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



Saturday, September 20, 2014

Dear William

My heart is filled with joy and love and also relief - Will is ONE today! Which means... WE MADE IT! We made it through all of the difficult treatments and surgeries in his first year, and he can just enjoy being a kid for hopefully years to come now! Here's a collage of Will's first year:
To capture my sentiments, I decided to write Will a letter - something he can look at and hold on to forever.  And I'm now sharing it with you too, so here goes:

Dear William,

I can't believe how time has flown; my little man, you're turning ONE!
I feel so lucky and so blessed to have the privilege to be your mom.
It feels like just yesterday that I held you in my arms for the first time,
And now a full year later, we've been through so many firsts of different kinds:
Your first smile, your first laugh, all of your first bumps and bruises,
I've adored watching every moment as you grow, and now you're off and cruising.
But son, the year has also brought with it some challenges you see,
This year I had the heartbreaking task to hand you off not once, but twice for surgery.
You've been through so much more in your first year of life than most will ever endure,
you've come so far and shown such strength that it touches me to the core.
You have a world class team of doctors, and we are grateful for all they've done,
But William, please don't ever forget that we've loved your smile from day one.
I love you more than words can say, and you're the bravest person I know.
You've touched and changed so many lives, and your impact will only continue to grow.
And while this year has brought its share of great times as well as some that were hard,
I would not change a single thing, as it's made us who we are.
So as I wish you a very Happy First Birthday, I also have to say:
You are my superhero and my inspiration each and every day.

Love always and forever, with all of my heart,
Mommy

Wednesday, September 17, 2014

On the Other Side of Cleft Palate Surgery!

We made it! We're on the other side of palate surgery... and it feels GOOD! On September 9, Will had his palate and other side of his gums repaired, ear tubes placed, and steroid injections in his scar. The morning of surgery we arrived at NYU Langone Medical Center bright and early. Will was in great spirits, and it felt a little strange to see him be so happy and playful - I felt like we were deceiving him. But really, I think it was better that he was happy and didn't know what was to come before going back. That's one benefit to having these surgeries done when they are so young. Here we were waiting to get checked in, and then ready to go back:
 

 


 The surgery took about 4.5 hours, which is a little longer than we expected, but other than that, it went exactly as planned. Dr. Warren explained afterwards that Will's cleft palate was on the wider side - he basically just had gums up there (see my last post for a pic), his nasal bone was off-centered (it's normally centered), and he has a naturally high arch to his palate, all of which made the surgery just a little bit more difficult to complete - hence the reason for taking longer. But Dr. Warren said it went great, regardless. We got to see Will around 1:30p, and it was just as hard as the first time to see him in recovery - he was very groggy and trying to come out of anesthesia, and clearly was in pain. I of course held him as soon as we got back there, and before long he was drinking without protest (a HUGE accomplishment immediately post op). Here we were in recovery:


Thankfully, this time around, the nurse on the team, Pat, pulled some strings to ensure we weren't stuck in the 4 baby room again overnight so we had a normal 2 patient room. It was uncomfortable, but 1000 times better than the last surgery. Will didn't want to sleep unless he was held, so I spent the night on the reclining chair with Will in my arms, and we managed to get a few hours of sleep together that way. It wasn't great, but it was no where near as bad as I expected it to be. And he continued to drink throughout the night, so we knew we would be discharged first thing in the am.

Since being home, Will has just amazed me with how he has handled this recovery. It's been so much better than the first surgery. By day 2, we had smiles and even some laughs, and day 3 I had him back on his regular nap schedule! And once he figured out how to crawl and cruise with the arm restraints on, he was a much happier baby. He does still wake a few times a night - at first it was for meds, but now I think he's just mostly uncomfortable because of the damn no no's. We are still struggling to get him to drink enough fluids as he really just seems uninterested in anything liquid at all, but he's getting at least the minimum to keep him hydrated and I know eventually he'll come around (I hope anyway)!! But all in all, I cannot complain, and in fact I'm still pinching myself at how well he's doing. At 1 week and a day post op, it almost still feels unreal that we actually made it to this point already, but boy does it feel good! Here's Will a few days post op:



We have a follow-up appointment with Dr. Warren at 3 weeks post op. If everything looks good at that appointment, we should be cleared and surgery free until he's about 7 or 8 years old (and possibly even later)!!! So please cross your fingers for us friends, as that would just be amazing news for us to receive. But for now, it's time to help Will continue to heal, and of course - plan for his FIRST BIRTHDAY that is just THREE days away!! Wow - what a year it's been and I wouldn't change it for anything.

Tuesday, August 12, 2014

The Countdown to Cleft Palate Repair Begins!

