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skylersmomma's picture
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Last seen: 4 years 6 days ago
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new here :)

Hi I'm jen mom to skyler 7 year old boy with lobar holoprosencephaly he is missing his septum pellucidum and his corpus callosum he has ventricolomegaly (sp) aswell. He also has a underlying cardiac issues he had open heart surgery for rvoto right ventricle outract obsructon and a vsd . Hoping to meet some other mommies here. I am also pregnant again with a lil boy due september 28 th 2011 there are some concerns with this baby as he has a calcification in his diaphram. My 7 year old has manic bipolar diorder and mood regulatory dysfunction. Look forward to meeting u all Smile

wishing4agirl's picture
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Wecome to the board. Great group of ladies. My little man Eli (will be 5 yo in July) was born with lots of heart issues (one of which he has is a LVOTO or SAS). So I understand that all too well. I also have a 6 yo who is mildly autistic. So lots of behavior issues/sensory issues and he learns differently. I adore all the ladies here and could not have gotten through some hard times without them.

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Hi I am Julianna. I have 3 kids and another on the way in just a few weeks. Heath is my 3rd child (2 1/2 years) and he has mild-mod hearing loss and Chiari Malformation of the brain. It causes him to have sleep apnea, problems breathing and eating, balance issues, devemental delays (about 10 months at this point) and sensory disorders.

skylersmomma's picture
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Thx for the welcome I look forward to getting to know you ladies better Smile

kerina313's picture
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Joined: 09/10/05
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Hi.. wanted to offer a quick hello.. I don't get on as much as I used to.. kind of hard with 3 Smile

My first is a VATER/VACTREL child -- heart, kidney & spine issues (although she's doing great)

My second was a T-18 baby.

My third & fourth are twins. One who has no corpus collasum.

You'll find that these ladies on here are great even though most of us have different issues. Usually someone knows someone else that has been through something similar..

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Last seen: 4 years 4 months ago
Joined: 03/28/08
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Welcome! I agree, all the ladies here are great even if we've been through different things. I have a son who is 2 and has a chromosomal disorder.

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Joined: 05/05/04
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Welcome to the board! As I always say, it's not a fun board to have to join but it's a great group of women!

Tommy was born with an incomplete unilateral cleft lip. He had a lip repair at almost 4 months and has had an extra tooth removed. Next week he gets braces on the top because one of his teeth is extremely crooked and pushing into other ones. I'm not thrilled at the thought of putting braces on a 3-year-old Sad

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"NatalieL" wrote:

Welcome to the board! As I always say, it's not a fun board to have to join but it's a great group of women!

Tommy was born with an incomplete unilateral cleft lip. He had a lip repair at almost 4 months and has had an extra tooth removed. Next week he gets braces on the top because one of his teeth is extremely crooked and pushing into other ones. I'm not thrilled at the thought of putting braces on a 3-year-old Sad

Braces at 3? They can't just pull the tooth? Or is it a permanent tooth?

Guess I should intorduce myself, lol. I'm Tanya, and have 2 daughters - Alana is 6 and Madison is 4. Madison was born with laryngomalacia and some respiratory issues which she has basically outgrown (praise the Lord!). Alana had a whole host of issues as a baby (FTT, low muscle tone, etc.) but has outgrown most of those and now just has asthma and allergies.

skylersmomma's picture
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Last seen: 4 years 6 days ago
Joined: 04/10/11
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thanks ladies cant wait to chat with u all SmileBiggrin