LIFE... as I have said before about life taking me in all directions it continues to do so! I got depressed when I realize that no one stopped by anymore (not that I don't blame anyone, Im not posting) so I removed the recent visitors list... not sure what I was so bummed about... I am not partaking in this... Not that I don't want too, I miss everyone and having the time to stop by read and respond, pray... ough, its just not there. Even now I should not be on here posting, I have bills to pay and prepare and pack our car for another trip to Durango.
Humm... real quick, Abby. Her seizures have increased to 13-18 per day. Last Saturday night I was up all night with her terrified that she was having a stroke again. She was unconsolable, screaming and shaking with pain from 11pm to 4am... Just to toss in the mix she has lost 2 pounds so her gastro doc increased her feeds and she did not tolerate it very well and has been throwing up, and she has that yucky virus going around, viral gastro interitus which = diareaha and a red raw open bottom!!! In the middle of all this my washer broke! ~ Perfect timing! As today she is feeling better, her bottom is healing, the vomiting has stopped due to going back to the original feed dose.
We have a appointment at Children's Hospital on the 30th to see a new neurologists. Being that her siezures have increased so much, NYU docs want us to come back to NY ASAP. Well, we can't do that for many reasons. I am praying that this 3 hour appointment here will be good, a blessing and full of good advice on what to do next. I am curious to see what they say, as the Sabril is not working any longer.
One reason I am not on the site much anymore is that I am trying to get my photography site up and running. Much to do and it takes a lot of my time. I will let you know when it's published so you can check it out and let me know your thoughts.
The boys are doing well. Both in school and loving football which takes up 5:30 pm to 8:00 pm every night with games on weekends. Abby's is faring well with this so far ( we wait in the car and try to keep her happy), but I'm not sure what we are going to do when it starts snowing and gets cold!
I am sorry this is short, but who's reading right? I am just talking to myself here, but for the loyal ones that do stop by, I will post from time to time when I have a moment.