Craniocarebears PJ Drive.

As you are all aware, Sawyer is turning 2! And since we honored Craniosynostosis at his last Birthday, I wanted to do something similar this year as well. One of my favorite organizations just happens to be hosting a PJ drive for future cranio kids. When we bring our babies home from the hospital they are still recovering, delicate and have severely swollen heads. So the best gift they could recieve is a pair of zip/button up pajama’s. pj drive is having an online PJ drive. I am going to be collecting such item’s for the entire month of October and shipping them a big package at the end of the month. If you feel so inclined to help please drop off a pair or two at my house, or message me for my address and have a pair from amazon shipped straight to me. {Easy peasy lemon squeezy!} pj drive

They are requesting boys size 12&18 month. And Girls 12 month. Cranio is more common in boys but both are welcome! I am not pressuring anyone to help us out with this. I simply wanted to share a good cause and welcome anyone to participate with us in honoring Craniosynostosis for a second year. Last year at Sawyer’s first birthday, our friends and family helped us raise over 500$ to send to They use donations to send a care package to every cranio surgery patient. They send hundreds of packages worldwide each year. The PJ drive will help to add bigger items to their care packages. And it made me feel so connected to other cranio families when we received ours. pj drive

So let’s see how many Pj’s we can send in Sawyer’s name! 3.5 weeks, we have lots of time. Email me for additional questions. Thank you for your unwavering support in our little cranio-man!


*They must be new Pajama’s. These are a gift for a family in need and we all know it’s nicer to receive something just for you, instead of a used item. Please donate your used item’s to another charity!

1 Year Cranioversary

One Year Ago Today.


One year ago today was the hardest day I have ever experienced. It feels as close as yesterday and like it never happened at the same time. They are memories our entire family will think about almost daily. It was something I wouldn’t wish on my worst enemy, yet I think it was a blessing in disguise 


Yes you read that right. I think Sawyer’s craniosynostosis was a blessing. Each day we had to deal with the process I became stronger. For my son, for myself. Each time I entered a Doctor’s office thinking I was having a bad day, I was reminded of how truly wonderful my life is. And even in the PICU, I was humbled by children suffering from terminal illness’s with the brightest outlook on life. These are things you cannot experience without going through the exact same thing. Knowing that, I consider our diagnosis as a whole a blessing. I am a better person by going through it. Sawyer is a healthier child for having caught it. And we are a stronger family for enduring a crisis together.

cranio goodbye

Having said that, they are not happy memories I bring back from this day in time. {except for Happy Birthday to my best friend, sorry this date will always be the best and worst of celebrations!} Last year I was handing my 8 month old baby to a stranger. Hoping it wouldn’t be the last time I saw his ever lasting smile. He was so trusting, he never even looked back. To interested in the pretty nurse showing him all the new things down the hallway. And then he was gone and a cold door was slamming in my face. Brandon and I stood in that spot for what seemed like eternity. Just crying and holding each other. The only ones who could be whole heartedly there for each other. Not to discredit my Mom who flew across 2 countries to be there for us. Her’s was a different kind of pain. Not only was she watching her first grandchild go through an unbelievably intense surgery. But also watching her daughter experience it from a parent’s side. I’m so lucky to be loved in such a caring way.


It was a long morning. It was a long week. I can’t describe how emotional and emotionless I was at the same time. I shed those tears when he left my arms, and never again. I always thought when I became a mother I would be an emotional wreck if something like this happened to my child. Instead I found I was a rock. I allowed others to cry for me, while I remained strong for Sawyer. Each day for 7 days we remained in a loop. Rounds at 5am, swelling, tests, morphine, visitors, crying out in pain, more rounds, more swelling, more test’s, never enough morphine. 7 days. It’s longer than the normal “total cranial vault reconstruction” recovery. Sawyer needed 7 blood transfusions. They were expecting 2, so the added blood caused excess swelling. He was unrecognizable. Because of this I was only able to hold sawyer twice. The first time was only minutes while a nurse changed his sheets. The second time I actually got to sit with him for the afternoon in my lap. I had to move him back to the bed after a couple hours because he was so swollen, his body weighed what felt like triple his weight. And then without warning they were discharging us and sweeping us out the door.


