View Full Version : New to this amazing forum
06-13-2008, 05:47 AM
Hi everyone, I have been around for some weeks and I must say that I find this forum very helpful. Thanks to all administrators, moderators and everyone else for keeping this forum very active!<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
I’m the father of André who was born on October 27 last year in the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:country-region w:st="on">Netherlands</st1:country-region> (we are actually Portuguese but living in the <st1:country-region w:st="on"><st1:place w:st="on">Netherlands</st1:place></st1:country-region>). When he was 1.5 months we noticed a ridge in his head, but the doctor said it was "normal". I guess a lot of you experienced similar situations, right? After several months being worried about the strange shape of his head, in April another doctor saw him and suspected he had craniosynostosis (the saggital suture closed). Of course as parents we got really scared by the possible need for a surgery and had little information. At that time I was spending hours on the internet and as soon as I saw pictures of other children I realized that my son had it. Later it was confirmed by X-ray that André needs surgery. <o:p></o:p>
The surgery is planned for either September or October this year. I will write more in detail in the "our Stories" section.<o:p></o:p>
06-13-2008, 07:16 AM
Welcome to Cranio Kids! I'm glad you found us and are finding helpful information here. Andre looks like a cutie :adore As you already know, we've had many stories like yours where parents were told it was "normal", I sure wish there was more awareness out there.
I'm looking forward to reading your story, and again, welcome!
06-13-2008, 07:18 AM
I'm so glad you found us. There are a lot of parents on here with saggital babies and I'm sure they will say "hello" soon. I'm looking forward to reading your full story. You'll be amazed by the support found here.
Andre is a handsome big boy!
06-13-2008, 07:31 AM
Welcome to CK....I'm glad you introduced yourself. You have a cutie pie. You'll get a ton of support here.
06-13-2008, 07:42 AM
Welcome to craniokids, Goncalo. It is a wonderful place for information and support. It saved my sanity many times while we awaited Jack's sagittal surgery.
Andre is adorable and he definitely appears to be in the sadgy club. I really got used to Jack's sadgy look, and it took me a while after surgery to get used to his new round noggin. Now instead of narrow head/ chubby face, it's the other way around, which is how it's supposed to be, but you just get used to your child being how they are!!!
Looking forward to learning more about your family and answering any questions you may have! (I don't know how to do the accents for your name and Andre's! How do i find them??? :) )
06-13-2008, 09:07 AM
Welcome to CK! This site is a wonderful place for support and information!
06-13-2008, 09:48 AM
Hi and Welcome to CranioKids!
06-13-2008, 11:01 AM
Welcome! You've come to the right place for support and information. Sorry you've had to join us though, I know this is a scary time for you. Your boy is just a cutie and I'm sure he'll be just fine when all is said and done. Don't be afraid to ask any questions you have, someone here will be able to answer them, I'm sure.
06-13-2008, 11:34 AM
Welcome to CK! I'm so glad you found us here. It is truly amazing how many countries we are now representing. I'm sorry that you are going through all of this it is definitely a roller coaster ride of emotions. Your little guy is such a cutie. This place has been a place of refuge for us parents going through this cranio journey. I do hope you find the support that you need here. Ask anything or feel free to vent some frustrations. There are families on both sides of this journey and someone will be able to help. I'll keep your family in my prayers.
06-13-2008, 12:03 PM
Hi and welcome!
You are right that this is an amzaing forum. Everyone is very supportive. You will find that you are not alone. It is comforting to know that others have experienced what you are about to encounter.
So... you live in Wageningen? I have an aunt and uncle who live in Wagneningen. Last September we went to a family reunion at their house. We all took a long walk down by the river. It was a fabulous visit. We stayed in a small town (can't remember the name at this time) by Appeldoorn.
I love Holland!
Hopefully, I am sure that there are specialists who can help you in Holland...perhaps in one of the bigger cities like Rotterdam or Amsterdam.
Kaitlin Mae Diver 2/10/08
Craniosynostosis in May 2008
06-13-2008, 01:27 PM
Welcome to the site. I hope you are able to find all the answers and support you may need here.
Your son is adorable!!
Welcome to CK hope you get your answers soon, your son is adorable. you will find support here and answers to questions. glad you found us.
06-13-2008, 11:31 PM
welcome to ck! you are definitely right, this is an amazing board. I think its cool you live in holland, my Opa is from there (Amsterdam). Ive never been there myself but i would love to go for a holiday!
06-16-2008, 11:20 AM
Thank you all for the nice words!
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Katie, I agree with you, more awareness would make things much easier at the start. I will write a thread about Cranio in a Portuguese babies forum. There is hardly any info about cranio in Portuguese and that made me feel lonely in the first days (not anymore after finding this forum). I know that Evelien (mv3kids - Stijn’s mother) is starting-up a cranio forum here in <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:City w:st="on"><st1:place w:st="on">Holland</st1:place></st1:City>.
Tricia, indeed we are so used to André’s head/face I can hardly imagine that it will change so much after surgery. Looking at Jack’s pictures that is pretty obvious, and by the way he is very cute :) About the accents of our names, don’t worry with that ;-)
Stephanie, what a coincidence that you were in Wageningen last year! Indeed in <st1:City w:st="on">Rotterdam</st1:City> there is a child hospital with a craniofacial team that performs 90% of all craniosynostosis surgeries in <st1:City w:st="on"><st1:place w:st="on">Holland</st1:place></st1:City> (around 70 cases each year), so they are very experienced!
06-16-2008, 11:39 AM
I just wanted to add my :welcome I'm glad you found us and hope we can give you the support you need! Andre is a doll adn we share a birthday...It was a good day to be born if you ask me :giggle
06-16-2008, 12:48 PM
Welcome to CK! I love it when we get people from different parts of the world on here! (Ok maybe just cuz I haven't been anywhere! LOL) I am from Canada. Andre is adorable!
06-16-2008, 06:29 PM
it's a great place we've got here...and it is nice to know others have gone and are going through this with you.
06-16-2008, 08:14 PM
Welcome to Craniokids, Goncalo. I think you'll find everyone on this site very supportive and a great life line, especially as you get closer to the surgery. My son, Nicholas, has (had) metopic cranio with Trigonocephaly. He was diagnosed (by us) when he was 5 weeks old and had his surgery at six months. I didn't find this site until a few weeks before his surgery and I was so grateful when I found it. Hearing everyone else's stories really helped reassure me that Nicholas would do well (which he did!). I hope our stories provide you the same kind of comfort and support. It will be a tough journey for your family, but Andre will do great. I can't wait to hear more about him, and to see more picures - he is such a cutie!
06-17-2008, 05:24 AM
Hi there! I am new here too and just wanted to welcome you! Isn't it great to have finally found support from people who are/have been going through the same thing. I look forward to getting to know you and following your journey with little Andre.
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