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  • Welcome to Life with Lissencephaly!

    Welcome, and thank you for visiting Life with Lissencephaly. I hope that you will find something useful, inspiring, or even humorous on our blog. I love to help make others' lives easier, give them a smile, or make people laugh. Feel free to browse around, share with friends and family, leave us a comment, or even send us your story. If you enjoy our blog, please take a moment to click the banner below to vote for us in the Top Mommy Blogs. All you have to do is click! Vote for me @ Top Mommy Blogs - Mom Blog Directory

How one of our bad days turned into a bad week and ended with a head injury…

We have had a very rough week. I know my fellow Liss parents understand when I say we have our good days and our bad days. Unfortunately Layla has been having really bad days for a whole week now. I know it’s hard on her and it breaks my heart. Its also hard on us and has got my nerves beyond wrecked, my anxiety raging, and my heart heavy.

She always falls a lot, like most toddlers plus a little extra, but she has been falling so much more lately. She will literally just start stumbling a fall over while … [Read More]

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Potty Training & Big Girl Pull Ups, We’re At It Again!

Did I mention that we have been potty training again? We started last summer when Layla turned two. At first she seemed to take right to it but after a couple weeks she refused. Eventually we realized that she just wasn’t ready and the more we tried to push it the more she would resist. So we give her time and waited until she was ready.

Now we are at it again and she has been doing great using the big girl potty (the grown up potty, not a training potty!) She doesn’t go every time she is on it, … [Read More]

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The Swallow Study – What It Is and Why It’s Important

In a couple of days we have an appointment at the Cincinnati Children’s Hospital for our daughter. As you know she has  trouble eating, swallowing and talking, as well as many developmental delays which seem to be common with Lissencephaly. This has not only led to her being underweight and having a very slow growth rate, but she also often gets choked when she eats. Unfortunately every day we are afraid of this, but with this appointment we have a bit of new hope. With this appointment our daughter will not only have a swallow study done, but also an … [Read More]

Posted in Health, Layla | Tagged , , , , , , , , , , | 1 Response

Speech Progress at 32 months with Lissencephaly

Life with Lissencephaly - Layla at 32 Months

Life with Lissencephaly - Layla at 32 MonthsLayla’s speech has been a very long and hard road with slow to no progress at times it seems. However as a Mommy I have never lost faith and I can always see her potential. Lately she has had another burst in her progress and is expanding her speech and oral skills so much. She is more vocal than ever, getting out some words rand0mly. The words are not clear, but understandable to Mommy and Daddy, and they always come sporadically, which is typical for her diagnosis of Speech Apraxia. Some of the words we have heard from her … [Read More]

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Watching the Superbowl and Eating Pizza!

I don’t think I’ve ever told you this, but Layla absolutely loves football, as well as pizza! I guess it’s because I would always watch it with her while Daddy was at work. She would sit in her bouncy chair and watch so intently, kicking and bouncing away.

So of course, tonight we are watching the Superbowl, and she is taking in every minute of it. She actually waves me out of her way if I am blocking the TV. And every time they show the fans she claps right along with them. I really wish I had a little … [Read More]

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The Dangers of Choking with Lissencephaly make for a Long Night at the Hospital

It has been a rough week. We spent Sunday night in the hospital with Layla…

What Happened…

She had been completely fine all day, maybe a little more tired than usual, but that’s not out of the ordinary for Layla. She went to bed a little early, slept for a couple of hours and then woke up and decided it was play time again. We played, she was fine but getting extremely tired, very fast. Then I could see it in her face, I could tell she didn’t feel good, more than just being tired and ready for bed. And … [Read More]

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Connect with us & other Liss families

I must apologize for somewhat neglecting this blog lately. I know I have not been updating as I should, and I know I have a lot of catching up to do. However I’m sure that you know how busy and stressful life can be for a mom, and sometimes even more so for a Liss Mom. I started this blog for two very important reasons. The first being that I wanted to have a way to keep track of Layla’s childhood, milestones & accomplishments, the good moments and even the bad moments and struggles. A way to remember as time … [Read More]

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Together We Can Accomplish Anything

Accomplishing with Lissencephaly Pictures

For my fellow Liss Moms & Dads out there… Especially if you are new to the diagnosis… I know how you’re feeling. You’re shocked, you’re scared, you’re worried. The info you will find on this diagnosis is bad, as I’m sure you already know. So then you are left wondering will my baby really never be able to do all these things? Maybe, just maybe if I search enough I will find some children defeating the odds and doing well with this… Which gives you back some of the hope and reassurance that your child will defeat the odds right?… [Read More]

Posted in Inspiring, Layla, Milestones | Tagged , , , , , , | 5 Responses

Life with Liss at 29 months

Layla has been doing great lately. She is getting into everything. (Yes, I thought she already did, but it’s worse.) The house is a disaster every 5 minutes. She’s fast. She’s curious. & She’s sneaky. But she is so so smart. And she is showing even more so than ever how much she understands. She knows everything you are saying. She is so aware of everything and grasps the concept of everything almost immediately. She is mommy’s little helper. She wipes and cleans. She puts things back where they go. & She follows instruction better than any 2 year old … [Read More]

Posted in Layla | Tagged , , , , | 2 Responses

Physical Therapy is back on track!

Today we met our new physical therapist! I am so glad to get physical therapy going again. We have had such a hard time with PT over the past year. When we first started all of our therapy sessions, there were no physical therapists available. We waited months. So I began doing our own physical therapy at home. After waiting for over six months we finally found a physical therapists to see Miss LG every week, and it was going great. After seeing that therapist for a few months he was transferred to another location and we were left again … [Read More]

Posted in Layla, Therapy | Tagged , , , , , , | Leave a comment
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