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Protected: Therapy Shmerapy

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Protected: Whinging

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I now have documented proof that I have a brain!

 

MRI today went fine and I came away with a CD of the images, all 344 of them.  Unfortunately, I didn’t go to medical school so I don’t know what any of them mean, but it IS clear that there’s a brain in there.  Don’t know when I’ll get the radiologist’s report.  I’m following up with the neuro-ophthalmologist on the 15th, but I may need to call him before that, because I feel like my peripheral vision is shrinking.  Ugh.One day at a time, right?

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Protected: Easier, Not Happier

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Appointment at JHU

The appointment with Dr. S at JHU was definitely worth the wait.  She had a lot of good thoughts for moving forward:

– First, she said not to lose hope that the gastroparesis may just resolve on its own over time with no rhyme or reason to it.

– She thinks some of the nausea is related to the gastroparesis and some may be related to hormone wackiness.  I have polycystic ovary syndrome (PCOS), which can wreak havoc on hormonal balance.  She’d like me to talk to my OB/GYN about getting back on metformin, which I’d taken before I was pregnant (PCOS is linked with insulin resistance, so metformin tends to help reduce the symptoms and restore hormone balance).  She’s hoping if I get that under control that it will help relieve the nausea.  She also noted that the PCOS is probably the reason I’m not losing weight despite barely eating.

– She said that with most motility disorders your gut is essentially “confused”.  Throwing up for 8 months while I was pregnant with Tobie probably started a vicious cycle.  She said your gut kind of gets stuck in a pattern.  The more you throw up, she said, the  more you throw up.  To that end, she wants to see if she can get me out of this pattern for now.  She’s suggested that I revert back to a completely liquid diet.  She said to try to drink 3-4 ounces of ensure/boost/carnation instant breakfast every 3-4 hours.  Even if I don’t like it, I should just think of it as taking medicine and force it down.    Fair enough.  While I wasn’t able to keep Boost down when I tried it before, I got some Carnation Instant Breakfast and Ensure and both are easier to stomach.

– Even though the botox wasn’t a miracle cure, the fact that it did any good was a great sign.  She said with the botox injections, if you hit the exact right spot, it can cure a person forever.  If you hit *near* the right spot, a patient can have relief for up to 3-4 months.  Unfortunately, there’s no map, of course, so there’s no way to know if you’ve hit the right spot until you do.  She recommends continuing the botox injections every 3 months.  I had my last botox injections in October, so it’s about time to try again.  She said not to add back in solid food until after trying the botox again.

– She gave me a referral to Dr. E who does their gastric pacer surgeries.  She said that by meeting with him now, we open that door so that if the other things don’t work, we don’t have to waste time waiting around for a consult with Dr. E.

– She’s ordered a 4 hour gastric emptying study with solid & liquid combined.  That’s scheduled for 2/25/2011.  She also ordered UGI/SB xray series.  That is scheduled for 1/19/2011.  She said both will give a better idea of where things stand now, but are also both typically prerequisites for a consult with Dr. Eckhauser, so it’s worth getting them out of the way now.

– She suggested changing my exercise routine to add in 3 10 minute periods of continuous walking.  She said the idea is to encourage gastric emptying any way we can, and gravity may help us out here.  This should be relatively easy to incorporate into my routine.

– She said to empty the Nexium capsules into applesauce and eat them that way.  She’s concerned that the Nexium could just be sitting in my stomach and not doing me as much good as it could be.

– Interestingly, she didn’t suggest that the narcotics are the culprit.  She asked if I really needed them: “would you be down for the count without them?”  Yes.  Then I should keep taking them, she said.    She just said to stop taking the narcotics and the domperidone (if possible) for 3-7 days before the gastric emptying study.  If I have to take the domperidone in order to guarantee that I can keep down the food for the study, then so be it, but it would be preferable to get it out of my system first.

Overall, it was a very positive appointment.  I admit having been skeptical that there was really any point to the consult – and I really expected her to say that I had exhausted my non-surgical options, but it was nice to hear that she had some simple strategies  to try and improve my quality of life in the meantime, even if the surgical options turned out to be the right answer in the long run.

I’ll be following up with her on March 3rd once all the other testing is complete.

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WTF Universe???

I do my best to (almost) never curse in my blog.  Not because I don’t have a mouth like a sailor, but because there’s something so permanent about it.  But seriously, WTF?