Well everyone, we are officially 4 weeks away from palate repair and I'm starting to get anxious! It has been so wonderful these past few months letting Will just enjoy being a baby and not having to worry about surgeries, taping, and endless doctors appointments. I know we still have a month before the surgery, but in the last few weeks we've been meeting with the doctors and discussing the procedure, so it's made it all feel very real and very near! Here he is this week:


Will's surgery is set for September 9 (11 days before his first birthday), during which the surgeon will repair both his hard and soft palate as well as the other side of his gums, and the ENT will place ear tubes. Dr. Warren will also be doing steroid injections in Will's scars since they've healed much thicker than we'd like - the injections should help accelerate the healing process and help minimize the scarring on his lip. The whole thing should take about 3 hours. He will once again have 3 weeks of restrictions post op - arm restraints, no bottles, no binky. Luckily, he'll be able to go back to eating purees and very soft foods within a few days. Definitely not looking forward to another 3 weeks of restrictions!

For those wondering about the palate repair procedure itself, I'll try to explain. First, here is a picture of Will's open palate so you can what it looks like - there's just a big hole that goes all the way back.


For the repair itself, Dr. Warren explained that he will take tissue from each side of Will's existing palate, basically cutting a thin layer from each side and folding it over itself to repair the hole. He also does a detailed repair of the muscle in the back of the throat, which is also split open, by pulling that back together so that Will is able to form proper sounds for speech. Without repairing the muscle, children with cleft palate often experience many speech issues that require extensive speech therapy and even additional surgeries because they aren't able to make the necessary sounds. Up until Dr. Warren explained this to me, I actually hadn't even thought about the muscle as part of the repair - I always just assumed they closed the hole in the roof of his mouth and that was it. Dr. Warren said that he has perfected a technique (spearheaded by Dr. Cutting, whom he studied with) that has a greater than 98% success rate, which means there's a 98% chance that no additional surgeries will be needed. For comparison, the typical cleft team has a success rate of 80%, and the best cleft teams have a success rate of about 90%. So I'm feeling very confident that Will is once again in the best possible hands!

So for now, I'm going to focus on enjoying these last 4 weeks before surgery, and then take recovery one day at a time. Plus, planning for his first birthday party (I'm thinking superhero theme is appropriate) will at least help keep me busy with something fun! And don't forget that we are asking for donations to two awesome cleft charities in lieu of gifts for Will's 1st birthday, so please check out his fundraising pages if you'd like to donate! Thank you!

Smile Train: support.smiletrain.org/goto/smilesforwill. This is a fantastic organization that provides training and funding to empower local doctors in developing countries to provide free cleft surgeries in their communities. Each $250 raised will provide 1 complete cleft surgery.
 

Cleft Kids, Inc.: http://www.cleftkids.org/store/p34/Will%27s_First_Birthday_Fundraiser%21.html. This is another amazing organization that provides care packages for children undergoing cleft surgery. $20 will provide one care package to a child.

Wednesday, June 11, 2014

Preparing for Cleft Palate Surgery and Will's First Birthday!

Happy June everyone! It's been awhile since my last post and I have to say that this last month and a half living tape free has been so wonderful! Will can finally just be a baby and not have to worry about appliances or tape or raw cheeks and I can really see a difference in his personality - he's just happier (and I don't blame him!). I can't believe my little dude is already 8.5 months old. Here are a couple of his 8 month shots because I couldn't pick just one.



Time is going so fast. So fast, in fact, that his palate repair is creeping up on us. It felt so far away for so long, and now all of a sudden we have a date set in stone - September 9 - and we're making our preop appointments with his surgeon and the ENT, so it's becoming real very quickly. Luckily, we get to enjoy the summer before we have to worry about it, so as much as I get anxious thinking about it, I'm going to try to relax and enjoy these next 3 months as much as possible! As we get closer I'll do a post about what the surgery entails, but luckily this one will be much shorter than his lip repair was (about 2.5 hours compared to 8!!).

In more exciting news, we have started thinking about Will's first birthday, which will be here before we know it! We have decided that in lieu of gifts, we are instead asking friends and family to donate to 1 of 2 cleft organizations we have selected to raise funds for in Will's name.

The first organization is Smile Train: support.smiletrain.org/goto/smilesforwill. This is a fantastic organization that provides training and funding to empower local doctors in developing countries to provide free cleft surgeries in their communities. Each $250 raised will provide 1 complete cleft surgery.

The second organization is Cleft Kids, Inc.: http://www.cleftkids.org/store/p34/Will%27s_First_Birthday_Fundraiser%21.html. This is another amazing organization that provides care packages for children undergoing cleft surgery. $20 will provide one care package to a child.


We have an aggressive goal of raising enough funds for 5 cleft surgeries through Smile Train as well as to provide 5 cleft care packages through Cleft Kids. If you would like to donate in Will's name, please check out his fundraising pages using the links above. THANK YOU!!