Thursday, November 3, 2011

Recovering From The Vitrectomy: AKA 14 Days Of Feet and Floor

Remember Fluffy?  Here he is still being brave!


Here's a quick recap.  NG was diagnosed with Morning Glory Disc Anomaly Coloboma aka Morning Glory Syndrome in January 2008.  We spent six months trying to regain some of her sight before deciding to proceed with the vitrectomy surgery to try and correct the detached retina in her right eye.  You can read about all of that here.

We left the surgery center and took NG to the house to feed her the requested meal of macaroni and cheese and begin the Iknowitsawfulrightnowbutitwillallbeworthitintheendyouonlyhave_moredaystogo two week recovery.

Here are some facts we learned about recovering from a vitrectomy.
  • a massage table and a face down lounge chair are priceless.
  • straws are necessary, you can't drink anything while remaining face down without a straw.
  • a portable DVD player is another must have.
  • it is possible to braid hair upside down.
  • it is possible to shop while remaining face down, shoe shopping is recommended.
  • people give you nasty looks when you take your child to Wal-Mart and refuse to let her lift her head, I suspect more than one person considered calling Children's Services.
  • tape, regardless of how gently, will eventually tear the skin on the face. So we quit taping her eye patch on at night and began holding it in place with a terry cloth headband we secured with a bobby pin.
  • the only way to keep a child from rolling over in her sleep (and rolling off the massage table) is to tie her to it.  So that's what I did, using blankets.
  • a man from our church made NG a special table.  She was able to look through the hole in the table top and work on her project on the shelf below.  His daughters painted and decorated it for her.  We still have that table and can't think of a single thing to do with it but I can't bring myself to get rid of it. 
  • as a parent I found allowing NG to have an extremely sweet snack extremely late at night to be a perfectly acceptable practice basically everyday she was required to be face down.
  • it was easier for NG to remember to stay face down while walking or eating when she had something to focus on.  I started putting stickers on her feet and either on the table or the floor depending on where she was.
  • it's hard to wash hair while remaining face down, but not impossible.
  • it doesn't matter how many games, movies, puzzle, or activities there are, two weeks face down still makes for a miserable two weeks.
So what did we do while NG wasn't allowed an upward glance?  We found ways to entertain her and ourselves.

We took time to visit her:

 She rested.


Since NG couldn't lift her head to watch the television she watched movies on the portable DVD player and someone usually watched with her.


She painted outside.

This is the table I mentioned.  Isn't that cool?








And she painted inside too!




She helped wash the cars

and the dogs.


We decorated the driveway







 


and we decorated our own wrapping paper.


There was play dough,

word searches,

crafts,

jewelry making,







 

car mechanicing,



and game playing.


Looking back through 18 rolls of film there are exactly 3 pictures of NG with her head up enough to see her face.









 


At the end of two very long weeks we went back to see Dr. Bradford.  NG's vision was significantly improved and after examining her eye he said it appeared that the retina had reattached.  Since we would need to continue with the eye drops to keep her eye dilated she would need to wear sunglasses at all times, but she was now allowed to raise her head.  Joy!!


How did she celebrate being able to lift her head after two long weeks?  She teamed up with her cousin Z against GG and Z's wife T for a bouncy ball fight in the hallway!


Yep, that's right.  After spending two weeks forcing her to keep her head down not only did I allow her to participate in the "Great Bouncy Ball Fight of 2008", but I also took pictures.  Well I almost had "Mommy of the Year"!

NG's vision continued to improve over the next year.  She is currently on an every 4 month appointment schedule with Dr. Bradford.  Her near vision is actually pretty good considering, and her distance vision is decent.  Morning Glory Syndrome has required NG to make some adjustments, as have we, but we've learned to live with this new normal.  We've been told that she will never have great sight, but at this time Dr. Bradford believes she will always have sight.  For that we are so thankful! 

3 comments:

  1. The men deserve some sort of award for letting her paint their nails. I seriously LOL'ed at that. :)

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  2. It was pretty funny! The truth is she painted everyone's nails, the men were just the only ones photo worthy. LOL! :)

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  3. I know this is a while after, almost a year, but seeing as you being a mother and seeing all of this first hand, I'd REALLY appreciate talking to you, I would be incredibly grateful if you could e-mail me at meghanbaumann@yahoo.com

    But let me tell you a bit why I'd be grateful if you did. I also have Morning Glory Syndrome. Fortunately, in only one eye. I was diagnosed with it when I was three, and I am now seventeen.
    I understand that a lot of people are strong, and don't let it bother them that much, but I let it bother me. Not when I was young, but ever since I was thirteen, I've worn my bangs completely over my right eye (mgs eye) so no one would know. I cry about it often, and it gets me very depressed at time. I'm not very sad that I don't have much of any vision in this eye, but I am majorly affected by the fact that I do have a lazy eye. If I were to have a surgery that helped my eye not be lazy, I would be very happy..

    SO, to my point, the purpose of me telling you these things, and trying to get in contact with you is, I am curious as to more details about the surgery, and if her eye ever.. opens back up (I know it may seem like a silly question but again, I'm very curious as to the fact that this surgery is very high possibility in my near future) and if it is lazy, or if you know if it will cure a lazy eye?

    Please, PLEASE, if you see this, contact me.
    Again, my email is meghanbaumann@yahoo.com

    Thank you x

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