Benja medical update

Yesterday morning Benjamin was sedated at the hospital for some more testing of his jaw issues.

For those who are new to my blog or don’t know – Benjamin was born with Pierre Robin Sequence. Pierre Robin causes an abnormally small jaw, large tongue set far back in the back of the throat and breathing difficulties.  He has a very large cleft palate.   In addition to his tiny jaw it became clear when we adopted him that he couldn’t open his mouth very far.  Just a few centimeters.  From what I can tell this isn’t a Pierre Robin issue but something different.  He has been examined many times by many specialists to try and determine what they are going to do to fix his jaw.  He for sure needs a distraction (google it – ouch) but they haven’t been able to figure out exactly what is causing his jaw to be stuck in the shut position and how to fix it.

So yesterday they hoped to have our answer after they examined his jaw under sedation.

The surgeons came back after they were done and shared with me that they are about 90% certain that it is a problem with his condyle.   There is a 10% chance it is a problem with his coronoid.  (you can google pictures of those if you want to know what they are – I had to.) Since they aren’t 100% sure (and they are very different surgeries and procedures to fix them) they want to wait and have him seen by another specialist in July (yes, July) who has just been hired by our hospital.  Our main surgeon (who I really like) assured me that if it was his child he would wait until this specialist could see Benja and be involved in the surgery.

I told the surgeons I wasn’t in a hurry for him to have surgery (what mom is?) but I do want him to have the best chance possible to learn to talk (if he’s able) and chew.  I just feel like the longer he isn’t able to do these things the harder it might be for him to learn them later.

They did say that they think they can do the jaw condyle or coronoid surgery at the same time as putting in the mandibular distractor so that would mean (hopefully) only one jaw surgery instead of two.

So we got some new information but now we’re back to more waiting.  They told us one of the defects is an “easy fix” and the other is a “serious surgery” and if he does indeed have a problem with that part of the jaw he’ll need extensive follow up care and possibly more surgeries as he grows.  We’re hoping it’s the “easy fix” problem but prepared that it may not be.

Thanks for thinking about and praying for our little guy.  Benja, of course, charmed all the ladies he encountered and we got to share our story (and talk about special needs adoption) with several sweet nurses who were very interested.  One asked me to email her more info!  Maybe another precious little one will find a family through all this??  :)

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3 Comments to “Benja medical update”

  1. He’s adorable…I hope you can get good information and a fast surgery date…it’s hard to wait.

  2. HUgs and prayers for the easy fix – I jsut love this little guy!

  3. It is amazing what they can do. We had a 30 year old come from hAITI. He had most of his lower jaw removed and they put the fibula or tibula bone(can never remember)in for a new jaw. The smaller bone in the back of the calf. The doctors said God put it there so they could use it. Praying for Benja and Mommy ! Even a cleft palate is a long journey. (my brother had cleft palate and lip) kim

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