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!

10 thoughts on “Cerebral Palsy, potty training, and other Emmy updates!

  1. It’s funny how silly Emmy can be sometimes. I like that she involves her little sister in all the playing she does, handing Kaylee a few dolls or ponies or whatever her thing is for the day. Too funny. And the infinite loop deserves a post by itself. We’ll have to get a video of that to share with everybody, because it’s hilarious.

  2. She is so cute! Both of your kids are! 🙂 I’m glad you were able to find out what is going on with Emmy, I’m sure it does make things a little easier. I love your ice skating post too! We took Kambria for the first time too about a month ago at Riverfront Park’s Ice Palace. I did a post about it too, you can check it out if you want!

  3. Okay, as you may guess, I have a lot to say. We’ll see how long my brain lasts …

    First of all, what happened at Emmy’s birth? True to your mom’s understated way, all I got out of her was, “things were scary but turned out okay”.

    Second, I just want you to know that I have totally been and am at the place of bitter.sweet you are about your child and THE DIAGNOSIS. You will probably be there off and on your whole life. I am just guessing that because Daniel is 11 and I still go there sometimes.

    I guess I thought that you guys knew Emmy had CP because she was late to walk and the way her feet stayed stiff when she walked.

    I am so glad you have an official diagnosis because the irony is once your kid doesn’t suck at what they are supposed to be doing (they can still be behind, but they have to be 2 standard deviations BELOW normal) the school district will try to give her the boot. The diagnosis will make it easier to keep her in benefits. Mead gave Daniel the boot because he was … wait for it … .01% too high. What was that 1/1000 thing? A well timed blink? Oops, I digress.

    Anyway, gosh, all that sounded a lot more profound in my head. Self-delusional. That’s a diagnosis, too!

    Your girls are darling!

  4. I wished we lived closer to each other! You and I have the same tastes! I love your table!! :o)….and your couches!! (haha) How fun that you guys have a special Valentine’s Dinner. I’m glad you got some answers from the Dr. I think Emmy is doing awesome at this growing up stuff. It really helps to be in the know! She is just too cute!

  5. Oh!! Emmy is potty trained??? I am so envious!! And that picture of Emmy drinking her juice out of the fancy glass is hilarious!! So just what kind of juice was in those glasses?? Just Joking! And I so know what you mean about leaving comments! It’s fun to see who’s thinking of you! :o)

  6. Julia, you are an EXCELLENT mother! I’m so impressed with everything you do for Emmy and how informed you are about the situation and how aware you are of what she needs. I love that you are playing the alphabet game with her and that she gets to go to school in the fall!! I bet she’ll love it. Eldon is going to go to preschool too, but I’m not so sure how he will feel about it…

    Also, sorry about the call last night! I was a little embarrassed. It was so sweet to hear Emmy’s voice! I would love to come home for a little while and come visit! How much longer do you think you might be in Los Alamos? We might head back for a little bit either in July or January, although we’re not sure what is going to happen at this point.

    And, finally, I am so stoked about all your posts! Thanks for keeping us up-to-date. I love hearing how you guys are doing!! Much love!

  7. Hey Julia!

    I’m glad you guys have a diagnosis. Actually there is a 14 year old boy who was in my Sunday school class last year with a very similar CP diagnosis. His disability is just physical, but he still plays lacrosse and other sports. He goofs off in class, hates school, and teases the girls in the class.

    I also really enjoy hearing about everything that is going on with you guys and hearing about Emmy’s progress. Sounds like she’s doing awesome. Cameron likes to count, but he gets stuck on 13…. and just repeats it over and over and over.

  8. The thing about Emmy’s infinite counting loop cracks me up!! Good for her on all the counting and letter-naming. And SHEESH, the POTTY-TRAINING!!

    I love these two pictures in this post. Emmy is SO DANG CUTE. And I get to be related to her! Sah-WEET!

    Kaylee’s plenty cute too, but I see only one picture of her (CUTE Valentine’s Day outfits!), and I want more. Don’t make me come down there. (Well, never mind; I wouldn’t mind that so much, hee hee). (We’re planning on driving down for the blessing, FYI.)

    I know, I know — you do a boatload of posts and the thanks you get is your sister-in-law clamoring for more! I just love my nieces, that’s all. Oh, and their parents. Anyway — I read all your posts and loved all your posts. And even though I was there for most of the Christmas ones, they seemed even more fun to look at them through the pictures in the way you put them together. So good job, and thanks.

  9. Hurry up and get those 2 cute girls here. We’ve got plenty of playmates for them. Love you all.

  10. After surfing the web for updates on CP, I came across your website. My daughter, Sheyenne, has now just recently celebrated her 13 birthday. She is the youngest and the only who was born with this minor complication. I noticed when she was about 5 months old, and she was examined by aproximately 15 to 20 doctors. Several of the physicians dismissed her condition for something she would eventually outgrow. Well, the same as you, I was torn between being delighted & heartbroken when Dr. Brown gave me a true diagnosis with a detailed explanation as to why it took so long for someone to know of the condition. She has a minor case and this has affected her left leg and left hand along with her speech. She has been in therepy since she was 2 years old, both speech and physical. I have gone to several appt. with Shriner’s children’s hospital to keep up with her progress. I have refused any invasive surgeries or experimental rememdies. She is beautiful, happy, outgoing, and loves more than anyone I know. I learned don’t fix what isn’t broken and allow my her to grow because she will. She is growing normal, she has a few limitations, but most are limitations place because of my fear she will be injured physically or by some other child’s comments. With everything she has accomplished and everything we have gone thru together, she is very strong and confident. She has only once came to me crying because another child made fun of her walk. I had explained to her what options she had for responses and everyone has “defects”, their defects could probably not be seen but definitely can be heard (only if we want to hear the defects). So she has the understanding that she has the option of not listening just like she had the option to walk, run, and climb even when I thought she wouldn’t be able to just because she couldn’t crawl. So giving her the understanding that she is very strong and capable of doing several things and giving her a clear understanding of her differences and similarities allows her to know where she stands and how far she can go. I’ve have looked at and read all sort of material that involves CP. Now, the one thing that I have always had a struggle with is the public school system. I have dealt with the teacher who wanted to place Sheyenne in a “special” class because she couldn’t understand what she was saying sometimes, but I didn’t allow it. She is going to regular class and she is not exempt from taking any test. Nor will I allow them to set her aside when there is a physically challenging activity that they might feel she will struggle with. I’ve had to explain to them time and time again, do not keep her from anything she wants to try. So, far there isn’t anything yet she hasn’t tried. So give her a positive outlook of life always, don’t give her negatives (everyone else will be dishing that out). Keep reading up on options for therapy or break throughs, but keep in mind, ask yourself always, is the treatment really worth her suffering, unnecessarily. Only then you can make a better choice for her. I was trying to make this a brief comment but this really hit home.
    Wish you and your kids the best! Chiquita….

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