1. I am STILL trying to get an answer if neuro will see Jillian. Her GI doctor told us 2 weeks ago after her surgery that she wanted neuro to be back involved in Jillian's case for multiple reasons. I called the next day and tried to get her an appointment. They needed an "official" referral from the dr before they would talk to me. I got them one of those. I called them back last week. They called me back this Monday asking me why they should see Jillian. I tried to summarize it all in a nice neat package but it is not a short story... I really just wanted to say "cause I said so" but I knew that would not work, not even her doctor referring her was good enough. I was then told that the neuro triage nurse would look at Jillian's case and decide what would happen next. I just call again (since it is now Friday) and left another message to figure out what is going on. I hate feeling like I am bothering people but it should not take 2 weeks just to schedule an appointment, let alone who knows how long it will take to get in to see a doctor. She is already on a new med that we want neuro's opinion on, I would like her seen soon.
2. Yesterday morning Jilli and I went in to visit with people at my old job. It was one of my co-worker's last day so we went in to tell her goodbye. Jilli had fun seeing everyone. We rushed home for oxygen delivery and sat here and sat here and they never showed up. They are suppose to come sometime after 1pm on Thursdays. They have come anywhere between noon-4 however they are open til 6. That is my Thursday afternoons, cable companies 2 hour window looks great in perspective (I had to ask for after 1pm, they wanted just anytime Thursdays). This morning I called to see what happened. With Jillian's surgery a couple of weeks ago we were not out and about as much so we have some extra tanks right now, so we could make it to new week if we needed to, however I wanted to know why I spent my afternoon sitting here instead of doing the things I needed to get done. They called me back shortly after I left a message for them and said something messed up in the automatic delivery system and it is fixed now and someone will be here sometime today. I need to get two Tubie Friends made (they are having a big fundraiser right now, check out their facebook page) so that gives me some time. While I was on the phone with him I was also able to get stuff situated for the portable oxygen concentrator for Disney since we are officially less then a month away! Yes, Jilli and my clothes are all picked out and I have started putting everything together, I have to be organized to make this trip run smoothly, I want to just enjoy our time there and not worry if we have enough syringes ect.
3. So the state came back with a decision about Jillian's PT... for some unknown reason they think 6 sessions of PT over the next 6 months is the appropriate thing! Once a month... for a kid with low tone, at the 8th percentile on the PT test, on oxygen for endurance and dropping numbers when walking, and just had muscle taken out of her leg to confirm a muscle disorder!!! The whole thing that there was ever a question about covering PT for her still blows my mind and there answer shocks me. My best hope is that when Brent starts his new job next week that their insurance plan offers a good amount of covered PT a year, otherwise it is $85 a week out of pocket. This whole situation is mind boggling to me. Do they think we drive 20min one way each week for PT for the fun of it? We have nothing better to do? No, we do PT because it helps Jillian, the politics of this all is crazy.
So thats been my day so far. I was talking with another special needs mom recently and we were talking about how this is the side of SN parenting people don't see. They don't see how to get our kids the things they need is such a fight. Sometimes you are lucky and things run smoothly, but all too often the basics are a fight, and as a confrontation avoider this is definitely stretching me. We will figure out today's hurdles, just as we figured out all of the hurdles before, I just hate calling people and telling them they dropped the ball.
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| She makes all the fighting worth it! |
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| I am not sure what that crane was about to do to the princesses but I love listening to her pretend play, it is super cute (this is also a rare site of her laying on her belly, her GJ tube does not prevent her from laying on her belly but I doubt it would be very comfortable so it is super rare to find her laying like this) |
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