View Full Version : New from Windsor
11-13-2007, 04:22 PM
Hello everyone, Our daughter Devon was diagnosed with Sagital Craniosynostosis in Sept. 07. We are currently waiting for a surgery date. She had her first CT Scan Oct 26 and we met with the plastic surgeon Nov 2. She now has to see the pediatric neurosurgeon on the 20. She is already 5 months old and they are looking into having her surgery no later than the first week of Jan. Our anxiety levels are so high. On one hand we don't want any of this to happen and then on the other we want it to happen now, so Devon does not expierence any delays because of this. We are afraid of all of the unknowns and welcome any stories or advice you would like to share with us.
11-13-2007, 04:43 PM
Hi there, welcome to the forum. Our son Logan had surgery for saggital 4 months ago and he is doing wonderfully well. It is a hard time waiting for the surgery date - I know that is all you think about until they actually can tell you the date. It is a scary and anxious time, but once little Devon has had the surgery it is a whole new world! Don't get too worried about her experiencing any delays - there are alot of adults in the world that haven't had surgery for saggital and other cranios for that matter that don't have any problems at all - so try not to worry too much about that.
There are so many wonderful people on here, and you can find everything you need to know before and after the surgery. No question is ever too little to answer! Good Luck and welcome to the forum xx.
11-13-2007, 04:51 PM
Welcome to Cranio Kids....are you from Windsor, Ontario??
This is a stressful time, but if you read the stories you'll know that they bounce back so fast.
11-13-2007, 06:13 PM
I'm so glad you decided to join CranioKids! Welcome. The support of this group is amazing. The waiting is difficult but January will be here before you know it.
11-13-2007, 07:49 PM
Hello and welcome to Cranio Kids! My son Andrew had surgery for sagittal cranio in July. He was 4 1/2 months old. When he was born, my husband and I questioned his head shape. We were told time and time again that it was because he was breech. I finally did my own research online and presented the info I found to his pediatrician. She ordered an immediate skull x-ray and found that the sagittal suture was indeed fused. We were then referred to a pediatric neurosurgeon who ordered a CT scan and a week later he was in surgery. Anyway, that's the short story. If you have any questions about anything, don't hesitate to ask. This is a wonderful and supportive board with a wealth of information.
11-13-2007, 08:11 PM
Welcome for sure!! There are lots of us Moms on here with beautiful little "peanut heads" who have had some sort of cranio, or more than one! :adore Hope we can answer some of your questions and help you through everything. I know this site really helped us! We're now 2 years post-Op and doing great!!
11-14-2007, 01:35 AM
Hi and welcome. Our son Bailey had surgery for sagittal in June and is now 8 months, very cheeky and experiencing no delays. I don't think these babies have anymore chance of being delayed than any other baby but that is just my opinion. All the sagittal and cranio babies I know are bright, happy, contented and not experiencing any delays.
So try not to worry too much and just remember we all know what you are going through so any time you need help come online. I just wish every day that I had found this site pre-op. Enjoy Christmas and keep us all posted.
11-14-2007, 04:46 AM
Welcome to Cranio Kids this is a fantastic site. My son had surgery for Metopic 9 weeks ago & he is doing fantastic. Please feel free to ask as many questions as you like as there's always someone to help xx
11-14-2007, 08:51 AM
Welcome! This site is so fantastic! My son was diagnosed with Metopic cranio at birth and we waited 3 long months for him to be big enough to sustain the surgery. Logan had his surgery last week and is doing fanstastic. I was amazed at how quickly they recover (I'd probably still be on morphine!). The waiting is the hardest part and I can honestly say that I know how you feel. These ladies were a great source of support to me and hopefully we can be to you too! Welcome again!
11-14-2007, 09:03 AM
Welcome to this brilliant site, my son was diagnosed with metopic, and hopefully he will have surgery soon after the new year,waiting is just awful, but these mums have been brilliant with me and given me some quite excellent advice and info,good luck and keep us posted on any progress. xxx
Melissa im so glad Logan is still doing well. xx
12-01-2007, 11:47 PM
Thank you all so much, sorry it took to long to post again but it has been crazy around her. All our London trips and Devon was baptized on Nov 20. She looked beautiful by the way. We have had our neurosurgeon appointment cancelled three times. We now have our appointment Dec 7, but no surgery booked yet. Jan is coming fast and I am worried they will not get her in before the plastic surgeons "best before" date. We really want this over and want our little angel to be as perfect after as she is now. This is so hard on the family, even the extended family. Grandma has a bad heart and she is always worried. I will say that this has really brought our family together. Well thanks again everyone and I look forward to talking to all of you again.:bouquet :canada
12-02-2007, 04:07 PM
As everyone has said this site is wonderful. I am fairly new myself....my daughter is 6 months old and recently diagnosed with sagittal. Luckily for us we didn't have to wait so long for a surgery date. My daughter didn't even have to have a CT scan. We had our appointment with a Craniofacial team 1 week after her 6 month well check visit and were booked for a surgery a few days after that. Our surgery date is Dec 13th. By the time my daughter has her surgery she will be 7 months and 3 days old and it will only be 5 weeks since the appoinment that started all of this. If anything, I am thankful that it will all be over with soon and we didn't have to wait months like some of the other families. Anyways, you can read the whole story in the "our stories" forum or click on the link in my signature. Welcome and good luck with your daughter Devon. She is really cute!!
12-02-2007, 07:47 PM
Devon is such a cutie!!! I hope you actually get to see a neurosurgeon soon. Are you having the surgery done in Windsor?
12-02-2007, 11:00 PM
Thanks for the update. I hope you get your appointment soon. Keep calling them. We were first referred to MacMaster in Hamilton but waited so long that we had our family doctor refer us to Sick Kids and we were seen very quickly. Please keep us updated.
12-03-2007, 11:49 PM
We are having our surgery in London. When we go to London this Friday, I will be asking if Devon's surgery will be done before the plastic surgeon's projected date, if not then we will be looking into Toronto. Oh and of course I agree Devon is a beautiful little girl. I also have two others daughters Brandy 19, Jessica 13.
12-04-2007, 07:53 AM
I can't say enough about Sick Kids hospital. They are absolutly wonderful. There are a few Mom's on her who have dealt with them.
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