Tuesday, March 18, 2008

Sagittal Synostosis - :(

So, it's official. Nathanael does have a slight case of sagittal synostosis and will have to have surgery on his head to take out the part of his skull that is fused together too early to lessen the pressure on his head. It will probably occur within the next month. I'll post more later....keep us in your prayers.

More pics/info on craniosynosis /craniosynostosis

UPDATE: Surgery Date: April 14th (which is a bummer because I'm off from April 5-13. Ugh!) Oh well...now I just have to find a good sub and a good project to keep them learning and occupied for a week while I'm gone!

Link to the post surgery pictures/blog entry
Link to the 1 month after surgery pictures/blog entry

11 comments:

Trimbles said...

Im sorry to hear that! We will keep you in our prayers for sure :)

Carolyn said...

Let me know if there is anything that I can do to help! Even if it is just sitting by your side, let me know...

Allison said...

I'm just trying to find enough onesie's that button/snap up the front for him to wear until his head heals (can't pull things over his head). Any ideas? I checked my 6-9 mos and even 9-12 and only found 4! I have been looking online and haven't found many--mostly the ones that snap on the bottom!

Christina Marie said...

Awww so sorry to hear your son has to have surgery. Just returning your comment :) I don't have any good advice but here are some thoughts - Things aren't as bad as they look. Be prepared to be very emotional when you first see him come out of surgery. Even when my 5 year old had his tonsils removed 6 months ago, I was a basketcase seeing him come out of anesthesia, and that's a really minor surgery. You will be SHOCKED at how quickly your son will be back to his normal smiley self - just a couple days! Get help from family and be thankful that he is in the hands of AMAZING surgeons!

Update me :)

Mel said...

we just found out that our son will be going through the same thing. I am a wreck. Any advice to help us get through?

Allison said...

Mel, hopefully you check back since I don't have a way to contact you...

The biggest thing is that he (if he's young) won't know what's going on really (I think that's a good thing) and for my little guy, the first 24 hours were rough on him but after that (even though I was still a bit stressed) he was happy, giggling, standing up etc!

It is hard but I would do it over again in a heartbeat to make sure that he continues to be happy and healthy.

-Allison

p.s. if you have ANY more questions feel free to email me at marcroftfam@verizon.net

Reed Altman said...

I'm sorry if this is a strange question from a stranger but I went through this surgery when i was four weeks old because of how severe it was but do you know anywhere I can get information on the possible causes of this or anything of that sort?

Allison said...

Reed, all of the info I have is on the left of the page at the top. We saw a neurosurgeon, plastic surgeon and a geneticist but they never said that it was caused by anything specific or that I had any specific chance of my other kids having it. Check the links out on the top. Sorry that I don't know more!

Serene is my name, not my life! said...

I just randomly found you through a comment and noticed this post.

My baby girl had sagittal craniostynostosis as well. We are just comming up on her one-year post suregy mark. Crazy!

Anonymous said...

Hello, My name is Marie. My son had this surgery as well. The only difference is, my peditrician didn't catch his condition early, even though I kept asking questions at every well check & sick visit. Needless to say, I now have a different peditrician for my boys. My youngest son, Michael, had his surgery on Sept. 30, 2005. He was 15 1/2 months old. He had complications from his surgery & was in the hospital longer than most. To be honest, we almost lost him. The doctors won't tell me exactly what happened & I'm still to nervous, even all these years later, to get his medical report. Needless to say, I'm now commenting to see if you have heard of anyone else who has had this surgery & had any complications? Michael is now in the 2nd grade. I believe because of his complications during surgery, which I should probably say was brain swelling. First describe to us by the doctors as "like a stroke". Is now having trouble with his school & grades. He is 7 years old now, & to look at him, except when he gets his hair cut short, you cant tell he had this condition. Long story short I guess, I'm trying to look up more on this condition & his complications & wondering if any one else had difficulties during surgery?? Thank you!!

Mrs. Gant said...

Hello, not really sure where to start. My 12 week old granddaughter has been diagnosed with sagittal synostosis. In a week she will be undergoing the surgery to correct this. My daughter is so emotional & terrified. As this is her 1st child & is still adjusting to parenthood. I try to be calm as not to add to her worries. What would any of you suggest is the best way to deal with recovery? Do you have any tips or advice you think may be useful? Are there support groups for parents/family of a child with sagittal synostosis?

Any information would be greatly appreciated.

Thanks for sharing your story. Glad your son is doing great!

~Mrs. Gant

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