ivi grace - surgery update 5 | what now?

It’s incredible to be home. To see Ivi Grace in her own environment and just the familiarity of home makes a huge difference in attitude for everyone. She has been in some pain, as would be expected, but we are trying to control it with Motrin and Tylenol. Her incision basically goes from one ear to the other across her head. There are 68 stitches holding it together. Christi washes Ivi Grace’s head wound with a special cleanser and anointment from the hospital twice a day. We are to let the cut be exposed to the air and heal on its on. So far, it looks good.

Christi and Ivi Grace at our front door right as we came home. The sign says it all.

Christi and Ivi Grace at our front door right as we came home. The sign says it all.

Now what? Well, Ivi Grace will be mostly house bound for the next month as we keep a close eye on her. We have to watch that she doesn’t hit her head on anything, which can be difficult since she started walking. Also, the doctor doesn’t want her sleeping or putting weight on the right side of her head, so we are figuring out some unique techniques to keep her from doing that.

We go the see the cranio-surgeon and neuro-surgeon for a check up in Charlotte this Friday. Within a couple of weeks, Ivi Grace will have her head scanned again and have another DOC band made. See an earlier blog post here about her first DOC band. She wore one this summer and it did what it could do considering it was pre-surgery. Now that the surgery is complete, this new band should be quite effective in reshaping some of her head as it grows. In a nutshell, the band redirects future growth. I imagine she’ll be wearing it for several months because her head is not growing as fast as it was before. One positive about the band is that it will help to protect her head as it heals. I wish we had one right now. It’s quite amazing how they scan a child for their own special helmet. See the video at the bottom to see how they scan a baby’s head for the DOC band.

Many of you have asked about future surgery and treatment. It is too early to say at the moment. The doctor has told us he may have to go back in at some point as Ivi Grace grows to perform more surgery. She will also most likely have some jaw alignment problems as she ages, and these might require surgery and orthodontic treatment. We will also have to continue weekly in-home therapy treatment for her torticolis (head tilt) as well as visits to the chiropractor on a regular basis. In any case, she is a long way from being finished with her treatment, but I believe the worst is behind her.

I want to end by saying thank you. There are so many people to thank that I will not endeavor to name names. Just know that each of who have prayed and shared of yourselves during this time have given Ivi Grace, Christi and myself more than you’ll ever know. Thank you for loving us. We love you.