The worst part was being home. I was no in charge of my baby who loved me, but was guarded with his trust. I struggled with his drastic change in appearance. I broke my streak of not crying on the first night. I had a full on crying, screaming on the floor breakdown. After all, there was a lot built up. But then I picked myself back up and remembered we had already come this far and we could do this. And we did. Life went on. Each day we crossed another milestone and soon we no longer got horrified looks of other customers in Target. No one asked about his ear to ear zig zag scar. Days turned into weeks, turned into months, and here we are, a year later. You can no longer see his scar. A stranger would never know. Even I find it all hard to believe.

craniosynostosis scar

So if your reading this, don’t think of it in sadness. Remember it as a mean’s to live your life in a more humble giving way. Treat everyone you meet with kindness, you never know what they are going through. {That’s getting a bit cliche sounding, I’m aware.} But it’s still true. We often get caught up on little things. Don’t. You may have thought you were just writing me a little note that day. It wasn’t. The immense volume of love and support we received that day and all the days leading up to and following, are more than I could ever have imagined. They meant the world to me. Don’t be afraid to do that for other’s. If you want to honor this day in anyways, reach out to someone else today. And just love and support them in whatever way you think they need. Buy your nephew some ice cream. Play house with your cousin. Drop a random card in the mail for a friend, just because. Phone your grandma and catch up. Do something nice and let someone you love know them. Just because. Don’t take things for granted. Enjoy each moment. Because even painful experiences are blessing’s in disguise.


Happy One Year Cranioversary Sawyer.

Craniosynostosis. You Will Get Through This.

Perhaps you have stumbled upon my blog after hours of research and crying. And you have found that somewhere out there, someone know’s what you are feeling right now.

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I have recently gotten a string of emails from other cranio families finding lissables and Sawyer’s story. I know how scary it is. By documenting it, I have made new connections to lots of other families. It’s one of the most rewarding things Ive ever experienced in life. Each and every email brings me to tears. And I am honored every time I receive one.

craniosynostosis | lissables.comCraniosynostosis |

I encourage you, if you have just found us, to reach out. Not only am I hoping to ease other cranio families minds, but I want to continue to be a source of help through each journey. If you have just found Sawyer’s story, please go back and read each post. I started documenting and blogging after he was diagnosed at 4 months. It was a therapeutic way for me to express my emotions. Most of my friends and family were in another country. I felt alone through much of it. I never imagined that those same post’s would bring other people peace. Now I strive to ease the pain as much as I can.

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It’s been 9 months since Sawyer’s surgery. Most day’s I don’t think twice about it. It’s just a piece of his life to be remembered. But then I will receive an email. And emotion’s and thoughts come flooding back. This week has been especially emotional, with the loss of a friends little girl. Born the same week as Sawyer. We bonded over our children being the same age and dealing with medical conflicts so early in life. She had cutis aplasia, and they went through surgeries around the same time. As a mom I was so relived someone understood what I was going through. The mess of anger, frustration, guilt and heartbreak. But nothing I went through would ever come close to what she is feeling today. And even though Cranio is immensely terrifying in so many ways, it rarely ends tragically.

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 It was actually one year ago this week, that those words leaving the doctor’s mouth, first shocked my world. But you would never know if you saw that little red head. He was walking, {early} at 2 months post-op. His hair grew back fully after 3 months. And we are now 9 months post-op. And he is a healthy happy little boy. A blessing I don’t take for granted. It will never leave your mind completely, but you will get through it. And I am here to help you.

Please email me directly at to ask questions, vent, cry, or just talk.

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Happy First Birthday Sawyer!

Where did 12 months go, for that matter where did 22 months go. I feel like January 2011 was yesterday when we first found out we were expecting. Sometimes the day’s seem to drag on, and then in an instant they are gone and its a year later. It’s been an amazing first year. Every day brings something new, rolling over, sitting up, crawling, walking. He’s learned so much in such a short time. He amazes me all the time.

