Hip hip hooray!!!! Ben is finished with helmet therapy!!!!
Ben and I went to Dallas today, along with my mom, for what we thought would be a helmet adjustment and scan. When we arrived Dwayne said Ben does not have to wear it anymore! I was so excited that I didn't ask too many questions. I probably should have been a bit more inquisitive about if he had talked to Dr. Genecov or how he came about his decision to discharge us, but I was too excited- I just wanted to get out of there. We might send him an email just to double-check that it is the right time for Ben to finish up, but I won't push the matter too much. I am so happy to have Ben's fluffy head back!
As we were checking out of Star Cranial, the receptionist said, "Have a good life!" I thought this was great- no more helmet appointments! Woo hoo! Dwayne said we could come back in six months, when we go see Dr. Genecov, to get a scan if we wanted to follow up, but it is not required.
The whole afternoon I was kissing Ben's head and playing with his hair. I just can't get enough of his head. It was amazing how many comments he got as we were walking around: "Look at that red hair!", "What beautiful hair" and the ever-present "Where did he get that red hair?" I didn't realize how few comments we got with his helmet until he had it off. He looks so different with it off- it might take me a couple days to get used to it. I am loving his fluffy red-head!
As my mom and I were talking today she said, "What a crazy six months you have had!" I couldn't agree more! It has been almost six months since we received Ben's diagnosis. At the time it seemed like it would take over our lives forever. It is hard to believe that this chapter in our lives is coming to an end. Ben has amazed us with his strength and positive attitude- he truly is the happiest baby I have ever seen. This journey has made us realize how much we take our health for granted. I appreciate all three of my children so much more because of what we have been through. What a journey it has been!
Ben's journeywith Craniosynostosis is winding down, but I will continue to update the blog whenever there are any major milestones or developments. Thank you all for your continued support and prayers. We are so grateful for all of our family and friends!
(The picture above was taken tonight to document this momentous day! There will be many more hlemetless pictures to follow. It also shows a more serious side of Ben. He was totally exhausted after his big day!)
Ben and I had a Dallas day today! We met with Dr. Genecov and had a helmet adjustment. It was a busy day, but we had good appointments.
Dr. Genecov opened the door and Ben's face lit up like a Christmas tree! He smiled so big and stretched his arms out to Dr. Genecov- it was one of the cutest things I have ever seen! Dr. Genecov held Ben for a minute while his nurse and fellow gushed over him. He is a big hit at their office! (Enough bragging about Ben... I know...)
He said that Ben's head looked great. He was pleased that his fontanels (soft spots) were both still open- which I thought we wanted to be closing up. He said we do not want them to close up too fast or get too hard because they could fuse again. So, Ben's head is doing just what it is supposed to do. I asked him how much longer he wanted Ben in the helmet and he said to keep him in the helmet until he outgrows it, but we do not need to get a second helmet. He was very happy with Ben's results and doesn't want to see him again for six months!
After that, we headed on over to Star Cranial. I was anxious to ask Dwayne how long he thought Ben's helmet would fit him. He said he is a very skilled technician who can make the helmets like Ben's last for a long time (not the news I really wanted to hear). He then went on to say that there is a group of doctors involved in a study, Dr. Genecov being one of them, and Dr. Genecov tends to keep his patients in their helmets longer than the other doctors. The average for the others is 14-18 weeks. Ben has been in his 16 weeks currently.
Dwayne said he is meeting with Dr. Hobar, another surgeon who does the same procedure as Genecov, next week. He said he would ask his opinion about how long he thinks we should keep Ben in his helmet. I was not going to leave there until I got a guess out of him, so he told me probably about another month. This was music to my ears! I was prepared for another three months. I am trying not to get too excited, but it is looking like things are winding down on the helmet therapy front.
We go back in two and a half weeks. We will do another scan and Dwayne will look at everything and call Dr. Genecov to discuss the results. We have another appointment booked for August 10- I am hoping this will be our last helmet appointment!
Going to Dallas wares me out, but it is nice to have Ben to my self all day! We had a fun day together, and I will probably miss the little day trips once they are over. But, I can't wait to have his perfectly round head on display for all to see, without a helmet!
Picture: Ben fell asleep with his book in his mouth while we were taxiing to our gate in Tulsa- not very good timing. But, he did look awfully cute, so that is the picture for this week's post!