As of this moment, I am officially at wits end. Hands shaking– light headed from a very generous rush of adrenaline. I don't know what else to do. I have tried everything. So now I am extending this to anyone who may have experience to help me. This is about Ivey's prosthetic eyes. Just five minutes ago Ivey was BLUE – gasping for what little air she could – because she had removed her eyes, both of them, and slipped them into her mouth, where they lodged in her throat. In the past we have made light about it, and this is not the first time Ivey has choked on them; however, today she truly s.c.a.r.e.d me.
I have asked our ocularist, ophthalmologist, members of my MAPS group, visual teachers, therapists and any one else who might have experience or ideas with this issue. Here's the thing, the suggestions that maybe she is bored, needs to be kept busy, enjoys the attention that she gets from us telling her 'no', the idea that I should be able to watch her literally e.v.e.r.y second of the day to prevent this or anything of the latter is NOT the issue we are dealing with at this moment. Yes, I know this is a discipline issue. Unique one at that! How to go about it – well, I don't know. I have been persistent and as consistent as humanly possible. I switch toys, her location, sounds, seating, etc. I tell her 'no' vocally and by signing. We have even restrained her arms, for a lengthy time – that was allowable.
I know that there are times that she is 'bored' and that she turns inward fixating on her eyes, ears or mickey button… But the shear matter at hand is that I can not sit in front of her 24/7 to prevent her from doing these things. Today I was merely standing 10 feet from her putting the groceries away. I am at a loss. My MAPS friends have not had this issue to the extent we do.
I think Ivey is beautiful without her eyes. Matt and I don't need her to wear them to see her beauty. Yes, sometimes is public it is helpful for her to wear them – you can imagine why. It is not helpful in public when she takes them out-again you can imagine why. It is not reasonable to me that she should wear these if it is such a high risk for her choking! Why is the Lord's name should we risk loosing her. Can you imagine making to the place she is today, only to choke on these things?
So here are my questions:
- I have read the literature. Both our ophthalmologist and cranial facial surgeon highly suggest that skull development, eye sockets, etc will depend on the placement of the eyes. I look at pictures of Grace, and she looks beautiful without them and every thing is proportional. Right?
- What else can I do to keep them in?
- Who else out there does not opt for prosthetic eyes? Has that changed the growth of the skull or sockets?
10 comments:
Gwen, I know that this is frustrating for you and I'm sorry that you continue to struggle with this issue. Here's my question: is there a way that prosthetic eyes can be secured in via a "stem" or something like that? Maybe this sounds crazy, but I swear that I have read this before. What does your opthamologist and/or ocularist say? How about an oculoplastic surgeon? Not that I'm advocating for surgery for Ivey, but maybe there is a fairly simple procedure? Of course Ivey would be beautiful without her eyes, but here's another question: since her sockets/eyelids/openings are already so big, would leaving them out make her more prone to infection, injury? I know that when Ava's eyes are out being resized for the day, I'm always afraid of something finding its way into her socket. So many questions, this must be driving you nuts! I hope that you find a solution - today must have been scary. xoxo
Not sure what to tell you, I don't think that faces look misshapen with the eyes out personally myself.
We chose not to get Acer prosthetics, even though he has Micro & not Ano.
There's a link on my blog to Bethel foster home, the kids there do not have prosthetics so you can see a variety of kids & decide for yourself.
Heather BT
http://adoptakid.blogspot.com
Hey Gwen!! I'm so excited to feel settled now and catch back up on your awesome blog. Ivey looks so beautiful...seeing her again helps me feel grounded. I so, so wish I had an inkling of what to do to help you with her eyes. I bet you were scared to death, but in the usual Gwen style, I know you handled it beautifully. Love you all and miss you. Please tell Ivey that ALL the Griffeths said "hi" and that we LOVE LOVE her! Susan
Beyond my scope my friend. You are the champ of problem solving though and more so, the champion mom .... period.You'll do what's in Ivey's best interest as always.Sorry you had such a scare,I hate that part.
I have no experience to hep you but could you do something similar like what you did with her hearing aids? Didn't you have her wear hats for a time? How abut goggles or some kind of glasses to prevent her from getting to her eyes? Of course, you'd reserve them for when she is most likely to get into mischief?
OOH, the anonymous tipster did give me an idea. Acer wears the goggle style Rec-specs and they have a strap that goes around the back. The main reason to get them was for eyeball protection as he just runs headlong into things, but one unexpected side benefit was that he no longer constantly has his hand up to his eyes rubbing on them. Maybe that will help.
Heather BT
Oh Gwen, I have no advice for this, but lots of sympathy! I think about you guys so often and hope you're doing well! I wish we lived closer--it sounds like both our girls are spitfires, and it would be so fun to see them together! (Not to mention our FOUR boys!!)
Take care today, and I hope you find an answer!!
I haven't checked you blog in a few days and just found this. Do you want my honest opinion? If so, I say just leave them out. This is not worth the risk of her choking to death. It is absolutely not worth it!! And she will still be beautiful with them out. Her head is not going to sink in, her skull will still grow. Her socket space may not grow any more without prosthetics in there, but even with prosthetics sockets may not expand much. Plus, her eye sockets are very large, especially compared to Grace, and you are not going to lose all that space, so in future years, when she is older and understands what her prosthetics are, you can try with them again. This is not a now or never situation. It is absolutely okay to stop now, and you will still be able to try with eyes later. There are also adults (like Sheila E.) who had eyes and now don't wear them for personal choice reasons. There are others on the Yahoo board who never did prosthetics (check out the photo albums of Hannah & Nikki), and they look great, beautiful. And having an empty socket is okay. It is not a medical problem, not and infection issue. She can still make tears to keep her sockets clean. Grace never has eye infections, never has eye issues, never gets things stuck in her empty sockets. I hear many more problems with eye infections from those with prosthetics than those without. And if you think about it, prosthetics are a foreign object being put into the eye socket, and they are not sterilized.
So please know it is okay to just stop with the prosthetics. It is not worth losing her over this! We stopped prosthetics for a lot less than this! BIG HUGS! Call me or email me if you want to chat or vent.
Sheila
Hi Gwen,
What a scare you had. I'm so sorry for this. I can't imagine how scared you were and IVEY too!
The first thought that came to my mind is to not have her wear them. Maybe for awhile? What does the doc think about that? And no, you cant stay in front of her 24/7. Toddlers get bored. Quick. I know....I have two!
I hope you find out some answers soon.
-Shannon in Austin
I am not sure, but what comes to mind is: are they uncomfortable to her? Maybe that is why she pulls them out. I, too, can see her beauty without them.
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