Charlie’s checkup

Bad news: Charlie had craniosynostosis and a football-shaped head when he was born.
Good/bad news: He had surgery at just 3 months old to take care of it so it’s over and done!
Good news: You’d never know that we went through this terrible trauma, he’s so well-adjusted.
Bad news: His head is still oddly shaped with a flat spot and a “shelf” that juts out in the back.
Good news: He doesn’t care.
Bad news: We had to go for yearly check-ups with the neurosurgeon at Lutheran General Hospital in Park Ridge, and the appointment had been canceled due to emergencies. Twice.
Good news: We finally had his two-year check up yesterday.
More Good news: His head is growing in all directions, which was the goal of the surgery.
Bad news: It’s still growing more lengthwise than width-wise.
Good news: Dr says the important thing is that his head is growing in all directions, and he doesn’t have his “adult” head yet and he looks “great.”
Bad news: His growth for the next four years will be slow so there will be gradual, but little change to come.
Good news: We don’t have to go again until Charlie is 6 years old.
Bad news: There’s nothing we can do about it.
Good news: Charlie doesn’t care.
More Good news: And he’s just so darn cute anyway!

“For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11

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6 thoughts on “Charlie’s checkup

  1. That’s good news. It’s good to hear things are going well. Hmmm…I wonder what his adult head will look like?? Charlie had a 6 month check up and CT scan with the doctor in Iowa City and he found that Charlie’s head was fine so we were relieved!

  2. I’m glad his checkup went okay and sorry it wasn’t all you’d maybe hoped for. And we think he’s pretty darn cute too!
    Mason has his follow up appt tomorrow with the ENT…I’m hoping we don’t have to have him get bloodwork, but it may still have to happen. If so, we have to take him to a hospital to have him strapped down! yikes!

  3. Thank you for sharing your amazing story. I just stumbled across it while looking for pictures on optimism. I will continue to keep you and your precious chilod in my thoughts for years to come.

  4. I’m very happy for you that everything went well! My son was born on July 23rd 2008 and when I was in the hospital they diagnosed him with “a football head”. I was very scared because I had no clue on what craniosynotosis was. They set him up with an appointment when he was 10 weeks old. Thats when he had surgery. Just like you I didn’t want to hand him over to the doctors and nurses. The procedure took about 3 hours and when he was out I had to wait in PICU for a half an hour and then I could see him. I cried when I saw him. He didn’t look like my liitle angel anymore. He looked like a totally different person. His eyes were very swollen and his head was round because it was so swollen. They cut him from ear to ear in a strait line. When he started crying he went for hours and the nurses told me not to pick him up or anything because he was so much in pain. I wanted to tell that nurse alot of no good things. I knew my son was in pain and vey hungry. He hadn’t eaten since midnight the night before surgery. I cried alot. He got out on the 4th day. I was so happy. Now he is 11 months on the 23rd and he looks like he is 6 months. So tiny. His head still looks funny, big in the front. From his eyebrows to his chin is a tan color and his forehead is alittle darker and that part sticks out more and it goes in at his temples but other than that everything is going well. It’s good to know that other people that have children share their stories and share their feelings on the same things that your going through or went through with your children are out there. I also have to go for yearly check ups. It’s a pain to travel a long way but at least I know he’s getting the right treatment he deserves. And pretty soon he will have a normal head like the rest of us.

  5. My son had the same thing, sagittal. Went through surgery at 6 months, did the helmet thing. He is now 9 years old. Looks great. He still has a slight bump that juts out from the back of the head. Like the doctor said, give it time. His head will “fill in”. I can’t say exactly when he will start to look “normal”, but in my case, when I looked at pictures of my son starting from birth to surgery and onward, each year you notice a marked difference.

    God Bless

  6. Hi my son is also diagnost with craniosynostosis and hi needs surgery ,im very scared because hi is 18 month and don’t know what to expect..
    im happy to hear that charlie did well thru his surgey,and i hope my does to.
    god bless your whole family and thank you for shareing charlie story

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