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The Fault In Our Stars, A Mother’s Reality, & The Future of Living with Lissencephaly

Life with Lissencephaly

Layla stayed with her Gran last night, as some of you know, she doesn’t have overnighters too often. Gran is pretty much our only babysitter. So when I get “time off” I am always trying to get so much done and be extra productive, but I have realized that I am spending this time all wrong. I actually stress more when she is gone than when she is here because I feel like I need to get so much done, between the housework, my “work” work, and relax time, one night is never enough. So I don’t actually even relax … [Read More]

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What’s going on in that little head of your’s?

Layla, Mommy, & Great Granny on Christmas Eve 2014

Layla has really been showing progress with her speech skills lately and I couldn’t be happier! Sometimes she just talks up a storm, and even though you can’t tell what she is saying, it’s still as if she is carrying on a conversation or answering you most of the time. I really wish I knew what she was saying or what is going on in that little head of hers sometimes.

This girl has been like a teenager recently, attached to her phones. She has so many play phones plus an old iPhone that just has a few apps like … [Read More]

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Speech Therapy Evaluation Accoplished & Starting Sessions Soon!

Just a quick post because I forgot to write about this… We had an evaluation last week for Speech Therapy! Finally! Now we just have to wait for them to process the paperwork and for the insurance company to approve our sessions. I’m hoping there won’t be any hold up and we can get started right away. I think we will like this place. Coincidentally it is right next door to where we were going for Occupational Therapy, I really wish they hadn’t closed down because it would have been perfect.

Now we just have to find a new Occupational … [Read More]

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Neurologist Appointment – January 2015

Life with Lissencephaly - Layla & Daddy

We had the neurologist appointment today for our 6 month follow-up. Unfortunately it is still the one at the Commission for Children with Special Health Care Needs. Ugh… Not that I want to put them down, it’s great they provide the services they do, however, it is NOT the place my daughter needs to be going. The neurologist is, well let’s just say she didn’t seem very bright. I’m sorry, I hate to be so harsh, but It’s true. We have got to get an experienced neurologist that knows what they are doing and can handle managing Layla’s care and … [Read More]

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Layla’s Christmas 2014 And One Proud Momma

Layla's Christmas 2014

I know it is a little late, but I just wanted to write and say how I hope you all had a wonderful Christmas and also tell you how ours was. I was really excited about Christmas this year because of Layla. You see, Layla hasn’t always shown quite as much interest in Christmas or presents like most kids do, however, last year she was able to open some of her presents with some help which got her a little more interested in it. She tends to drawback a bit because she gets very overwhelmed because of everything going on … [Read More]

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Layla’s Endocrinologist Appointment

We had an appointment with an Endocrinologist today. I think it went well, even though Layla was extremely fussy. She was just so tired and hungry and not feeling well as we have all been sick the last few days. It is much harder on her when we have appointments early in the morning, which is why I always try to schedule them for the afternoon but this one was bright and early and to make it worse, she didn’t sleep well last night at all. However, I think it went well. The doctor was very nice, knowledgeable, and explained … [Read More]

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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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