Okay what a day!!! We went to Children's today and delivered all the toys that were donated (thank you all again!!!)
So we have some more news from the Doctor's working on Hunter's case.
We were given an article about 2 boys comparable to Hunter (this is not the boy and girl in Chicago) One of the boys is from the Netherlands and he is 2, similarities to Hunter the spots, seizures that are not controlled, g-tube fed, cortical eye impairment, brain and head size. But here are the non-comparable cleft palate, fingers and toes abnormalities (did not form right while in womb) & bony facial structure.
The other boy was from New Mexico, USA unfortunately this boy passed away at 17 months (that was very hard to hear!) He had about the same similarities as the boy from the Netherlands.
One things that I did not mention was that all of these children including the ones in Chicago all have traches. See Hunter does not and like we have decided in the past that this will not be an option for Hunter, we don't believe that he could make it through another surgery.
Hunter's Doctors are hopeful that we will hear something by this summer in result to all the research being done.
To us that was promising!!!
Also Hunter maybe having more seizures than we know b/c while we were sitting there Hunter was doing his normal movements and the Doctor was saying that is probably seizure activity.
One good thing is that we are taking him off the Kepra (that will take 7 weeks to wean him off of though) but we are adding the Felbamate this one he will have to be closely monitored on for Liver failure and Anemia, so he will have weekly blood draws for awhile.
Okay enough of my ramblings and off to doing my nightly duties!
Hope everyone has a great Friday!!!!
Wednesday, February 16, 2011
Hunter is a sneek in the bath tub, he likes too move his little butt down in the chair and he sucks the water like a straw...I don't let him do it too long just for fear of aspirating. But it totally cracks us up when he does it! See somewhat of an example below...