Some good news and some bad news

Wednesday, March 7, 2012
Off to the beach...

Okay the good news first, Harry's genetic tests for both NF1 and Spred 1 were both normal.  That sounds like GREAT news, right?  Well, it is and it isn't.  I got the results almost 2 weeks ago but just got the opportunity to speak with the genetic clinic yesterday to get more information.  So here is the situation... Harry meets one of the clinical criteria clearly and is extremely close to meeting the second (he has 5 Cafe au lait spots and the criteria is 6).  They strongly believe he has a version of this disease called "segmental NF."  This is a form of NF1 where not all of the cells have the mutation therefore, genetic testing often does not catch the mutation.  Typically, people with segmental NF have milder cases and live rather normal lives but not always.  They can suffer from all the complications that people with full blown NF1 suffer from, it is just harder to get a definitive diagnoses.  At this point, Harry is doing very well.  Hopefully, we will not need to think about NF1 again until he decides to start a family since it is a genetic disease and he could pass the full blown illness onto children.  We would appreciate your continued prayer that Harry does NOT develop any more NF1 symptoms.  He took the news pretty hard even though I tried to explain to him that really this was GREAT news (at least it is not full blown NF1).

I am SO grateful that God had such a BIG plan for our family.  It is no accident that Harry has an adopted sister.  Harry and his future wife will have some decisions to make someday about how to grow their own family and I have no doubt that having spent his life adoring and loving his little sister will factor into that and keep his heart open to adoption.


Okay, now onto my heart thing.  Thank you for all the kind comments and thoughts. They meant SO much to me.  I love this blogging community. One thing the doctor assured me of is that this condition is NOT anxiety or stress related.  See, I have extremely low blood pressure and when I stand it is not getting to my head and my heart accelerates. So I constantly feel like I am going to pass out. That is an autonomic body response and it is not happening in m body. There is an illness called Postural Orthostatic Tachycardia Syndrome.  I am fitting the description for that.  It is not caused my stress or anxiety at all.  In fact, I have not felt stressed in the last few weeks.  I had total peace about Harry's illness and I will tell you why in a minute.  I have an appointment with a cardiologist in a few weeks to try to get a real diagnoses.  In the meantime, I am trying to sit as much as I can and elevate my legs (which is very hard when you are a Mom to 3 very busy kids), cut out caffeine (I did not drink much anyway), drink a ton of water (which I do anyway) and other things the doc has recommended.  So, what has helped me with stress in the last few weeks/months???  It is a scripture verse...


Matthew 6:  25-27 tells us:

 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

I had read this passage many times before but when I was worried about Harry's illness a few months ago, it really spoke to me.  I was particularly changed by the last question.. Can anyone add a single hour to their life by worrying?  NO.  Something huge shifted in me and I gave all my worries to God and I have felt great ever since.  If I catch myself worrying, I simply ask, "is this worrying adding one hour to my life?"

I recently attended a Bible study and the theme was that God is the event planner of our life.  He has a design for each day of our life.  It is our job to show up in obedience and use the gifts He has given us praising Him all the while.  It is such a relief to think that He is planning it all out for us.

32 comments:

  1. I'm crying because that is the EXACT verse I needed to read this week. Thank you!

    Sending up prayers for you and Harry. I really believe that having Kate as his sister is going to make his future decision but a blink. God really does always know, doesn't He!

    KK

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    1. I am so glad that verse spoke to you. Sometimes, we need to hear things at just the right time. Let me know if there is anything I can pray for you about. If you leave it in a comment, i will not publish it but will pray for you.

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  2. That was a perfect bible verse to quote.
    Have you read the Mitford Series books by Jan Karon? The stories are simply a wonderful inspiration on the little things we can do that end up rewarding us even more in the end. I suggest you start on the book as you prop your legs up and start feeling a little melancholy.. They will lift your spirits.

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  3. I read that A LOT when I was laid off.
    I turned that around and thought of it as a gift...to grow and learn more about myself.
    It isn't easy but having the reminder is a HUGE help!

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  4. Having to deal with health related issues is never a good time, especially when it's more than a cold or flu virus. I really feel in my heart that you and your family will be okay. I think your scripture is perfect and couldn't have been found at a better time. Best wishes to you. God knows of your needs and will make all things beautiful in His time.

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  5. i need to catch up on your posts (i've been off my computer for awhile!).....thank you for the update on harry. when you first shared was the last post i read. i think of your family and will keep both you and him in my prayers. God's word is indeed truth!

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    1. Thank you so much Sara. You made me smile today. I have read your blog forever but I never knew you ever read mine. Thank you for your prayers. I am praying for your new baby!!!

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  6. I'm so happy to read of Harry's results -- you called it! That's mama intuition is right on, as usual. We will certainly continue to pray for an asymptomatic life for your little man. And as for you, you should just remind that lovely family that you HAVE to keep your feet up -- doctor's orders! ;-)

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  7. Kim, I am sorry you are having to deal with two major things at once. My heart tells me you both are going to be more than fine, but I know until you hear that definitively you will not totally be at peace and I understand that. Please keep us posted. I know God is looking over you and your beautiful family. Sending you a great big hug!

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  8. So glad to hear all the medical concerns in your family are getting answered. I love that you share your style,family,faith,and fears with us. Thank you for that. you have helped strengthen me along the way.

    Do you make up your own Bible studies or do you get them somewhere? I would love some help in that area.

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  9. HI Kim, I too love that verse, one of my favorites!
    I also experience low blood pressure and fainting easy, getting enough iron helps me not feel so tired. I hope you feel better soon! And when one of our children needs us, well just know that by your sharing he has more prayers! Thank you for your blog.

