Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, September 19, 2012

Cranial Vault Reconstruction - 2 weeks post-op

I can't believe it's already been 2 weeks since Meagan's surgery! The time is just flying...being home, getting back into our routines, carpools, dance classes, teaching, and all Meagan's doctor appointments and therapies picking back up.  It is a very busy time, but so blessed to be home still with no complications from surgery (fingers crossed!).

Since surgery, some things have improved.  I've noticed her being more vocal.  She has cooed quite a bit beforehand... but lately I've noticed her "babbling" more. She has added a few audible "consanants" to her sounds.  So far I have heard "dadadadadadadada" and "nanananananana."  She doesn't seem to apply these sounds to anyone or anything in particular, and it is completely random when it will happen, but it's very exciting to see her taking this new step in her communication.  This has been very suddenly.. within the last 8-9 days, so I do wonder how her brain is reacting to all the new space in her skull!   I've also noticed her seizure activity I was seeing has significantly slowed. We didn't change her daily meds, so I think things are "settling out" finally since the trauma of the surgery.  Both things I'm incredibly thankful for!

Other things are still a little slow-going... she seems "stalled" physically.  I know she may just be growing in other ways, so I"m not overly stressed about it.  It's simply an observation I've made as of late.  She also has fewer times per day where she is her smiley and happy self "on demand."  Is she still content? Yes.  Do I feel it's less often per day? Yes.  Partly, I *think* it's because she is sleeping more (whether it be growth spurt, post-surgery, or a combination of both), but her awake times also seem more "contemplative" these days... as compared to how immediately happy as she used to be.  So we will wait and see if these things improve at all, or if this is just her new "normal."

One thing that was a pleasant surprise is Meagan's head shape.  Again, I know this sounds silly....but I really missed Meagan's old head! As Meagan's swelling has gone down though, some bumps and ridges have reappeared! Now, I realize this may change (and I truly hope it will because it will indicate brain growth, which was the whole point for this surgery ...allowing more space), however, for now, it makes the transition a bit easier to feel some of those old familiar bones.  Her forehead is significantly different, but the ridge on top of her head has reappeared.  It's nice to see a little of the "old Meagan" transitioning along with the "new Meagan."  I'm excited to see how things continue to change over these next few months of recovery.

There are also some new things happening with the re-configuration of her skull bones.  She has a lot of "spaces" around her head now.  The easiest way I can describe these spaces is to compare them to a "typical" baby's soft spot.  It's like she has several soft spots scattered around now where they have spaced out the formerly fused bones.  One thing I've noticed is when she is snuggling me, sound asleep, her head now moves with her breathing in these spaces! It is somewhat strange, and somewhat cool.  So now when she is sleeping next to me, this is what I see:

On top of her regular recovery 'stuff', we are also incorporating her back into her old schedule.  Dr. R said no restrictions on her therapies... just to go by her cues, and possibly give her some Advil before or after her therapy sessions if needed, so Meagan resumed her PT at Children's.  As I said, we are seeing a little regression, but honestly, I expected that after surgery and also with her larger head circumference.  (She gained 3cm on her head from the surgery).  We also have added in other therapies (frankly, therapies she should have been getting for the last 6 months at least).

Our state EI program Meagan has been "in" since birth is finally making good on their promises for therapy.  After months of micommunications, unanswered emails, frustrating conversations, and still no change in therapies for Meagan , I decided to email them again and this time copy the state director on the email.  I received a callback within a few days. (Amazing how that works).    The local director was not too happy I went above her head,  but, it did get things done didn't it!  In the end, my focus and advocacy is for Meagan and the services she needs.....not for someone's feelings because their program isn't functioning efficiently.  If it means someone gets uncomfortable because I go above their head to make them accountable for their actions, then so be it.  Needless to say, now Meagan has an OT coming to the house to work on fine motor skills and feeding. (She is starting to work on Meagan with eating off a spoon/solids as she still isn't doing so with me at home). Meagan will also get a PT through the EI program who will come to the house.  We are going to keep her private PT at Children's once a week because she has done such an excellent job, and we have a good relationship with her.  We are starting speech therapy at Children's as well.

Meagan sure is one busy little girl! 3-4 therapies per week now, post op appointments, and running everywhere with Mommy for carpools, errands, and activities.  2 weeks post-op, and life is pretty good.  We are very excited to celebrate her very special birthday this coming Sunday! How could I not be when I get to look down at this snuggling me every night!


  1. Happy almost birthday Meagan! XOXO

  2. Happy birthday Meagan!

    Way to go with getting her the services she is entitled to. We have had a great experience with our EI team. Ellie had a teacher, OT, and PT that came to the house. Now that she is 3, she is in their preschool and gets services there. I swear, its a full time job going to dr. appointments and therapy appts. I hope you have a great EI experience from here on out. Meagan is such a cutie pie.

  3. She is SO DARN CUTE! I am so happy that she is recovering so well :) Good job with EI - you need to do what you need to do for Meagan, and if someone's not doing their job, sometimes they need a little nudge... :)