PT and Dallas Trip 3

I guess no news is good news when it comes to Ben's Head Blog! The past couple weeks have been busy, but nothing too stressful or urgent.

Ben started physical therapy last week. He has a mild case of Torticollis- which causes his head to always tilt to the left. It also prevents him from turning his head all the way to the left. Dr. Genecov mentioned this in the first 10 minutes of our first visit with him, as it is very common with Sagittal Craniosynostosis. Another reason to do physical therapy with Ben is to keep him on track with his gross motor skills. Because his head is so big and he has the added weight of the helmet, he is at risk for delays in gross motor skills- such as crawling.

Ben progressed a great deal just in the week of doing our special exercises. We would put him on our chest to do tummy time, so that he would be trying to lift his head to see our faces instead of just the floor. He did great with the exercise, especially with J.P. He usually just wanted to lay his head down and cuddle with his Momma! We also sit him on a ball and tip him to his left so he will tilt his head to the right. It is a natural instinct to balance yourself.

This week we are on to bigger and harder exercises. Ben now has tummy time on a rolled-up towel with his elbows tucked under him, like in the picture above. This allows him to hold his head up, but his shoulders take some of the pressure off his neck. He is doing really well so far. We also are focusing on getting him to turn his head to the left by tracking a toy. Again, doing great. I think he will be progressing quickly and we will hopefully be done with physical therapy, at least on a weekly basis, in a month or two. Right now we are going twice a week on non-Dallas weeks, and once a week on the weeks we have helmet fittings.

We went back to Dallas this Tuesday for another helmet adjustment. Everything is going along great- no problems. They didn't even need to adjust his helmet much, just tuck his little ear pieces back in to keep it stable on his head. Next time we go he will be scanned again. I am excited to see the progress he has made with his head shape. We will see Dr. Genecov next time we go back as well. Ben is such a great baby that the Dallas days are almost a little vacation for me! I get Ben to myself all day and get to do a bit of shopping every now and again. He is such a good traveler!

Good news on the insurance front! We were approved for in-network rates. I won't go too far into it, but both of our surgeons were considered out-of-network. It was possible that we would have had to pay a very large deductible because of this, but our appeal was approved and our insurance company is covering our surgeons. Thank goodness!!

Things are finally starting to settle down a little bit around our house. I laugh when I say that, because things are never calm at our house with three kids under four! But, they are much better than they were in the middle of preparing for his surgery.

Thank you to everyone for your continued prayers and support!


One Month Post-op

Well, we have had quite the busy couple weeks since my last update! Ben is officially one month post-op and has been in his helmet 23-hours per day for over two weeks. He amazes us with how well he is doing.

Ben has adjusted amazingly well to his helmet. He had a few nights that he didn't sleep well, but I figured out that he was getting too hot all swaddled up with his helmet on. Once I switched to a lighter blanket and left his little feet out he slept great again, thank goodness! He has spoiled me by sleeping through the night! My biggest gripe about the helmet is that his hair is falling out like crazy. I am sure this is a combination of the helmet rubbing on his hair all day as well as being very hot. Hopefully it won't all fall out! Ben is doing so well in his helmet, he even lifted his head up off the floor for the first time last week! This is a big step because he has a huge head and the added weight of the helmet.

J.P. and I have adjusted to the helmet lifestyle as well. Ben has two baths every day to wash his hair and his helmet so he doesn't get too stinky. I am getting used to explaining it to people when they ask. I have found that a surprising amount of people know of someone who has had to wear a helmet for one reason or another. Who knew!? I'm actually so used to seeing him in it that I think he looks a little funny without it. We cherish our one hour a day of helmet-free time. I kiss his head and snuggle with him as much as I can.

Ben and I had our second day trip to Dallas yesterday. Although it started off on the wrong foot- I overslept- it went very well. We made it to Dallas in time for our 9a.m. appointment with Dr. Genecov. He felt around on Ben's head and said everything is good. He had some concerns about the helmet therapy, but worked all of those out after talking to our "helmet guy." He said that Ben still has a long time in the helmet because his soft-spot on top is still so open. But to me it seems like we just started with the helmet, so I am not discouraged. I just hope he won't be in it for six more months!

We got in a bit of shopping in between appointments yesterday, which was fun. It is nice to have some time outside of doctors' offices! Then we headed to Star Cranial, the helmet place. Ben had a few adjustments made and DeWayne talked to Dr. Genecov on the phone, which DeWayne said was a first. Dr. Genecov is taking a more active role in Ben's helmet therapy than he has with his previous patients. It is just one more reason we have been very happy with Dr. Genecov.

Today we met with Dr. Kayser, a genetic specialist. As I mentioned previously, Ben's genetic testing indicated that he had some abnormalities. He said that Ben's Y chromosome has some parts missing and some extra parts as well. The syndromes associated with the abnormalities don't seem to be present in Ben, thankfully. None of the abnormalities appear to be related to Ben's craniosynostosis diagnosis. The meeting was a bit overwhelming to me- genetics is all so complex. Both Ben and J.P. had blood drawn today to do more tests. Since it is his Y chromosome that is abnormal, all 3 boys and J.P. may have the same abnormality. Since they are all seemingly healthy we are not too worried. He also said that the Y chromosome is relatively unimportant. We will find out more in 2-4 weeks.

We go back to Dallas in two more weeks for a helmet adjustment. Should be an easy trip with only one appointment!

This whole process has definitely made me more grateful for my healthy kids! Ben's condition is minor in the grand scheme of things, and he should be good as new in six months. We are so blessed!