Charlotte’s Cleft Journey


I went back to Atlanta this past Thursday for speech therapy with Charlotte.

They did nasometry, a test that measures how much air is being pushed out of her nose during speech. Normal range is between 15 and 30. Hers is at 48 so quite a bit of air is escaping.

Sitting in the tiny room with Charlotte and the speech therapist was heartbreaking. I realized how hard she struggles with her speech and how much she’ll have to overcome. I know the surgery to repair her cleft and create a pharyngeal flap will help quite a bit but there are physical habits she’s developed to compensate that we will have to overcome and will need therapy for once the surgery has healed and she’s been cleared to pick back up with therapy.

It was very difficult for me not to cry as I realized the road that lay before us. When she was in the NICU, I was grateful her condition would not require life-long intensive care. I am slowly realizing that while not intensive, her condition will require life-long attention and therapy. Right now our focus is on speech but there will be dental issues, potential additional cleft repairs if for some reason it splits again as she grows.I also can’t help but blame myself a bit for waiting so long to return to the clinic with her. But i know that given the struggle I’m having with it now, completely recovered, I know I could not have handled it before now. She’s been thriving and it’s ok. It IS ok. Just need to keep telling myself that!

While we were in Atlanta, the Plastic Surgeon’s office called. We have a tenative surgery date for April 13th with pre-op on the 31st of March, just 10 days after her 3rd birthday. They wanted to originally do the surgery on the 2nd but we have a trip to Grammy & Pop’s scheduled for the 5th-11th so I asked if we could move it back. Thankfully they were able to do so.

Charlotte wants me to spend the night with her in the hospital (if she has to spend the night – we don’t know this yet). As of right now, the procedures planned for the 13th are: Soft Palate Cleft Repair, Pharyngoplasty (the creation of a naso-pharyngeal flap that will cut off the air escaping through her nose when she speaks), and her second set of ear tubes.

Keep us in your prayers as we move forward with all of this. I will be doing my best to keep up with the blog here but if for some reason I disapear for a few days, you’ll know why!

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