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Raising Special Needs Kids Raising Special Needs Kids

More to add to my plate but I'm full already....

Posted by on Oct. 7, 2012 at 12:45 AM
  • 7 Replies

shruggingEvery 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.

 

by on Oct. 7, 2012 at 12:45 AM
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Replies (1-7):
i.heart.myboys
by on Oct. 7, 2012 at 9:56 AM
I'm so sorry mama. I know there is so much we can handle sometimes but know that god wouldn't give us more than we could handle. I know there are times that we feel like we are about to break ourselves when there is so much going on but you can do it mama.
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darbyakeep45
by Darby on Oct. 7, 2012 at 7:15 PM

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!

sammygrl77
by on Oct. 7, 2012 at 8:25 PM
(((Hugs)))) you have so much on your plate. I wish I could help in some way.
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letstalk747
by Joy on Oct. 8, 2012 at 12:50 PM

yup , full plate  i know this one

lifeisajoy
by on Oct. 8, 2012 at 3:19 PM

Huge hugs--so so much!! Take Care and thinking of you and praying you have positive support throughout this!

babymamadrama06
by on Oct. 8, 2012 at 3:23 PM
Im sry you have all this on you but I would kill for a genetics doctor to take that much interest in my kids so I could finally find out what happened & if their kids will be born the same way.... I have so many questions with no answers & nobody will take time to help us
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natesmom1228
by on Oct. 8, 2012 at 3:45 PM

HUGS!! I hope things calm down soon.

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