Wednesday, February 4, 2015

Happy "Smile-versary" Will: One year since cleft lip repair!!

Happy New Year, everyone! I know it's been quite awhile since I last posted - we've just been living life and enjoying every minute. It's been SO WONDERFUL not having to worry about surgeries or appointments and just letting Will be a kid!! Today, however, is a very special day - it is the one year mark since Will's first surgery, which was to repair his lip, nose and one side of his gums.

I cannot believe it's been a year, and I don't think I will every forget the anxiety and overwhelming amount of emotion I felt that day. I remember what I was wearing, I remember crying as I handed my sweet little man off to the nurses, I remember the view from the waiting room (being we sat there for almost 8 hours!!), I remember what I ate, I remember the knot in my stomach as it came time to go see him in recovery, and I remember the pure love and joy I felt the moment I laid eyes on him again and was able to get him back in my arms. I loved his first smile from day 1 and miss it everyday, but I sure do love his new smile too. How lucky are we to be given the chance to fall in love with TWO beautiful smiles?! Here he was the night before surgery, immediately post op in recovery, and now a year later. He's growing up so fast. Actually, too fast... slow down little dude!

Looking back on the year, it really is amazing what we've been through. It was tough at times (in fact, SUPER tough at times), but mostly it was wonderful, fulfilling and inspiring. Will's journey has turned me into a better person. Last year, not only did I learn and grow as a mom, but I grew personally as well. I found a calling: I got super active in the cleft community and became very passionate about helping other cleft families. I teamed up with another awesome cleft mom, Dara Smith, and together we launched Cleftopedia, which is a comprehensive resource for new cleft parents that took off from the start and continues to grow at a ridiculously amazing pace. Through Cleftopedia, I've had the fortune to partner with a number of wonderful cleft organizations to help spread awareness and support as many families as possible. I've been contacted by other cleft moms in need and helped them find care and information, even in other countries where they don't have the resources we do here in the US. I became an admin on an incredible international support group for cleft parents on Facebook called Cleft Mom Support, where I am able to provide support and advice to cleft moms and dads each and every day. We held a fundraiser for Will's first birthday and raised over $1700 for two of our favorite cleft organizations thanks to our incredibly generous family and friends. Sound like a lot? It has been... and I've been loving every minute of it! 

So what's next for Will? Many have asked us if he's "done" now that he's had his lip and palate repair surgeries. Unfortunately, the answer is no - we are far from being done. Phase 1 (lip and palate repair) are done. Check. Now we move into phase 2, which is all about speech and orthodontics/teeth for the next 5 or 6 years. Prior to palate repair, Will could only form m/n/h type sounds and was physically unable to form other speech sounds including p/b/d/g/k/t (since you use the muscles and soft palate to make these sounds, and obviously his was wide open). The success of palate repair is determined based on his ability to form these new sounds after the repair. The great news is he started making d sounds (dada) very soon after palate repair, and has since added about 15 words to his vocabulary, including g and k sounds. We aren't hearing many p or b sounds yet, but Dr. Warren feels good about his repair since he said if he's able to make the d/g/k sounds he is physically able to make p and b as well (he is just being stubborn about it)!  So we are feeling pretty good about how his speech is turning out and just hope he starts making those p and b sounds more frequently!! If he doesn't, it could mean his palate repair wasn't successful and could require an additional surgery down the line to correct, but so far, all signs point to his palate repair being a success. 

Then there's his teeth. Man what a mess! Bottom ones look great. But up top around the cleft is just a crapshoot. He's got a tooth growing straight into one of his front top tooth (which we think might be a lateral incisor but we aren't sure), and his other front top tooth seems to just be poking through right now (which is cool because his dentist wasn't sure he had one on that side). No other lateral incisor yet. And he's got all four of his molars. The good news is there are some teeth coming in, which helps pull bone down with them and strengthen the gum line, so we'll take em, crooked and all! They really don't do anything for their baby teeth even if they're messed up. The real work will come when he gets his adult teeth - likely they will be very crooked and he may be missing teeth around his cleft, and he'll probably have to wear braces for much of his teen years, but we won't really know until we get to that stage, so I'm not worrying myself over that quite yet. 

As for additional surgeries - there's a few he may still need over the years. We've struggled with how his scars have healed: he developed very red, raised, and wide scars and we have done two rounds of steroid injections to help accelerate the breakdown of collagen, which have helped immensely. So hopefully these will do the trick and can help us avoid a scar revision. But depending on how his scars continue to heal, we may need to consider a revision before kindergarten. Then, at around 7 or 8 we'll see if he will require a bone graft. And then, when he reaches age 18, we'll have to see how his jaw has grown and if he develops an under bite (very common with cleft children), then we may have to face a jaw surgery as well (where they break and reset his jaw). Again, all of these are possible but not set in stone, so it's all a wait and see game as he grows.

But I don't want to get too far ahead of myself. I've said all along it's one step at a time. There's too many what if's and unknowns to worry about what may happen in the future, so it's really best just to focus on now. For us, that's speech and ortho for the next few years. So far, he's doing great and we'll just take it day by day. And with that, I'll leave you with a few more of my favorite photos taken over the last few months. Love my SuperWill SO MUCH!!

SuperWill's First Birthday Party (9-27-2014)

Halloween 2014

Christmas 2014