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November 2015 Moms
nycmommy13
member
Prayers for my baby, please!
nycmommy13
member
Hi, everyone. If anyone is religious, my baby needs some prayers. Around 2 1/2 months old, my husband and I started noticing our baby boy's left iris looked a little like it was made of jello and would jiggle when his eye moved. It became frequent enough that we told our pediatrician who then referred us to a pediatric ophthalmologist. After examining him, she let me know that for whatever reason he's missing a good portion of his zonules, which are what hold our lenses in place behind our eyes (kind of how a trampoline is surrounded by springs holding it in place.) His left eye is worse, missing 50% of these. It has slipped down and he's in danger of the lens completely detaching by something as small as rubbing his eyes too hard to getting hit in the face by a toy, which means he would go blind in that eye. We have to see one of the best eye surgeons in NY state to determine how immediate the need is for surgery in one or both eyes. He would need the lens surgically removed and replaced with a plastic one. Already his eyes have been so damaged that his vision is blurred and we need to get him fit with baby glasses tomorrow (we picked out a snazzy pair in charcoal grey.) In addition to this probably being a dangerous procedure for a 5 month old, the cause for this eye disorder tends to be either trauma to the eye, of which he's had none, or a genetic disease/syndrome. We're facing the possibility that there could be an underlying cause that's a lot worse than this symptom we're experiencing now. My husband and I are kind of in a daze at the moment and would appreciate any support you've got!
Re: Prayers for my baby, please!
Sending my thoughts and prayers to you, your little one, and family.
Human sons: 11/2015 & 05/2017
*formerly kayemjay*
He has his glasses now and is doing so well. He is much more responsive and laughs/smiles a lot more. It's a pain during nursing and keeping them clean but other than that, it's been fine for my husband and me. LO is really good about keeping his glasses on. He only pulls them down about once or twice a day. We saw the surgeon. He said that LO will need two surgeries, one to remove his physical lenses (at which point he'll be legally blind without glasses) and one to put in permanent external lenses once he's fully grown, around the time he's 12. The question is how late they can push that first surgery. So right now they're waiting a few weeks and then putting him out to take some more exact eye measurements and see how far the lenses have moved in the past few weeks. Then they can determine how late they can push the first surgery, whether it'll be in a few weeks or in a few years. We also had an appointment with the geneticist. He drew blood to test for Marfan Syndrome and homocystinuria but said that, based on his physical examination, he doesn't look like a baby who has either of those. We're crossing our fingers he's right! Overall, this has all been really positive news. Thanks so much for all of the prayers and good wishes!