June update

It has been almost a month since my last post! As I've said before, no news is good news.

Ben has been working really hard with his physical therapy, and has made great strides since we started. We saw Liesa, our primary physical therapist, two weeks ago and she was amazed at how much Ben has improved. She had not seen Ben in almost two months, so she was very impressed! She checked over all of the goals she made for Ben initially, and he had met every one of them. She does not consider Ben to have any kind of delay, and wants to cut back on our appointments- woo hoo! Ben will go every-other week until he starts crawling, and then once a month until he starts walking. He will be cruising around before we know it. He already makes his way around by rolling and squirming. His nickname at our house is "Speed Roller!"

Last time we were in Dallas, I asked our orthotist how long he thought Ben would be in his helmet. He didn't give me a direct answer, but said that Ben still has both on his fontanels (soft spots) very open on top. They want those to be closed, or close to it, before they take him out of the helmet. To me, it feels like that means another 3 months. The shape of his head is looking phenomenal, we just need that bone to grow in on top. They said initially 3-6 months of helmet therapy, and we are a little over three months in. Hopefully it won't be longer than six!

We are headed to Dallas tomorrow for an adjustment, and then we will go back in two weeks and see Dr. Genecov. I can't wait to hear what he says! I think Ben is having a scan tomorrow. If so, I will post the scan and some "head shots" later this week. I love seeing how much he is improving!

Thank you all for your continued support. We are so blessed to have this sweet little boy in our lives!


  1. He is such a cutie. I am so glad that baby Ben continues to do well and make progress. He is getting awesome at pushing himself up during tummy time. I hope all goes smoothly in Dallas!!

  2. Hi my name is Leah and I am from australia. I have 2 boys Jake 13 and Laine 9 and 2 girls Britt 11 and Fallon7. Both my boys were born with crainosyntosis! Jake was pretty servere and had surgery at 7 months, his bones were fused at the back of his head making his head very flat at the back and very pointy on top, Laine was not so bad and had helmet therapy for a few months. Both boys are happy, healthy boys now. I would love to hear from you, my email is tl.mcclelland@bigpond.com
    Best wishes to little baby Ben!
    with love from Leah