And of course almost half of his first year has been revolving around craniosynostosis. I remember feeling so overwhelmed when we first found out, and now I wouldn’t change it. It has made our family stronger and closer because of it. We can take anything on after going through this. So to honor this huge part of his first life we decided to include a card in his invitations that asked in lieu of presents for donations to our favorite cranio foundation. I am still speechless at the generosity of everyone. We raised just over $500.00 for!!!!! THANK YOU, THANK YOU, THANK YOU! We are so excited to send them this wonderful donation. You have touched our hearts and also the hearts of many families going through an extremely hard time in their lives. Thank you to everyone who donated.

While I’m on thank you’s let me add a few more. To my mom and dad who helped with all the little things are last minute running around. To my sister in law and mother in law who ran around that morning and made the wonderful chocolate chip cookies. To my friend who lent me all the party plates and drove them across the city to me. To everyone who donated. To even more people who let me take a million pictures with this past year, so I could hang them through my house everywhere. To everyone who I am forgetting to thank! {Because I’m terrible at remembering anything.} Thank you to all our friends and family who celebrated with us near or far. I was so touched at all the birthday messages I received for Sawyer. Thank you.

I loved planning his birthday. From his invitations to the food and all the little details. His theme was “a year in a flash” Like the flash of a camera. Perfect for this little boy. I have taken well over 1000 pictures this year and I used all my favorite to create photo banner’s through the whole house! I love displaying pictures and this was a great way to get over 200 into a small space. I also made one of all his “firsts of his 1st year.” So first picture, first smile, first Halloween, Thanksgiving, Christmas, New years eve. First girlfriend! First mustache! First Valentines, St Patrick’s, Easter, 4th of July, First steps and finally first Birthday!

And I also had taken a photo every month with a monthly sticker to chart his growth. And unusually I didn’t share these photo’s with anyone. So I made a banner with coordinating colors and stickers and hung it with a Happy birthday banner I also made. It completed the dessert table. I love the way it turned out!

We made mac n cheese, hot dogs, meatballs with BBQ sauce, peanut butter and jelly sandwiches, wafer sprinkle cookies, chocolate chip cookies, watermelon, veggies and dip and of course cupcakes and a sprinkle cake. I always use my own events to try cakes I’ve been dying to make. The sprinkle one has been on my list forever, and it was perfect for his birthday! But wow was it messy! I will definitely make it again but be warned you will find sprinkles everywhere for days! I colored the inside layers for an added surprise. I am just so thrilled with the way this cake turned out. I also made a banner to hang from it for an added touch of birthday flair! I picked up this “wish” from the 1$ section of targets scrapbooking supplies. They have a whole bunch of words. And I threw it together in less than 5 minutes on the morning of the party. I’m so glad I did because I think it makes the cake!

We had a bounce house for the kids, and I borrowed some games from my sister in law,a crafts table, {also credited to my sister in law!} and of course the million and one toys Sawyer already had. I also did a photo booth area, with props and a poloraid cut out and title with “Sawyers 1st Birthday 10/13/2012” I had a disposable camera on the table so I can’t wait to get it developed and see all the funny pictures! Of course we got a couple with the good camera too!

I made Birthday cake popcorn as the favors for the party. I found the recipe on pinterest. I also made the little paper tops to seal the bags of popcorn. I love how homemade item’s add a personal touch to each favor. I wrote thank you on each one so I felt like I was individually thinking of each person as I did so. I hope everyone liked them, Brandon gave it the seal of approval the night before, devouring the left overs!

We had so much going on and I felt like I missed the whole party! {That always happen’s on the big days} So I am sorry if I never got to talk to you, or if you saw me running around like a crazy woman! I loved seeing everyone together and all the kids playing. It was just what I wanted. Here are the rest of the pictures from our special big day!

