Friday, March 13, 2015

Phantom Progress

This has been one of those weeks where I feel like we haven't made any headway at all, but the records show Amber completed 15 hours of core subjects and numerous hours of electives.  Who would have thought?

Phantom of the Opera on Sunday was fantastic.  This new show has a little more of a modern feel to the sets and the actors' interpretations while still being the same Andrew Lloyd Webber Phantom of the Opera.   Amber had a rough weekend and felt horrible Sunday, but she was so excited to go and pushed through it all.  It was a lovely experience for us all.

Of course Monday was a sick day for Amber.  She barely functioned at all the whole day.  I did have to take her for an allergy shot, but that was pretty much the sum total of her activity for the day.  Again my records show she completed a lesson in her Greek vocabulary and watched the entire set of Crash Course Astronomy.  I'll count that as a good day considering how she felt.

Phantom of the Opera at the Fabulous Fox Theater.  That's the Fox's chandelier and not the one from the production.
Tuesday was the long awaited and somewhat dreaded neurology appointment. As difficult as it is for Amber to get up and going in the mornings, afternoon appointments at the neurologist are always over an hour behind schedule.  Then we are stuck an hour from home in rush hour traffic.  Amber took work for the car ride, and the waiting room.  She managed to complete another Greek vocabulary lesson plus finished reading the Canterbury Tales.  After we got home she also finished all her writing assignments for the Hundred Years War and War of the Roses.  We are now officially in the Renaissance period for history.  Finally, Amber took a math test.  I can't believe she accomplished so much on such a long day.

My little trooper girl woke up Wednesday with a positive attitude and ready for her school lessons.  I was a little less ready and thought Amber deserved a break.  After yet another vocabulary assignment we called it a day and went shopping.  Most of Amber's Spring and Summer clothes do not fit because she has grown almost 5 inches since many of the items were purchased.  Amber does not have the stamina to shop for hours like she previously could, so instead we must make multiple shorter trips.  Wednesday we managed to purchase most of the dressier clothes Amber will need.  We hope to make another shopping trip or two next week for more casual clothes and shoes.

All the kids at co-op this week were pretty excited about the weather turning warmer and the sun occasionally shining.  Amber had a fun day with her friends and dressed with particular care.  I'm absolutely thrilled she is concerned with clothes and accessories again.   When she gets down and depressed about her condition she also stops caring about her appearance.  It goes in spurts, but she's back to being girly and I think the warmer weather and change of attire are partially responsible.

Today we are out of the house for yet another homeschool group teen event at a local sports center.  Sports Fusion offers indoor minigolf, laser tag, a rock wall, laser maze, dodgeball, inflatable race, and an arcade.  Amber loves this place, but she isn't up for it anymore.  Hopefully she can slowly make her way through the minigolf with a friend or two.  She's not able to eat a single thing at the snack bar, so I'll have to sneak food into the venue.  What we do so that child can socialize.

(Top) Waiting room at neurologist and then waiting in the exam room. (Bottom) Crash on Monday and her Phantom nails.
I've been looking over my plans for the Renaissance and I'm not sure the projects are going to work out as well as the ones from the Middle Ages.  Amber also doesn't seem as interested in the projects as earlier this year.  I'm currently eying Time Travelers: New World Explorers from Homeschool in the Woods.  We just finished their Middle Ages set (as a supplement to Tapestry of Grace) and will be finishing the Renaissance shortly too.  However, I feel like we could add in the Explorers set for additional emphasis on the exploration happening during the Renaissance.  Amber loves using the combination of Tapestry of Grace and Homeschool in the Woods and I'm planning to purchase most of the Time Travelers set for our American History study next year.  Perhaps I'll just get the Explorers set a little early.

Tuesday we had expected some difficulty with the neurology appointment.  I hate to admit it, but I let the opinions of others color my view of Amber's doctor when our experience did not support those opinions.  We had decided to ask him about a second opinion at the Mayo Clinic, but feared he would not be willing to treat Amber anymore if we sought another opinion.  We had received the results of Amber's antibody test a few weeks ago and thought that was the end of the testing because it came back normal.  It turns out we were wrong and the doctor was simply waiting for our appointment to discuss the situation.  Again, I need to learn to trust my own impressions.

Even though the antibody level was normal, this does not rule out AAG as the cause of Amber's dysautonomia.  A positive result would have made things simpler though.   It turns out more than the one antibody can be the problem in AAG, but they can only test for the one.  AAG can still be diagnosed without a positive antibody result if there are sufficient symptoms and multiple body systems involved. Amber's neurologist maintains her root condition is autoimmune and probably AAG.  He is cautious though, and a little uneasy to make the official diagnosis even though it appears Amber fits the criteria for AAG.  The hangup is Amber's age and the treatment.  The neurologist is an adult autonomic specialist who sees teens because we have no pediatric specialist in the area.  He is uneasy to diagnose a child with something of this nature because the treatment is quite extreme: IVIG with chemo drugs. I can't even wrap my mind around that idea.

Instead of him being difficult, the neurologist encouraged us to take Amber to the Mayo Pediatric Autonomic Dysfunction Clinic in Rochester, MN for confirmation of his "almost" diagnosis.  If they have a different diagnosis, that's fine too.  We need to know the cause so we can try to stop its progress.  I called Mayo on Wednesday to start the process which includes a three page summary, in my own words, of Amber's condition and how she got to this point.  It needed to be faxed today in advance of a Tuesday call back where they will discuss the suitability of their program for Amber and also to hopefully give us an appointment.  It means a three to five day outpatient stay at the Mayo Clinic where Amber will have appointments and tests from 8 am to 5 pm each day.  She'll also have to go off of her medications, which the neurologist just increased on Tuesday.  Thankfully, Mayo is currently booking for late May through late June and we don't have to jump up and go immediately.

