More to add to my plate but I'm full already....
Every 6 months my DS sees a CP doc and gentics doc. The Genetics doc always takes blood to run test on and urine. None of the test have showed anything too abnormal some small differences in what they should be but nothing that they have had conserns about until now. One of the blood test like a year and ago came back with a level that was slightly low (I dont remember what it was) well the next test (6 months later) showed the same level a bit mote slightly low and now this time it was even more low but by almost half of what it should be. So now his doc calls me Friday tell me that news and that he thinks that my DS has a rare Congenital disorder of Glycosylation. So now my DS has to have more blood work done along with a bunch more test. His genetics doc would like to do a MRI of his whole body but knowing that my DS doesnt do well with being put under that is out of the question.
I fear for my oldest DS this is something that is genetic and it is very possible that he may pass it along to his childeren someday. I hope to find out all I can on this and I hope that we will know wheter or not this is something that my oldest DS can pass along so that he knows about it.
I will admit that Im a reck right now! So much has gone on in my life lately. My grandpas health going down hill then me becoming his POA then he passed away and I went back to tech school. Im currently in the middle of clinicals and starting the transition process for my youngest DS from birth-3 to home bound school along with home schooling my oldest DS.
My heart goes out to you mama...hugs! I'm sorry this is all coming at you right now...you can handle this...stay strong and know I'm thinking about you! Hugs!
Huge hugs--so so much!! Take Care and thinking of you and praying you have positive support throughout this!
Finally!
- JeneneRose
on Oct. 7, 2012 at 12:45 AM