ChezPerky

This morning, Seth finished packing, printed out directions from the airport to his hotel and various other places that he needed to go, and headed upstairs to say goodbye to the kids.  He told each one of them that Mommy (that’s me) was going to take him to the airport and he was going to get on a plane and go away for a while but that Mommy was coming right back home and that he would be home as soon as he could.  He gave everyone hugs and kisses.  Sam was chewing on a marshmallow when he got his little speech, hugs and kisses, and he had a vacant little smile on his face the whole time.  I knew he wasn’t processing a single word Seth said, but Seth insisted (based on the fact that Sam hugged him back) that Sam understood.  Until Sam looked at him and shrugged while saying, “But, if you set a marshmallow on fire, it won’t be fluffy anymore!”  and then he scampered off…

Yeah.  Did I mention that my kid’s on the spectrum?

We’ll miss Seth, but we hope that the next six weeks go by quickly and relatively painlessly.  I’ve hired an extra babysitter to help me in the evenings and on weekends and I hope that’s enough to get me through.  Seth’s going to have a very demanding schedule while he’s in SoCal, so I don’t envy him in the least.

On the health front, I had a Secretin MRI/MRCP earlier this week and the preliminary report showed that my pancreas and pancreatic duct are working, and that my common and bile ducts are enlarged.  Not sure what all that means but I’m seeing my GI doc on Tuesday and will know more then.

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I haven’t posted  since June of 2011 – when we lost Julian all together and it looked like we would never see him again.  I’d like to get back to posting, and I’ve tried several times, but after such a long lapse it always feels like there’s too much to catch up on.  So I’m just going to dive right back in with some salient points.

The Kids
The kids are doing great.  Tobie, believe it or not, just turned 2 years old, but she thinks she’s a 4 1/2 year old because everyone else is, so why shouldn’t she be?  The triplets, as you may have noted, are 4 1/2 and vary between awesome and incredibly annoying.  The girls fight with each other all the freaking time, but they’re so cute and lovable that it’s hard to hold that against them.  Sam’s doing well and his recent IEP meeting revealed that he’s doing well enough to move on to an integrated classroom next year (part typically developing kids, part special needs).  We have seen Julian a few times, but his mother has been refusing to return my calls and emails recently, so we haven’t seen him in several months.  It’s not what we’d like, but my main focus has to be on the children who are IN my house right now.

Seth
Seth lost his job at the end of December.  He got a temporary job in January for 13 weeks, but that’s over now.  Although he’s looked for a permanent job locally, he’s been unable to find anything so far.  So, he’s accepted a 6 week position in California starting this Friday.  He leaves tomorrow.  He’ll be working 6 days a week, twelve hours a day, so he won’t be able to come home while he’s there and my health isn’t good enough to go out and visit him while he’s out there (more on that later).  So we’ll miss him and he’s going to be working his tail off, so it’s going to suck all around. But the money won’t be bad, so we can’t entirely complain.

My Health
My health has been pretty terrible since Tobie was born.  It hasn’t been getting better – it’s been getting worse.  This year, I’ve had three hospitalizations, gotten a G-J feeding tube (which has been replaced twice) and a central line, become septic and almost died, gotten a massive clot from my central line, gotten a new central line, been told by the third best gastroenterology clinic in the country (Johns Hopkins) that I should probably look into other clinics in the country because there’s not much else they can do for me, and lost about 40 pounds. Now, I needed to lose those 40 pounds (and need to lose another 40), but not eating isn’t the way to lose weight.  But, pretty much whatever I eat the conventional way (via mouth), I throw up.  (Not on purpose – believe me, I’m not a fan of throwing up!).  I’ve been on a medical leave of absence from work since March 2nd and am slated to be out through July 1st at least (probably longer).  I have little energy for anything most days and spend a lot of time in pain and nauseated.  There’s really no end in sight.  My options right now are:  surgery to get a gastric neurostimulator (the surgeon at Hopkins won’t do it because he’s an ass, which is why my GI doc has suggested I look elsewhere in the country), surgery to have my stomach removed (which I feel is a little drastic at age 36, but is under serious consideration), surgery for a different kind of J-tube (also under serious consideration, but on hold because I was recently septic), or just putting up with the status quo.    I have an appointment at the Cleveland Clinic (#2 Gastroenterology Clinic in the country) in September and I’ve asked Mayo (#1 in the country) to review my records to see if they’ll offer me an appointment.  I’m also trying to get an appointment at Mass General.  Hopefully something will come through.

And that’s about it.  More to come, I’m sure, but that’s enough for a catch-up post.  I’ll leave with a new picture of us:

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