Alexander's Update

Alexander had his scan today. It wasn't as bad as I had anticipated. Alexander was such a trooper. You can see that for infants they put them on the CAT scan like a bed, he lays right between it as it scans and takes a 3D image of his skull. He had to wear this tight little white cap so that the scan was clear and concise on his skull. The only hard part was that he had to hold completely still, we all know this is impossible for infants! So he cried quite a bit as he kept moving and so we had to reach in there and hold his head completely still as he was screaming his head off. We probably had to take 6 different scans because he kept moving. But we finally got a good one. Alexander has what is called plagiocephaly which is an uneven skull or sometimes known as "flat head". With Alexander it's mostly the top of his head and the right side of his forehead that bulges out further then the left side of his head. To correct this, he will have to wear a prosthetic helmet for 3 months which will move the plates in his head. He will wear it 23 hours a day and can only take it off for baths. The other issue Alexander has is what is called torticollis which literally means "twisted neck". Alexander has a hard time turning his neck to the left which we are working on, we work on that by feeding him so that his head and neck turn left as well as putting him to sleep on his left. Even when we speak to him, our physician has told us to stand to the left and talk to him so that he has to turn his head and get used to using those muscles on that side.

So what is the good news here people? That this is ALL treatable! That is the best news. This is a far cry from where we were at 2 weeks ago when we thought he was going to have to have surgery. We are very happy and relieved that we are on the track to get this treated.

Thank you for those of you who reached out to us the last few weeks - it really has meant the world to us. We love you all!!

P.S. What was really interesting was that our physician told us that this problem of babies having these types of heads is only common in the US since the campaign of SIDS started back in the late 80's. Other countries don't have this issue w/ their babies heads because they put them to sleep on their stomachs but the US doesn't and now they are seeing record high cases of what Alexander has.