Thursday, September 3, 2015

Cleft Team 9/2/15

Timehop is great, especially for #tbt-ing and what not. It always there to remind you of what was happening on this day since you began your journey on social media. But some moments, a person doesn't need to be reminded of by an app, they are forever burned into your memory and seared on your heart.
My first visit to Arkansas Children's Hospital is one of those moments. A moment where part of a team met me, a new mom who was scared, sleep deprived, completely uneducated on how be a Cleft mom , much less...Cleft Strong. We met an amazing nurse (who, if you've read any of the cleft posts you know we love dearly!) and a brilliant surgeon. We got a snapshot of the future that was filled with hope while simultaneously getting a fire hydrant of information about clefts and Jax's life as a cleft kid. 
But one of those bits of information that we got was that someday we'd meet the WHOLE cleft team. Orthodontists, Periodontists, Geneticists, Surgeons, Audiologist, Speech Therapists, Dietitians, Plastic Surgeons and if I forgot one of them just pick medical professional and add and "ist" on the end and I'm sure we saw them! 
Well, yesterday was that someday. Six years later, someday arrived. Which felt like a light-year away on that first day and yet it had gone by in a blink. We arrived at 8:30 in the morning loaded with snacks and video games and prepared to stay most of the day. Two and a half hours later we'd seen 9 "ists" and learned another hydrants worth of information. Since there's a top 5 list of things people ask about cleft kids, I'll share a little of what we learned yesterday:
*He'll have a nose job done in October (someday all the kids will be jealous of this)
*He'll have expanders put in the next 9 months to expand (hello!) his mouth so that they can do his bone graft.
*You may not know that while they repaired his lip and his palate, he has a gap in his gum line. Many Cleft kids do. They take bone from the hip and repair the gum line. This will probably happen next year sometime. (that will make really great show and tell in 2nd grade, huh?!)
*Every cleft mom secretly carries the burden of worrying about whether the cleft is somehow her fault. Like she's defective. And while I was reassured earlier on that it wasn't my fault, I've carried that around for six years. Was it something I ate? Do I not have good genes? Did I not drink enough water? Was it because I reached up or squatted down or jogged one two many laps? It can all be a bit ridiculous. But I have finally laid that to rest after meeting with the geneticists.
*While genetics play a part, they didn't really matter to us because we know that God has called us to adopt again rather than have any biological kids but we were interested to know that any kids Jax has (when he's 35 and married...) only have 3-5% of having a cleft as well. But nobody is worried because we think clefties are cuties. 
*When he's older he'll have to have jaw surgery and the surgeon explained that this won't change the way he looks to where he doesn't look like Jax but he'll look like what he "would have" looked like (bringing his nose and cheeckbones further out). It was an odd thought, to try to picture him differently and I'm grateful that the surgeon said "would have" instead of SHOULD HAVE because I love him just the way he was and is and I believe God intended all of this.

And last but certainly not least we were reminded how amazing ACH and the providence of God really is. We have a team. A TEAM! While it's true that it takes a village to raise a kid, it takes a hand picked and brilliantly skilled team to care for a cleft family. And he could have been born anywhere; a third world country, a remote island, the south of France or Canada (I'm kidding- I have nothing against Canada) but God knew that we'd need to be in Arkansas and he knew we couldn't do this alone so He sent us to the best team there is! I'm so incredibly thankful for all the amazing people that we talked to yesterday and who have been with us throughout our journey. 
Yesterday we got a snapshot of what the future looks like. It is filled with joy, bravery, normal "boy life", the occasional surgery and lots of friends at ACH!

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