Quintin's metopic story

[three.little.boys]

Hello- my name is Sadie, and I have been married to my wonderful husband, Anthony, for almost 9 years. Here is the story of our cranio journey so far:

We had 2 wonderful little boys, Ethan 4 and Gabe 2 1/2, and were almost out of DIAPERS. We had a summer garage sale and got rid of ALL THINGS BABY! I was scheduled to get my Mirena (5 year birth control implant) in a week so Anthony could take his time getting the big "V"......no more kidos for us!

Then came QUINTIN!!!!

I found out I was pregnant with Quintin after waiting to no avail for my monthly cycle to start (my gyno likes to put in the Mirena during your cycle so he can make sure you are not pregnant) HA HA JOKES ON ME!

Quintin Charles Decker was born April 17th, 2007 after a very easy delivery. However, the pregnancy was hard because Quintin was breech until 39 weeks and stuck firmly in my right rib. Luckily, Quintin flipped and delivery was induced to get him out quick before he flipped back breech! After two almost nine pound babies, I was SO thrilled when my little 7 lb 6 oz baby Quintin "slipped out like a greasy meatball!" (he was predicted to was 9-10 lbs!)

Here we are in the hospital...Me, Anthony, Quintin and my ObGyn (note my hubby flashing three fingers...thus baby boy #3)

http://i270.photobucket.com/albums/jj82/sadieadecker/delivery.jpg

We took our beautiful son home 2 days later and felt blessed that he was "normal!" However, I never felt quite right about the fact that I could not feel a "soft spot"....but the doctors at the hospital would have checked that out, right??? Surely they would have told me if there was a problem.

Quintin is such a happy and jovial baby. He started flashing huge smiles at 3.5 weeks old...we were amazed! He also started the loudest belly laugh at about 6 weeks old. Strangers would stop in amazement if he was laughing the the store! They would say, "He's really only 6 weeks old and laughing like that?" Here he is at 5 weeks old (left) and at 4 weeks old (right) with his brothers:

http://i270.photobucket.com/albums/jj82/sadieadecker/5weeksold.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/all3boys3mos.jpg

Then, Quintin spiked a fever of 101.4 F at 6 weeks old and was rushed into Children's Mercy Hospital here in Kansas City. After a spinal tap, urine analysis and several blood tests, it was confirmed that Quintin had meningitis....but we did not know if it was viral or bacterial (bacterial is the kind that can kill). After 2 days in the hospital we were informed that it was bacterial and that we would be there for at least 14 more days! He had antibiotics pumped into his IV in his head every 6 hrs around the clock. Here is my little trooper in the hospital:

http://i270.photobucket.com/albums/jj82/sadieadecker/hospital1.jpg http://i270.photobucket.com/albums/jj82/sadieadecker/hospital2.jpg

Luckily for us, it was discovered that the bacteria found in his blood was a "lab contaminant" and that Quintin had the lesser severe viral meningitis. After 4 days in the hospital, we were so happy to take our little guy home!!

After about 3-4 months I started to notice that bulges were developing over Quintin's ears, and that his head was flattening in the back. Also, his temples seem to be sinking in more and more. Here is a picture of him at 5 mos and 6 mos (note the bumps over his ears and shadowing of his temples...also his head was growing WIDER!):

http://i270.photobucket.com/albums/jj82/sadieadecker/5mosold-headchanging.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/6mosold-gettingwider.jpg

At his 6 month well baby check-up I asked Quintin's doctor about his head shape and lack of a soft spot. She assured me by saying, "I have seen worse...it's really not that bad. It's just from him sleeping on his back" and she followed up by saying, "his head circumference is getting larger, so I am not worried." I stated that, yes, his head was growing larger, but it was growing in the wrong directions. She did agree to send me a referral to a CFS just to make sure she was not missing something. My gut feeling was that something was wrong...my husband also secretly admitted to me one night that he, too, had felt that something was not "right" with Quintin. This was around Halloween 2007.

Also, a note....why didn't the specialists at the childrens hospital notice that something was wrong when he had meningitis? Quintin's metopic suture was already closed at birth and he had NO SOFT SPOT! Look back at the photo of him with the IV in his head....you know they had to be BLIND not to notice the lack of any soft spot while searching his head for a suitable vein for the IV insertion. UGGGGGG!

