10.09.2009

A very long post..............



Happy Friday everyone! I have had a lot going on lately and wanted to share a quick blessing.
As some of you know we found out last year that Mark has a severe case of scoliosis. (this is an actual picture of Marks back 74% curvature)
after that the CHKD specialist (Dr. Fox) noticed that Mark had what are called Café-au-lait spots and wanted us to have an MRI done to make sure he did not have a Neurological disease called Neurofibromatosis, I didn't know alot about this, so I googled it (not a good idea) when his MRI came back clear we were all very happy and the doctor told us we were blessed. And shared no other information with us at all!!!
This link is a reputable site and explains the two different types of NF.

So back about a month ago Mark started telling me he was having dizzy spells, we finally got an appt. to see the family doc. and he suggested we go and see a neurologist at CHKD, so I was like ok he is going to do a little exam tell me something easy to fix it (we think he has low iron, going to check that soon)
BUT instead he tells me that Mark does have NF and he wants to do an MRI of his head to check things out. Well you can just image that that hit me like a TON of bricks. I could not understand why Dr Fox would tell us he was clear of NF, I guess he was checking for NF-2 So the neurologist tells me that he has NF-1.
Mark has 5 of the 8 signs. This disease strikes 1-3,000 people and is Genetic. There is no cure and no medications or anything, it is just something Mark will have to live with for the rest of his life. There is so much unknown about how it affects individuals or how quickly. Mark is Ok with it, the thing that bothers him the most is his back, it hurts almost all the time and the only thing that can be done for that is exercise.

We had MRI on his head Tuesday night and thank the Lord that came back fine, so we wait for a year and go back to Dr Frank and see if he has progressed at all. In the mean time we keep an eye on his neurofibromas he has about 5 right now, they are small so we need to make sure they don't change. And I have am having his eyes test by an ophthalmologist as the disease causes glaucoma.
That is a very heavy story for a Friday I know, but I feel like I need to let people know about this disease, because obviously it can go undetected for at least 16 years as in Marks case.
God has blessed us once again and I Thank him everyday!

8 comments:

Mandy said...

OMG, Girl. I am so sorry about this. I hope the exercises help him control the pain. That is a lot for a 16 year young man to live with. I hope a cure or at least some type of medication is found to help with his NF. Ya'll are in my prayers!

Missy's Blog said...

Wendy ... you are all in my prayers as well.

I too hope for a cure and medication of some sort can be discovered/made to help him through this.

Please let Mark know we are thinking of him.

Shell said...

Oh Wendy - my heart goes out to you and especially to Mark.

I know just how you are feeling right now - it is how I felt when we found out about Cait. So much unknown, and it is terrible when you feel so helpless.

I am just so glad they have found it now - and although so far there is little in the way of cure - looking at the CTF site there is a lot going on looking for one.

Make sure you join the support groups on CTF and I see there is even one on Facebook! They really are a help especially when you can talk to parents/kids with the same thing.

Huge ***hugs*** to you

Rhonda said...

Wendy you are in my prayers. That is a big thing to have to face for an adult...much less a sixteen year old. I hope the exercises help him. Lots of love and prayers being sent you way.

Michele said...

OMG...had no idea Wendy! I will keep you all in my prayers. Can't imagine being told this about your own child. Hope the exercised will control his pain! Try to stay positive:-)

Kelly said...

Wendy, I am so sorry! I will definatley keep you all in my prayers. I hope the exercises will help relieve some pain for Mark. Please keep us all updated! Sending many hugs your way!

Mary Lou said...

Wendy, I am so sorry too! Thank goodness they found what was wrong so at least you all know what you're facing. Keeping all of you in my prayers and tell Mark to do the exercises. I know they've really been a save in grace for some other people with other medical condtions, but hopefully they'll make him feel better too!

Izzy said...

Hugs & prayers sweetie.

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