Thursday, March 18, 2010

Update on Daniel's appt

We had a good appointment today.  It was much easier than the last one - thankfully.  Daniel did really well and I felt at peace too.  Thank you for praying!

We arrived after lunch and spent a few minutes at the "art cart" doing dot paints before being called back.  The doctor did a variety of vision tests.  One of them was for colorblindness.  Daniel is colorblind (which I knew), but I had not seen the eyes tested independently for this which apparently can be another issue with the optic nerves. 

He was dilated and we went back to the waiting area.  We read books, played with toys, did another picture and then were called back again.  More examination.  I could hear her commenting on his optic nerves.  They apparently look very unusual still.  She showed me a picture of them the last time and it is clear that something is not quite right.

Short version - Daniel has Optic Nerve Drusen.  This is calcification on the optic nerves.  This puts pressure on the nerves which is how it was detected.  In children, this is typically not a problem and there is nothing that can be done.  We won't need to return to see this specialist, but will continue being seen by his pediatric opthamologist.

Long version - Well, you can click on this link - Optic Nerve Drusen - if you want to read more about it.  There is currently nothing that can be done for this, though the doctor did say that she thought there might be a cure by the time Daniel is an adult.  I'm trying to be cheered by that, but honestly am not there yet.

He faces the risk of loss of vision in adulthood.  The doctor said that is was similar to how a loss of blood flow can affect the heart and lead to a stroke.  The loss of flow to the eye through the optic nerve can lead to damage there.  There are some risk factors (such as Drusen) that can not be eliminated, but that there are other things that he can do to try to help avoid this fate.  Again, similar to what you would do for your heart - eat well, keep cholesterol low, keep blood pressure low, etc.  I remember during some of this discussion thinking, I didn't need to know all of this about the heart, but then she said it was the same for his eyes. 

So, here we are.  It is just a wait and see game.  I know that I'll try to put it out of my mind.  That is how I tend to deal with things.  I'm trying not to fret or be sad about what *may* lie ahead for our little boy.  The thought of losing vision is just a hard one.  I know it's not definite, but I hate that it is even a possibility.

I'm wondering now if I need to start back a medical notebook for my family.  Something listing all of the various issues each are facing.  I kept this well for Eliana and now have a notebook for Joshua.  I'd love to hear what any of you have done if you are doing this for your family.

I'm exhausted - physically and mentally right now.  I think things will be better after a good night's sleep.  I need time to pray and think about this and just hand it over to God.  Worrying will do no good.  In some ways, it would have been easier not to have even known any of this.  (How is that for wanting to put your head in the sand?!)  I wonder if there is a lesson to be learned.  Maybe just another reminder to cherish each day, each moment with my children.  Live fully and with much energy.  Live without regrets.  Love completely and with abandon.  Yes, those are good lessons and good reminders.

I'm thankful for our precious little boy and the lessons he teaches me daily.  He stretches me and blesses me.  I love you Daniel!

Blessings

Leslie

 

7 comments:

  1. I am sorry it was not the answer you would like to have. It is scary not knowing may come. As for the medical notebook. I keep a notebook for each child. It has their medical reports from various doctors and an outline of the body on the first pace. There I have written in their issues from head to toe. It makes it easier when some of your kids have a dozen or so diagnosis to run down them starting with the head. That is usually how I real it off to docs.

    Blessings,

    Dawn

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  2. I am glad your appointment went well and that you and Daniel did so well. I hope tomorrow is better.

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  3. healthyhomeschoolMarch 18, 2010 at 5:14 PM

    Oh, Leslie. You have every right to be exhausted. I'm sorry about the news. I am sure you're probably doing the same things I'd be doing: clinging to the hope and the positives in there. You and Roger do such a good job at educating and caring for your children, and that is so much in Daniel's favor. He will be armed, as he gets older, to do what he needs to take care of himself. And he's getting good medical care from the start. I'll be praying for you all. I hope you get a good night's sleep.


    Lynn

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  4. Thanks for the update, Leslie. I was thinking about it yesterday as we were getting settled back at home.

    Missed seeing you, but we'll get together next time!


    Melissa

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  5. Leslie-I am glad that the appt went smoothly (for the most part-that is half the battle/exhaustion) and I am so sorry to hear your son has this to add to his list. Now, not that I would want this for myself or my children, or anyone else-let's face it-we want all the goodies the Lord designed us to have to work perfectly....but because my husband has worked with folks with vision deficits/blindness for over 24 years, I have seen and know that it doesn't mean the person has less of a life, or cannot live out their dreams due to blindness. There are so many advancements being made that assist them-so it is not a death sentence.

    I think if one just tries their best to keep the disease from further damaging the optic nerve, continues to pray and takes it one day at a time-it will be more manageable. If you and Roger need to literally speak to someone who has been in this field for years-do feel free to email me and I can give you Dave's number. He should help calm your fears and answer a lot of ??s you may have.

    And I do think a medical notebook would be very useful. It may help you more than anything-and darling-I am sending you big hugs and prayers. You/your fam have been thru some major health issues for several years-it is bound to deplete you. Ultimately, the Lord is control and He will walk you through this valley.


    Sheri

    What's in the Box?

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  6. Hi Leslie,


    I am so thankful for the Father's peace you and Daniel experienced yesterday! I'm sorry things are not how you would wish, but I know God will see you through this and will walk right beside Daniel, no matter what he faces in the future.


    I am praying that you can get some much needed rest and be renewed and strengthened in the Father's presence.


    Love you and big hugs,

    Scarlett

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  7. Sometimes not knowing is easier. Or at least it *seems* easier. Knowledge can be a heavy weight at times. I'm glad your sweet boy tolerated the appt well, and I'm praying that God will encourage you both in just the ways you need.


    Blessings,

    Pam in SE MI

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