I'm almost in shock at this point.

Things with Ian are a mess, almost to the point they were when all of his diagnoses started coming. At least then I had some idea of where we were going, but right now I don't have a clue.

His insurance has been reinstated, but it's with a specialized medical group. This means, of course, that some of the people we've been working with aren't covered, so we have to make changes. His pulmonologits will need to be changed, but our nurse coordinator is helping with that. I'll have to get his records and such, but she'll make the appointment at least. The other thing is speech. He had the evaluation through All Children's Hospital, and they recommended that he have ABC speech therapy (which is basically specialized for kids with hearing aids and loss of ability to hear certain sounds). He was on a wait list, but a spot opened up for this month. I grabbed the spot, then found out that his new coverage doesn't cover it. We were quoted a self-pay amount which made me want to cry, but I said to go ahead because I don't want my son left behind, especially since his hearing is decreasing somewhat. Well, got a call yesterday that the price it triple what we were quoted because the woman hadn't realized it was "specialized" testing. Well, no matter how badly I want it, there is no way we can afford that weekly. Not by a long shot.

So, at this point he has to get reevaluated for speech by a group approved by CMHS, then they can make their own decision about speech therapy. He also isn't medicated at this point because CVS can't figure out how to get him into their system using the CMHS ID code (which was another lovely experience dealing with THAT for 2 days), and we can't buy just 1 or 2 pills because it's a controlled substance and that would void the script. Finally, I approached the school because I had let the lack of support around his speech therapy through them lax since he would be getting the therapy through All Children's, and yesterday I was told he "doesn't fit the criteria" for the school's services.

I am beyond frustrated once again. I can't believe that we're back to almost square one, and I have to start the fighting for results I thought we already had.

I'm exhausted and angry and scared.

The pharmacy called me yesterday about a medication that was called in for Ian from the pulmonology specialist. I had no idea about any medication or anything, and I knew it had to do with the second round of blood test results. I called them yesterday and asked for a return call to discuss the medication and the results, but no one called me back.  I called them again this morning since I was going to be on my cell phone and asked them to fax the results and to PLEASE CALL ME since the pharmacy can't fill the prescription due to it not being covered by Ian's insurance.  It is now 1:30 pm and I still haven't gotten a return call! I got the results faxed as requested, and the results are confusing and frustrating for me to figure out. I looked up the medication on my medical CD, and it's for a fungal infection that starts in the lungs and moves throughout the body. The usual duration to take his medication is 3 to 12 months.  I am freaking out because there are other things that this medication can be used for, and none of them are good...

This is the second time that they've sent medication into the pharmacy to fill for Ian without them calling me to discuss it. They are starting to really tick me off!!!!!

I am super irritated but trying not to be.  I know that the subtle (or, not so subtle to me) changes at work are part of it, and another part is being stagnant as far as moving.  The main part is, however, the lack of donations for the 3-Day walk! It isn't exactly the lack, because I know I haven't been vigilant in asking for donations (that will start in July), but rather the way people just brush it off.  I watch time and time again when people announce they're selling products like Avon or some Tupperware-something-or-other, the people I know drop a handsome sum on that, but when I mention the 3-Day, it suddenly becomes, "Oh, I wish I could donate. Times are so tough right now though..."  Really? Didn't seem that tough when you dropped that $70 on a bundt pan that I know you will never use, or that set of earrings that you and I both know would look better on a circus animal...  I guess we've all become so "gimmie" that the honest feeling of doing good gets surpassed by getting something in return.  It's so sad.... and what makes me sadder is that the view I've had towards people I know are changed now.  Pay $10 for a shot of Jack Daniels or put it towards breast cancer research? Yeah, I can see the dilemma.  Donate $40 to ending a disease that will touch everyone's life in one way or another or buy another purse? The choice is obvious, considering there's a great cow-print bag on sale RIGHT NOW!  Don't want to miss out on that, that's for sure.

Ugh.

When I moved here 10 years ago, I did it to escape.  I was very self destructive when I lived up north; if I had been better educated about depression I would have been medicated, but not knowing, I did what a lot of people did and turned to substances as a means to "self medicate."    Moving to the south was a chance for me to start over, a chance to start a new life for myself and create it the way I wanted.  (Granted, I was a fool for bringing some of that self destructive with me, but that's another story).

My father moved down here not long after I did.  We had a family company down here, and he needed to come down and streamline some things.  Once here, he never left.  My mom lived up north for another year, then she came down as well.  Only a few years later was when my brother and sister-in-law decided to move down with their family, and it was so amazing to be in a place I loved with all the people I loved!

Now with my brother leaving, I feel like half of my heart is being ripped away from me.  I can't even put into words how much it hurts to know that they're going to be 1300 miles away and that seeing each other is going to be a major event rather than a split-second decision...  The kids are going to change so much, and their lives are going to be constantly changing, and I'll be just "that aunt" from Florida.

Two more days and then they will be gone...  

I am getting so frustrated with the whole "school issue."  Everyone seems to have an opinion, but no on really has a say in what should be done, if you get what I mean.  I know it's ultimately my decision, but Sean has say too, and I know what he wants to do.  My mother very clearly has an opinion, but the thing is, this is a huge deal for me.  This is his education, and I don't want to make any mistakes.  He's had such a rough start, the last thing I want to do is mess everything up.

He didn't test in to AGP (kinda pisses me off that no one has bothered to say anything to us!), so we're back to where he's going be sitting off to the side doing 'different' work than the other kids because he's grasped the concepts earlier than the others.  It hasn't bothered him yet, but it will.  I know it will.

We were told by his teacher that she's moving to second grade next year and is taking the whole class with her, if the students want to go.  I'd love that, which is another reason why I don't want to move him to a new school... if we move him and we end up not liking the school and move him back, who's to say we'd get a great teacher for him then?

Sonofabitch!

I have a meeting with the principal this afternoon, so we'll see where our heads are at after that.