Another Tender Mercy: No Neurofibromatosis

It seems fitting to mark my 100th post with another Tender Mercy of the Lord in our lives – this blog started with a post on recognizing and recording the Tender Mercies given in our daily lives.  (You can read that post here.)

In May I took JuneBug to the pediatrician to see if she needed speech therapy.  She was 4 at the time and I was getting concerned when I listened to the 3 year old sister talking.  At this visit, there were several things noticed for the first time:  she failed the hearing test, she had a heart murmur, and she was suspected of a neurological issue.  She probably needed speech therapy, but suddenly that seemed a lot less important when I started reading up on the neurological issue – it is called Neurofibromatosis – and basically, it is tumors that grow on a person’s nerves under the skin, in their eyes, in the spine, and the brain.

Symptoms include pigmented spots on the skin, hearing issues, heart issues, eye issues, nerve issues, chronic pain, learning and speech issues – oh, my!  We got an appointment with the St. Louis Children’s Hospital NF  Clinic.  Scary – they wanted a family history going back to her great-grandparents and including siblings of everyone on that chart – complete with major medical diagnosis.  It seemed quite overwhelming.  The problem was the appointment wasn’t until AUGUST!

But in His goodness, the Lord allowed all tests to be done fairly quickly – she has normal hearing (borderline on the lower end), no heart murmur, and then we went to her eye specialist.  (She has another condition that he is watching).  This particular doctor is the only one in this area that is able to work with the NF Clinic in St. Louis and he was able to tell us that she didn’t have the tumors on her eyes – he also said that she totally did not have the signs of a child with NF.  That was a relief and took some of the pressure off my mind.

In the meantime, the insurance dropped the contract with the St. Louis Children’s Hospital (nice, huh?) so we had to reschedule for another NF Clinic – like those are a dime a dozen.  Fortunately, Cardinal Glennon Children’s Hospital two blocks away has a NF Clinic and we were able to schedule there for SEPTEMBER!   In the meantime, we went on the waiting list for Speech Therapy at our local hospital – who called last week and had a opening.

We went to the NF appointment last week.  It was such a relief to know one way or the other – and in the opinion of the doctor, JuneBug doesn’t have NF.  (She will have some speech therapy, though. ;))

What an answer to the many prayers of ours – and the many prayers of so many of you.  Thank you for your faith, love and support as we dealt with this.  I have been able to recognize the many, many ways the Lord has watched over us and taken care of us through your actions.

I am thankful that He raises up the ways and means to help each of us, often by using others as instruments in His Hands – what a wonderful way to teach all of us lessons we need as we sustain, nourish and love one another.  


5 thoughts on “Another Tender Mercy: No Neurofibromatosis

  1. Brenda

    Great News!!!! I never knew what Neurofibromatosis was until you explained what the symptoms are, I am greatly relieved that JuneBug does NOT have this. Oh, how I send my love and encouragement for those that do have this!! As for Heavenly Father sending special people in our lives to bless us….I agree with that completely : )

    1. sheraz2011 Post author

      I feel such compassion for them…some of them are terribly afflicted. It makes me feel so sad for them, and yet many of them lead such amazingly fulling lives. We could learn some lessons from them.

  2. Connie Yeates

    What a relief for you to finally have answers! I am glad that they are of the opinion she doesn’t have it. Some times, the tender mercy is the knowing because then you know what course to take. I agree about people being intruments in the helping us. I wholeheartedly think the many in the medical field are in this group. Without their knowledge we would suffer much worse than we do-both mentally and physically. When becoming paralyzed due to back issues, I received a blessing that specifically stated that I would be healed through medical help. I have recommended that sort of surgery, but have been unwilling to give the doctor full credit. He was the instrument through which I was blessed. I do not feel comfortable with not giving credit to the Lord. It was a direct result of prayer and fasting. I truly feel that it was through the Lord’s hand guiding the doctor that I can walk again.

  3. karenspath

    I, too, and very pleased to hear that Junebug doesn’t have NF. It really is an answer to the many pleas and prayers for her and for you. You are so amazing with your ability to cope with things that many of us would have been buried under!


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