It's been a while since we updated. Finding a computer with internet or getting our laptop to find a signal is tough. Well as of this morning, Ari's release date is still next wednesday June 13. This might change, but we are moving forward as though it isn't. We have a doctor's meeting scheduled in Ari's room Thursday morning, so that will be when the decision is made. Ari's progress has been slow but steady. They put her on a new medicine which I still can't pronounce for the seizures. It isn't working yet. We think we have some amount of relief with the intestinal problems, although at times it seems we may be better off telling the sky to change colors. But some of that may be from the new medicine and when the nurses sneak in and give it to her on an empty stomach. The neurologist scheduled a new video eeg, which just finished. He wants to make sure he is seeing what we are, because we told him the seizures seem to be getting worse and lasting longer. They are still only affecting her eyes and sometimes her head movement, so we aren't convinced yet that they are a negative thing. We can also account for almost every one as being when her breathing is restricted in some way. Our studies on the wonderful world of the web seem to all say seizures are closely related to lack of oxygen to the brain, which is definitely what we see. The breathing issue is top of the list right now. It seems that her throat may possibly be closing up due to the scar tissue from her breathing tube in PICU. She keeps her head turned to one side even after the botox, and her muscles in her neck are fairly relaxed. If we put her head straight or in any other position, she gasps for air and her strider sound gets really bad. Obviously not being able to get her positioned right has slowed down her trying to eat in speech and some of her therapies. In spite of this, Ari will get a swallow test at the hospital next to Brooks today. She will swallow dyes, then be x-rayed to make sure it is going to the proper places. We have seen her open her mouth for bites now, especially more so in the last week, and swallows them fine. We think the therapies are wanting to push for her to get more food by mouth, and we are confident that she can handle it. Tomorrow we will be transporting Ari to another hospital (there are way too many hospitals around) for an ear, nose, and throat evaluation. They are focusing on the cause of the breathing problems and the strider, and will most likely schedule to have the scar tissue in her throat lasered off. Hopefully the treatment will follow tomorrows evaluation rather quickly. I did some research along with a bunch of my family on the hyperbaric chamber. We decided we would like to try it on Ari, so I scheduled an appointment with a clinic a couple blocks from Brooks for Friday but Brooks refuses to give us a referral. The oxygen chamber is one of those non-traditional treatments, and all it is really is a pressurized room of pure oxygen that is forced into the patients body. We think it might help with Ari's seizures and recovery all around, but we are guests of Brooks and therefore at their discression we will have to postpone this. It is not covered by most insurances and the government refuses to recognize it as a treatment, and so being as it is, Brooks feels like the liability and risks are too high. Finally, I will say that we feel Ari's awareness has increased to the point where we feel she is almost always conscious of her surroundings. If we leave her, she watches us. When we hold her, she will stop crying and relax. If a nurse or one of us is feeding her or moving her, she looks to see who it is and quite possibly what the heck we are doing to her. She expresses quite loudly her anger and frustration, and her crying has become more like her and less like a wounded zombie. I'm out of room, so I will update on the test results next time. Love to all