THEDZCREW: Cleft Realities

Saturday, June 15, 2013

Cleft Realities

This experience has once again reminded me that cleft has realities that are hard to deal with. My child will never look the same. She went into surgery with one face and she now has a new face. It is still a cute face but it is not the face she had. It is so hard to deal with the dramatic changes and I can see them even through the swelling. I will post some photos here so everyone can see the amount of swelling she is dealing with and I will try and update these photos weekly so everyone can see the gradual changes to her face over the next 8 to 12 weeks.

The first one was at the beach on Friday of last week. The second one was Friday this week and she is smiling at me. Same smile but very swollen. The third one was taken Wednesday of this week. We are hoping she has peaked with swelling but it could get worse before it gets better. I will update photos throughout the weekend.

I would like to give a run down of what our girl has been through this week. She had what is called an Alveolar cleft bone graft. Everyone of these is different and doctors do them differently.

This is what our doctor does. He takes bone marrow from the Iliac crest. This bone is located in the hip area. Bone marrow which means this incision is on the surface small, but it is very deep. She has a huge bruise in this area. It started small and has grown all week long. The bone marrow is mixed with something called BMP or Bone Morphogenetic Compound. This cocktail is supposed to stimulate growth in the open cleft area. Clefts come in all shapes and sizes. Some are just effected by an open lip, some include an open palate, and some include an open gum bone or alveolar. Flo has all three. She had two of the three repaired until this week. The alveolar is the hardest so far and unlike the other surgeries that show immediate results, this one requires a wait of nine months. The doctors will base success on the amount of growth in the alveolar gap or open bone space in nine months. We pray for lots of growth because her opening or gap is so big. We were also told by the doctor this week that she will need her jaw repair done sooner rather than later. He is thinking next summer. I did not ask for any details. One surgery at a time.

I will continue to update her recovery over the next 12 weeks. Please leave any questions you may have under the comments sections and I will answer them the best that I can.