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!