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Old Oct 17th, 2011, 14:34 PM   1
bobekah
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Oculodentodigital dysplasia


Most of you have probably never heard of it but here goes my babies story...

Caydence Eve was born at 857 am...just 2 minutes after her fraternal twin sister Alyssa Mae. Alyssa was and is perfectly healthy. Caydence on the other hand...

Caydence ended up being put into an incubator and taken to the NICU. She was 3lbs 5oz even though I carried to full term! It was in another section of the hospital so I had to wait a couple of hours to go see her. Her sister wasnt allowed in the NICU so visits were hard...

First thing I noticed is that her ring finger and pinkie fingers were fused together on both hands. The fingers are all there just stuck together. So the doctors in the NICU wanted a genetics team from Seattles Childrens Hospital to see her. I had to wait about a week for them to fly up to Alaska. The genetics took all the normal family heritage questions...there is nothing like this in ether family as far as we know. Well the doctors diagnosed her with the Oculodentodigital Dysplasia. That day was so hard. I remember going home and google-ing everything I could about it. I added a group to my facebook as well. The odds of her Dysplasia is 1 in 40 in the USA and 1 in 1000 in the entire World! The Oculo part of the dyplasia is her eyes...a probability of vision loss. Her eyes are also big and closer together. The dento part is dental...she ALREADY started to get what looks like teeth in. A month ago I had another Genetics doctor over look her and asked him about the teeth growing in and he said its more than likely abscess or a cyst type of growth. Not her teeth yet. With the dysplasia she is suppose to have small teeth that grow in and fall out quickly. The digital part is her fingers...the 4+5 Syndactyly Doctors say we can do surgery on them by the time she is 6 months and there will be scarring but she will have full function after physical therapy.

On top of the dysplasia she has a few things going on with her. A couple of days after she was diagnosed by the Genetics team in the NICU she had an ultrasound of her brain done. Came up that there is a cyst in her developmental area. They told me worst case scenario of it exploding and they told me best case scenario of it not even effecting her.
After we left the NICU I noticed that her foot was bent in an odd position...thinking it was clubbed foot I went to the pedi but she forwarded us to a foot specialist and we found out it isnt clubbed foot the bone just needs to be pushed back into the right area. She has to wear the clubbed foot bar/boots for a year...20 hours a day. She is also having issues keeping food down. I got her on Similac Alimentum for sensitive or colic babies...it hasnt been helping at all. She still hasnt been gaining any weight. AND isnt sleeping too well. Every 20 minutes in the middle of the night for me!!! At 3 months old my baby is 7 1/2 lbs! So our next stop is for a stomach surgery that will help her with the reflux going on.

I love my daughter so much but it gets overwhelming. I hope my story can help or theres someone out there that understands...It drives me crazy that I didnt have anything to do with this...I had a perfect pregnancy...no smoking no drinking...vitamins...its just a fluke they tell me.

Thanks for reading Caydences story! I know its a little long!



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Old Oct 22nd, 2011, 01:34 AM   2
AimeeM
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You have two beautiful little girls there I don't know anything about Caydences' condition but I can imagine it is hard. I must say though that her weight sounds great for the weight she was at birth.
I can relate to the reflux as my son had it really bad until around 11 months old. My best friends son also was born with talapies and had to have the boots and bar on for 23 hours a day for about 5 months with plaster casts for the first few weeks.

The health professionals are excellent when it is really needed and I am sure they will guide you in which way you need. Joining online support groups is a great idea



 
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Old Nov 1st, 2011, 17:31 PM   3
bobekah
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The online group does help...especially when it seems like there is no one out there!

Anytime I think my babies tiny I just remind myself how small she really was when she entered this world! Thank you for the info!



 
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Old Nov 2nd, 2011, 08:08 AM   4
Midnight_Fairy
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wow thank you for sharing your story hun wish you all the best x



 
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Old Nov 4th, 2011, 18:12 PM   5
lilbumpblue
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Oh chick how precious is she so beautiful...you have 2 stunning little baby girls! Dont know about the condition but my lb has poor weight gain due to very bad reflux following a ng tube being passed for the first time! He has this week had an operation to fit a gastrostomy feeding tube...hopefully this will work for him...he is 14lb 5oz at 13 months! He also has cystic kidneys xx



 
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Old Nov 8th, 2011, 18:17 PM   6
Ohmy4
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Wow what an amazing story! your daughter are soooo beautiful!! Stay strong...I had alot of surgeries as a kid and I turned out fine. Infact iam alot tougher then my sister who had none. Dont ever think this was your fault...like the docs said...its just chance..



 
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Old Nov 11th, 2011, 11:42 AM   7
JASMAK
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Your daughter are both beautiful x



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Old Nov 12th, 2011, 05:25 AM   8
jennie-jack
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ALL THREE of my children had have the surgery to correct the reflux if you have questions. also a great website is www.livingwithreflux.org.



 
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Old Nov 13th, 2011, 02:46 AM   9
momof2babies
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I know her story is much different than ours however when noah was born he soon began vomiting all his feeds doctors didn't listen too us until his 1 month check up and he was 6 oz less than when he was born. we tryed alimentum but that didn't help we finally ended with soy with a small amount of rice cereal added not alot just enough to make it a little starchier within a month of switching to this he quit vomiting all together and by 2 months he went from 7lb 9oz to 13lb and at 3 mo 16lb at 3 mo we stopped with the rice starch



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Old Jan 9th, 2017, 01:54 AM   10
ahess12
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My 9mo was diagnosed with oculodentodigital dysplasisa


My son has been diagnosed and has his first surgery February 2nd to start separation of fingers on both hand . He has micro cornea, small eyes, small nose with narrow airways, small chin, and chordee. His teeth are just now coming in so we will see how that works ou . It's been a little over whelming with all of the different specialist appointments. I hope all is well with y'all and if you ever want to talk message me.



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