View Full Version : Howdy Y'all!
09-10-2007, 04:09 PM
We are in the process of adoption an 11 year old boy from Ethiopia. He was diagnosed in March with Craniosynostosis. I have searched online for stories of older children with the same and have come up empty. Any advice or stories to share?
09-10-2007, 04:17 PM
Welcome Renee! What type of Cranio does he have?? Congrats on the pending adoption!!!
09-10-2007, 04:32 PM
Congrats and welcome to the group, you will love it here!! Cant wait to here more about your little boy!
09-10-2007, 08:16 PM
I'm glad you've found us. I hope you can help. I know of one child who didn't have surgery until 4, almost 5. Do you know if the cranio is causing any negative effects- vision, ICP, etc? Do you happen to know which suture was fused prematurely?
09-10-2007, 09:17 PM
Welcome! I'm sorry I can't help with your question, but you will find plenty of support here! My daughter had her surgery in TX. We are from Oklahoma. What part of Texas are you from?
09-10-2007, 10:28 PM
WOW! Those were fast responses! Unfortunately there is almost no information at all. The medical report we received said only that because of misshapen head, x-rays were taken, and he was found to have Craniosynostosis. The Ethiopian doctor did not note any other concerns regarding eyesight, headaches, delays, etc. Two American doctors were given snapshots of him and just by the pictures were not worried enough to have us make an appointment when he visited us for a two week stay. In fact, they doubt that he even has it. After meeting him, he definitely has a misshapen head, but no other negative affects that we can tell. Lord willing, we should pick him up in November or December and I'll have him seen right away to find out more. There are some pictures on our blog if you'd like to give your opinions. His head is pretty tiny and he was actually not chosen as a baby because of his small head. I think he's as cute as a button and wish I had adopted him as a baby! Although....I would have been in high school and it probably would not have worked out. HAHA! In some pics you can see that his head rises to the right and a bump on the right side of his forehead.
I'm from College Station, Tx....about 3 hours south of Dallas. There are actually 21 older children from Ethiopia being adopted right now in our area. I'm SO glad we're not going through the process alone. It's scary! Henok is our first child, so we have no clue what we're doing. :)
09-10-2007, 11:06 PM
Oh...I watched your slide show and about got tears! It looks like the 2 weeks in July was an amazing time- for all of you. I didn't see anything really obvious about his head shape...there was one picture from the side where you could see some 'mis-shapeness' (is that a word :giggle).....but he looks really good! Good luck with getting him home quickly!
09-10-2007, 11:23 PM
Renee is my middle name.
Just wanted to tell you that it is rare in the US that you would come accross a child that is as old as yours that has cranio. However, I seen a segment on 20/20 once where a child was flew over from another country and he was 10 at the time. A lot of children from other countries go undiagnosed with this problem is what was said on 20/20.
Now, I am here to tell you that it does not matter the age of your child or whether or not this child is your biological child. Surgery is hard and knowing that your child will be dealing with this is not easy. It is likely that your child has some problems associated with this. I know I support you in you journey to help this precious one that deserves all your help and support.
09-11-2007, 12:15 AM
I'm so thankful that we knew before we made the decision to adopt him. This way there was no shock or grieving. Well....not yet anyway. I have to stop myself from thinking too much about the surgery. I don't know HOW y'all have been able to see your children through surgery. My nephew had tubes put in his ears at 2 years old and you would have thought he was having open heart surgery by all the family at the hospital. We cried and cried when the nurse took him back. When he was brought back to us he said he'd had an operation on his hand and pointed to the bandaid where the IV had been. HAHA It didn't phase him at all! I'll be glad to know a definite answer and to start preparing for the road ahead. I think the most difficult thing will be trying to explain to him about the surgery. He speaks very broken english like a toddler who is just learning. The adoption agency will provide a translator, but it's just different coming from a stranger than from mom and dad. Ah well, I'll just work on getting him home for now!
Y'all are awesome....thanks for the warm thoughts.
09-11-2007, 09:09 AM
Hey Renee!! I just looked at your blog, LOVE the picture of him jumping on the bed! Great shot!! Glad to hear things are going so well for you! He is sweet! I couldnt tell from the pictures that his head was misshapen any ... but i am not any expert and he had a hat on in a lot of the pictures. :-) Hope things continue to go your way!!
09-12-2007, 12:24 AM
HA! That's HIS favorite too. What a stinker! I was actually lectured this week by my grandmother on the evils of jumping on beds after she saw that picture. You can't please everyone I suppose. :)
I realized today that in most of the pics from the blog he's wearing a hat. Ah well. There isn't anything I can do until we bring him home anyway. Thanks for trying to look though!
09-12-2007, 12:41 AM
Renee, you are an angel!!! Henok is beautiful! To me his head looked okay, but I'm sure you'll probably have a CT scan done when everything is finalized and he comes HOME!! You all look so happy, it just melts my heart!!!:adore
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