Thursday, January 17, 2013

Bare Bones: Super Vulnerable and Not At All Witty

I had to put the nightmare of a stomach bug I'm wrestling with on the back burner yesterday to take Spencer to his Oncology clinic appointment. 2 weeks really flew by and in that 2 weeks, he gained back the half a pound he lost AND gained another quarter of an inch. Growth is great. Sick kids don't tend to grow (however, he will be seeing a nutritionist soon as his weight fluctuated over the last few would think with his condition and his thyroid issue that being OVERweight would be the problem but he's my little string bean - but he is NOT malnourished or they'd see it in his blood boy knows how to EAT).

All of his vitals were great and they got his blood on the first try with no tears from my brave little guy. One of his docs and I went over the little bits of rash and bruising that seem to be appearing more frequently and she completed her exam. Any swelling they felt in the liver and spleen at his last visit is gone. Another plus.

Not so great, yet not totally horrific, were his blood results. His platelets are down again and his abnormal cells are up from 5% to 14%. Now that's a pretty big jump so it COULD be an error. This percentage was determined by a computer and a human ALWAYS checks this number...but we don't find out right away. So the percentage of abnormal cells could be wrong. We have to wait and see what the tech says. The bottom line is that it's been 2+ months since the abnormal cells showed back up and he had his bone marrow biopsy and nothing has resolved. So it's time for another biopsy. FFFFFFF.

We knew this was coming. At some point, it either has to be Leukemia or it has to resolve. Nothing has resolved and the only way to know for certain what might be lurking is to look at the bone marrow. I knew this was coming. I was prepared for it. And I wasn't even THAT concerned because the first biopsy was far less awful than I thought it would be. But DAMN, am I SAD. Really, really, really sad. And sick. Sick and sad don't mix well. But anyway, I'm waiting for a call from his doc to see what the sedation unit has available but it's looking like next week or the week after. We need some answers. This hanging out in Limbo bullshit is getting pretty old.

But of course, Spencer is totally unaware. He's as active, crazy, and happy as ever. Add this to the PRO category because he has NEVER acted like a sick kid. So maybe he's not sick. Or maybe if anything nasty is hanging around, it'll be caught before he has a chance to act sick. Until treatment that is. Ugh, I really can't even stomach that thought. And the thought of being away from Sully. He gets put on the back burner more than he should with all of this. I wish I could just turn my brain off. Just for a minute.

Also weighing heavy on my brain are the reports from Spencer's ST/PT appointment on Monday. Physical is totally pumped. He's making all kinds of strides. And while Speech is also happy, he's definitely a little behind with Expressive speech (actual communicating). I was told that it's common because low muscle tone makes it hard to balance breathing and speaking, that's why the PT is so important. Building his core muscles will help with speech, as will some exercises with play and imitation.

That's where the Early Intervention Specialist comes in. She's going to start coming to our house once a week (in addition to his monthly ST/PT appointments) to basically play with Spencer in order to give him the boost that his speech needs. He's got stuff to say, for SURE as he babbles like a champ. And we'll do whatever we've got to do to help him wherever he needs help. This specialist knows what to do. But she marks his TENTH doc/specialist/therapy/appointment/what-have-you. TEN. At 17 months old. Pediatrician, Oncology clinic, ST/PT, Occupational, Early Intervention Specialist, his regular specialist (who may not be a part of Team Spencer after his next appointment), ear and eye docs every 6 months, his in-home evaluations, and the Endocrinologist.

How are there such monsters in this world who do TERRIBLE, unimaginable things but it's my awesome, innocent little dude who has so much on his plate? Who has already endured so much at only 17 months? And WHY can't I help him more? It makes me want to scream until my ribs pop, graphic as that may be.

I think because I don't feel well, all of this junk just seems so much worse than usual. Because usually, I'm the one with the "hope for the best" attitude. I always think that whatever Spencer does, no matter how small, it's basically like him walking on the damn MOON. I am his biggest cheerleader. I never think of him as sick or behind or struggling...but now I kind of am and I'm hating myself for it. I'm being a sucko mom. He's the one that's going through it all and he's doing it like a champ so there's no reason for me to be having a pity party. I'm blaming it all on this stomach thing. It's sucked the will to function like a normal human being right out of me.

Just hug your babies tight. Or your pets. Whatever.

Rambling over.

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