Daily Archives: February 26, 2009

Cerebral Palsy, potty training, and other Emmy updates!

So this is a random post…but I’ve had several updates I wanted to put on the blog so I decided to combine them all in one! Some of you already know that Emmy went down to see a pediatric neurologist last month.  Well, we just got the write up from him so I wanted to share basically what it says!  It’s really hard to get into this specific doctor since he is the head of the Mind Institute of UNM.  So even though we’ve had the appointment for 4 months we waited about 3 hours past our appointment time to see him!   I was a little nervous how Emmy was going to do during his evaluation since we’d been waiting so long but she did great!  Alex had taken the day off to come with us, so between the two of us she was pretty entertained!

Anyway, basically he asked us a lot of questions about her birth and our family and her milestones and things like that.  The funniest question to me was if there was any chance Alex and I were first cousins.  Which I guess I must have smiled at or something when I answered, because he suddenly got very serious and was like, “It happens more than you think!”.   So I got in trouble from the doctor for being unruly I guess! 🙂 Anyway, after observing her walk and talk and interact he determined that she has mild spastic diplegia, a form of cerebral palsy.  Spastic means that her muscles are overly tight and diplegia means it is mostly showing in her lower extremities.  Cerebral palsy means that at some point there was damage done to the brain.  Emmy’s happened at birth when she didn’t have oxygen for 23 minutes.  However, they aren’t sure if the onset of CP happens because she didn’t breathe at birth or if she didn’t breathe because the condition was already present (possibly due to an infection during my pregnancy).  Cerebral palsy itself has a huge range of severity and can include a huge range of disabilities.  Emmy’s case however is very mild and seems to be completely contained within gross motor skills.  CP is a physical disability but it can effect many other things as well. Her verbal and cognitive are both actually a little accelerated.   Our physical therapist says that a lot of kids who have trouble moving find other ways to entertain themselves such as talking.

So what does this mean for Emmy’s future?  CP doesn’t really have a cure but it is non-progressive, which means it doesn’t ever really get any better or worse.  However, even though the CP doesn’t ever go away there are several treatments and preventions for the complications it creates.  So in time, since we caught it so early, Emmy’s motor troubles may become unnoticeable to the rest of the world.   So for now, we are going to continue with the physical therapy and orthodics until she is 3, at which point she will enter into the school district’s preschool for special needs kids. This is actually awesome because preschool is really expensive here and she will go for free!  So the school’s testing will happen in the next few weeks and we will transition in August.  Some other options in the future could include casting the feet, botox injections, and/or surgery.  But those things wouldn’t happen until like 4th or 5th grade and I have to admit that I haven’t really read a ton on any of them yet…because I’m not sure Emmy will need anything like that.

I have to admit that it was kind of bitter-sweet to get the diagnosis.  I really thought I would be excited to get an actual diagnosis so that we could have some answers about what happened at her birth and what we can be doing to help her grow and be happy!  And while it is nice to be able to look it up on the internet and read about what’s going on with her…I still feel kind of sad that she has to go through this.  It’s hard for a mom to not feel guilt about stuff like this I guess.  I still wonder what I did or didn’t do while I was pregnant…but anyway…I think I’m rambling now.  Anyway, I’m sure those of you going through things like this understand what I mean.  It’s nice to have answers…but at the same time you kind of wish the answer was “everything is totally fine!” but that isn’t always Heavenly Father’s plan!  I am so glad that Emmy came to our family!  And I am so grateful to all of the people who have helped with her birth, recovery and development.  So many of them have shared stories of what a miraculous situation it was and how they literally felt the presence of Heavenly Father and/or angels  in the delivery room!  (It’s funny to me how many people preface their story to me with “I wasn’t really a religious person…but…) Given her medical history there is just no way she should be doing this well.  But she is!! Total miracle child!

Anyway, now that I’ve bored everyone to death!  I wanted to share some other exciting Emmy info!  First of all she is potty training…which she is doing great with and she loves being a “BIG GIRL”.  Also, she is working on her ABC’s!  She loves singing the song…which she gets a little out of order but is getting better.  And she can read A-E !  We play a game where we put the letters on the floor and she has to run to the letter I say!  Also, she is working on counting.  She’s been able to count to 10 for a long time but she recently started working on 11-20.  However, once she says eleven she goes back to 8…and gets stuck in an infinite loop.  I finally figured out it’s because 11 sounds like 7 so she gets confused.  So she walks around the house counting 1 2 3 4 5 6 7 8 9 10 11 (or elezen) 8 9 10 11 8 9 10 11.  And she’ll keep doing that loop until you say 12 and then she moves on to 13 and 14.  It totally cracks me up.  Sometimes she’ll do it for a couple minutes before I realize and help her out!  Funny!  She is growing so fast!  As is Kaylee by the way!

Anyway, long post!  Feel free to ask questions in your comments!  I’m getting pretty good at explaining it all!  Plus I love comments on my blog…it helps make the day go faster!