There have been so many things going on since I last posted. I apologize for not posting more often, I promise I will be more diligent at keeping up with and posting on Ashley's blog. Soon I will post some recent pictures of Ashley but for now let me just update you on our little miracle girl.
Back in September we made one of our many yearly trips to Gainesville, Florida for an appointment to Shands Hospital Liver Clinic. We had the best appointment ever since Ashley's diagnosis with biliary atresia 12 years ago. I am completely amazed at how far she has come, we were given such little hope when she was born. At that appointment, the doc could not feel her spleen. Not feeling the spleen is a good thing...a very good thing. For the past 12 years, Ashley's spleen has been huge (the size of a grown adult) and it was the reason for her not being able to participate in certain activities, horseback riding, gymnastics...and even regular physical education classes. We are cautious about saying that her spleen will never enlarge again because we know all to well the unpredictability of this horrible deadly disease but for now we will take it as news that her liver seems to be functioning much better now.
A normal spleen does not mean that Ashley no longer has biliary atresia, it just means that her spleen is smaller...that's all. We still have all the same worries, bleeds, liver transplant, low platelet count, etc. But we are not letting those worries consume us today.
Ashley's lab counts look pretty good too. Her AST/ALT were slightly elevated, those can indicate inflammation in her liver. Her WBC (white blood count) was low, which we all know can indicate infection. However, they weren't alarmingly off so we just thought she might have a mild virus that was dormant. Sure enough, a few days after our visit to the liver clinic, Ashley came down with a sinus infection. We have no idea what her platelet count is because the lab technician messed that up...the blood coagulated. I would love to see her platelet count especially since her spleen is/was significantly smaller. Ashley still bruises very easy (you should see her knees from dance classes), therefore, I think her platelet count is still low. Maybe I will take a picture of Ashley's poor bruised knees.
Speaking of dance. Ashley is in full swing with dance classes (9 hours) and dance company rehearsals. She is doing two solos this year and a few more group numbers that she has done in the past. I, her mom, and her biggest fan, has been busy fundraising to keep Ashley in company. (The things I do for my kids, but I wouldn't trade it for anything, hopefully they will appreciate it one day, if not now). Ashley is known as gumby at her dance studio because she is very flexible. (Will share pictures soon). Watching her dance is like watching a miracle take flight. I can't get enough of it.
Oh Ashley wanted me to tell you that she got two female Betta fishes...Bleep and Blurb, a red fish and a blue fish. She is an ALL animal lover - reptile, mammal, domestic...tamed, wild...it doesn't matter, she loves them all.
Blessings to all
Back in September we made one of our many yearly trips to Gainesville, Florida for an appointment to Shands Hospital Liver Clinic. We had the best appointment ever since Ashley's diagnosis with biliary atresia 12 years ago. I am completely amazed at how far she has come, we were given such little hope when she was born. At that appointment, the doc could not feel her spleen. Not feeling the spleen is a good thing...a very good thing. For the past 12 years, Ashley's spleen has been huge (the size of a grown adult) and it was the reason for her not being able to participate in certain activities, horseback riding, gymnastics...and even regular physical education classes. We are cautious about saying that her spleen will never enlarge again because we know all to well the unpredictability of this horrible deadly disease but for now we will take it as news that her liver seems to be functioning much better now.
A normal spleen does not mean that Ashley no longer has biliary atresia, it just means that her spleen is smaller...that's all. We still have all the same worries, bleeds, liver transplant, low platelet count, etc. But we are not letting those worries consume us today.
Ashley's lab counts look pretty good too. Her AST/ALT were slightly elevated, those can indicate inflammation in her liver. Her WBC (white blood count) was low, which we all know can indicate infection. However, they weren't alarmingly off so we just thought she might have a mild virus that was dormant. Sure enough, a few days after our visit to the liver clinic, Ashley came down with a sinus infection. We have no idea what her platelet count is because the lab technician messed that up...the blood coagulated. I would love to see her platelet count especially since her spleen is/was significantly smaller. Ashley still bruises very easy (you should see her knees from dance classes), therefore, I think her platelet count is still low. Maybe I will take a picture of Ashley's poor bruised knees.
Speaking of dance. Ashley is in full swing with dance classes (9 hours) and dance company rehearsals. She is doing two solos this year and a few more group numbers that she has done in the past. I, her mom, and her biggest fan, has been busy fundraising to keep Ashley in company. (The things I do for my kids, but I wouldn't trade it for anything, hopefully they will appreciate it one day, if not now). Ashley is known as gumby at her dance studio because she is very flexible. (Will share pictures soon). Watching her dance is like watching a miracle take flight. I can't get enough of it.
WARNING. Shameless begging here. If you would like to help keep Ashley dancing. You can do so a number of ways. You can send a check to Studio 5D Dynasty Dance Company, 1303-1323 Winter Springs Blvd, Winter Springs, Florida 32708. Please put Ashley Johansen is the memo section of your check this will make sure it is deposited into Ashley's dance company account. The Dance Company is a not-for-profit organization. Or if you are not comfortable sending a check to the studio, you can always send the check to me with the same written instructions to our home address. You can email me at Laurie@cfl.rr.com for our home address. Also, we do a lot fundraisers by selling seasonal items. Right now we are selling Holiday Plants (Christmas and Hanukkah). The plants range in price from $10 to $29. If you are interested in purchasing these plants, please send me an email. We can ship the plant anywhere in the continental United States for $10.Thank you so much for continuing to care about my daughter, even in the absence of regular updates. Your love is very much felt by each of us.
Oh Ashley wanted me to tell you that she got two female Betta fishes...Bleep and Blurb, a red fish and a blue fish. She is an ALL animal lover - reptile, mammal, domestic...tamed, wild...it doesn't matter, she loves them all.
Blessings to all
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