Hadley's eye appointment was this afternoon. She has been diagnosed with Congenital Nystagmus. This is the involuntary rhythmic movement of the eyes. Often described as "dancing", "jiggling" or "jumping" of the eyes. Nystagmus usually represents an eye or a brain problem. To rule out the brain problem they will be scheduling her for an MRI. She will be sedated to be able to have the MRI. Since this is a congenital issue that we may never know the cause of it and treatment will depend on the final diagnosis. Possibilities are surgery to alter the eye muscles causing the involuntary movement or eyeglasses.
The effect of this some of you may have noticed. She does not hold her head up straight. She bobs to the side (usually left) or looks up at you with her head down. I have blogged before about it being my favorite look - like her head it just too heavy to lift up. Well, she is actually doing this to help stop or slow down the movement of her eyes for her to be able to focus.
We are just taking it step by step right now. Won't know of any long term effects till we know exactly what we are dealing with and if the surgery would be an option. Most likely she will have this the rest of her life as there is no cure. Please say a prayer for our little Ms. Hadley with the beautiful blue eyes and long eyelashes.
The effect of this some of you may have noticed. She does not hold her head up straight. She bobs to the side (usually left) or looks up at you with her head down. I have blogged before about it being my favorite look - like her head it just too heavy to lift up. Well, she is actually doing this to help stop or slow down the movement of her eyes for her to be able to focus.
We are just taking it step by step right now. Won't know of any long term effects till we know exactly what we are dealing with and if the surgery would be an option. Most likely she will have this the rest of her life as there is no cure. Please say a prayer for our little Ms. Hadley with the beautiful blue eyes and long eyelashes.
8 comments:
Please know we will be praying for Hadley. But also know I have a friend and her daughter who also have this disorder. My friend has learned to live with it since 50 years ago there was nothing to do for it. She does everything that anyone else does including driving. Her daughter had the surgery and you would never know she had it. She did have to wear glasses when she was younger in order to let her eyes mature until the surgery. She is now a beautiful teenage girl ready to graduate this year and is a very good ballet dancer and hopes to go to school to dance.
We are praying for all of you and hope it turns out to be minimal and can be corrected. She is the most beautiful and precious baby girl! We send our love!
We are keeping her in our thoughts and prayers that everything will be okay. Please give her and Sean too lots of extra hugs and kisses. Looking forward to seeing you at Thanksgiving
Bless her little heart (and yours too)! We are very hopeful that everything to be okay. Thanks for letting us know and please keep us posted. You are in our thoughts and prayers. Much love to you all!
Emily, Jeff, Kayla, & Brynn
Oh, sweetie..bless your heart!! We will be praying for her for sure. It's so hard when our little ones are sick and even worse when they need surgery. Please know we are here for you guys. ((HUGS))
~Melissa
Hi Pat and Erynn
Please know we have you all in our prayers,God Bless your little sweetie, she is so beautiful and we know God will watch over for her.
Love always
Uncle Jim and Aunt Joanie
You guys are always in my daily prayers and I will pray extra hard for your beautiful daughter Hadley. Hugs to all of you!
Steph
It's just a little something to make her special and to keep your parental urges and anxieties honed. Nothing could make us (or you) lover her less! And someday, she'll use that come hither look to get her way with anyone!! We're praying for her and for Pat and Erynn.
Love, Regan
Post a Comment