I did not make the CFS and CT Scan appointment until after Thanksgiving because I had been fooling myself that the pediatrician was right and that I had nothing to be worried about. But, I started "Googling" key words like "premature closure of the soft spot" and eventually found my way to CranioKids.org,as well as other craniosynostosis websites. It is on this very site that I confirmed that my worst fear was probably true...Quintin looked A LOT like the other metopic babies on this sight! My husband refused to consider that Quintin could have craniosynostosis, so for a month until Quitnin's Dec 11th CT Scan, I had only the comfort of the wonderful people on this site to rely on! I don't fault my husband...I'm sure it was very odd and unbelievable to him when I announced that I had "diagnosed" our son's condition on-line and that Quintin would need major skull surgery!! WACKO, I'm sure he thought!

Here are some photos of Quintin that I posted in late November here on CranioKids to get other parent's feedback on if he presented as metopic:


http://i270.photobucket.com/albums/jj82/sadieadecker/q1.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/q2.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/q3.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/q1st.jpg


Dec 11th confirmed our worst fears. Quintin has a closed metopic suture and a completely closed soft spot. He would need surgery. Anthony was in SHOCK....I was sad, but had already dealt with the emotions of knowing Quintin needed surgery. Here are his CT Scans:

http://i270.photobucket.com/albums/jj82/sadieadecker/quin2.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/quin7.jpg


The CFS we saw here in KANSAS CITY has a lot of practices for the surgery I knew were not state-of-the-art from all of my reading on this site and others. In short, he wanted to do an older type of surgery called a Barrel Stave Ostectomy (SP??) as well as have Quintin wear a helmet for 6 mos!! I head read that there were better procedures where children did not lose as much blood (cranio vault)....and that ANY time that a full cranio vault surgery was performed that the helmet is never used. Rather, the helmet is used more for strip procedures and endoscopic procedures on sagital sutures.

SO, we decided to go to the best doctor we could find. After taking a poll here on CranioKids of who is the best surgeon to see, we decided to look further into Dr. Fearon of Dallas. My sister is a PhD and professor of Genetics at the University of Texas in Austin, so I had her do some "checking" into this surgeon for me and his published papers. I was also lucky that a good friend of mine is married to a renowned heart surgeon doing heart transplants at UCLA. He also looked into Dr. Fearon for me and said that he would choose this surgeon for his own child! That is all we needed (Oh...and about 100 hrs of my own on-line research!)

I sent Dr. Fearon some photos of Quintin, his CT Scan and a brief history via e-mail in mid December...and I had a personal reply within 12 hours!! We decided to use Dr Fearon and have a surgery date scheduled for Feb 19th 2008.

Quintin will start Procrit injections once a week for three weeks prior to his surgery (1st injection is in about 2 weeks from now, Feb 29) to help boost his blood quality and platelet count in hopes that he will not need a blood transfusion.

Here is a photo timeline of the changes in Quintin's head shape. I wish I had top-of-the-head view photos...but I did not suspect there was a problem until 5 mos old....and who takes "top of head" shots of their normal baby, anyway! LOL!

http://i270.photobucket.com/albums/jj82/sadieadecker/quintin1-9mophotos.jpg

Anyway, sorry this was long...but I hope it is helpful to anyone who just found this site and is desperate, as I was, to see what others went through and how they learned of their child's diagnosis....as well as "signs to look for" in craniosynostosis. Remember, you are your child's best advocate....we always have to fight for our children!!!

Quintin may be our "surprise baby" and a lot of trouble, medically speaking...but he is SOOOOO worth it! I wouldn't trade him for anything.....not even a girl! LOL!!!!

_________________WooHooo!!! I can finally add SURGERY info!!_________________________________


Quintin had his surgery on Feb 19th, 2008 in Dallas with Dr. Fearon. After being sick with a bad cold, and having mucus sucked from his lungs 6 days before the surgery, Quintin was well enough to proceed. He lost a lot of blood during surgery, and needed some plasma to help his blood clot (our surgeon uses a "cell aver" that gives the babies back their own blood that was lost!!) Overall, it was a sucess!!!

NOTHING...I mean NOTHING can prepare you to have your child taken from your arms, or seeing them all swollen up and in pain after surgery! Everyone says this, but it is so very true that you will never be prepared to see YOUR child in this condition no matter how many "after" surgery photos you see.



