Some good news and some bad news

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.