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Freshly Messy Teething Lovie

Freshly Messy Teething Lovies are super adorable, super soft, and super needed! Every teething baby needs one, or two…. or three! And what’s awesome? Most of our babies’ find them to be security blankets as they continue growing! Our customization blanket varieties are constantly growing both in pattern availability and teething ring choice ...
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Two Reasons to Promote Inclusion of Special Needs

After last week, I feel like i need to clarify two reasons to promote inclusion of special needs children, otherwise known to me as simply the topic of INCLUSION.  You see, for me unlike some other moms, the word disability does not insult nor define my family. I have a disabled son, ...
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22 Days to Understanding Cortical Vision Impairment

Today We Help You Help Your Cortical Vision Impaired (CVI) Child Last November, we presented you, our readers, with 30 Days to Understanding an L1 Syndrome family. 30 facts about L1 Syndrome, one fact per day, were presented to our readers. Back before I delivered my son, I wrote a post ...
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There are L1 CAM Syndrome Babies with No Shunt

Yes, There are L1 CAM Syndrome Babies with No Shunt Emily, can you tell me about your family (husband/kids name ages)? My name is Emily Burdin. My husband is Jay and we have been married for 5 years, and we’re writing this together. We have two sons Carter, 3, and ...
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Loveable L1 CAM Syndrome Boys

The number one thing I wanted to find online when I learned Noah would have L1 Syndrome (also known as x-linked hydrocephalus), was other families who were affected! I will compile stories of other x-linked hydrocephalus families and hopefully this will help you either understand what our L1 families face, ...
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This L1 Syndrome Baby Literally Saved His Mom’s Life

Does Your Son Have L1 Syndrome? Yes and I am a carrier. I am Tracy Felix. I have been married to Noel III for over 12 years. We have 3 kids. Our oldest, Noel IV, is 3.5. He is our L1 baby. Our middle child, Sam, is almost 2 (not ...
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30 Days to L1 Syndrome

L1 Syndrome is a rare and complicated genetic condition that even researchers know very little about that I want to share with you over the next 30 days. Or, if you are seeing this whole page in its entirety, next 3 minutes. Back before I delivered my son, I wrote ...
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Raw and Confidential Confessions of a Special Needs Mom

Confessions of a Special Needs Mom I’ve written this for one reason: to give light and insight into the emotions of a club I hope you are never a part of: the special needs club. Specifically, the special needs club of a rare condition. You see, unlike cancer and autism ...
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I Do Not Love My Son Despite His Condition, Nor Because of It

I do not love my son despite his disability (nor because of it). My son Noah is seven months old. He is super cute and totally adorable. He’s never even been bitten by so much as the flu. He did have a suspected UTI that landed him five days in ...
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An Astounded Neurosurgeon Follows Up with L1 Baby

China Grove China Grove!! I’m telling you; Noah has done it again! My little Miracle on Mainstreet! Thursday morning bright and early I packed the kids up in the car and off we headed to the next biggest city nearby for a follow up with the neurosurgeon. Sometimes, I get ...
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A Frantic Day in the Life of: an L1 Family

Ever wonder why my house is cluttered? Strike that … its not cluttered. A nightmare is a better description of my home, 99.9% of the time. Ever wonder why there are always dishes in my sink? Bottles in baskets? Bottles in sinks? Bottles on couches? Toys on couches? Under couches? ...
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Facts about L1CAM Syndrome

What is L1CAM Syndrome? L1CAM Syndrome: HSAS, MASA, CRASH, ACC L1 CAM [Cell Adhesion Molecule] Syndrome: everyone has the L1CAM Gene which in turn creates the L1 Protein; the problem arises when amino acids fail to allow the gene to form correctly (1). L1 Syndrome accounts for approximately 2-15% of ...
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L1 & The Pediatric Opthamologist: 16 Weeks Old (Exactly!)

Earlier today, Josh, Kara, Noah, and I loaded up and headed to the pediatric ophthalmologist for the second time in 4 months. First off, I’ll start by saying Kara behaved wonderfully & absolutely loved their play room. She couldn’t have been in a more perfect two-year-old seventh heaven! As for ...
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Noah’s Brain Improvement {{Hooo-rah!}}

Noah is awesome. God is good. Luck, Mercy, and Humility are on our side today. In a journey of ups and downs, on a path of of heartache and happiness… today was an amazing day. Let me start by saying Noah passed his hearing screening on Monday! The audiologist warned ...
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Noah is ENabled; never DISabled.

