View Full Version : New from Michigan
01-12-2008, 08:38 PM
Hi, my name is Jennifer and my daughter Jordan was just diagnosed with her lambdoid sucture closed. We are scheduled to have surgery Feb 27, 2008. I am very nervous and scared about the surgery.
i just found cranio kids by accident and I am so happy to have found such a great web site.
01-12-2008, 08:46 PM
Welcome, Jennifer. Sorry about Jordan's diagnosis. It's really tough right after you find out. It's hard to imagine your little baby having to have such an invasive surgery! I feel like I am "prepared" but I know I will break down when they take Quintin from me and into the surgical suite!
My son, Quintin, is metopic, so I don't know much about the lambdoid suture. We are having surgery in Dallas on Feb 19th. Quintin will be 10 mos old. How old is Jordan? Do you have a surgery date yet? Please feel free to ask anyone on here questions or just vent. We've all been mentally right where you are at. This site is full of parents who are on the same path as you. Some just found out, some are waiting for surgery, some just have had surgery ("on the other side" as we like to call it around here!)and some are months and years post-op. There really is a wide range of experience you can draw on.
Hang in there and just take in as much info as you can. Reading the "our stories" section of this site really helped me when I was new here.
Welcome, once again!
01-12-2008, 08:53 PM
Jordan is 19 months now and will be 21 months at time of surgery. We are having surgery Feb 27, 2008 at the University of Michigan Hospital. I am so scared and nervous for her. I am so thankful that I found this site.
Are you from Texas or are you just having surgery there. I am orginally from Tx and my family is still there in Georgetown TX and Lampasas TX.
01-12-2008, 08:58 PM
Welcome to the site! My daughter Azia is 3 months post-op. She was metopic. My inlaws are in Mesquite, TX :o) We are in BC, Canada!
01-12-2008, 09:04 PM
We are from Kansas City. We were not happy with our surgical team options here in Kansas City, so after looking around, we really liked the Dallas group called The Craniofacial Center lead by Dr. Fearon. Several of the other kiddos on this site are using him, or have used him in the past. We are flying down there in the 17th and will do al the pre-op appts on Monday the 18th, then surgery at 7:30 am on Tuesday the 19th.
Just curious...have you had second opinions?? I am sure your surgical team is excellent. I know that several of us were told different a diagnosis from different CFS, including myself. The first CFS we saw here in KC told me Quintin was both metopic and had partial bicoronal sutures closed. The 2nd opinion I got (Dr. Fearon, the CFS that will do the surgery) thought that the first CFS was wacko since he saw no coronal sutures closure. I trust the 2nd CFS opinion because he is viewed as one of the best and does ONLY pediatric craniofacial surgeries (about 80 craniosynostosis surgeries a year), compaired with the first CFS we saw, who is mostly a boob-job and face lift man and does only 1 pediatric craniofacial surgery per month!!
It is always good to get a second opinion. Perhaps you have already done so! I am sure you are doing an excellent job! How was Jordan diagnosed if I may ask??? Did her pedi. figure it out, or did you???
01-14-2008, 12:58 PM
Welcome Jennifer. Glad you found this site! We are from Farmington, MO and we will travel to St. Louis Childrens Hospital to have Libby's surgery. She is saggital.
01-14-2008, 01:10 PM
Welcome to Cranio Kids Jennifer. I remember how scared and nervous I was before Fiona's surgery, it's heartbreaking...but Fiona did great. These kids bounce back so fast. Jordan will do great too. Once again Welcome!!!
01-14-2008, 01:12 PM
Welcome to the site. This site has been wonderful through my journey! The waiting is so hard, but you'll make it and your little one will do so well!
01-14-2008, 01:17 PM
Welcome to craniokids! We are from Michigan! My daughter is bi-coronal. She had a CVR done at children's in detroit. Her cranio surgeon was Dr Rozzelle, with Dr Sood as the nuerosurgeon. She did great there, and the hospital took excellent care of her! Where do you plan on having surgery?
01-14-2008, 01:50 PM
Welcome to this fabulous site, my boy is metopic, im sure you will get lots of help and advice here, the mums and dads of course, on here have been a tower of strength for me.xx
01-14-2008, 02:02 PM
Welcome to the site Jennifer. My daughter Emma recently had surgery for sagittal/metopic craniosynostosis. Her surgery was preformed in Hartford, Connecticut about 1 month ago. She is doing wonderful. Glad you found us and even though it is a very scary time you will be able to "prepare" yourself by reading the stories on this site and seeing all the wonderful babies that have had surgery and are doing great! Your daughter will be okay! Please ask us any questions that you have.
01-14-2008, 02:28 PM
welcome, this is my first post. We are in Memphis, TN. My daughter had lambdoid. Surgerical repair at 8 mo old. She is almost 13mo old now. feel free to contact me. Good Luck.
01-14-2008, 03:33 PM
Welcome Jennifer. We're from Michigan too. Just this morning, I got the date for my son's sagittal surgery at Mott Children's at U of M. It'll be March 12.
I understand your fears. I'm scared as well, but relieved to finally have a date, instead of just wondering when it will be...
01-14-2008, 03:54 PM
Tricia, glad you have a date. Any more info on the procedure itself?
01-14-2008, 05:06 PM
We are also from MI. My son is metopic. He is scheduled for surgery at Detroit Children's but I am fighting to have the surgery at U of M. Drs Buchman and Muaszko seem great. They have a great reputation. My friend is a pediatric ER Dr at U of M. She has worked at Detroit Children's, U of M, and Cinci, OH. She said if it were her kids, she would want Dr. Buchman at U of M to do the surgery. Hopefully that helps to put your mind at ease a little bit.
I don't know much about lambdoid, but the Drs are top in their firelds. Where are you in MI? We are in Clinton Twp. This site and CAPPSKIDS have really helped me. We found out about our son 2 1/2 months ago. He is scheduled for surgery at U of M for 6/25. Hopefully the insurance company doesn't screw things up for us now.
01-14-2008, 05:09 PM
I just wanted to say that I'm in New Haven.. not too far away!
01-14-2008, 06:33 PM
Welcome we are also from Michigan. We live in Kalkaska(its near Traverse City). I have to sagittal boys. we had both their surgerys done at Devos childrens Hosptial in Grand Rapids. But I have heard great things about UofM. Good Luck! ***Holly***
01-14-2008, 07:20 PM
Welcome to the site. I to was looking up info and found this site. It's great how everyone support you here when you have to face surgery. Keep posting and if you have anything to ask feel free.
01-14-2008, 07:36 PM
Somehow I knew "sleepytown" MI meant some small town north of here. LOL
I actualy guessed Capac, not too far off.
01-15-2008, 01:25 AM
Hi Jennifer, welcome to the site. Sorry to hear about Jordan's diagnosis. I know how you must be feeling right now - it came as a shock when my husband and I figured out our son had metopic cranio (we, as so many others have had to do, self diagnosed our son). Finding this site has been such a great comfort to me. I was so scared about the surgery, as I'm sure you are, but being able to hear from so many others whose children went through the same thing and bounced back so quickly really helped me cope. My son's surgery was just last week, and he is doing great. I'm sure Jordan will bounce back from her surgery just as quickly. Best of luck to you. Please keep us posted.
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