Click here for a 5 min. montage video of Quintin's surgery and recovery:
http://www.onetruemedia.com/shared?p=555af647a7e7597e52c9a0&skin_id=701&utm_source=otm&utm_medium=text_url (http://www.onetruemedia.com/shared?p=555af647a7e7597e52c9a0&skin_id=701&utm_source=otm&utm_medium=text_url)

Here are his surgery pics;


Quintin in the hotel bath tub the night before surgery

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0021.jpg

In the pediatric play room passing time before start of surgery

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0028.jpg

In the surgical waiting room right before thay took Q away for surgery....

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0032.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0030.jpg

As we saw Quintin for the first time right after surgery...and a shot of his incision:

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0034.jpg
http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0043.jpg

A couple of hours post-op (sorry so big..will not resize)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0037.jpg


Early the next morning (20 hrs post-op)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0039.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0040.jpg

Holding Quintin for the first time and his first bottle;

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0041.jpg

48 hrs post-op and a view of the PICU room;

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0050.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0051.jpg

60 hrs post-op riding in the wagon on the pediatric floor...a favorite fro Quintin!

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0056.jpg

With mommy in the hotel trying to get some sleep. Also, Aunt Sara cuddling with Quintin in the hotel 72 hrs post-op (so mommy can try to pack!)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0072.jpg
http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0075.jpg

On the airplane ride home day 3 after surgery;

http://i270.photobucket.com/albums/jj82/sadieadecker/plane.jpg

Back home with my bros! Afternoon of day 3;

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0092.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/couch1.jpg

4 days post-op;

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0126.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0121-1.jpg

5 days post-op;

http://i270.photobucket.com/albums/jj82/sadieadecker/5.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/7.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/3.jpg

6 days post-op;

http://i270.photobucket.com/albums/jj82/sadieadecker/1.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/4.jpg
http://i270.photobucket.com/albums/jj82/sadieadecker/2.jpg

8 days post-op;

http://i270.photobucket.com/albums/jj82/sadieadecker/small.jpg

http://i270.photobucket.com/albums/jj82/sadieadecker/IMGP0011.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMGP0036.jpg

Here is a picture from his 6 week post-op check up with Dr. Fearon:

http://i270.photobucket.com/albums/jj82/sadieadecker/IMGP0419-1.jpg





http://i270.photobucket.com/albums/jj82/sadieadecker/IMGP1087.jpg

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Quintin is 6 mos post-op as of Sept 19th!!! I was posting some before and after pics of him as a response to another thread, so I thought I'd post them here to share how far he's come!

Thanks....

(all photos on the left are "before's" and on the right are "afters") I DID resize...but my screen still shows them HUGE! Whats up with this guys????


MY forehead is not all bumpy and wavy any more!!!

http://i270.photobucket.com/albums/jj82/sadieadecker/6mosold-gettingwider.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMGP1555.jpg




And my head is more round
http://i270.photobucket.com/albums/jj82/sadieadecker/q2.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMGP1562.jpg


My silly ridge is GONE!!

http://i270.photobucket.com/albums/jj82/sadieadecker/q1.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMGP1559.jpg

My temples are not "pinched" anymore!!

http://i270.photobucket.com/albums/jj82/sadieadecker/5mosold-headchanging.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMGP1558.jpg

And, my head is nice and round....not flat like before!!!

http://i270.photobucket.com/albums/jj82/sadieadecker/FLATHEAD.jpghttp://i270.photobucket.com/albums/jj82/sadieadecker/IMGP1422-1.jpg

BUT..the saga continues!!! I have learned that one can't shut the door on craniosynostosis on the way out of surgery. It appears it is a lifelong worry and concern for us parents! I am posting some pictures of Quintin that show some "bone loss" on his forehead. We will be taking Quintin back down to Dallas on October 3rd to make sure that no action is needed! (PLEASE...pray that no action is needed!)

http://i270.photobucket.com/albums/jj82/sadieadecker/NEWWORRIES.jpg

UPDATE!!!!!

NO ACTIO NEEDED!! WooHoo!!!! Quintin's bone grafts did disolve, but they will fill back in by themselves!!! Woo HOOOOO!

:yipeeUPDATE: Almost 3 years post-op!:yipee

Quintin got glasses last April when he turned 3. Turns out he has pretty bad astigmatism in both eyes and needed corrective glasses. I was concerned this had something to do with cranio, but the drs have assured me that it is not associated. Poor little guy could only see large objects and everything else was blury. He LOVES his glasses and keeps very good care of them!