My child ENABLES! For any of our new readers, meet Noah. You can read all about what he has going on here… but he has a genetic condition named L1 Syndrome. He has severe hydrocephalus – his head birthed at 47cm large, and now at 10 weeks old, it has ...
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Baby Noah, “Live Like You Are Dying!”

So, this isn’t a super informative post, but I still feel the need I must share this story with you as it touched me greatly! Thursday, Noah’s OT came to visit, and stayed for about an hour and fifteen minutes. We went over all new goals for Noah, and set ...
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Noah’s Fight; 7 Weeks Alive!

Noah man is doing great in Physical Therapy. Alex, our therapist came by yesterday to do his monthly evaluation. Usually we see his assistant once a week, and then Noah and I have ten minutes of therapy alone together either before or after each change/feeding. We are working a lot ...
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The Therapy Journey Has Begun

Now that we’re home from the hospital, updates and improvements hard more difficult to forward without being so repetitive. Physically as far as quality of life … as far as we know … he’s happy, pain free, fed and clean. Developmentally, on a gross-motor basis, he is a very special ...
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Noah’s First Week Home

This past week has been a whirlwind! We came home last Monday, February 16th, 2015 when Noah Bear was 21 days old. Do you know how hard we worked to convince those people Noah was ready? Where should I start? Ohhhh goodness…. first off, we convinced  them (which I may ...
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Steps Toward Home

So let’s start out with the good since its been a few days since our last chime in with you guys! There really hasn’t been a whole lot to report. We’re waiting on him. We went home and spent Tuesday through the night with our daughter Kara. However, little man ...
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Slow & Steady Wins the Race

Lets start this update with another little baby of mine who’s incredibly tough. Miss. Kara has been without mama and daddy now for 14 days. We’ve seen her, talked to her on the phone, and sent her pictures – but it isn’t the same. She’s still behaving. She’s still charming ...
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Back on the Road to Recovery

Noah man has gone through his share of battles in his 11 days of life! And now here we sit on the day he was to be discharged waiting for him again. And we are going to continue to wait for him every single day until he decides to join ...
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The First of the Setbacks

Today was Noah mans first “bad” day. Last night into this morning he ate really well, no flaws no problems. Well this morning between his 9am and noon feedings they adjusted his shunt flow rate and since has nearly completely quit eating. He usually either nurses very well or eats ...
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There’s Hope in Progressive: Noahs Journey

Today was an awesome day in PCU! It seems like everyday is awesome as we are blessed with his love and presence, but today in particular. We might be getting close to the light at the end of the tunnel. My mom sent me this photo today <3 I just ...
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Noah Gabriel is Movin’ On Up!

A short blog post, but very very beyond worthy! Tonight, Noah moved into the Neonatal Progressive Unit! Its a totally different atmosphere, totally different setting. I’m sooo proud of him and happy for him! He did it! He fought through delivery, hydro pressure, surgery, tubes, beeps and dings, poking and ...
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Totally In Love! Noah’s Improving!

Ronald McDonald basement wall: Well, I have absolutely nothing in the world to complain about. Nothing. We have a super fabulous accommodation that is keeping us really close to our fighting boy. Ronald McDonald housing is phenominal, and we’ve met so many fighting families while we’ve been here. I met ...
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My Two Day Old Warrior

So, ultimately, the bottom line is that I owe each and every single one of you large thank yous. All of you following, all of you praying are having an equally huge impact on my son’s life, his battle and will to survive, and his ability to breathe another moment ...
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Baby Boy Eagle Has a Name!; 37 weeks, 2 days BORN!

Welcome to Noah Gabriel Eagle’s birth story and life! Thank you all for your prayers, what a crazy busy full overwhelming fantastically awesome day it has been! Noah is currently in the neonatal intensive care unit. Our c-section was pushed back an hour due to an emergency coming in at ...
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Baby Boy: 37 Weeks, 1 day

This is a long post because so many have asked what all we are facing. Futures will try not to be so long 😉 Well, I grew this pregnancy! && baby boy was much more punchy, kicky, and heavy than his older sister Kara! Of course,  at this point, Kara ...
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