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!
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!
So glad to hear that you are all doing well!! It's funny what you said about how so many people mention they know someone who has had to wear a helmet. We have found that with our adoption as well. I will tell someone that we are adopting and I often get comments like, "Oh, my niece was adopted" or "My best friend adopted her daughter." It's nice that people are able to make connections. I hope everything continues to go smoothly!
ReplyDeleteMaggie - you have learned so much and have shared with us much more. Ben is so beautiful and we love to be able to watch his speedy recovery. Please keep the adorable pictures coming - we love them. We are all so blessed and thank God for that. Sara
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