This, That, and Everything Inbetween

It's been a long few months since I last took the time needed to focus on a real post.  Last I wrote, Alissa was going to need IVIG therapy.  The need hasn't changed, but my insurance refuses to approve it, so she's left without it.  Oh, and there was a CT for me--also something my insurance won't cover.  Then ,there's the tests that our doctors have ordered (mostly bloodwork, also de-nied).  I've had such a hard time with our insurance in the last 6 months that I'm pretty sure we're going to make the costly leap to Josh's in January.  Since I last blogged, we've added another twist/turn that also isn't covered and we're in the process of trying (fingers crossed) to find out if Josh's will cover it.

Over the past month, we've been going through the process to have Nickolas tested for placement on the Autism spectrum.  (Something else my insurance hasn't been very helpful with...and it's SO expensive.)  Along with placement on the spectrum, we've also been testing his IQ.  We've learned so much about Nickolas along the way and that a lot of the things we do struggle with aren't because of OCD or just because he's "difficult" but because he really does have some other issues.  (Those of you who don't know much about what we've gone through with Nickolas, you can catch up as a couple of years ago here.)We just finished the testing on Friday and we go back this Friday to discuss results and next steps.  Our doctor did tell us on Friday that he's borderline, so she wants to speak to his teacher this week to help her make the right decision.  She did say, though, that he's so borderline that if we choose not to do any type of intervention, he won't be borderline within a couple of years at the most.  She said her treatment recommendations won't differ much from a child who is on the spectrum because he definitely has some big areas he needs to focus on.  She used a scale to explain.  She said if a child with Autism scores a 5, Nickolas scored 4.5.  It's nice to know that while some people (even our friends) made us feel like we were bad parents or just couldn't handle our child, that wasn't the case at all.  Believe me, we felt less than perfect at times, too, but it would have been nice if our full support system could have supported us, we had some, but not as many as we should have.  My favorite activity description the doctor shared with us from Friday was the element of surprise.  She said that something really big and shocking happened (like a balloon popping) and she went all out and all Nickolas did was raise an eyebrow.  SO typical...but yet so funny! :)  I'm anxiously waiting for Friday so we can begin the next journey--another journey that my insurance won't pay for...another reason we're hoping Josh's can come through.  Some of the therapists are $150/hour!!

Alissa's been doing okay.  We've battled a lot of tummy aches lately....we saw the GI doc last week and he's upped her Prevacid to twice a day hoping that will help.  I hope so, too! I can't take much more of her tummy aches and how painful they are for her!  She started school last week and is doing amazing! She loves her teachers and looks forward to going everyday.  I give it 3 months and she'll be back in the routine of not wanting to go, but for now, it's all sunshine and lollipops :).  She's also had to take a lot from N here lately, too.  His medicines aren't working as well as they were a couple of months ago and the poor child gets hurt too frequently by him.  We'll see his doctor again in a few weeks and hopefully we can get it under control.

Nickolas and I are taking our annual trip to UNC next week (the 9th is our appointment) for his Primary Ciliary Dyskinesa.  He's only been on steroids twice in the last year....which is a huge improvement from once a month since he was 6 months old.  And there's been a big change in antibiotics, too! The flu season is upon us, though, so we'll be starting our preventative therapy next week.  I'll get my flu shot this week and hopefully the kids' pediatrician will have it this week, too.  I really don't want to be the first case in Polk county for the 5th year in a row!!

I'm still struggling--a lot--with my PCOS and all the fun that comes with it--NOT! I switched doctors, too, in the last couple of months searching for answers.  I'm getting them, but it's a slow battle.

Josh is doing good--at least there's one person in this house that can be considered normal :).

Well, I'm off to finish laundry, break up fights, and try to relax the last day of the weekend away.  I'll let you know what we find out about N.