Speaking of which, we are so amazed at the "prayer chain" that has been created for Ashley by our families and friends. We're covering the US with record speed, as well as England and New Zealand. Thanks!
Wednesday, April 29, 2009
Ashley Update 4/29
A quick update, not a lot of news..... Ashley's doing well, still tired. So far, she has made three days of school this week, which is good. As part of her three-month initial treatment she will get another round of the high dose steroids on Friday morning. Pray that these treatments will continue to heal her quickly.
Tuesday, April 28, 2009
Back in the swing...
Yesterday Ashley had her first full day at school in quite a few weeks. She did well, but was a little tired...more in the morning. By the afternoon she was doing a little better. After school she and Robin went to take Ashley's senior pictures. We thought that since we don't know what side effects taking the treatments might produce over the next few months, we'll just have some in our pocket. Robin said they had a great and fun time doing that. I can't wait to see them. It's hard to believe we're already planning for her senior year in high school! All our friends who've been through a senior year tell us to get ready...it's a whirlwind!
Last night Ash was doing some homework for Spanish, which involved watching a Spanish soap opera. Since Ash still isn't strong enough to write too well, Robin had to help write down what Ashley translated for the homework (I think that's what they were doing). I just popped in once, laughed and left.
This morning she was pretty beat, but she trucked on out of the house backpack in tow. I know she is ready for summer! Although she won't be able to enjoy it maybe as much as she'd like.
Thanks to everyone for staying in touch by email, calls, cards or, to those under the age of 18, by text messaging her.
Monday, April 27, 2009
Ashley Update 4/27
Wednesday of last week (4/22), Ashley began her meds. Three days of high dose steroids, about a two hour process per day along with a single dose of Gamma Globulin on Thursday, about a 6 hour process. During treatment she watched the typical daytime TV game shows, noting she was pretty good at “Family Feud,” but was awful at “The Price Is Right.” She will continue on high dose steroids for three months, then will continue with some form of treatment for a minimum of two years. She got through that well, started to feel a little better, although still tired. She is still very weak and cannot even twist open a bottle. This is hard to think about since she has always been a strong athletic person. She has just totally lost her muscle mass.
Friday afternoon did bring great news though. They tested her blood and she responded well to the IV treatment. Her CPK ( Creatine Phosphokinase) level had dropped from 2600 to 800; about 200 is normal. CPK is an enzyme found mainly in the heart, brain and skeletal muscle. A high CPK level indicates serious muscle injury. At that level she obviously had some!
On Saturday she began oral meds (10 pills per day), so the IVs are behind us for now. She is taking Prednisone; Ranitidine to keep her from getting sick and some Calcium supplements since she is not a milk drinker. She had a good weekend, still hurting a little but that is to be expected. She is now trying to catch up on the homework she has... at least as much as she can stand... her arms still hurt when she uses then.
She will go back to see the doctor on Friday and they’ll test her CPK level again. Hopefully we will see more improvement and she won’t be hurting at all. She went to school this morning and we’ll see how she feels by the end of the day. She has about two weeks left. We are lucky the school year is almost over. It would have been more difficult to have gone through this early in the year. Summer will be here soon and homework will be one thing she won’t have to worry about. Oh, and her teachers have all been great in working with Ashley to get through her junior year!
It’s just hard to believe how quickly things can change. A month ago, who would have thought all this would be happening? But we are so thankful, as there are so many other children in Vanderbilt Children’s whose parents would give anything to hear slightest mention of a positive outcome. We should keep those families in our prayers, too.
I told a friend that God has allowed Ashley to have this and be healed from it because I firmly believe that one day when she is in the medical field she will be the one (when others may not know) to diagnose someone who has dermatomyositis since she knows the symptoms firsthand. She will be there to save that life.
Thanks again to all of you for thinking of Ash.
Friday afternoon did bring great news though. They tested her blood and she responded well to the IV treatment. Her CPK ( Creatine Phosphokinase) level had dropped from 2600 to 800; about 200 is normal. CPK is an enzyme found mainly in the heart, brain and skeletal muscle. A high CPK level indicates serious muscle injury. At that level she obviously had some!
On Saturday she began oral meds (10 pills per day), so the IVs are behind us for now. She is taking Prednisone; Ranitidine to keep her from getting sick and some Calcium supplements since she is not a milk drinker. She had a good weekend, still hurting a little but that is to be expected. She is now trying to catch up on the homework she has... at least as much as she can stand... her arms still hurt when she uses then.
She will go back to see the doctor on Friday and they’ll test her CPK level again. Hopefully we will see more improvement and she won’t be hurting at all. She went to school this morning and we’ll see how she feels by the end of the day. She has about two weeks left. We are lucky the school year is almost over. It would have been more difficult to have gone through this early in the year. Summer will be here soon and homework will be one thing she won’t have to worry about. Oh, and her teachers have all been great in working with Ashley to get through her junior year!
It’s just hard to believe how quickly things can change. A month ago, who would have thought all this would be happening? But we are so thankful, as there are so many other children in Vanderbilt Children’s whose parents would give anything to hear slightest mention of a positive outcome. We should keep those families in our prayers, too.
I told a friend that God has allowed Ashley to have this and be healed from it because I firmly believe that one day when she is in the medical field she will be the one (when others may not know) to diagnose someone who has dermatomyositis since she knows the symptoms firsthand. She will be there to save that life.
Thanks again to all of you for thinking of Ash.
A little background....
After 4-6 weeks of tiredness, weakness, and then recent progressive pain and swelling in her arms and legs, Ashley has been diagnosed with dermatomyositis. You may or may not know.... its a autoimmune muscle disease that affects the muscles and skin. The cause and how you get it is unknown, but it could be genetic factors, viral muscles infections of muscle or autoimmune mechanisms (according to one source I saw). Luckily it is now treatable and curable. The doctors said about 5 in 1 million get this and it can be difficult to diagnose. We were lucky, they said, in that they were able to diagnose it quickly.
You can read more at:
She was first diagnosed with mono and we thought she had that for a couple of weeks. But once the pain and swelling set in it seemed to be something more. After numerous visits and repeated tests at her doctor (and consults with doctors at Vandy who couldn't diagnose it either) to rule out anything we thought could be even more serious, her doctor then sent her to Vanderbilt Children’s Hospital to the Infectious Disease Center last Thursday. That same day we then found out the first mono test gave a false positive reading; a second, more–detailed test showed her negative for mono. A doctor in his fellowship there, who was substituting for the doctor Ashley was suppose to see, was the only one who had ever seen a person with this disorder and recognized it on Ashley when he saw the redness that appeared on her knuckles and knees. We were lucky he was there to see her that day and know God put him there to see her. Vanderbilt said we are very lucky to have found this diagnosis so quickly. Given the symptoms of the disorder it can take months and months of tests to rule out what it could be before you finally get to dermatomyositis.
Oh well...
Okay, so it's called social media...I get it, I'm just not sure how I feel about my personal life being online. I'm facebooked, linked-in and now blogged. I haven't twittered yet, and not sure I want to. I've had several requests to start a blog to share information on Ashley, so this is why the blog.
The name "Open JARS"?....well, to myself I've kind of always called my family The JARS...Jeff, Ashley, Robin Siptak...and online you kind of open your life to everyone. So, I guess we're now Open JARS. Is all this "free-for-the-reading" technology really good? Am I still just too "old school"?
More on Ashley in a bit...
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