Wednesday, September 9, 2015

Will's "Palateversary" - One Year Post Palate Repair!!

Wow - it has been quite some time since my last post. I have to admit, things have been relatively quiet on the cleft front for some time now, but today is pretty special because it marks Will's 1 year "Palateversary"... meaning it's been a full year since his palate repair, which was his second (and last) surgery so far. I debated whether or not to even do a post because, quite frankly, I am not sure I have anything that riveting to share. But then I realized that not having anything riveting to share, in and of itself, is THE reason to post. This last year has been, for the most part, totally "normal" and Will has had the freedom and opportunity to just be a kid and have fun. No devices in his mouth or taped to his cheeks making them bleed, no surgery to cause him pain and weeks of recovery (not to mention saving mommy all of that heartache), and no seemingly endless barrage of doctor's and specialist's appointments. Instead, Will has been growing, developing, and learning at what feels like lightning speed (slow down, kid!!), and this year he's been able to be just like all the other kids his age. And it's been a blast. I mean, just look at this kid!



Some of you may be wondering if there has been anything different for Will this last year due to his cleft. And the answer is yes, a few things. Nothing like his first year, thankfully. While his first year was all about preparing for and having 2 major reconstructive surgeries on his lip, nose, gums, and palate, this year has been about focusing primarily on his speech development. We got Will into Early Intervention before he was even 1 year old, because in PA he qualifies automatically due to his cleft, and I figured it would be a good idea to be proactive. We didn't start speech therapy formally until a month after his palate repair, and he's been in it ever since. I think most people assume palate closure is important for eating or breathing, but in reality, the surgery is all about enabling proper speech development. Children with a cleft palate can have a hard time making certain sounds that require the use of the palate and the muscles in the back of the throat (such as b/p/d/t/k/g sounds). Initially, Will got into the habit of replacing b and p sounds with a g (so bye bye was gye gye, etc), and I admit I was nervous about it, but we gave him time and continued to work with him, and after a few more months, he began making all of his sounds correctly. Whew! We are fortunate that he has always been very talkative, he does not have a hypernasal sound that is a telltale sign of people who had a cleft palate, and his speech has continued to progress ever since palate repair exactly as it should. I would say in the last 2 months, his speech has really exploded and he is saying more and more new words each and every day. It's exciting for any child to hit a speech growth spurt like this, but I must admit, it is especially thrilling and rewarding to see my cleft baby conquer speech like a boss! To reiterate the significance of just how far Will's come, here is a collage of his lip and palate before on the left hand side, and his lip and palate now on the right.


In addition to speech, we've also spent some time working on improving the appearance of the scars on Will's lip. We are so thrilled with the result of his repair overall - his nose is absolutely perfect and not flat at all (thanks to the NAM, our surgeon's technique, and the post op nose stents), and his palate was repaired beautifully with just one surgery (many require a few, especially those as wide and severe as Will's was). But we've struggled with how his scars developed- they have been very red, raised and prominent. Fortunately, Dr. Warren (our amazing surgeon) recommends the use of a series of steroid injections in the scar over several months, before performing a lip revision surgery. Will has had 1 injection in the one side of his scar, and 2 additional injections in the other, more stubborn side, which have truly made an enormous difference in their appearance. The results are not immediate - in fact, each injection can take up to 3 months to see the full effect - but over time they've really done wonders. His scar is now flush with his skin and the texture is far softer than it was before. This collage shows Will's progress with the first 2 injections - the first picture on the left is at 11 months old when his scars were at their worst, the middle is after the first injection, and the right is after the second injection.


 And here is Will now after his last injection, which was at the end of July.


So what have I been doing with all this free time? Well, I've continued to stay actively involved as an admin on the Facebook group Cleft Mom Support. And Dara and I have been working like crazy to expand Cleftopedia's reach as well as increase the variety of offerings we have available to provide support for cleft parents: we've introduced quite a few new pages over the last year, and have become quite active on social media as well. Plus, we've got so much more planned for the site, so the work doesn't stop here... and I don't want it to! This is my calling and I am loving every minute of it!! What's really cool is that last month Will's story was featured in our local paper, and it feels so good to help spread awareness in as many ways as I can!

So that's where we are: living life, having fun, and honestly we barely think about his cleft at all these days. If someone had said that to me before he was born, or even within the first year, I would have looked at them like they were crazy. But it really is true! So for the cleft moms out there still early in their journeys, have faith, and know that it DOES get easier- there really IS life beyond the cleft!! I look back on the last year, and it is incredible to see how far we've come.

Will in recovery from palate repair 9-9-2014


Wednesday, March 11, 2015

Thanks for asking, but no, Zofran didn't cause my son's cleft.

Lately, Zofran has been portrayed all over the news and social media as having a possible link to cleft lip and palate. Not only is it all over Facebook in my feed and even those damn targeted ads, but I see the lawsuit commercials constantly too (and lawyers are even starting to contact us!). Many friends and family have brought Zofran to my attention, and while I really appreciate everyone's concern and thoughtfulness (I know you're all just lookin' out), please know I am aware of it and actually would prefer not to hear about it anymore. I'm not joking when I say it's everywhere. As in, no matter where I turn there's something about Zofran in my face!! It's since become quite a debate in the cleft community on whether or not it really is linked to clefts, and the reality is we just don't know the true answer to that yet. In my case, I didn't take it so the cause of Will's cleft is still unknown. And I'm ok with that because he's my SuperWill and this journey has made me a better person. But for those that did take it, I believe wholeheartedly that they have every right to explore this for themselves - I think if I had taken it I'd at least be looking into it further too. Cleftopedia actually wrote a great blog post about the debate, if anyone is interested: http://www.cleftopedia.com/zofran-cleft/

Honestly, whether Zofran does or doesn't cause clefts, the most important thing to know is that we all love our cleft sweethearts just the way they were born and most of us cleft moms wouldn't change it for anything. No matter what, we are cleft strong!!

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