Happy First Birthday Sawyer! Can’t wait to celebrate so many more with you. You are the greatest gift a parent could get and I treasure every memory we are making with you.

4 Months Later.

I have been so touched by everyone who has reached out over this past year to us. It was something I never saw coming but I believe it has made me a better person. Going through something like this makes you completely selfless. All my thoughts, feelings, and energy were put into that one little boy. I am so grateful for those unbelievably hard days. I thought they would never come, then never end, and now I feel that it never happened. Recently I have had a lot of people {most of whom are stranger’s still finding Sawyer’s story and benefiting from his journey,} asking for some updates on Sawyer.

What can I say? It truly does feel like it never happened. His hair grew like crazy and he has a full head of hair again. I recently looked for his scar because you cannot see it. I looked, knowing exactly where I traced it for so many nights. And though I can see it, it’s so faint that I know no one else will see it again. It is only a memory of the past.

We have another post op check up coming up next week. It is the last time we will see the Neurosurgeon till next June. Which will be the last time we see her ever. And we do not see the Pediatric Plastic surgeon until June as well. All of which are just to keep on top of his recovery. There is only a 3% chance that he doesn’t have a full recovery. In which case the muscle around his temple would thin out more than expected and they would appear extremely hallow. And it is only a cosmetic issue, meaning we are 100% back to a healthy happy baby! And is he ever happy. He continued crawling the minute we got him home, and he was so determined to walk that he took his first steps at 10 months old, and is running around the house like crazy at 11 months. And he is hitting 12 months on Saturday.

12 Months, 365 days, 1 year. And Cranio took up 5 months of Sawyers first year. So for his birthday Saturday we included a little note in the invitations. We asked that in lieu of gifts we will be doing a donation to in his name, and everyone attending is welcome to add to this donation. This is a non-profit organization, started by 2 mom’s who each had a son with craniosynostosis. It was one of the first sites I came across after our diagnosis. They offer a community with success stories but also provide a care package before every surgery. Each one is unique as it is based off of donations. So ours contained: Tylenol, a hat for sawyer, a mini fleece blanket, snacks, Kleenex and lots of other little things you can forget about. I’ve begun decorating and getting things ready for the party and there is a cute little corner all about the donation and his story! I can’t wait to share all the special pictures this weekend!  I’m so glad that we are celebrating his cranio on his birthday.

To all the parent’s that are still somehow finding Sawyers story. I am honored that you all keep reading my words. I am so happy his journey is helping others. Reading other families stories helped me the most so I am just trying to do the same. Please feel free to contact me at if you ever want to talk one on one!

Thank You

For each and every single person who was behind us during Sawyer’s journey, thank you. We couldn’t send thank you’s to every single person. {Though I would have loved to!} I wanted to share it with you over the blog. I’ve said it a million times, but it will never be enough. You all made it a more enjoyable and easier time during the surgery and recovery. You were there for support and I am still speechless over how many people reached out and continue to give us encouragement. Thank you from the bottom of our hearts. We couldn’t have done it without you!

Did it even happen?

Lately Sawyer has been showing his true self again. The biggest smiles I’ve ever seen. Sometimes I think he is going to burst with happiness! They completely light up my world. I can’t even capture their full power on camera. Its been amazing to see. Sometimes so amazing that I have to stop and think, we were in the PICU only 4 weeks ago.

I am so grateful for his recovery and prognosis. We are done with craniosynostosis. {hopefully} For 4 months it consumed my life, and now I find it hard to believe it even happened. Even his scar is barely noticeable!

He’s not fully back to his Sawyer self. His sleeping pattern is way off, and he is irritated very easily. But those megawatt smiles are all I needed and more. Life is as normal as it can be with a 9 month old! Wishing your life is as smile filled as ours this weekend!

Follow up appt. with Neurosurgeon

Hello everyone!

