I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, August 8, 2014

New Specs!

Alex has worn traditional glasses for years now, but she had an eye appointment a few weeks back and we talked a lot about the use of prisms with her.  Alex's eyes don't converge (meaning her eyes do not work together when she's trying to focus on something).  When you read or look at a close object, your eyes need to turn inward together to focus and Alex seems to be all over the place when she's trying to focus or grab at something.   Lately we have been working a lot with flash cards - Tammy asked Alex if she could read one day and Alex kind of rolled her eyes at her and then raised her eyebrows to say yes so Tammy got some flash cards that only had words on them - colors specifically.   When you ask Alex to pick which color you're asking her for she tends to do more of a swipe to reach out and you can't really gauge if she's actually picking what you are asking for.  She looks at the right answer, but it's hard to gauge her accuracy with the swipe. 

This is a pretty good example of how prisms are used to correct deviations of the eyes by altering the
position of an object. 

Shannon started working with her and prism therapy at her physical therapy session this week and gave us some 'vision therapy' to work on with her.  When Shannon put the prism glasses on her she looked all around, she was clearly being super observant with them on so it really makes me wonder how she is actually seeing things.  Plus, she was SO happy the whole time she had them on.  Once her session was over I put the glasses on and it was interesting to see how they worked.

Here she is at therapy rocking out her Harry Potter impersonation :)

....and here she is leaving the eye doctor with her new glasses that have the prisms built into her prescription.  This is the first time she's ever gotten Micraflex glasses - they are totally soft and flexible and have no metal or plastic pieces or even hinges so she can twist them, bend them, eat them and everything she's done to mangle all of her previous glasses!  I was a little worried they were going to look like swim goggles, but they actually look pretty cute on her :)

The first two days she's done great with them - we can definitely tell she's trying to get use to them and she's been twisting her head a little and looking out of the sides of glasses at certain things, but like anything else, I'm sure she just needs time to adjust to them.

The other night after I gave her a shower I put her in her fancy new bean bag chair to watch TV while I cleaned up the bathroom.  When I came back into her room I started laughing to my self - she just looked so "typical" watching TV with her glasses on and her legs crossed. 

I would give anything to know what's going on in that mind of hers!

Sunday, August 3, 2014

An Update On My Boys

To say there's never a dull moment in the Hayes house seems like an understatement lately.  We went in two weeks ago for Aaron's procedure to remove the melanoma in his chest.  

Our Facebook Pre-Surgery Selfie :) 

You would think with everything I have dealt with with Alex that I would have a pretty high tolerance for things....um, nope!  I was allowed to be in the room for his procedure, but I wound up having to leave.  

I was ok for the beginning, and the doctor marking his chest....(this is where she marked him - it looks like an eyeball!) - and then she numbed him and it started getting really hard to watch.  Once she started talking about what she was actually going to do I had to exit the room.  I felt really bad leaving the room and leaving him alone.  We have been together for almost 16 years and other than having his wisdom teeth removed, I've never been in a doctor's office with him, never been that worried about him, and as much as I wanted to be in the room with him holding his hand, I didn't think attention should be taken off of him because they had to pick me up off the floor!

The doctor had to cut deeper than she initially thought she was going to have to and he has 12 stitches underneath his skin and 21 stitches on top.  I'm embarrassed to admit it, but I  was never really a sun screen user.  I'm a fanatic about it with the kids, but never myself.  After all of this, I will NEVER, NOT use sun screen again. 

I'm pretty proud of myself and my nursing abilities changing his bandages now!

Last Wednesday I got home from work and was changing when the phone rang.  Aaron answered and I could only hear his side of the conversation which went something like this:  "I'm fine, how are you?, Ok, Really?  What is it?  Can you spell that?  What does that mean?"  Immediately, I said out loud, "You have got to be kidding me, what now?!?"  I thought they were talking about his pathology report.  WRONG.  Two posts back I posted about Zach having something removed from his ear the week before Aaron's procedure.  Initially the doctor wasn't even going to send Zach's sample off to pathology but given Aaron's new diagnosis she opted to send it off just to be on the safe side.  When we went in for Aaron's procedure I asked if Zach's report had come back and she had told me that it had come back inconclusive and they had to send it back out to another pathologist but not to worry.   Mmm hmm, that should have sent red flags flying right there.  

SO, what are the odds that after almost 13 years I still have an un-diagnosed child?
What are the odds that my husband and my son wind up at the same surgeon in the same week?
What are the odds that my husband and my son wind up receiving diagnosis' in the same week?
What are the odds that both of them have to have procedures done in the same week?
What are the odds that Zach will wind up with a precursor for melanoma called  Atypical Spitz Nevus - OH WAIT, I ACTUALLY DO know the answer to that one....7 in 100,000.  Really, 7 IN 100,000?
....and I can't win $5 off a scratch off lottery ticket.

What they removed off Zach's ear turned out to be an atypical spitz nevus.  When the doctor called she said that Zach had to go back in and have more cells removed from his ear so we were back again this past Friday.   Starting to feel like they should charge me rent there.

One little nervous guy with his dad.

The doctor came in and she walked Zach through every single step of what she was going to do.  He was fine until she said stitches.  Zach has never had stitches before.  Obviously Zach has seen Aaron's stitches and has seen him hurting pretty good the last week so his fear was he was going to look and feel like his dad. We completely down played everything and once we dismissed all those fears the doctor marked and numbed his ear and he was good to go.

And he was SO BRAVE and he did SO great during the whole thing.  I think he was most excited that he was able to pick what color he wanted his stitches to be so he, of course, picked blue - the same color that dad got.  5 stitches later and he was all done.

I feel like for the last month and a half my life has revolved around two week time cycles.  We have to wait two more weeks to get Zach's new pathology report back.  She did a full body scan on him while he was there and he will have to be seen three times a year, indefinitely.

While we were there Aaron's results literally came in while she was taking care of Zach.  THANK THE LORD she got all of Aaron's melanoma and his margins looked great.   When he had his original procedure done she removed two additional suspicious spots - one on his shoulder and one on his back. Both of those came back atypical.  Seriously?  What she said though was that she didn't have to re-cut him in those areas, but the report tells her he's likely to develop melanoma, which seems like the cart before the horse in this case, because we already know that.  Aaron will be followed, forever, every six months.  And I don't really think I'm ever, ever going to breath easy ever again.