For a little over a month, Eve has been having these weird 'episodes' during which she starts calling out in short bursts that increase in volume and intensity.  By the end she is giving a mixture of a grunt/cry/scream over and over again as her body tenses up.  Her heart beats like crazy.  It passes within a few minutes and it definitely appears to be pain.  It looks like she is experiencing a sharp, intense pain similar to a crazy intestinal cramp. Actually, it reminds me of labor and a contraction.  It lasts about as long.  She's been getting about one a week, but she's had 3 in the last few days.  Friday morning was a bad one.  Then she had two on Sunday morning.  We can rule out something poking her (like her diaper tab), because Sunday's second episode occurred while she was getting a bath.  I don't think it's related to pooping.  She hasn't been constipated, and we've seen her straining to poop - this is not that.  So I took her to the pediatrician today.  She looked at Eve, but is stumped.  With a non-verbal kid it can be soooo frustrating.  I truly feel powerless.  We're working on an appointment at Boston Children's Urology clinic for September.  I think she'll have urodynamic testing and an RNC done.  Then hopefully we'll get to talk with the urologist.  I'm actually hoping these episodes are related to something with her bladder function.  Wouldn't it be great to have a problem identified so we can work on a solution?  In the meantime, I'll continue to document her episodes and look for patterns.  I feel like that's our life.  Documenting and looking for patterns.  I suppose when you are dealing with a disease that has no cure, that's what it is all about. 

In other news, we've started investigating wheelchair vans.  Oh boy.  Just the gathering of information is overwhelming.  It is inevitable that we will need one.  Eve will grow out of her car seat (which she's not very comfortable in anyhow), and lifting her in and out of the car is so hard on us.  Also, breaking down her wheelchair and lifting it in and out just sucks. 

The kids are doing well.  Seamus is nearly a year.  He's 22 1/2 lbs already!!  He is cruising like a champ and has been standing on his own when he isn't paying attention (He lets go to look at a toy and when he realizes he isn't holding on he loses balance).  Walking will be right around the corner.  He is still only rocking the bottom two teeth.  No sign of the tops yet.  He loves finger food.  The other day he fed himself his entire lunch (graham crackers, a piece of cheese, and banana chunks).  It's amazing to think that the day is coming that we won't have to feed two kids at once.