Wednesday, December 12, 2012

And it goes on and on and on and on....

So many wonderful friends and family have asked about the status of Emmy's 'fits' and if seeing our new neuro was helpful, so I wanted to post a little update...

We've been to see our new neurologist, Dr. Heydeman, twice now.  We feel confident that we've found THE BEST Rett Doctor Chicago has to offer.  He sat and listened, asked a lot of questions and helped us problem solve.  There is no quick fix but at least we have someone on our side who knows Rett.  I kept a careful record of the fits and tried to see if I could figure out exactly what was setting them off.  I could find no consistent pattern.  The most concerning thing is that she is unable to bring herself 'down'.  The fits escalate and she doesn't seem to be able to control it.  So, he recommended we try a pretty straight forward med to help block the adrenaline rush which in turn should help keep the fit from escalating.  It's called Propranolol which is a beta blocker.  I have the medicine in hand but have been dragging my feet a little on getting it started.  First, he wants her heart rate monitored because this med can potentionally slow heart rate.  Ummm, that makes me a little nervous since her heart rate is already completely out of whack because her autonomic system goes haywire.  Second, her school is in the middle of performing an 'assistive technology evaluation' and I am hesitant to start a new med that could have potentionally weird side effects.  I finally called out regular ped today to talk about how she'd like to go about monitoring her heart rate because it's time to give this med a try.  After a couple days of some pretty intense fits in some pretty unfortunate circumstances I have no choice.  I have completely stopped taking Emmy to any store unless I have another adult with me who can make a quick exit with her.  After the Wal-Mart explosion we had another run in, this time with an older man at a different grocery store.   I'll give you the quick version.  Emmy is crying but I have her positioned in the cart so she can't bang her head on anything.  Here I am high fiving myself because we're having what seems to the casual observer a 'normal' grocery store fit.  Nobodies hurting themselves, wooohooo!  Then an old man comes up behind me and screams at Em over my shoulder, "Now you stop that crying!"  It completely startled me and I think maybe he's just kind of being funny??  At this point I had already committed to checking out and  paying so there was no escape.  From there, let's just say there was a very unpleasant exchange of words.  No yelling, thankfully.  It ended with the check out lady and the bagger both apologizing to me for this man's behavior.  That's how bad it was.  So I am DONE which makes me sad because I feel like the list of what we're able to do together is getting smaller and smaller.

Propranolol it is.  We'll see how it goes.  If it doesn't help, we'll keep trying things until we find something that does.  Dr. Heydeman also recommended a GI specialist at Rush that he works with for Em.  We are seeing him in January.  I am just relieved to have found our go to people instead of wasting money and time with doctors who have no clue.  He also recommended a guy who hopefully is going to help us come up with some wrist/hand guards for her to wear.  We have some that our ABSOLUTELY AWESOME preschool teacher has made on her own.  Emmy's teachers are amazing...really, truly outstanding people. 

Not so great pics but all I could find with her 'wristies' on
Her teacher keeps revising her design!  She made some that were really durable and fit great but then weren't so pretty.  I was just happy to have something to protect her skin from hand mouthing and biting but...
Mrs. M thought Emmy shouldn't have to wear black and blue guards so she went out and found these pretty pinks.  She made some adjustments and they are now our go tos!!  Don't know what I would do without such wonderful people helping us along the way ; )

Tuesday, December 11, 2012

The Ladies

It's about 6 pm and we're waiting for Daddy to come home...

 Ava is trying to block Olivia from getting her paws on the Ipad so...

 she goes for Emmy's Ipod. 
 Emmy REACHES over with her right hand and GRABS it away from Liv. 
 Little Sisters=Great Therapy 

Tuesday, December 4, 2012


So yesterday we're sitting at the table having breakfast.  Emmy is having her yogurt and bagels.  I only have Emmy's soy yogurt so I tell Ava she can have an applesauce squeezer thing with her bagels instead of yogurt.  As Ava trots back to the table with her applesauce Emmy starts to fuss.  I'm thinking there is some kind of GI issue going on as the eating, drinking, vomitting cycle is uncomfortable for Em.  The fit escalates and I'm trying my usual  methods to calm her down.  It suddently occurs to me that she may be upset that Ava gets the applesauce squeeze and she doesn't.  This doesn't entirely make sense because she would choose her yogurt over applesauce anyday but I start talking to her about it anyway.  I explain why Ava got to have something different and tell her she can have one for a snack later today.   She looks at me, smiles, stops screaming and finishes her breakfast.

There are times I forget that Emmy is 4, that she may want what her big sister has just because her big sister has it.  It is hard to remember what a four year old might say, or want, or do.  Although it can be difficult at times to be with other healthy four years olds, I try to just chat with them.  I try not to get all bitter about what they can do and what Emmy can't.  I view it as a little insight into what might be going on in Emmy's mind.

Yesterday felt like such a normal day.  Yes there was shakiness, hyperventilating and vomit but there was very little CRYING.  I was on and so was she.  I knew the right questions to ask with her cards and how to vocalize her feelings and it put her at ease.  Her body was cooperating and I could tell she was relieved.  She was just more peaceful.  I walked into the family room and she was on all fours trying to remember how to stand up from the floor.  This brought up so many emotions.  Before Rett, before her regression we worked on that every single day.  I would guide her hands forward, take one foot and place it on the ground, take the other foot and do the same and then she would pop her upper body up with a huge smile on her face.  She mastered that skill and spent her days going up and down to get to what she wanted to play with on the floor.  For some reason yesterday her hands were working long enough for her to attempt this again and it made me overwhelmingly ecstatic and devastated at the same time.  I helped her do her feet and she wasn't able to lift her upper body so I helped her do that too.  She turned to me and had that same smile except this time she didn't wander off to play.  This time she leaned in to give me a 'love'.  She can't give kisses necessarily so what she does is lean her head in close to mine.  Such extreme highs and lows, now I know why so many Rett moms are runners.  You have to do something to burn off steam in a healthy way or you'll go insane.  And I don't mean, "Ha, Ha, I'm going insane."  No, I mean curled up in a ball in the corner crying insane.