Calley - posted on 04/27/2009 ( 31 moms have responded )
I am hoping to hear from other moms about the struggles and joys they have with raising a child with CMV. I often feel alone as I look around to find something in common with other parents. I am hopeful to talk to some of you about what we have in common.
I find it amazing that Congenital CMV is one of the most common congenital infections, yet so many of us had never heard of it before our child was diagnosed. Long after it was too late to try to prevent it. My daughter received a six week dose of Gancyclovir to kill off the virus while in the NICU.
My daughter Evie is so incredibly happy. She giggles all the time, finds just about everything funny. She has such a sweet personality. She is nearly 18 months old and is slowly learning to do things. Lately she has seemed to be more interested in exploring the limited world around her.
The AEA thinks she is about 10 + months behind in development. We appreciate having that knowledge, it seems to help other people understand why she looks and acts like a baby still. She is proving to us though that we are on HER schedule, on HER time, and that she will do WHAT she wants, WHEN she wants.
She is holding her head and trunk more upright lately and learning to self adjust, keeping herself up and not just falling over. She can roll from both directions and can scoot on her back to where she wants to go.
Evie struggled with hypertonicity when she first came home, and sometimes now, but it is less frequent. She now has to fight Low Muscle tone.
She has struggled with gaining weight since she was choking on baby food for awhile. That is getting better with practice, but she doesn't eat very much through the day, she is now on High Calorie formula and food. She can feed herself with a bottle.
Evie has profound bilateral hearing loss. She has a Cochlear Implant on her right ear and a hearing aid on the left. She pulls them both off all the time. We are signing to her and talking to her. We want her to learn from every way she can. She signs "more" and seems to understand it when spoken. She says, "mamamamama" and usually just to me or when she wants me. No other spoken or signed language though.
Her eyesight is good so far, but she doesn't always track things with her eyes together. She actually prefers to not look at things when she is hearing and touching it at the same time. Too much stimuli?
Evie receives PT, OT, and Speech Pathology thru a local Rehab center. She has AEA come in for OT and Hearing Impaired lessons. She has a Neurologist and an Audiologist, and tired parents.
Please respond to this to let me know what your child is going through.