as her spleen size is still the same as her last ultrasound.
It's funny sometimes I wonder if I should be praying that Ashley gets worse, that her test results are all abnormal, her liver nodules get bigger and her spleen doubles in size. Don't get me wrong, I don't want Ashley to get sicker, I really seriously don't but in order for her to even get listed for a transplant she needs to get sicker. I know that a liver transplant is just trading one set of problems for other problems but at least the liver transplant problems can be more predictable. Liver disease especially biliary atresia problems in older children are not predictable.
After Ashley's doctor visit and tests at the two hospitals, she will be attending her second dance competition in Jacksonville, Florida. Here Ashley will dance two numbers with her dance group. She will dance to Arrazando again and she will also be jazz dancing to Follow the Leader. Oh by the way, Ashley's dance video is up, if you want to see her dance go to http://wwww.halloffamedance.com. At the drop down menu to the right, click on Lakeland. On the next screen, you will see a menu on the left. Go to Inductee Videos, then click on The Lakeland Hall of Fame. Then scroll down until you see Arrazando. Click and download the video, watch and enjoy. Finding Ashley will be hard on the video because the number includes the Petite Dance Company as well as the Junior Dance Company. But I will tell you the girl on the front row that messes up her leg extention toward the end of the video is Ashley. She did great otherwise for her first competition.
We have all been fighting the flu here so far we have all beat the worst of the bug but I have one heck of a sinus infection so I am off to go medicate myself.
Love to all, Laurie
Today I took Ashley in for labs, the docs ordered CBC's, full liver panel, Platelets INR, alphafeta protein text, Diffs, etc. In other words, they took lots of blood from my baby girl, at least 4 of those vials full of blood. Ashley is such a pro at gettng her labs done. She sits in the chair by herself, she tells the phelbotomist where the best place to stick the needle and she watches the blood travel through the tubing into the vials and not one tear is shed. I hope Ashley's blood results are as good as her behavior during the lab tests. However, I am anxious to see her platelet count and white blood cell count. Her platelet count is usually between 80,000 to 100,000 which is low; normal is between 155,000 to 450,000. When a person has low platelets they bruise eaiser, have a great chance to bleed out and bleeding is hard to stop. Ashley's white blood cell count has also been low but the last time she had labs was when she had that infection in her lungs, which can cause a low white count.
The week of February 25, Ashley will be traveling from Arnold Palmer Children's Hospital in Orlando to Shands Children's Hospital In Gainesville, Florida. First, she is scheduled for a repeat broncioscope on Monday, February 25. We are hoping the scope shows that her lung infection is gone, her tracea and esophagus have healed, her tonsils and adenoids are smaller. Then from Wednesday, February 27 to Thursday, February 28, Ashley will be at Shands for a variety of procedures. She will have an ultrasound with contrast, a endoscope to check for varices, and then we will meet with the doctor for results and a consultation. My hope and prayers is that Ashley's liver cysts/masses/nodules have not grown, her portal vein is fine and blood flow from the liver is fine as well as her spleen size is still the same as her last ultrasound.
It's funny sometimes I wonder if I should be praying that Ashley gets worse, that her test results are all abnormal, her liver nodules get bigger and her spleen doubles in size. Don't get me wrong, I don't want Ashley to get sicker, I really seriously don't but in order for her to even get listed for a transplant she needs to get sicker. I know that a liver transplant is just trading one set of problems for other problems but at least the liver transplant problems can be more predictable. Liver disease especially biliary atresia problems in older children are not predictable.
After Ashley's doctor visit and tests at the two hospitals, she will be attending her second dance competition in Jacksonville, Florida. Here Ashley will dance two numbers with her dance group. She will dance to Arrazando again and she will also be jazz dancing to Follow the Leader. Oh by the way, Ashley's dance video is up, if you want to see her dance go to http://wwww.halloffamedance.com. At the drop down menu to the right, click on Lakeland. On the next screen, you will see a menu on the left. Go to Inductee Videos, then click on The Lakeland Hall of Fame. Then scroll down until you see Arrazando. Click and download the video, watch and enjoy. Finding Ashley will be hard on the video because the number includes the Petite Dance Company as well as the Junior Dance Company. But I will tell you the girl on the front row that messes up her leg extention toward the end of the video is Ashley. She did great otherwise for her first competition.
We have all been fighting the flu here so far we have all beat the worst of the bug but I have one heck of a sinus infection so I am off to go medicate myself.
Love to all, Laurie
Comments