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News!

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New baby news

 

We had Jami’s appointment on Thursday, where we learned that our new family member will be another girl. We are generally excited about the news with the exception of Elijah, who wanted a brother. We have narrowed the list of names down to two, which are Lila Faith or Verity Faith. Lila is the name of Jami’s great-grandmother and has familial significance (Jami and her great-grandmother share a middle name) so naming the baby Lila Faith would incorporate a name from both families and would carry on the tradition of naming a girl from Jami’s maternal lineage. The name Verity would be a new introduction to the family. Verity was a popular Puritan name, which is the feminine form of the Latin word veritas, meaning truth.  Feel free to offer your opinion on both names. We may just wait until the baby is born and we have a chance to see whether she looks like a Lila or a Verity.

 Probable Diagnosis! 

We also had an appointment on Thursday with the neurologist that my primary neurologist sent me to for a second opinion. It was very encouraging. He ruled out Parkinson’s immediately and said that my disease is originating in my spinal cord. Specifically, he believes that there is a softening of the ends of the corticospinal tractswithin my spinal cord. Even more specifically, he believes that it is in the lateral corticospinal tract (see 1a in image). The result is hereditary disease known as Hereditary Spastic Paraplegia (HSP) **Also see this site for a good explanation**. . Another possibility is a disease known as Primary Lateral Sclerosis (PLS). These diseases look so much alike that it may take a couple years to distinguish them apart (Here is a chart that delineates the difference between the two). The good news is that both are treated in the same manner so I officially began treatment on Thursday night. Neither one can be reversed, stopped or slowed down. They are treated by treating the symptoms. The doctor put me on a drug called Baclofenand the early results are positive.

 Miscellany 

We are slowly adjusting to life as it is. My doctor has encouraged me to apply for a disabled parking permit, and I am already using a cane like a pro. Life is much busier right now as we are also beginning to plan a little remodeling for the new baby (nothing major, just switching rooms, painting and redesigning). 2008 will be a busy year for us and we certainly appreciate your prayers.

  

19 thoughts on “News!

  1. OMG! OMG! OMG!!!! That is awesome!!! Woohoo! Girls rule! I’m sorry about the other stuff. It sounds awful 🙁 But yay on the new girl!

  2. Ryan

    That is great news Aaron. Thanks for updating us. I will continue to pray for your family.

  3. Congrats my friend! I am happy for the new girl and I am glad that we can start calling your disease by a name now. Or at least we can call it one of two names. Too bad they are so hard to say!

  4. So uh…. no one has an opinion on the name?

  5. Verity for sure. I think they are both excellent names but I prefer Verity. It is unique and cute. I love the middle name of Faith. How appropriate for your family with your faith in God and such!

  6. I like both names a lot. but it’s hard to pass on a name like Verity. Very cool name and I’ve never heard it before.

  7. Ryan

    Both names are beautiful. If the question is which name do i like better the answer is Verity. If you are asking what you should name her, the answer is Lila. Trust me. Jami wants you to name her Lila. If it were my wife, she would probably say she likes both names but would be secretly wanting me to pick the family name. Gals like this sort of thing. And how cool would it be to carry on the name! Lila bro. Trust me. Her name is Lila.

  8. noelle connors shelton

    congratulations on finding out you are having a girl!! i am also expecting and am due on august 9th and i’m having a girl! we are going to name her lily!
    you and your family will be in our prayers. we will be praying for you as you deal with this disease and will also pray for complete healing! take care and god bless!!!
    noelle
    ps. we have a website at http://www.babyshelton.aboutmybaby.com

  9. Hi Noelle, Thanks for stopping by to visit. I saw on your myspace page that you are expecting as well. How exciting! Congrats to you and Mike. Our God is such a good God isn’t he?!! Such blessings! I just quickly read through your website and it looks very nice. I’ll have to stop by again tomorrow when I have more time. We appreciate the prayers and pray that God’s grace will be seen through our experiences. Keep in touch!

  10. Yeah, I agree with Ryan.

  11. Whatever Anthropolis! You just said U like Lila better.

  12. Hi Aaron,

    I just came across your blog and wanted to compliment you. I’m a student nurse and I’ve really enjoyed reading your thoughts about your illness. Are you in healthcare? You seem really comfortable throwing around terms like “corticospinal tract.”

    I LOVE Jurgen Moltmann’s work on God and suffering. The Trinity and the Kingdom of God is great too.

  13. Oh yeah, both names are beautiful, but I think your little kiddo will probably get fewer questions if she were named Lila. And it is kinda neat that it is a family name.

  14. Welcome Rachel! I’m actually not in health care but I studied Philosophy and Theology so I’m used to throwing around terms that mean nothing to most people. In all seriousness, I’ve been reading a lot about neurological disorders since this whole thing started with me and it has done a lot to enhance my vocabulary. Feel free to correct me if I am misusing some terms or am failing to understand the diseases.

    Moltmann is something else isn’t he?!? He’s an amazing thinker who’s thoughts on suffering influenced me long before I really knew what is was to suffer. He’ll never know this, but I think God used him to prepare me for a life of sickness. I suppose I’ll get to thank him on the other side. Maybe he’ll allow me to sit down and chat with him on the banks of the river of life while snacking on a fruit from the tree of life above us? Or maybe we just won’t care at that point? Either way his earthly influence on me has been immense.

    Thanks also for the thoughts on the baby’s name. We have pretty much decided on Lila. I think it will be kind of nice to carry on the family name. It isn’t often that this is done maternally!

    I see you have a blog too. I’ll be reading it shortly. Actually, as I’m typing, my lovely bride is reading me your thoughts on Rob Bell and we’re both laughing. Stop by often and offer your insights. I’d love to hear more!

  15. Actually, you can tell Dr. Moltmann what you think of his work. I got his address from another theo-blogger:

    Prof. Dr. Jürgen Moltmann
    Biesingerstr. 25
    72070 Tübingen
    Deutschland

    I’m sitting in on an upper-level religion class on Moltmann right now so hopefully I can offer some more thoughts on him on my blog. Thanks for visiting, by the way!

    I hope everything continues to go smoothly diagnosing and treating your neuro problems. You probably know more that I do about it, to be honest!

    And I love that your profile pic is Rublev’s icon of the Trinity. I could go on and on about how much I love it. Are you Orthodox?

    Anyway, nice to have your acquaintance. I’ll put you on my google feed and stop by again soon!

  16. Wow… I don’t know if I would have the courage to write him!Please do offer any insights you have into Moltmann. I never took any classes on his work because I simply wasn’t interested in him at the time.

    I’m stunned that you recognized Rublev’s Trinity! I don’t think anyone else has ever commented on it. There is so much packed into a seemingly simple icon. The colors, positioning, hand gestures…. you are right… it can go on and on! I’m not Orthodox, but I do feel that we have a lot to learn from them. I’m not too keen on how the google feed works, but I’m going to add you to my blogroll for easy access to your site. I enjoyed your insight and humor.

  17. Hey Mr. Aaron! Maybe you already answered this but have they ruled out ALS yet?

  18. Well????

  19. Sorry Serena. I just realized it’s been over a month since I’ve been on here. Life has a way of getting busy! To answer your question, ALS cannot be ruled out completely in motor neuron diseases until after a couple of years. ALS progresses very fast (death occurs within 3-5 years) so realistically, if it was ALS, we would have some type of indication by now. I do not have any lower motor neuron symptoms (respiratory problems, fasciculations, amyotrophy, etc.).. so they odds are very low. I think my neurologist said something like 99% sure that it is not ALS.

    I hope I answered your concern. If not please let me know.

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