We were a bit worried about a year ago about Q's speech....or lack there of. I was hoping his speech delay was because he was a 3rd child. Quintin has made leaps and bounds in speech and has overcome any deficit. So, if your little one is doing the same thing, give them some time (especially is they have older siblings that will "talk" for them!)

Q seems to be on track all around...he can write several letters (ESPECIALLY "Q for Quinny!" and counts to 15. He will be 4 in April. I am only writing this to help any other mom or dad who may be wondering what their cranio child's outlook is for the future....he is 100% normal and no one ever knows he had a CVR/FOA. These kiddos are really amazing!!

For those of you that I know well, let me say I miss all of my dear friends and enjoy keeping track of you on FB. I have stuck to my goal of losing 75 lbs after the surgery, and keep working every day to keep it off. The surgery stressed me out so much that I let myself go! Not anymore..... :-) I encourage others to do the same after things die down after surgery....invest some time in yourself because it has been all about cranio for sooo long that you need to do something for yourself! (ok, I'll get off my soap box now!)

Anyway, here are some recent pics of Q

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_2069.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_2069.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_1999.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_1999.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_1985.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_1985.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0322.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_0322.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0320.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_0320.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_2071.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_2071.jpg)

[mrs j]

Sadie, thankyou so much for sharing your story, that pic of Quintin in hospital with the ivs in his head brought me to tears, reminds me of my daughter, i have almost the exact same pic of her when she was 6wks in icu due to her kidney problems anyway, your a great mum, its such a struggle of a journey for all of us, and Quintin and Bradley will do just great, huh listen to me, im feeling quite positive this morning.xxx

[xl1200c]

Sadie,

So glad you are here. Thank you so much for sharing. I love all the pictures that really show the progress. Please don't hesitate to ask if you have any questions in these coming weeks.

[Janet]

Sadie...Great story!!! I love "surprise" babies, Fiona was like that, I didn't think I was going to get pregnant then Fiona came a long. (my metopic miracle) :cheer Can't wait to hear the rest.

[jenniferann75]

Sadie, thank you for sharing your story. Quintin is just as precious as it gets. You made me laugh with "I wouldn't trade him for anything.....not even a girl! LOL!!!!" I'm a mom of 5 boys, so I can totally relate. :wink

[EmmaLacey]

What a wonderful documentation of your journey thus far. I remember first seeing cute little Quintin while in the hospital myself as Emma was recovering from surgery. I remember looking at those first photos and thinking, yes this baby has metopic. Why don't these doctors see it when all us cranio moms can?!? Sounds like you have done a great job with your research and you are getting the best care for Quintin. The next few weeks will be a hard wait, but you will get through it and it will be all over before you know it. I can't believe that Emma (and David too) are almost 1 month post-op already.

Thank you for posting your story and I look forward to hearing the rest. Quintin is such a sweet little guy. Big hugs from Connecticut!

[boonseamus]

You must have been so scared when you thought he had mennigitis. No wonder your husband didn't want to believe he had cranio after the shock and scare of the first hospital stay. I think we all know the frustration of the doctors who never noticed something was obviously wrong with his head! All you boys are precious and I love your photos! From what you wrote it makes it sound like the helmet therapy with endoscopic surgery is only an option for sagital cranio but it is also an option for metopics. Our son had the endo for his metopic in October and is now in a helmet. Although I was concerned that it might not correct his eye issues, so far his results are amazing.
The coming weeks will be so overwhelming and frightening with a thousand WHAT IFS pouring through your brain, but just know that each passing day is one day closer to his being better. You will be thrilled with the results.

[Wyatt's Mom]

Wow, thank you so much for sharing your story. Quintin is such a cutie!! I'll definately be praying for his surgery and praying that he has a quick recovery. By the way, in your story you have him being born in 2008! Oops!!!! :o)
He is just a few days younger than my Wyatt!!!
Thanks again, stories like yours and other ones definately help us "new" cranio moms feel like we are doing the right thing. :o)

[Momof2Boys]

Thank you for sharing your story. I will be thinking of you both during his surgery and wish for a quick recovery.

[three.little.boys]

We have also added a website to get updates on Quintin during his surgery:
http://www.caringbridge.org/visit/babyquintin (http://www.caringbridge.org/visit/babyquintin)

[three.little.boys]

I have added surgery photos to this thread, plus added some tips I thought might be helpful to anyone facing surgery! Thanks for looking!

