Thursday, March 6, 2014

Cleft Team Visit 2014

This past Monday we loaded up the car and the kids and drove to Omaha. Tuesday was Bailey's yearly cleft team visit. Just like last year we decided to go down the day before and make a small trip out of it. 

We hadn't even reached the outskirts of Omaha yet when Graham blessed us all with the sounds (and smells) of his apparent motion sickness. This hasn't ever been a problem we have had to deal with in the past, but he proceeded to get sick not only once, but twice - vomiting again on Tuesday morning. Do they make motion sickness medication for one year-olds? 
We might be needing some.

After cleaning up the vom as best as I possibly could using Casey's napkins and a cup of water from Pepperjax, we found a Target and bought some Febreze and some upholstery cleaner. Total waste of money as it did nothing for the smell or stains whatsoever. Hey, we tried. But it was clear that the Vomit Van title was here to stay.

We ended up spending a few hours in the afternoon at BounceU. Not only did they have tons of inflatables, there were also little cars for Graham to ride in and balls for him to throw. That's kind of his favorite thing right now, besides climbing on tables/desks/windowsills of course. Aunt Fe took the afternoon off and hung out with us.

Unfortunately I think Jared and I were more exhausted from this afternoon outing than any of the kids were. I loved these things as a kid. I would have thought I had died and gone to heaven to have a whole afternoon of unrestricted bouncing. In that spirit, I was in there jumping around like crazy with the kids. After nearly peeing my pants three separate times, I realized that small jumps are the key. Moms, I know you're feelin' me. Damn you, childbirth, and your random long-lasting side effects!

That afternoon we checked into our hotel and swam with the kids. We ordered some pizza for supper and hung out in the room. All three of the kids and Jared were passed out by 8 pm. Talk about a rowdy party crowd... geesh.

Our cleft team appointment was at 8:15 the next morning. She sees a ton of people at these visits and it takes the entire morning. In the meantime, Graham and Avery went and made sure their handprints were on every single window in the place.

Since Bailey had surgery last August, that is likely to be her last surgery until the cleft in her gumline is filled around age 7. So most of our visit this time involved finding out info regarding the next steps in the cleft process. She gets a break from any procedures for the next 2-3 years, but decisions will need to be made in order to prepare for that surgery. 

A cleft of the palate also makes a cleft in the child's gumline, usually resulting in some change to their teeth - either giving them too many teeth (weird I know) or not enough (which is Bailey's case.) And as they start getting in their permanent adult teeth, cleft kids lack healthy bone for the teeth to erupt in to. This is why she will need a bone graft to fill in that site. With healthy bone filling in this gap, her adult teeth stand a good chance of remaining in place. She doesn't have an adult tooth in the cleft space, so that will be addressed much later on down the line. (Very likely she will need a dental implant, but that isn't usually possible until she is around 18 years old.)

When the time comes, there are two options to fill in the gumline cleft: 
Option 1 - Harvested bone from her hip bone. 
This is what was originally explained to us when she was born. We have been told from many different doctors that this will be the most painful surgery she will likely ever have.
Option 2 - Synthetic bone that is made in a lab.
When Bailey had her first cleft visit, this was mentioned in passing as "a new technology some doctors are utilizing." Now four years later, Bailey's dental surgeon used synthetic bone in roughly 50% of these procedures this past year. The technology is improving, so we can only imagine it will continue to do so in the next few years until it is Bailey's turn.
So obviously synthetic bone is far easier as far as patient involvement and pain, but we will only know when the times comes which option is the better choice for Bailey's particular cleft. 

In the meantime - about a year before the surgery - Bailey will need to utilize a palate expander. It will help shape her mouth into the correct shape. (Cleft kids' mouths essentially cave in on themselves due to the incomplete palate, resulting in an incorrect shape and problems with overbite/underbite.) The expansion itself only takes a month or two, but she will need to wear it for approximately a year to maintain the correct shape. She will also need braces somewhere in this mess of mouth/teeth procedures. Likely she will have braces for many many years and maybe even multiple times. 

And while on the subject of teeth, the dentist portion of the afternoon went off without a hitch. Both girls were in outstanding moods. They did great while getting their teeth cleaned and the dentist praised their efforts at tooth brushing. It helps that they can zone out and watch some 'toons on the ceiling throughout all of it.
It also helps that we love their dentist. I got the recommendation from a fellow cleft mom in Omaha a few years back, and I am so glad I did! I can't speak highly enough of the place. 
(Click on the "Cleft info" tab at the top to check out all of Bailey's cleft related care providers.)

The take-away from our visit is that we have some downtime now
Before next year's visit, I will need to contact orthodontists in our area and determine who will be the best fit for us. It will be extremely important that they can work closely together with our dentist and cleft team to follow her plan of care exactly. The next step is all about timing: monitoring the permanent teeth, monitoring the palate expansion, choosing the right time to perform the bone graft. 

But before all that craziness starts, we are grateful for a year or two of surgery-free time. I am not looking forward to those very frequent trips to the orthodontist. I have a feeling that I will all-too-soon know just how my mom felt all those years driving over an hour round-trip for a five minute appointment.... (Thanks, Mom!)


  1. I just stumbled across your blog today and have read a few posts about your experiences with your oldest child. I am 30 weeks pregnant with a baby boy who has been diagnosed with a bilateral cleft lip and cleft palate. We also have a 16 month old boy.
    Thanks for everything that you've shared on your blog...I'm trying to get as familiar as I can with the various surgeries and processes that we will be going through soon.

  2. This was a tough journey for all of you. And I agree; you should really enjoy your surgery-free moment to bond and simply be happy. Because when 2015 hits, you’ll get busy looking for an orthodontist that fits your needs, and the process of preparing for surgery as well. Stay strong!

    Cody Zieba @ Reed Orthodontics


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