(Left) Ready for co-op classes! (Right) Sewing Barbie clothes on her very own pink sewing machine. And Milori, beloved cat of Amber. He loves everyone, especially his Amber.


Of course this has been on my mind almost constantly.  We might finally know the cause of Amber's dysautonomia.  However, knowing the cause might also lead to the beginning of a whole new can of worms and treatment appointments.  I think I might feel better after Tuesday when I know if we have an appointment or not, and when we will be trekking north.

I've got my never ending baking and house chores for the weekend along with costume sewing.  Amber has great plans to see Cinderella sometime before Monday.  It may happen.  That's it from here for this week.

Happy Weekend!

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17 comments:

  1. I am so glad that your doctor encouraged you to go to Mayo clinic. I think that will be very helpful. What a wonderful outing to go to Phantom of the Opera. She will cherish that memory forever. You are doing an awesome job!
    Blessings, Dawn

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  2. Hopefully Amber is able to get into the Mayo Clinic and they will be able to give you some answers. It sounds like she accomplished a lot of work this week even with everything going on.

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  3. I am glad that Amber enjoyed the Crash Course Astronomy videos. I would love to see Phantom live one day but that would require travel to a bigger city. There are four that could within 6 hours drive. I am glad that the doctor encouraged you to go to the Mayo. It never occurred to me that he might be upset by it. I guess another Canadian thing. I will keep praying for Amber and your family. I know how stressful it must be and just the word chemo is scary.

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    1. You already have experience with the actual chemo. I can't even imagine how that felt. This would be lower dose if it's used and if she has AAG. Still a lot of ifs for us.

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  4. Praying that Mayo can find a final diagnose and you can all get some relief for her. I love those nails! What beautiful hands she has 8)

    Keep hanging in there....

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  5. Ok Christy -- how have I not figured out that you are in ATL? Really? I see the Fabulous Fox and it hit me! Where are you located?? I saw Phantom at the Fox years ago and it was just wonderful - we're going to see a private school production of Le Mis next weekend and I can't wait!

    Glad Amber pushed through to enjoy the show, and I'm glad things are rolling for the Mayo Clinic.

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  6. The Fabulous Fox comment got me since I know you are not in Atlanta. There are 3 surviving Fabulous Fox Theatres: Atlanta, St Louis, and Detroit. The was two more in Brooklyn and San Francisco but they were torn down in the 60s and 70s.

    http://en.wikipedia.org/wiki/Fox_Theatre_(St._Louis)
    http://en.wikipedia.org/wiki/Fox_Theatre_(Detroit,_Michigan)
    http://en.wikipedia.org/wiki/Fox_Theatre_(Atlanta)

    http://en.wikipedia.org/wiki/Fox_Theatre_(San_Francisco,_California)
    http://cinematreasures.org/theaters/602 (Brooklyn)

    Sad but I'm glad there are three surviving.

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    1. Yep. My mother used to take the street car to the St. Louis Fabulous Fox to watch movies during World War II. She saw war updates. When I go in and see the ornateness of the theater, it's hard to believe it was a just movie theater back then.

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  7. I've was blessed to see Phantom five or six times when I was a teen (my best friends mum worked in the ticket office) It has been running for years in Her Majesty's theatre which was built in late 1800s and is gorgeous. Happy memories.
    I am glad that you have chosen the Mayo route and I really pray you will find answers and a workable treatment regime.

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  8. I'm stopping by from Weekly Wrap Up. I loved seeing Phantom years ago. (I think I was in college!) I know my oldest daughter would enjoy seeing it now.
    I'm glad you are beginning to have some answers for your daughter's illness and hope that they'll be able to help and treat her.

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  9. I'm glad you guys enjoyed the Phantom! But very distressed to read the not so great news from neurology. I had no idea that chemo would be involved. I was hoping the negative meant that she definitely didn't have it. How frustrating and worrisome for you all. I truly hope and pray that you get some final answers and less harsh treatment protocol from Mayo. In the meantime, try not to worry and live life to the fullest!

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  10. I really love Phantom of the Opera... great to see that Amber is also enjoying it! I really hope that you are able to get an appointment at the Mayo clinic and hopefully get the answers you need for Amber's health. I really do hope they are able to treat her and that she starts to feel better soon!
    Hugs,
    Jo
    xox

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  11. What a trooper! Despite feeling 'down', your girl gets it done! You must be so proud of her! And she should be proud of herself for accomplishing so much with such a great attitude! I can't imagine any of this being easy for any of you!

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    1. I'm always proud of her. She has a quiet strength and determination to live her life. She doesn't quite understand how special this is.

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  12. What a strong young lady. You must be proud. I'm just stopping by from Weekly Wrap up.

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  13. Hi,
    I hope a helpful diagnosis and treatment can be found for Amber. I've followed your blog for awhile. I have chronic health issues, but am lucky enough to live in Rochester, MN and get my care at Mayo. If/when you come up, I'd be happy to assist you however might be helpful. It does depend on timing--my family has some trips in June. This is my husband's email but hopefully you could get through to me if you wanted--I can't post a comment with any other method.

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    1. Oh, how lucky you are to live right there by Mayo. Thank you for the kind offer too. I have no idea, whatsoever, what we are actually getting into up there so I appreciate the offer.

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