Happy Cranioversary Ben!

Today marks the one year anniversary of Ben's surgery. I thought the best way to celebrate this occasion was with a photo shoot (above) and a letter to Ben, which I will share with you.

Dear Benjamin,

On November 24, 2009 you came into the world and you made it a better place. Your sweet personality was obvious from the beginning, and everyone who met you loved you instantly. You amazed everyone with your easy-going nature and ever-present smile.

On January 28, 2010 you were officially diagnosed with Craniosynostosis. We were so scared for you. No baby should have to go through surgery, and especially not one as sweet as you. We put our fears aside and searched out the best possible care for you. We were so lucky to find such a wonderful and talented doctor just four hours away, in Dallas. Although the decision was hard, we knew we were putting you in good hands.

On March 3, 2010 we handed you over to a nurse and watched them take you back for surgery. That was one of the hardest things we have ever had to do. We waited anxiously, and were overjoyed to hear that the surgery was a success and that you did well through it all. The minutes seemed like hours as we waited to see you again. We were so happy to have you back in our arms! Mom held onto you for hours at a time! The first day was rough, but you amazed everyone with your strength.

The next day you woke up with a smile on your face. That was the most beautiful sight we have ever seen! We knew right then and there that you were still our sweet, smiley, Baby Ben- just with an improved noggin! Every doctor and nurse who came in was amazed at how wonderful you looked and how happy you seemed. We frequently bragged on you, saying, "He is the best baby in the whole world!" After that first day, you never lost the smile on your face again. You wore a helmet for four months, and it never fazed you a bit. You are such a strong little guy!

You are so blessed, Ben! You had so many people praying for you, and still do. Family, friends, and even people who had never met you prayed for you. God heard all of their prayers, and answered them. We feel so blessed to have you as our son, and even more so to see you as a happy, healthy, little toddler!

So today, on March 3, 2011, we celebrate your first cranioversary! Ben, we are so proud of you for each and every one of your accomplishments. You are such a beautiful, strong little man and we love you more than you will ever know!

Lots of Hugs and Kisses,
Momma and Dada

I started this blog as a way to communicate with our family and friends about Ben's cranio. I also found that it was a good way for me to sort out my thoughts and feelings. Since last March, I have received several emails from families thanking me for my blog. They stumbled upon it in their own research on Cranio and found that it gave them strength to make it through their child's surgery. I get tears in my eyes every time I get one of these emails. To be able to help another family is the greatest feeling! So, it is with mixed emotion that I say goodbye to Ben's Head Blog!

The past year has been a roller coaster of emotions, but we could not have made it through without all of our friends and family. Every note, dinner, phone call, prayer and thought made a difference to us. We were overwhelmed with the amount of love and support we received along the way. So, a big Thank You to all of Ben's fans out there.

No More Dallas Days!

We received great news in Dallas yesterday: no more Dallas for a whole year! Dr. Genecov was thrilled with the way Ben's head is growing. It was good news all the way around yesterday!

We started the day off bright and early at Star Cranial (helmet place) to get a scan. J.P. and I were both anxious to see how his head has grown since he got out of his helmet. Ben was not a fan of the scan- in fact he screamed like crazy when I layed him down. Luckily, it only takes about 6 seconds. The orthotist went over all of the numbers with us, but what it came down to was this: his head is growing exactly how they want it to- it has even improved a bit since he finished helmet therapy. Yay!!

After a little fun Dallas time, we headed over to Medical City to do all the baby torture things- pictures, vitals, and tons of skull measurements. Ben is not a fan of being taken away from his Momma, and screamed all the way through his pictures. He then was terrified of the nurses weighing and measuring him. Screamed, screamed, screamed! Ben is not usually a screamer. I was so afraid I was going to have to hold him, screaming, while Dr. Kolar took all of the skull measurements, but luckily fruit loops cheered him up! Dr. Kolar uses metal calipers to measure everything on the face (eyes, ears, distance from eye to ear, etc...) As you can imagine, this would be pretty hard to sit through for a one-year old. But, we just kept stuffing his face with fruit loops and he sat there like an angel!

In the afternoon, we went to see Dr. Genecov. I was feeling better about this appointment after our scan, but was still a bit nervous. Dr. Genecov must really have a special place in Ben's heart because Ben smiles at him and reaches for him every time he sees him. This is particularly unusual these days- he is a total Momma's boy. He felt Ben's head and said everything was exactly how he wanted it to be. Ben still has a little soft spot on top, but he was not concerned about it at all. He said he was pleased with the scan and everything looked great. We will go back and see him in a year! Woo hoo- no more Dallas trips in 2011!

J.P. and I keep looking back and saying, "Wow, what a year we have had!" This was just one more opportunity for us to do that. We are so thankful for our sweet Benjamin!! We are so blessed to have found our wonderful doctors. We are so grateful for all of the love, support and prayers we have received over the last year.

Ben's Life Lately

Happy New Year to all of Ben's fans! We had such a wonderful Christmas! J.P. and I both feel so incredibly blessed to have three happy, healthy boys. Our only wish for 2011 is good health!!

Ben's first birthday was spent in Florida, as I mentioned in my last post, but we had a big celebration for him when we got home. I think he deserved it!! We invited all of our family and some friends too. In lieu of gifts, we asked out guests to make a donation to the Jorge Posada Foundation, which helps children with Craniosynostosis and also creates awareness. It felt wonderful to know we were helping someone else who is going through the same thing. Here are some party pics: Soon after Ben's birthday we were discharged from his physical therapy! He began physical therapy for his torticollis, and then they kept us around just to make sure he progressed normally. Because his head is so large, he was still considered at risk for some delays. Ben exceeded their expectations and met all of his goals. We had two wonderful therapists, Kea and Liesa. Ben really loved them both and loved to go and show off all of his new skills. They were wonderful, but I must admit, I am happy to be all done with it! Here is a picture of Ben and Kea.
Ben is doing so great! He is not walking yet, but it could be any day! He stands on his own and looks like he is about to take a step- you can see him thinking about it, but then he gets down and crawls. I am pretty sure once he takes his first steps he will be off chasing his brothers around in no time! Jack and Luke didn't walk until 14 months, so Ben is not any slower moving than they were.

We are 10 months post-op now and we go back to see Dr. Genecov on Monday, January 10. I will be so relieved when this appointment is behind us. I am excited about getting the "all-clear" but still a little nervous that we might not get it. We emailed with Dr. Genecov about two months ago, and he said he was very pleased with Ben's results. At our appointment on Monday we will have a scan at the helmet place, just to see how his head has grown since he finished with his helmet. We will also meet with Dr. Kolar, the anthropologist, to measure Ben's head (like 100 different measurements) for the on-going study on the procedure Ben had done. We will then finally get to see Dr. Genecov. I am really hoping he will just want to see us once a year until Ben is three or four. Keep your fingers crossed!

I will do one more post next week, and I am really hoping that it will be the final post on this blog. Okay, I might do one more in March on his "Cranioversary," but it would be a fun one! I love using this to brag about Ben, but I would much rather just brag about him and not talk about his head!

I would like to take this opportunity, once again, to thank everyone for their love, prayers, and support. It has been such a crazy journey, but we are so grateful to have all of the support we have had. We are so lucky to have such an amazing little boy!!