So today I took Caleb to the doctor to see what she thinks about the new 'lazy' eye movement in one of Caleb's eyes (this has nothing to do with the other eye issue of draining). After she examined him, she believes Caleb needs glasses. (deep sigh) I know to some glasses may not be a big deal but to most, glasses are their only 'handicap'. I am just so upset because he has so much already to deal with and now this is getting added into the mix. I mean come one, this kid had one of the rarest and severe issues with this syndrome, his immune issues, along with the brain, heart, hips, deafness, speech, the missing eye drainage and duct issue, pancreatitis, cleft lip and palate, delays, hernia, etc. We really have to throw eyes in to the mix?!? I teared up on the drive home because I found myself reverting back to my old thoughts of 'why' and 'this just isn't fair he has got enough to deal with' . Yes, I know he is strong and he will prove to everyone that this too will not get him down, but he already has sooo much to contend with. (sigh)
Well I got to get back to calling around to the limited people within our network to see who supplies kids frames and is familiar with dealing with fittings with hearing aids. So far I have only find one person in network who says that they carry kid frames, but the not many. I have one other business to call.
God Bless you all!!
God Bless Caleb and Camryn!!
5 comments:
Sorry to hear Caleb has to have glasses. Will he keep them on with his sensory issues?
He reminded me of another little one I know that needs hearing aids and glasses. Her mommy has CF and she was a preemie that was delivered at 24weeks so her mom could get a double lung transplant. Here's a post that shows her wearing both her hearing aids and glasses:
http://cfhusband.blogspot.com/2010/02/ear-accessories.html
Anyway, back to glasses. Those glasses are called MiraFlex and while I have NO idea what the insurance coverage, etc is, they seem pretty great for kiddos, esp if Caleb is going to be pulling them off often and such. Plus, they'd fit with his hearing aids in.
Here is their site:
http://miraflex.info/products.htm
Hope this helps!
Kristen
I know its hard to deal with hearing more needs to be done to help your child, but you really do have to remember this is minor compared to what he has been through. I also think glasses just make them cutier and smarter looking then they all ready are. Hang in there hun, I know the feeling and praying this helps and he does not need surgery.
Love,
Crystal and Eva
Hi Kristen,
Thanks for the info.
I am very concerned if he will keep them on. I highly doubt it, but hoping it will get better over time. He is old enough that he can rip them off even if they put a band on them too. AY YAI YAI
I just checked the Miraflex website and the doctor's listed aren't in our insurance network. So I am gonna see how much they will cost us out of pocket. It may be a lot, but probably worth it in the long run. I am gonna call around tomorrow. I'll let you know what I find out tomorrow. Thanks again Kristen!
Good news Kristen, I just read online that the miraflex frames are cheap like 20-30 bucks. so I am gonna check how much the lenses will cost. Looks like we may do that if the lenses aren't crazy expensive at one of the suppliers!
and now i just saw some which are $90. i hope not!
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