This is the first time I’ve been behind on the blog in awhile. So sorry for not updating those of you not hooked up in other places. We had our follow up appointment with our Neurosurgeon on Wednesday. She was out of town, so we saw her assistant. Who I adore. She is in ped’s neurosurgery for a reason. Sawyer wore his special “My first haircut was by a Neurosurgeon” onesie, I had custom made for him along with the “chicks dig scars” one. She thought it was so cute that she took a picture of him in it to show her surgeon friends. He even gave her a smile for it! Which is special because Sawyer has shown some trust issues since our stay in the PICU. He is very weary of new people and even people we are close with. Poor Uncle Matt got a cold reception the first time seeing him after surgery.

The good thing from the appointment is that we are on track. She showed a bit more concern over his ridge on the back of his head. Which I was happy to see. She felt it, made sure there was no fluid build up, and made note of it to watch for our next appointment in one month. All in all things are getting back to normal. Or as normal as can be.

They hoped to have Sawyer off all medication by this point. But that is not flying for him. He cries a lot more than before. And his cry has changed. It almost sounds like he feels so betrayed by you. For putting him down for a nap, or missing a nap, or not feeding him before I know he’s hungry. It’s very sad to listen to.  So we are still slightly relying on children’s advil and tylenol. Sawyer will not be fully recovered for a year. It takes one month for the incision to heal, the stitches are already beginning to dissolve. The plates and screws will take a full year to dissolve. But he’s doing better each day, just what is to be expected 2 weeks post-op. for such an invasive surgery.

We’ve been enjoying our time with GB staying with us, and lots of cousin time. His oldest cousin Tate has been so amazing with him. Such a caring little boy. I am so happy he is getting to grow up with cousins and family around. On that note, I have to dash, we’re having a big family BBQ night here at the house. Followed by movie night. Great way to send off GB, and then its just me and Brandon again. But we’ve made it this far and we know you are all still behind us. Always thankful for all of you, and everything you do!

Follow Up Appt. with Plastic Surgeon.

Today was our follow up appointment with our plastic surgeon. As always he had us in and out in record time. But we got a couple more questions in this time. The big one being: what happened to the back of his head?

There is a raised ridge on the back of his skull. We didn’t notice this until discharge day when we were finally able to pick him up off the bed. There is also a slight rug burn on it as well, just from friction. It feels like bone and that’s what I assumed it was. Today however we found out it’s a plate. Sawyer’s surgery involves a lot of dissolvable plates and screws. To hold together the newly shaped skull. Apparently while in the PICU, the plate was shifted down while laying on his back all week.

I am 1. a little upset there wasn’t some proactive solution to this. I was never told in the PICU that he should be moved more to avoid this problem. In fact, they barely let me shift him around at all.

2. I asked if this was a normal and was answered that it isn’t uncommon. Which didn’t completely answer me at all. When Sawyer is put on his back he cries out in pain. He never did this before and I am worried this is causing unnecessary pain.

{Before and after Top view. Not as narrow, or long anymore. Also missing hair 🙁 }

We do have a second follow up appointment with the pediatric plastic surgeon in one month. Once the swelling is completely down and we can see his recovery a bit better. At that point it should be more obvious if this is going to be a problem. Until then we will keep and eye on it. And I will bring it up a second time at our pediatric neurosurgeon’s appointment, which is on Wednesday. That will be the last appointment with her, but I will see the plastic surgeon in one month and then once a year for 5 years.

{Before and after of front view, The head is not as narrow, much more rounded on the top.}

Just going to keep throwing out the thank you’s, I am so touched every time we receive a cards in the mail, a package, gift cards, messages, toys for Sawyer, treats for us. Its amazing how many people have reached out to tell us in so many ways, that they are thinking of us. Thank you everyone who is still following our story. Means the world to our little family!


After all the feelings I shared yesterday, this was all I needed. I’m still struggling with his change in appearance and his being in pain still. But it gets easier and better each day, because of moments like this.

I’ve never seen a brighter smile. {It’s my kid, I’m allowed to be biased.} It melts my heart that already a week later he doesn’t remember, and he already looks this amazing. I would have never dreamed this possible. A smile this big on recovery day 9. My little man is here again.