A New Season of Surgeries Approaches

Yesterday Jameson and I drove to Dallas to visit with his craniofacial doctor.  We had two quick appointments beforehand at media for pictures and anthropology for facial measurements.  It has been three whole years since our last visit.  We have been back and forth to Dallas in the past few years for Jameson’s trach, but craniofacial wise his last surgery was March of 2014.  We send MRI’s to Fearon, and he is amazing about emailing if you have any questions or concerns.  But, other than the trach, we haven’t really had any concerns, and his MRI’s and eye exams have looked good. 

I was fully expecting to meet with Dr. Fearon and plan to see him in another 3 years for Jameson’s mid-face. 

So, you can imagine my surprise when he said he thought Jameson was due for a FOA.  An FOA is a frontal orbital advancement.  He had a FOA when he was about a year with his first CVR (cranial vault reconstruction).  He explained that he could see the bone above Jameson’s brow was sunken in, and it should at least be out as far as his eye.  Now, my husband and I have both noticed this, so really, after we left it wasn’t too shocking, but because Jameson’s MRI earlier this year looked good, and he hasn’t been complaining of headaches (he did back in Jan/Feb, but he had an eye exam that looked good) we would have assumed he was good to go. 

As I have been thinking about his little skull and eyes over the night, I realized that we did have a few scares over the summer where once he got hit the eye, and once he bumped into a door frame and hit his eye.  He ended up being okay both times, and his eye didn’t pop out either time so I chalked it up to Pfeiffer eye anatomy and talked to the boys about how important it is to protect Jameson’s eyes when they are wrestling and playing.

But, this is just a perfect example of how important it is to have an experienced medical team following your child.  We get so used to our kids, it’s hard to really notice unless something is really off with their behavior, then our senses go off and we just know.  But those situations are usually more emergent. 

This FOA is on the horizon, it’s not emergent.  We will have an eye exam done again this month and the results will determine or long we can prolong the FOA.  The goal is always to hold off as long as possible.  So, maybe within the next year?  If the eye exam is good we’ll follow up in about 6 months.  My guess is maybe spring or early summer of next year.

The other news was about Jameson’s mid-face.  The initial goal was to make it to 8 or 9 years old.  However, yesterday Fearon told us that he wants to do it sooner because of his trach.  This is actually what I wanted to hear.  We all want the trach out.  I wouldn’t go back on our decision to do the trach, he no longer has obstructive sleep apnea, his body is literally surviving because of it.  But we need our boy to talk.  In theory he should, but because of quick granulation build up and him having tracheal stenosis it is extremely difficult.

Jameson saw the R.E.D. Halo on Dr. Fearon’s desk and immediately pointed to it.  He got to hold it and look at it up close in person.  Because of so many families sharing their child’s experience with the mid-face I have been prepping Jameson.  He has asked many times when he can take his trach out.  I’ve been able to explain and show him pictures of the surgery he has to have, and told him that he has to be able to breathe at night with a cap on after the surgery.  So, a huge thank you to all the brave families that have shared their story, I can’t tell you how thankful I am and what a blessing it is to prepare Jameson, and help give him an understanding.  He is scared enough, and every bit helps to educate him and shows him he’s not alone.

So, what it looks like right now is that Jameson will have an FOA in the next year, and his mid-face 2-3 years from now.  It was nice to have a break, but we are coming into the next season of surgeries for him.  Then, maybe one more as a teenager and hopefully that’ll be it for him (Cranio-wise).  His could potentially need to have some airway reconstruction, but I don’t think we’re anywhere near assessing that right now.  We are waiting for his new ENT to arrive (military hospital), so in the next month or so we should have a better idea of what lies ahead for that.

 

Obligatory Caterpillar Pic:

And we checked out the new carousel:  Jameson sat down and said, “Why doesn’t it move?”  Lol!

 

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3 thoughts on “A New Season of Surgeries Approaches

  1. I look at Jameson and all I see is a beautiful little boy trying to live his life with enthusiasm and wonder. I realize that he has many challenges ahead if him but he has achieved so much.

    I wish him incredible luck with this next phase that he is entering. I think that God gave you Jameson because he knew that Jameson would be loved unconditionally and treated like a typical boy; playing and roughhousing with his brothers as well as being allowed to act like any other five year old.

    Pleas jeep posting these updates. It is so rewarding to know that Jameson is progressing so well and enjoying life to the fullest.

    1. You are so fortunate to have Dr Fearon and his team. He started working with Elizabeth when she was about a year old, Dr Fearon was completing his residency with Dr Munro, and she’s 28 now. We love him. The mid-face was tough but it was so great to get rid of the trach. We love following Jameson and your family. Thank you so much for sharing your journey. When Elizabeth was born there were so few Pfeiffer kids who made it very far. She was one of the first to have the mid face. We didn’t have this social media community to help and research was hard to find. Thank goodness for the internet and the information that’s now at our fingertips. You guys are in our prayers everyday. Love to you all! If you ever need anything please let us know. #pfeifferstrong

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