[EmmaLacey]

Thank you for the update Sadie. I'm sure your story and tips will be a huge help to the Newbies!! Seeing those pictures of Quintin bring a tear to my eye!

[three.little.boys]

OK...I admit it...I'm selfish. I just wanted Quintin's story back on the first page!!

[Janet]

That's OK Sadie.....I feel the same sometimes....I just added a 8 month post op pic to Fiona's story.

[Janet]

Sadie.....I read your story again this morning....I can't believe everything that little Q has gone through....he's such a cutie and has a WONDERFUL Momma!!!

[three.little.boys]

Thanks Janet.....I think YOU have a pretty amazing story (that seems to be ongoing!) You are a VEY strong mom and WOMAN!

[three.little.boys]

I have updated photos and added recent pics of his new noggin!

[marisajo]

Sadie...just read through all this again, and it of course brought me to tears once again. One thing I think is so cool is his incision and how it doesn't come down so low. With Zachary, the incision is most noticeable right above the ears, so how cool that Quintin doesn't even have an incision there to ever worry about! Still hoping Dr. F. can work some magic on those spots in Sept so they are less noticeable.

[HuskerMommy]

So far our story reads exactly like yours. My son looks a lot like the pictures of your son. He is 5 months old now and by x-ray the doctor said his metopic and both coronal sutures were closed. She is sending us to a specialist in about two weeks and in late August, we will meet my son's "team." I felt such peace reading your son's story and seeing him so happy after the surgery. Thank you so much for posting your story, it helped me a lot!

[three.little.boys]

So far our story reads exactly like yours. My son looks a lot like the pictures of your son. He is 5 months old now and by x-ray the doctor said his metopic and both coronal sutures were closed. She is sending us to a specialist in about two weeks and in late August, we will meet my son's "team." I felt such peace reading your son's story and seeing him so happy after the surgery. Thank you so much for posting your story, it helped me a lot!


Please feel free to PM me....if you can identlfy with my story then I'd love to help you out!! Sorry you are taking this cranio journey...but it will be OK!! Hang in there!!

[three.little.boys]

I have added the new pics of Quintin's forehead and the "mystery missing bone"....i'll update after our trip to Dallas on OCt 3-4.

[three.little.boys]

Quintin diodn't like being on the THIRD page...so we're buming him up!!

[charliesmummy]

:giggle

[*jules*]

Hi Sadie, I just checked out Quintins photos again, I dont think I saw the 6mo post op...anyway, he looks great. I cant wait to see the difference surgery makes for Alex's headshape. Was Q also very flat in the back? Alex's is a huge concern for me. Its so flat I cant see it fixing itself post op. Is the flatness made worse by the trig or is it all just positional? I hope Alex's will round out, but keep thinking we may have to end up seeking treatment somehow. Ok, now Im babbling. Im trying to focus on the trig and surgery, but the other wont leave my mind.

[three.little.boys]

julie... Quintin's head was flat in the back. But, not as flat as Alex's appears to be. I am sure Dr. Fearon will address a plan of action. Remember...baby steps...one problem at a time!!! You are doing great!!! Hang in there!!

I am painting a mural at the Royals stadium right now, so I have been so busy and not here on CK. However, please call me whenever you need to talk/vent!!! Send me a PM if you need my #'s again.

[avah'smom]

hi my name is sarah and im hoping you can help me. my daughter's symptoms are almost identical to your sons. her metatopic suture is closed and her soft spot is closed. we just went to see a neurosurgeon and he said she didnt need surgery?? he said her head look semetrical and the reason its flat on the back is because she sleeps on her back. my daughter is 5 months old and she doesent have the traditional triangle forehead but she does have a flatness to the back of her head and the sides of her head is bulging. so did your neurosurgeon reccomend surgery right away?

[*jules*]

hi my name is sarah and im hoping you can help me. my daughter's symptoms are almost identical to your sons. her metatopic suture is closed and her soft spot is closed. we just went to see a neurosurgeon and he said she didnt need surgery?? he said her head look semetrical and the reason its flat on the back is because she sleeps on her back. my daughter is 5 months old and she doesent have the traditional triangle forehead but she does have a flatness to the back of her head and the sides of her head is bulging. so did your neurosurgeon reccomend surgery right away?

