April 21, 2011

So not more than 5 minutes after the dr left I started with diaper changing ( yes they still have me change his diaper ) and he was squirming around and didnt much like the cold wipes ( which is improvement as before he didnt even flinch) shortly after that he started fussing and actually crying!! I immediatly got my phone out between tears to video tape this event because it hasnt been since the friday after he was born that he has actually cried! Im sure the nurse thought I was loosing it as im video taping and crying my crying baby, she then proceeded to question if I wanted to feed him and what size nipple he had been using ( she is a new nurse who just came on @ 7) and between me being estatic I explained he hadnt been eating on his own yet, so we got him all set up and he started eating like someone had starved him ( as u can tell from pictures hes not starving) I cannot believe the joy this has brought to me today!!! Please pray this continues throughout the days!!!

So from here they have ruled out damage to the brain, problems w brain function, infections, virus, and the scary and heart wrenching part is now they start testing for rare genetic disorders, most of which these tests can take weeks to even possibly months to get results for, as these tests are rare enough they dont even do them in this area. So today tgey will be doing an eeg again and testing for a very rare b6 deficiency, the neurologist said shes only seen a couple in her entire career but its a test they can rule out right away, I am praying with all I have that this is the answer because it is easily treated...

So for today I hold on to the good news and stuff he did this morning and just take every little piece of good news and cling to that