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  10. Best wishes for you and your family. I'm happy to read that he does not have NF1, and we will continue to pray for you and him. I love how you talked about " It is no accident that Harry has an adopted sister. " You have a great family!!!! All the best for all of you!!!

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  11. I'm so happy with his medical report and at least you are getting answers. I often wonder why as a Christian I worry about anything...especially my children. It really doesn't help them or add anything to their lives. Spending my time praying would be so much more worthwhile:) Praying for you my friend.

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  12. How often does NF occur? The little girl that I babysit told me that she has it and she has a bunch of the birthmarks. She also has a big bump on her ankle that she says sometimes hurts her. I don't think it is really affecting her life at the moment, and her mom has never told me anything about it, but do you know if it can sporadically flare up? Just wondering because you seem to be very informed about the disease! Thanks!!

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    1. The thing about Nf is that every single case is different. Some people live a somewhat normal life, some do not. The bumps are tumors and people can get just a few or they can cover their whole body and be quite disfiguring. That is the main thing that happens with Nf1...you get tumors. The tumors can be cancerous. Children are much more likely to get leukemia if they have NF1. Brain tumors are common in NF1 as are learning disabilities and migraines and other things. I am not sure how young the girl is but many children get optic nerve tumors and can lose their vision. Luckily, Harry has aged out of that danger. It sounds like the girl you babysit has a mild case so far. The scary thing with this disease is there is no predictable course. I will pray for her.

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  13. Hi Kim,
    I've been reading your blog for a few years. I want you to know that I really admire you and your family. I will be praying for yours and Harry's health. Ryane.

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  14. Keeping Harry and you in my prayers. Take it easy! Love the verse! Thanks for sharing.

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  15. You guys are going to be just fine. Keep the faith always.

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  16. Dear Kim,

    I have followed your blog for some time, but I believe this is one of my first times commenting. I will pray for you and Harry.

    You came to mind this morning at my prayer group because a dear friend shared that her daughter (5th grade) was diagnosed with Candida. She appears to have so many of the symptoms, and a rash is what caused her doctor to put the pieces together. I thought perhaps you would have some insight or advice for my friend as they try to figure out how to help their daughter. Will you email me so I can pass along her contact info? gmng2002@yahoo.com

    Thank you,
    Ginny

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  17. I'm sorry if I'm repeating this comment. I've followed your blog for awhile but this is my first time leaving a comment, I believe. I will pray for you and Harry.

    You came to mind this morning at my prayer group because a friend shared that her daughter has been diagnosed with Candida. I thought you may have some advice or insight to share with my friend as they try to figure out how to help their daughter. She has many symptoms, and a rash is what caused her doctor to put the pieces together. My email is gmng2002@yahoo.com. Can I put you in touch with my friend?

    Thank you,
    Ginny

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  18. Wow! I admire how at peace you are with having all this on your mind - I tend to worry myself silly---I Love that verse and will be using it over and over! Also, we will be keeping you and Harry in our prayers! God is good!

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  19. Hey Kim,
    Not sure if my comment went through. I lost connection right when I hit submit. Either way I just wanted to let you know I have been thinking about you so much. I am going through a bit of a POTS flare right now after doing really well for almost a year. I know how frustrating it can be to not feel physically up to doing what you want to do. I only have one little girl about Kate's age so I can only imagine with three! Hope you are feeling ok and your spirits are good. Praying for you! Oh and I found you on FB through Sibi and sent the request. :)
    Ashley S.

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    1. Thank you Ashley. Today is the first day in a week that I almost feel normal. I am not sure what changed. I did get a massage and I have taken some magnesium. My heart rate has come down and I am not constantly light-headed today. I am hoping this stays this way for a little while. I will pray for you too.

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  20. My heart aches for what you're going through, Kim. But what joy in knowing that He knows every hair on your sweet boy's head! And He has a plan for him, a good plan :)
    It's wonderful to hear that He is ministering to your heart during this time... He is so good!

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  21. Will keep Harry (and you all) in our prayers. He is one special little boy and has always been so spiritually sensitive. Thank goodness God knows all the details! (And...I finally took the Christmas lights off the porch/blog. =)

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  22. That verse has helped me many times. I'm so glad to hear that you're getting some answers and feeling the "peace that passes all understanding" . God does have big plans, I'm sure of it.

    Gin =)

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  23. That verse is perfect. Just praying excellent health for you and your family
    and that you will just continue to allow God to be bigger than anything and keep letting go of worry.

    You are awesome know this! ; )

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  24. I couldn't find your post from last year when you were trying to decide if you should send Kate as a young 5 or wait a year. I would love to hear about her experience this year so far. We are in the same situation as you were last year and I keep going back and forth - such a hard decision to make. My e-mail is pjfreed@charter.net

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  25. What a beautiful verse Kim. Kind of puts everything into persepective, doesn't it?

    I missed the post about your heart troubles. I am so sorry that you are going through this and I hope that you will get more answers after meeting the cardiologist. We will continue to pray for both you and Harry!!

    Enjoy your Sunday~

    xo,

    Lisa

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  26. Bless you, Kim ~ I am a new follower ~ ♥♥ ~ Anne

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  27. Keeping y'all in our prayers. As a mom to a child fighting leukemia right now I have learned that I have to lean and depend on God for things, I can't do all the work and worrying by myself otherwise I wouldn't have the strength to be there for my daughter. Hang in there, blessings, Trish

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  28. catching up with you all and on harry's health news. so happy for the good news. you and your family are a blessing to so many! donna

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Thank you for your kindness.