Monday, January 25, 2016

Craniosynostosis.....

Today, is a post all about Annalise!  I know many have asked me why she still gets scans and then when I try to explain things it is pretty confusing, so I thought I would just clear it all up on a blog post.  Because, that's how all good communication happens right?

Annalise has a very interesting past, but I don't feel it necessary to tell the whole backstory of how she came into care, etc.  Honestly, I just don't feel that is my story to tell right now.  However, she was born with a medical condition that requires we spend quite a bit of time at Childrens for follow up.

When Annalise was born she lacked a very important part of development....she was born without a soft spot.  Now, let me tell you....before we met Annalise I thought that was just something that doctors felt for good measure at well child visits.  You know, they look in the diaper, pump the legs and feel the head.  All good.  Well, it actually turns out this thing is pretty darn important.  Basically, a baby has to have this to allow their brain to grow.  As the bones (and brain) in the head grow and fill in, the soft spot gets smaller and smaller and eventually closes up.  It's also important that the soft spot close, because that means the bones have filled in.  So to make sure we are on the same page:  Soft spot when born=good.  Soft spot closing at appropriate age=good.

So, Annalise was born with a condition called left coronal craniosynostosis.  Luckily, she had a PCP that noticed this and sent her to Childrens and she had surgery on this sometime between 9 and 10 months of age.  Now, this wasn't just any surgery.  It was a major head surgery.  They basically created several soft spots to give the brain room to grow and then did major reconstructive surgery (by a plastic surgeon) to help her head shape.  

After this surgery, there are two things that can happen as a result.  Bones can fuse too soon again (which is what happens to cause craniosynostois in the first place) and you can be left with bone voids.  Basically, the risk is low for either of these to happen and our precious Annalise has both conditions.  The bone in her forehead has fused too soon causing a ridge in the middle of her forehead.  They also had to "guess" (albeit educated) when they did the original surgery on how far out to extend her forehead.  Unfortunately, they were slightly off.  So we are dealing with a couple of things on her forehead.  A bone fusion, and a forehead that is slightly 'off'.  

Now, on to the bone voids....this is where they created multiple 'man made' soft spots in her head and basically bone never grew and filled them in.  The scan we did (which looks CRAZY with these voids by the way) shows around 5 spots that haven't filled in.  What does that mean?  It means she basically has holes in her head, under the skin, that are unprotected and that's no good.  Especially if your favorite thing to do is flip off the couch.  

So long story kinda short.....we had to decide whether to do a major head surgery to correct her forehead right now.  It would be done in the next few weeks and when I say it's major....I mean, it's major.  I have been so torn the last few weeks on what to do, but after meeting with her team of docs Friday, we feel the best answer is to forgo that surgery and just worry about the bone voids.  The forehead is not that bad, and we have made MAJOR progress in therapy and feel this would be a huge setback (she was diagnosed with PTSD last year).  The plastic surgeon agreed, after some time, and the neurosurgeon was in favor on not doing it as well.  The surgery would mean opening and exposing her brain, and we are worried about further cognitive delays with that.  

So where does that leave us?  Well, the bone voids have to be fixed.  They will give them until age 5 to get as small as they can (several are small...one is large) and then those will require surgery to fix.  It is still major surgery, but way less so than the reconstructive forehead surgery.  It would mean grafting bone from Annalise's hips or ribs and filling in each soft spot.  They want this done by school age because it's just too dangerous to send kids to school with so many voids.  However, the catch 22 is that they also want to wait as long as possible to allow as much closure as possible.  While they are doing the bone voids, they can also do what is called camouflaging and make some of the bones that protrude in her forehead smaller.  

And while I am laying it all out there, the neurosurgeon is also concerned about her right eye.  The scan shows it sagging significantly and she isn't pleased with her progress.  We will tackle that beast next month at the ophthalmology appointment and the neurosurgeon wants to step in on that as well.

Friday, I asked several times if the voids could possibly go away completely and then we would not have to do anything.  The surgeon said no.  However, what I do know, is that we serve a BIG God.  He can close those voids tonight, or He can allow them to remain open and in a year we have surgery.  Annalise is the toughest cookie I have ever met.  She is 4 years old and gone through more than most kids her age.  She has come from being in OT, Speech, and PT full time to being in quarterly OT only.  She is battling a PTSD diagnosis and 2 weeks ago, she actually played with the child life specialists MRI tube at the hospital.  She was at Childrens from 11:00-3:30 Friday and not once did she melt down, close up or become physically ill.  She is a fighter and I am adamant that one day this child will do big things.  As a mom, I hate that everything hard seems to be dealt to her, but I also know things aren't promised to be easy.  

So in the meantime, you can do 2 things....first of all, pray that these spots miraculously close in a year and second of all, if you ever see Annalise doing flips or jumping, please dive bomb in there and protect that head!!  

1 comment:

  1. adding her to my war room! we serve a BIG God, like you said! and this is going to be an amazing testimony for annalise one day - to have been able to overcome all these adversities with the power of Jesus! so awesome y'all are fighting with your fighter, this child born of your heart! <3<3<3

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