Well, Whitney still doesn't have her helmet. I called last Tuesday and they said it could be another week or two. It's been over three weeks total and I was told it would only take 2 weeks to get here. Why am I so anxious to get it? Because they say the longer you wait to start the therapy, the longer it will take to work and the more likely it becomes for it to NOT work. The ideal time to start is at 6 months and Whit will be 8 months next week.
Additionally, she has been having "episodes" for about three weeks now that I brushed off as possible reflux. She arches her back and smacks her lips while her arms go out to the sides and sometimes her eyes roll back and her hands shake. Her PT seemed to think maybe she was just having digestive problems. However, the episodes kept getting closer together and happening more often to the point that they are now happening every 10-20 seconds for an hour or more at a time up to 20 spans of time each day. So, I took her to see her Pediatrician this morning and he witnessed her doing this. He thinks she is having seizures. So, we are off for another EEG tomorrow morning. Her Neurologist's nurse called shortly after her appt. this morning from Cook's and said after she talks with the doctor she will call me back to see what to do from here. Most likely we will see the Neurologist as soon as he receives the report from the EEG. So, I'm upset because after her last MRI report, I assumed she was just fine neurologically. I will update with more when we find out.
Finally, Whit's PT has begun the ordering process for her stander and she will also be ordering a special chair that looks a bit like a wheelchair, but with a tray. She will be able to use this to eat as well as to sit and play. She still is not sitting up on her own and has a big problem with her posture, so we are hoping this will help. The downside is that it will take around 3 to 4 months to get the two devices because of all the "red tape" that we and her doctors must go through to get insurance to help with the cost. These are both REALLY expensive pieces of equipment, so I guess the wait is worth it. I'm beginning to understand now what people with special needs children are talking about when they complain about the "system."
Sorry I don't have any new photos to post today. Hopefully I will have some with an update shortly. Thanks for keeping Whitney in your prayers. I know I've said it before, but she is honestly the sweetest, most loving, calmest baby on Earth and for those of you who've not met her yet, you would fall in love with her in an instant! She truly deserves the absolute BEST life has to offer her.
http://www.youtube.com/watch?v=84FHZhB5__Y
We are back from the Epilepsy Center at Cook Children's and have some great news to report! They were not able to detect any seizure activity on her 24 hour EEG! 
