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    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

C-A-K-E! Who wants chocolate cake for breakfast?

For Layla’s 4th birthday over the summer we had decided to celebrate all week long with cake. She actually helped me make a cake for the first time on her birthday and she absolutely loved it. I set up her little princess table in the kitchen and put all of the ingredients, dishes, and utensils we needed on the table. Layla helped me pour each ingredient in and stir it all up with a big spoon. She did so well and had a blast doing it. I could see that she not only enjoyed doing this, but she was also … [Read More]

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Neurologist Appointment August 2014

Yesterday we had an appointment at the neurologist.  Until now I have been very unhappy with our visits to this particular clinic. It is the clinic that our state and health insurance automatically sends low income families. Don’t get me wrong, it is great that they have such a place and I am sure they help many children, but I don’t feel it is the best place for my daughter. In all honesty, I feel like every neurologist appointment we have had so far, at this clinic and even at the children’s hospital, has been a complete waste of time. … [Read More]

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Teething May Be The Cause For Our Recent Falling & Balance Issues

We believe teething may be the cause of the balance issues Layla has been experiencing this summer which has resulted in so many falls and booboos on a daily basis. I know that sounds crazy, but it is amazing how certain things can link to other things. The teething always caused ear trouble when Layla was younger and now with her two year molars trying to cut through it seems to be effecting the inner ear and causing horrible balance issues.

This has caused us so much stress, worry and heartache trying to keep our baby girl from getting hurt … [Read More]

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Falling down a lot more than usual and Mommy is getting very worried…

Life with Lissencephaly Blog - Miss Layla

Layla has always done so good, don’t get me wrong, she has her struggles, her ups and downs, and her good days and bad days, but overall she has done extremely well with the cards she was dealt. I know we are not just lucky but blessed. However, lately she has been falling down a lot. We thought she fell a lot before, but now it has gotten really bad. It started around the time of her birthday 2 months ago, and at first I thought it was her feet, which were turning in even worse than ever causing her … [Read More]

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To My Dearest Readers & Supporters

Dearest Readers and Fellow Liss Families,

For those of you who have read and followed our blog, Life with Liss
over the years, first I just want to say thank you. The support, the
comments, the messages, all of it means so much to me, to us. Second,
I know I haven’t been posting or updating it like I should for a while
now and for that I apologize. I feel like in a way I have let you all
down, as well as myself, my family, and Layla. LWL was created with
the goal to help others traveling the … [Read More]

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Occupational Therapy Has Been Approved


From the moment we noticed Layla having developmental delays we got her started in therapy services. She received occupational therapy and speech therapy through a program called First Steps. She was able to have 2 OT sessions a week and 1 speech session every other week. Physical therapy was received through a different program off and on and was a real mess.

We absolutely loved our occupational therapist right away, she was so good with Layla. However the speech therapist was not so good. She was very nice, but we didnt quite feel she was a good fit and … [Read More]

Posted in Layla, Therapy, Uncategorized | Tagged , , , | 1 Response

Teething again… Really?!

So, Layla is in fact teething again at 4 years old…..

We had taken her to the dentist a few months back when the dentist informed us that she was actually just cutting her two year molars, this may even be why she has been grinding her teeth so badly. And I do mean badly, all of her back teeth have been grinded down almost to the gums and she has basically even grinded a hole in the side of one tooth. The dentist said it was okay since the grinding wasn’t hurting her, it was just kind of hpw … [Read More]

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

Life with Lissencephaly

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
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