Decisions

The past several months we've seen a decline in all the boys, but the most marked in Aidan and Jace.

First notice of it, I looked for a connection with med changes.  None.  So I waited.

Things continued to worsen.  So at the advice of the neuropsych, we took the boys back to a neuro here.  Which turned into a weird twist... validation for certain things and some help with meds, but a living hell to boot.

So what all has worsened?  Lots of seizures, lots of potty accidents, lots of behaviors, lazy eye back and worse than ever, loss of muscle tone and strength to the point of walk becoming too labored to continue, grow stopped, barrel chest formation- I'm sure I'm forgetting something.

The med changes made helped Damon, but he still needs a sleep study done because he is having very real and scary apnea episodes.  Jace's reduced his potty accidents, but has not reduced his Absences or CPs.  He also needs another sleep study, because he is NOT sleeping.  Aidan's reduced his potty accidents considerably, but again, not his Absences or CPs and he's now vomiting again.  Leading us to believe it's helping with their Tonic and Atonic seizures, but not the others.

As the whole muscle thing became really noticeable and disheartening, I took Aidan back to the Pediatrician.  He was naturally really alarmed and called the neuro at PCMC to ask for us to be seen sooner than Dec.

The response was a call for me from the neuro.  A 2hr phone conversation.  That started and ended the same.  

We need more help with caring for them. ALL treatable disorders have been tested for.

All the evidence supports a continued untreatable decline. 

There are options, but the way I see it, most of them aren't worth the price our boys will pay.

1. Go back to abusive neuro here.  As I explained what we'd been through, and could hear the trembling in my own voice and feel the tightening of all my muscles, I knew then and there I cannot continue with her.  It's taking too much of a tole on me and our family.  Even he could hear and feel it, and was noticeably concerned by it.

2.  Go back to the neuromuscular specialist now hoping again for some light bulb moment.

3. Go back to the neuro at PCMC to make some more med adjustments.

4. Go back to the neuro at PCMC, AND the neuromuscular dude.

5. Go to Seattle for more invasive testing and fresh eyes.

Right now the plan is to go right back to the neuro at PCMC for med adjustments and then go to the neuromuscular guy.  (A couple weeks from now, so we have time to collect test results.) All this means more trips.  Longer trips.  But we won't be abused... :/  Was she a waste of time?  No.  I gained valuable info about their seizures from her.  I also know more about myself and my limits and the boys limits.  I'm firmer in my view of what they need. It's clearer who I can trust with the boys' medical care. I can see, that the claim of the neuro here that she can fix it and that I've been given false info is completely ludicrous... and that the neuro at PCMC is absolutely correct about this being an untreatable genetic disorder.  Whether or not they "find it," is becoming less important than figuring out how to care for the boys' increasing needs... the therapy swing inside, more accessible wheelchairs, the basement finished, vehicle change or alteration, and ramps built... 

This is not all gloom though.

As I took Aidan for a blood draw that again turned into 5 horribly bruising pokes, he cheerily greeted everyone I wheeled him by.  Even said a, "Hey there dude!" to a guy that couldn't help but smile huge and greet him back.  

Oh how I adore these boys.  And oh how grateful I am for the time I do have with them, however long or short that will be.