Hi Sarah, I know Sadie isn't on here as often as we would like her to be, lol, and I didn't want you to be waiting for answers.

My son is almost 8mos old and has a head shaped very similar to Sadie's Quintin. My son has trigonocephaly (triangular shaped forehead) caused by metopic synostosis. He also has very bad position plagio from sleeping on his back. He is having surgery to correct the trig, but I am told that the back of his head should round out post-op and with time. I am starting to see small changes now that he rolls over and prefers sleeping on his side. I have photos in my profile albums if you're interested.

If your daughter doesn't have the trig, they dont do surgery for just the positional (at least not that I know of). Have you looked into helmet therapy? We were actually seeing a doctor about a helmet when we were told about Alex's cranio and that surgery was needed for that. Since then, the positional stuff has kind of taken a backseat.

I would love to see some pics of your little girl...I haven't been to your profile page, but will check it out as soon as I'm done here. I hope I was able to help you a little...if I can help answer anything else, please let me know :)

[three.little.boys]

thanks Julie...well said!

[ima]

This was one of the pages i came across when googling... HA! 4 days ago i "diagnosed" our little boy. Your page helped me do it. Thank you so much for sharing your story. You have a beautiful son. I cant thank you enough!

[three.little.boys]

Thank you ima..... I need to come on here more often!! Quintin is approaching his 3 year cranioversary (feb 19th) and i wanted to give an update:

Quintin got glasses last April when he turned 3. Turns out he has pretty bad astigmatism in both eyes and needed corrective glasses. I was concerned this had something to do with cranio, but the drs have assured me that it is not associated. Poor little guy could only see large objects and everything else was blury. He LOVES his glasses and keeps very good care of them!

We were a bit worried about a year ago about Q's speech....or lack there of. I was hoping his speech delay was because he was a 3rd child. Quintin has made leaps and bounds in speech and has overcome any deficit. So, if your little one is doing the same thing, give them some time (especially is they have older siblings that will "talk" for them!)

Q seems to be on track all around...he can write several letters (ESPECIALLY "Q for Quinny!" and counts to 15. He will be 4 in April. I am only writing this to help any other mom or dad who may be wondering what their cranio child's outlook is for the future....he is 100% normal and no one ever knows he had a CVR/FOA. These kiddos are really amazing!!

For those of you that I know well, let me say I miss all of my dear friends and enjoy keeping track of you on FB. I have stuck to my goal of losing 75 lbs after the surgery, and keep working every day to keep it off. The surgery stressed me out so much that I let myself go! Not anymore..... :-) I encourage others to do the same after things die down after surgery....invest some time in yourself because it has been all about cranio for sooo long that you need to do something for yourself! (ok, I'll get off my soap box now!)

Anyway, here are some recent pics of Q

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_2069.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_2069.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_1999.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_1999.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_1985.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_1985.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0322.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_0322.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_0320.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_0320.jpg)

http://i270.photobucket.com/albums/jj82/sadieadecker/IMG_2071.jpg (http://s270.photobucket.com/albums/jj82/sadieadecker/?action=view&current=IMG_2071.jpg)

[Mindy]

Sadie!!! Good to "see" you here! You inspire me to start getting healthier! You look amazing! I was just talking to another CK friend about your cakes that you posted on fb. There is a thread for homemade cakes. You have to put your shower cake pic up.

Quintin looks so great! I can't believe it's almost 3 years. So glad you checked in here!!! :hugg

[Bensstory]

Thank you for your story! I just wanted to say you have a beautiful family!

[tracy_girl05]

o wow Sadie Q looks great! I love the glasses!Hailey is sporting a pair as well. We def need to plan a race together girl and have our meet up! Im game whenever you are!

[2girlsmom]

thank you for sharing your story. I know I worry too much but I have started seeing strange shapes on my dd's head and a ridge in the center of her forehead. I keep telling myself that I just worry too much but then after seeing so many babies on this board who have photos that look just like my dd I feel I am on to something and I should trust my mommy sense. I hope that it is just a a ridge and nothing more but I am starting to notice other areas looking a little off as well. We have a 6 mo check up this week. Hope the doctor takes me serious and hears my concerns. Thanks again for posting your story. Q is adorable!!!!! It is amazing to see his before and after photos. A beautiful baby boy with lots of smiles! :)