My Story

My name is Nathaniel Saint and I was born in July, 2007. I had a stroke at birth and as a result, have left sided hemiplegia, global delays in development and a history of seizures.  I had a hemispherectomy on 1/16/09 at UCLA and am now Seizure Free! 

"...this happened so that the work of God might be displayed in his life." John 9:3 NIV 

Journal

Wednesday, June 17, 2009 2:21 PM, CDT


Nate had another MRI yesterday and a visit with his neurosurgeon Dr. Shaffron to follow up on the shunt surgery.  We were hoping for better news, but kind of had a feeling it might not be.  His MRI showed fluid building back up in his head.  It wasn't a lot and is a slow build up, but the Dr felt it was enough to warrant concern.  He adjusted the shunt pressure to drain faster and hopefully this will work.  If not, he will need to tap the shunt and see if the fluid is coming out.  That is the only way they can tell for sure it is working.  He felt it was working tho and just the flow needed to be increased.  So we will find out in a month or so if it is working or not when he goes back for another MRI and follow up.   

He is doing better in his walker and seems to like standing and stepping in his AFO.  He is also very vocal and loud during the day making all sorts of new noises.  It's great he's being verbal and hopefully these will turn into words soon.  And good thing his baby brother can sleep through almost anything! 

It has been really tough on both of us with Nate's needs and the new baby, but especially me since I'm the only one who can feed Nick.  He doesn't take a bottle well and likes to eat A LOT!  I don't get much of a break as Phil has to take care of Nate.  Nick is really fussy in the evenings and by the end of the night I am so exhausted I can barely see straight.  I know it will get easier eventually, but for now these boys are kicking my booty!


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E-MAIL AUTHOR

cmsaint@msn.com

HOSPITAL INFORMATION

Phoenix Children's Hospital
1919 East Thomas Road
Phoenix, AZ 85016
United States
(602)546-1000