More Time Needed

Well, it's not a home-run yet, but the surgery to remove her headgear was at least a step in the right direction and things are looking good at a glance.  When Dr. Gordon removed Faith's headgear her left jaw bone (which is her less developed side) shifted too much so Dr. Gordon decided to go ahead and leave the headgear off but wire her jaw shut.  It wasn't the outcome Faith was hoping for, but he had discussed it with her before she went under.  She was dreading this outcome to be honest - after 8 weeks of having her mouth pulled in a closed position and growing new jaw bone and not being able to eat, she was so looking forward to having it off and getting to eat again - in fact she created a long list of the foods she couldn't wait to eat again.  But wait she must - only 2 more weeks (easy for me to say "only"!).  She definitely understands the need for doing it and she is so scared that even with 2 more weeks she might lose the new bone she gained with this surgery, because that is what happened last time.  

Dr. Gordon had wanted to do a few other things when he took the headgear off, but because of the bone not holding where he wanted it to, he decided not to do anything else at this time.  So, in two weeks she can have the wires cut-off.  We are hoping someone in Denver will do it, but if not we will have to come back to Dayton for Dr. Gordon to do it.  Then he wants to let it sit and heal for another 3 months.  Assuming that all goes well he wants to do a final surgery to add more bone paste to her cheekbones and to her lower jaw bone, to square it off a bit.  He also wants to touch up her nose to narrow the base of it a bit and shorten the tip of it.  She was very agreeable to him narrowing her nasal flares - basically fixing whatever he did last time that widened it too much.

So now we have a couple extra days in Dayton and will go visit some friends tomorrow before we fly home Monday night.  

Not much else to share right now!  Thanks for reading and I'll give another update soon.

Heading back to Dayton!

On the plane and ready to go!! We get into Cincinnati at 2:30 ish and will drive to Dayton and are staying at the Ronald McDonald House again.  Faith's surgery starts at 11:45 eastern (9:45 MT) and will probably take a few hours. 

I will try to keep you all updated.

The plan is to remove her headgear, do some final touch up work on her jaw, cheekbones and nose.  Fingers crossed this is the last major jaw surgery Faith needs.  It may take several months before we know the full results for her airway and whether her trach can come out, but that is the goal!!

It addition to her jaw stuff, an ENT is going to be putting in a new BAHA post for Faith, her existing one became unstable this summer after another ENT added a post extension, not really sure why that happened but it did and so it’s better to get it replaced now while she’s under for this one.

We also have another very minor outpatient surgery scheduled for mid-September to remove an eye dermoid (like a cyst, but it’s actually just a skin growth on her eye).  

I’m super excited to see the results of this surgery and the one in September too.

Faith is currently on Homebound education, taking just 2 classes the first quarter, English and Biology. She can take as slow as she likes and then she can start going back to school part-time when she’s ready.

Speaking of school, we dropped Anthony off at CSU - Colorado State University on Monday. It was so bittersweet! Exciting to see him starting this new adventure in his life and sad of course to come home to his empty bedroom.  It’ll be tough not seeing him every day, but we’ll be keeping in close touch through text and FaceTime!

 

Will update more tomorrow!

Love you all!! ❤️🥰❤️