Wednesday, May 2, 2012

Hell Week Begins: Appointment After Appointment After Appointment...

9:15am: Today kicks off what I have dubbed "Hell Week" for Spencer and myself. It's not even that it's actually HELLISH, it's just going to be incredibly busy from now until Monday afternoon which can be tough on my pregnant body and my regular ol' obnoxious brain. Only one of our many appointments really deserves to have "Hell" associated with it...but I'll get to that later since that's how we're wrapping up the day.

I woke up early this morning, showered, ate a healthy breakfast to get me in the right frame of mind, and then started to get Spencer to rally in pretty much the same way. He bathed (always torture), ate his breakfast, and after some playtime, retreated to the swing for a quick snooze before our day REALLY began. I wanted him to be full and refreshed so he could really show the Occupational Therapist his stuff. Todd and I want him to see what WE see, which is a kid who is REALLY coming into his own. Amazing, to say the least.

What this first appointment IS is a re-evaluation by an Occupational Therapist at the school where he attends Physical Therapy and is monitored by Speech Therapy. They are helping us help Spencer be the best he can be. When we last saw the Occupational Therapist, back when Spencer was 6 months, they didn't feel he needed any assistance at the moment. SCORE! Now they'll take another peek and see if he could use a hand, which I really don't think he will. If you don't know, Occupational Therapy basically "aims to promote health by enabling individuals to perform meaningful and purposeful activities across a lifespan". Examples for a small child might be picking up a Cheerio, buttoning a button, maneuvering a spoon...dressing yourself, feeding yourself, etc.

If he needs a little schooling in the OT area, of COURSE we'll do it. But I'm really hoping that they just say, "He's doing great. We'll see you in 3 months". I don't want to add another appointment to this kid's schedule. I just want him to spend his time playing, stuffing his face, snuggling, and being the awesome dude we all know and love. I guess we'll see since it's time to pack it up and hit the road...

9:45am: "I want you to know I'm thinking about you guys. I know it'll be hard but you can do it" - Todd

12:30pm: We just got home from Spencer's Occupational Therapy reassessment and it couldn't have gone better!!! The therapist worked with him for about an hour and said that he was seeing some really fantastic things. In FACT, he's AHEAD in a lot areas! Yes, his strength needs to be worked on a little (which is what Physical Therapy is for) but as far as Fine Motor and Feeding skills, he's right on track and THEN SOME! In fact, I saw him do some things today that I had never seen before and having someone else, a professional at that, witness it, was pretty cool!

The therapist gave us some little exercises and new games to play at home to get him ready for what's coming up next in the Fine Motor area. I'll do anything to help him get ahead of the game. But for now, there is no need for Occupational Therapy and why is that great? Because at this point, with a majority of the kids, he would be recommending coming in more often. But Spencer doesn't need any assistance at this time! We'll go back in August for another reassessment and go from there! 

But awesome news was followed by some non-awesome news.

It looks like the secondary insurance we were approved for will only cover from 8/24/11 onward. This is a major bummer because a LOT (a majority, in fact) of  Spencer's diagnostic testing went on when he was in the NICU from 8/9 - 8/17/11 and that racked up some healthy medical bills right there. The secondary insurance didn't kick in until he saw his treating physician at the Oncology Clinic after he was discharged. I'm not sure WHY the start date wouldn't be when they STARTED trying to diagnose the Leukemia. Doesn't make sense. Todd is pretty on fire about it buy hopefully we can sort something out.

But I can't worry about it right now because I've got a small break before the next appointment of Hell Week. More about that after I stuff our faces and take a little breather!

2:00pm: There's a reason our next appointment, the one we're leaving for in half an hour, is the one I would for sure label as Hellish. This one makes it Hell Week. We're going to see a specialist that we saw when Spencer was about 3 months old. It's not someone I sought out...the appointment was made for us before we even left the NICU. I went in not knowing what to expect and I left in tears. I sat in my car in the parking garage, sobbing and unable to drive. I can still feel it in my bones.

I know she's a specialist...she's an actual "somebody" and her husband is definitely a "somebody". I know it's her job to give you the facts and not to coddle the parents. But I didn't know until he was born that Spencer had a chromosomal abnormality. That news was fresh and she was presenting all this horrible, negative information as if it was ALL going to happen to Spencer FOR SURE. That's not true. They're all possibilities. And I appreciate her trying to prepare me and I know that she's the expert not me but, pardon my French, you don't have to be such a biiiiiiiiiiiiiiitch about it. Don't use your knowledge to try and scare me. She even handed me the tissues in a bitchy way.

Me: I feel sick. How do I let a woman I don't even know make me feel like this?
Todd: Because you're protecting your young.

I'm going to this appointment prepared. I'm not going to let her talk down to me or intimidate me. The nurses /doctors at his Oncology Clinic gave me my backbone back. They said she doesn't know him. She didn't really examine him (he was sleeping). They saw him at his clinic every week for awhile and then biweekly, monthly, etc. They've seen what he can do, how much he's grown, how amazing he is. I know him. She doesn't know him. So if she makes me feel lousy again, I'll shut her down. And if she doesn't give me any useful, new information, I won't schedule a follow-up. I got NOTHING but hurt from the 1st visit. He's got his parents, family, Oncology team, Pediatrician, home nurse, and therapists. If she's not going to be a positive addition to our team, we don't need her. He's done AMAZING things without her "expertise".

"I love you and am thinking about you. It'll be over soon" - Todd

I'm not going in expecting the worst, guns blazing. I'm just not going in like the marshmallow I was.

*SIDENOTE: Baby Sullivan just moved. He's got our backs!

7:00pm: Finally home from a long, long, long day. Spencer weathered it better than I did. I'm not going to go into all the details of Spencer's visit with the specialist but I will say that it went much better than last time (I left with dry eyes), she said I should be VERY happy with where he's at (his communication skills are really fantastic and he's growing perfectly), and I don't need to come back for year (though I'm still not 100% that I need this person on Team Spencer). She really had a lot of great things to say about my guy but she still felt the need to lay things out in a weird manner at times. And I didn't get ANY new information. Everything she said, I already knew. I'm a prepared mom. I'm debating about going one more time...I guess I have a year to think about it.

I stopped by my parent's house and filled them in on the day and they were clearly proud of the little dude. Now I'm home and Todd just pulled some steaks off the grill. I'm going to do my best to not fall asleep face first in the beef. Today was just a little too much for me. Had a little too much anxiety brewing all day. But it's over. The day I was most concerned about has come to an end. I'm going to feed my face and put my head on a pillow, gearing up for our big Anatomy Scan tomorrow. That, compared to this, should be gravy.

As long as we don't get any bad news. Did I just jinx myself?

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