Gillian Updates: March 2006

Gillian Update

Wow, it’s been a long time since we updated this site. Can you believe Gillian will be ten months old on April 1st. So much has changed in the past few months. We are writing because we need your prayers once again. We just got back from our spina bifida clinic at UCSF and learned that Gillian will most likely need a shunt surgery. We will talk to the neurosurgeon on Tuesday afternoon to discuss his recommendations, but we are about 98% sure he will be recommending placement of a shunt. Gillie has always had a little extra cerebrospinal fluid (CSF) in the ventricles of her brain (called hydrocephalus). Up to this point, her doctors have been comfortable waiting on the surgery since all of her ultrasounds and CT scans haven’t shown much change in the amount of fluid. The one thing they’ve been concerned about is that her head circumference is getting bigger every time we measure it (to the point that it’s not following a curve on the growth chart). Apparently there have been several children they’ve seen in the same situation. Some decided to put the shunt in, and some didn’t. We were told that some of the kids who opted not to have the surgery do have some subtle neurological problems (cognitive/motor delays, etc.). It is uncertain whether a shunt would have changed their situation or not, but at this point, we don’t think we’re willing to let that happen. We are feeling really disappointed and sad about this since we thought she had beaten the odds on this one. Please pray for strength, and wisdom as we have to make this decision in the next few days.

On a happier note, Gillian is blossoming into a beautiful little girl, and is learning new things every day. She is rolling over, sitting, and scooting backwards on her tummy. We’ve also been working on standing with the help of her AFO’S (Ankle Foot Orthotics) and shoes for stability. She is such a joy! Probably the most happy, content little baby we’ve ever met (and most beautiful too… ok, I guess we’re a little biased). She loves to sit in the middle of the family room with a basket of toys or books and watch her brother’s antics. She has Occupational therapy (to work on sensory, feeding, and fine motor skills) and Physical therapy (to work on gross motor skills) every week. It’s amazing to watch her learn new skills during each session. She is our second miracle baby and we wouldn’t trade her for anything in the world!!