Ashley's appointment at the liver clinic today went well. We have a plan in place and it may just give Ashley a more normal life. Hard to believe but we are optimistic. Is it really possible for Ashley to have a normal life? Not really, she does have a serious life threatening liver disease but she can have a much more normal life than she has experienced in the last 10 1/2 years.
Before we can experience a new normalcy a few things need to happen. First, Ashley needs to have an MRI to see if her liver cysts have changed. Second, Ashley's labs need to be stable for 6 months. And third, Ashley needs to stop bleeding rectally when she stools. If Ashley can accomplish this it means that we would not have to go back to the Shand's Liver Clinic for two years.
Here is how we are going to accomplish the above. Ashley will have an MRI this summer; sometime in June or July. She will have labs done again in August. And she is on a low starch diet to help her with her constipation issues to see if that helps prevent the rectal bleeding. Keeping Ashley away from starchy foods may be difficult because she loves bread, french fries, chips and especially mashed potatoes but we will help her by also being on a low starch diet. Hey, we can stand to loose a few pounds.
If Ashley's cysts have not grown, if she experiences no bleeding and if her labs remain stable as they have been, we can experience a new normal-a better normal by 2010. This does not mean that Ashley will be off her meds, it does not mean that Ashley will not have blood work anymore, it does not mean that she will not ever need a liver transplant. It only means that we can be normal for a while, until the other shoe drops; if it drops. Of course, all of this could change when we get her most recent lab results; the other shoe could drop before we even begin to experience our new normal. But we are optimistic!
Not surprisingly, Ashley's GI does not want Ashley to participant in PE next year when she starts 6th grade. He said what I was thinking, "We don't need a senseless accident to cost Ashley her life." He said that with Ashley's big spleen and liver, plus her low platelet count she is at a greater risk for internal injury should she fall, or someone should accidentally hit her in her abdominal area. So PE is out especially since PE in middle school is much more than playing kickball or running laps around the field.
Okay so maybe Ashley's life will never be normal. But we are happy with a chance for better than our normal. We can live with that!
Before we can experience a new normalcy a few things need to happen. First, Ashley needs to have an MRI to see if her liver cysts have changed. Second, Ashley's labs need to be stable for 6 months. And third, Ashley needs to stop bleeding rectally when she stools. If Ashley can accomplish this it means that we would not have to go back to the Shand's Liver Clinic for two years.
Here is how we are going to accomplish the above. Ashley will have an MRI this summer; sometime in June or July. She will have labs done again in August. And she is on a low starch diet to help her with her constipation issues to see if that helps prevent the rectal bleeding. Keeping Ashley away from starchy foods may be difficult because she loves bread, french fries, chips and especially mashed potatoes but we will help her by also being on a low starch diet. Hey, we can stand to loose a few pounds.
If Ashley's cysts have not grown, if she experiences no bleeding and if her labs remain stable as they have been, we can experience a new normal-a better normal by 2010. This does not mean that Ashley will be off her meds, it does not mean that Ashley will not have blood work anymore, it does not mean that she will not ever need a liver transplant. It only means that we can be normal for a while, until the other shoe drops; if it drops. Of course, all of this could change when we get her most recent lab results; the other shoe could drop before we even begin to experience our new normal. But we are optimistic!
Not surprisingly, Ashley's GI does not want Ashley to participant in PE next year when she starts 6th grade. He said what I was thinking, "We don't need a senseless accident to cost Ashley her life." He said that with Ashley's big spleen and liver, plus her low platelet count she is at a greater risk for internal injury should she fall, or someone should accidentally hit her in her abdominal area. So PE is out especially since PE in middle school is much more than playing kickball or running laps around the field.
Okay so maybe Ashley's life will never be normal. But we are happy with a chance for better than our normal. We can live with that!
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