Our heat died last week on the day we got a few inches of snow (not a lot, but still, it was measurable, so that’s something and the point is the timing is lousy).  It’s fixed now, but now we need a new water heater… about $1100 minimum we’re told.  I was ready to fly to Florida today and Seth landed in the hospital with mysterious abdominal pain yesterday (he’s still there, but hopefully coming home today).  Tobie has a fever.

WHEN, oh WHEN will the universe give our house a BREAK?  I am so tired of this.  It’s not this year.  It was last year too.  Will 2011 be ANY better?????

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My Life, In Bullets

There are so many days where I have things to blog about, and yet there’s no time.  Ever.  When I finally have the time, I’m exhausted.  Who am I kidding?  I’m exhausted even when I don’t have the time.  Nevertheless, life is passing by and I’ve failed to record any of our comings and goings milestones, successes, failures, joys or frustrations.  So here are a few of the highlights…

  • Because this is us, and because not enough things have gone wrong this year, our washing machine broke.  This may seem a minor inconvenience, but consider the amount of laundry that a family with five young children creates.  We do laundry multiple times every day in our house, and if we don’t, the piles take over.  We have great friends and neighbors who generously allowed us unfettered access to their laundry facilities, but it still adds complications to our already complicated lives.  I’m happy to say that we now have a new washing machine.  I’m less happy to say that it’s already broken (might have been defective from the start).  We’ve got someone coming out to look at it tomorrow.
  • A first of firsts:  Tobie got her first tooth this past weekend.  This is the first time I’ve been the one to discover one of my chidrens’ first teeth.  I know it’s something small but it makes me feel unbelievably happy to have been the first to discover this milestone.  As a busy, working mom, it’s all too easy for milestones to slip by without immediate notice. 
  • My health is not significantly improved since last I wrote about it – it’s just gotten to be boring to write about.  I had botox injections inside my stomach (around my pyloris).  While my pyloris as never looked younger, I still have crow’s feet and still have difficulty eating solid food.  Still, it wasn’t without at least a small amount of success.  I’m in less pain, and can now keep small amounts of solid food down.  It was very little trouble and did help a little bit, so it was definitely worth trying.  I have an appointment at Johns Hopkins in January, so hopefully they’ll have better answers for me.  As far as I know, I have exhausted my non-surgical options, so now it’s a matter of finding a doctor who can do the surgery that I need (there are a limited number of hospitals in the country who do gastric neurostimulator surgery).  We’ll see where this goes.
  • We had Sam evaluated by our developmental pediatrician.  This is the same dev. ped. who evaluated and treats J for his ADHD, anxiety, etc.  J’s evaluation report 3 1/2 years ago was a page and a half.  Sam’s report was nine pages long.  There’s some possibility that Sam’s on the autism spectrum.  On paper, he looks very autistic, but in person, he’s far too socially engaged to strongly support that diagnosis.  He does, however, have a whole host of other issues.  He’s probably got OCD (he’s a little too young to diagnose with OCD, so normally at this age, his behaviours would be attributed to ASD instead.  This is where it all gets fuzzy).  He’s got ADHD inattentive type (no shock there).  Cognitive delays, speech/language delays, anxiety, and more.  He’s  a complex kid, to say the least.  The best thing I can say about the whole thing is that at least we have a great team working on his side.
  • We had a gaggle of people over for Thanksgiving, including J’s mom and grandparents, our mothers, my BIL, and more.  A fascinating cast of characters, to be sure.  It was a stressful day, but everyone seemed to enjoy themselves, and I put out a delicious spread of food, if I do say so myself.
  • Tobie still doesn’t sleep through the night.  This is partly because she’s been sick for the better part of a month, but also just that she’s not there yet.  This means that I am perpetually tired – I cannot wait to get a whole night’s sleep again. 
  • I have more to say, but I’ve fallen asleep at the keyboard two or three times already, so I’ll have to catch up more later.

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8th Anniversary

Today is our 8th anniversary.

So far, today I have had a three hour dental appointment, a two hour hospital visit, during which I had an endoscopic procedure to inject botox around my pyloris.  And tonight I get to go to a board meeting.  Awesome.

Nevertheless, I’m still wildly in love with my husband, and proud to share this crazy life with him.  I wouldn’t have it any other way.  What a wonderful family we’ve created together.  8 years, 5 kids, perfection.

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