Thursday, June 7, 2007
That was a quick trip up and back. Just got home. I read your messages to Sarah also. The biggest update... Ari is being released on the 13th. The only thing that may hang this up a day or two would be if all her equipment isn't ready. That was our biggest news for the day. As you know we had some meetings and tests Ari has been going through yesterday and today. Can't remember if I updated you on any yet, so here is a few. First, they did a swallow test Tuesday. Ari did great. She swallowed several different things and everything went to the right place. So she will now move onto a daily feeding therapy, starting with juices and moving on to baby food and eventually pureed food and real food. They also did a second eeg Tuesday because the neurologist was concerned that he wasn't seeing what we were. He was right. What we requested his expertise for, the fluttering of her eyes and a few other little things, are not what he was seeing as seizures. So although she has them quite frequently, they appear to be harmless episodes of her eyes or brain trying to correct itself. But he does see seizure activity at regular intervals, and these are not marked by significant physical changes. To be sure we know what he sees he is going to take Sarah to his office Friday and show her the video and graph. So Ari will continue on the new med Tri.... something for whatever length of time to control the seizures so they don't get worse. It's not our favorite option, but we concede the matter for now. Yesterday Ari went to the Shands hospital for her appointment concerning the breathing strider noise issue. They stuck the camera down her throat and showed us what was going on. Their doesn't appear to be any scar tissue like we all thought, but instead it is some flap in her airway that curves the wrong way or something. Hard to explain, but bottom line is the specialist thinks she will grow out of it over time. And as a backup plan, if it ever gets worse or interferes with her oxygen saturation level they can go in and laser it a little. And last night they did a test all night with the little oxygen monitor thingy-ma-jig to make sure she was getting all the oxygen she needs. There were no problems at all. So the doctor meeting this morning included all this and more, including how well she is doing in response to her castings, therapies, botox, feeding schedule, muscle tone in general, and all the goals in general that Brooks had originally established. The conclusion of the meeting was that Ari can benefit from being home just as much as being at Brooks, and is now ready for outpatient therapy. I would like to say that we are just as ready, but we are really about as nervous as a person would be hiding in a bathtub in a single wide trailor in Kansas during a level 6 tornado. We are relieved in a way that everyone thinks she is doing well enough to leave, but not excited about loosing the security of having nurses and doctors 25 foot down the hallway. We do feel like she has improved a great deal ourselves, and would like to say we look forward to trying to coordinate everything that she was getting at Brooks into an area that will stretch from Tampa to Orlando daily, but to say so would be a lie. We are definitely ready to come home, and excited to put the split up family part behind us. We will continue updates through the next couple days as I am here trying to prepare the house for their homecoming and Sarah is there preparing Arianna for her trip home. We will most likely continue updates while we are home, but probably only once or twice a week. These will have more pictures than we were allowed to take at Brooks, so that is a good thing for everyone away from Sebring. Thanks for all your prayers, and thank God for the strength he gives us to go onto the next step in Arianna Elizabeth's recovery.
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