An open letter regarding Emme Blu’s health

Most of you know when Emme was 5 1/2 months old she had a craniofacial reconstruction to correct and open up the metopic or middle suture in the cranium. In laymen’s terms she was born without a soft spot only in the suture that extends from the forehead to the crown. I won’t go into all the details as they are posted on my website. This surgery was successful and she recovered well. Several months ago while I was washing her hair she pulled away from me and kinda gave a grunt of sorts. I asked if that area was hurting. She said that sometimes it does. As I felt closer above her left ear there is a noticeable lump. I brought this to Melissa’s attention and we have watched it and periodically asked Emme about it. Finally we decided it would be a good idea to have her surgeon look at this.

Upon his initial exam he confirmed this was a piece of hardware that wasn’t reabsorbed by the bone. In order to hold these “soft spots” open there were several dissolving plates and screws that were inserted in various locations. As he continued to feel around he expressed concern about some other areas that felt open. A CT scan would show in fact there were a few spaces that had not closed off. These were detected a few years ago on our last visit but the doctor had no concern as her body was still producing bone growth and calcification. However, medically speaking she has now produced about all she will.

Emme is in no eminent danger. The spaces are about the size of a thumb nail. Dr. Kelly said it would take a freak accident to create any issues. But if you know your cranium is not fully in tact it’s best to fix it. As you can expect we are more aware and concerned when she hits her head or falls. The surgery to correct this is much like the first surgery without having to open the cranium. She would still have the incision from ear to ear reopened. They would fill these spaces, and remove the hardware as needed. This would require a week’s stay in intensive care and 12 weeks restricted activity as she recovers. We don’t want this. We are believing God to perform a miracle and cause bone growth to fill in these spaces! Jeremiah 29:11 says “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” That’s enough for me!

With the doctor’s “okay”, Melissa and I have chosen to wait for one year and revisit the doctor and repeat the CT scan. And let’s see what God has done!

While this is difficult news for us we have been down this road before. We have stood in the pediatric ICU and watched parents care and grieve over children who will probably never go home. The CT scan results could have been brain tumor, cancer, and a host of other things. What we might face is fixable. That in itself brings a level of comfort.

You will be updated if there are any developments over the next year. Your prayers are appreciated very much.

-Shannon, Melissa & Emme Blu