Jun 14, 2011

Nothing But Time

You know you've been at this special needs/medical complex kiddo thing too long when you no longer are annoyed beyond belief when you wait for 2 hours to see the doctor. Really though what's the point of getting upset? It wouldn't change anything other than making us more miserable. After its happened dozens of times you learn. So now we take it in good stride as "par for the course" as we play our favorite hospital game....."watch the clock".  Our appointment time: 12:45. Actual appointment time? 2:35.

Ainsley can be a rascal when she's overly tired, as the following pictures show. 

 Yes, she is drinking her lunch (while doing tricks). More about that another time.

 Getting bored (reallllly?!) she decided she wanted to crawl around the room. At the hospital this is ill-advised so we said no. So she then decided to get herself out of her stroller. I think that look says "Oh yeah?! Watch me."

 It's no easy effort for her.

And when she does stand the stroller and the suction machine go falling. We can't get that wheelchair soon enough. It's back from the shop but we are waiting on funding approval after their mistake of not getting the tie downs. Ridiculous is what it is. She is 42 pounds and 43.5" tall and far too big to ride in a Maclaren Volo. But hurray, she was able to get herself out by herself, another first!

She's so pleased with herself. And we are too. She's getting to be very independently minded.

Somehow she managed to stayed awake so the surgeon could see her eyes for the first time since the eyelid surgery.

Here you can kind of see that the hair of the brow is a bit lower than the actual brow bone (okay brow prosthetic). When she is relaxed and you lift the brow up a few millimeters it lines up nicely and her eyes appear more open.  You just have to love that smile, I just wish we could see her eyes when she smiles.

He didn't get the letter from the occuloplastic surgeon (it may be in his inbox) but is going to follow up with him to find out exactly what he has in mind because some styles of brow lifts (depending on how it's done/at what level) can make it harder to use the brow to lift the eyelid (not what we want). He wants to wait until it's been a year since her eyelid surgery so she is fully healed, so we are looking at December 2011 at the soonest but in the mean time they will discuss the best plan of action for her. They may determine that some other course of action would be better, such as a frontalis sling. Hopefully their plan will not involve waiting until she is a teenager.

Once again he said what an incredibly complex case Ainsley's is.  Though primarily she had sagittal craniosynostosis things were very much complicated by the absence of her greater sphenoid wings.  The fact that she has a weakness of the lid muscle in addition to the surgery that reshaped her forehead and replaced the sphenoid wings (It changed the shape of her eye orbits, her forehead shape, the position of the skin over the forehead, the position of the levator, the frontalis, the slant of her eyes as well as the possibility that there could be damage to the muscles from swelling.) makes it all rather difficult to sort out what the problem is and how to fix it, even for a highly experienced craniofacial surgeon and occuloplastic surgeon.  Luckily I had my handy photos with me to show him the progression again and he was able to see (among other things) that the brow implants that I'd suggested did in fact help her which goes to illustrate that what he would typical expect to see is not necessarily the case with Ainsley. A picture being worth a thousand words and all that I think it's always better for them to rely on images rather than their memory of how she's looked along the way.

As for her head shape: He said that unless she develops vomiting, headaches and other signs of intracranial pressure they would not operate.  So that's good. It is typical that the shape changes over time and wants to return to it's original shape and since her head size is almost mature it will most likely be okay. I was a bit concerned about the sudden change. So this was reassuring.

All this means that we will likely get through the summer without a surgery and that would be nice. I don't know about you but I am looking forward to summer!!!! Ainsley's last day of school is Friday. Evie & Adrian's is next Wednesday.  If only we could get some sun.


  1. I know! I always laugh when someone complains to me about having to wait at an appointment. Oh, the time we've wasted sitting in waiting and exam rooms! We go prepared and wait patiently.

    All that brow stuff is confusing! I really hope they can figure out the best way to go for her.

    I am glad that you get to have summer with no surgeries. That was a plus for us this year, too.

  2. HA! You're better than me, I still get quite irked over the garbage of waiting.
    I quote you
    "And when she does stand the stroller and the suction machine go falling."
    Laughed out loud on that one, no matter how many times that stroller toppels over I never remember.
    That is very funny to me, because it happens so very often, and I can visualize it in my head each time it has happened.

    Ainsley I am impressed with your waiting skills also.
    I think the Doctor's need to pack everything up like we do and then sit and wait like we so often do.

    I hope you get her brow detail in order and everything falls into place, she and your family deserve it to be smooth every once in a while.
    I hope your summer is filled with beautiful memories with the family.
    I only wish I lived closer so that we could tap a cold one together and watch all the kiddo's frolick in the sprinklers. Gage and Ainsley could chalk the heck out of that cool front driveway you now have.

    Hugs and Love you much.