A big smile!

We got it! We got what we've been waiting for a SMILE!!! She is cooing, kicking her legs in excitement and putting her hands together. She is also starting to want to put things up to her mouth. We are thrilled!!!!

Dr. Filloux

We finally got in to see Dr. Fillox (pronounced Few), he is the head doctor in pediatric neurology up at Primary's. He saw Leah up at Primary's when she started the ketogenic diet and we really liked him. He was happy with Leah's progress. He was shocked that the diet stopped Leah's seizures (it is very rare for the diet to stop seizures). We know that we were led to the diet and we are grateful everyday that God continues to take care of Leah and our family. Anyway...back to the doctors appointment. He is ordering another MRI and EEG for Leah, he wants to make sure everything looks good. He doesn't feel she has any disease or disorder associated with seizures. He feels if she did she would be seizing still and we basically have already checked for almost all diseases associated with seizures. He feels there's a 25% chance she may have a genetic disease not associated with seizures. He is going to do some research and see if there's any other diseases and disorders to check for, again not related to seizures, but maybe more the nervous system. Chad told him "Doc I really need you to think outside the box". Dr. Filloux agreed that Leah is a very rare case and that he will do some studying and get back to us. This is what we need...this is what we've been wanting and waiting for...a doctor that cares, wants to help and is willing to study and "think outside the box". We went through many many neurologist to find one, one single person to help us. Good doctors are very very hard to find. Anyone who is reading this PLEASE don't settle on the first doctor you see, always always get second and third opinion's. I know I've said that before but I can't stress enough how important that is.

Much love for special needs parents!

Words can't even describe the feelings of compassion I have for the parents who have a special needs child. I never thought I would have a special needs baby, nobody knows they are going to get one of these little angels. When was pregnant I thought I was going to get a healthy baby girl. To my surprise that wasn't the case. This story describes my feelings when Leah got sick.


WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

  




As hard as it's been to be in "Holland" I wouldn't trade how it's changed my life for anything. I am more of a compassionate person, I am stronger, I am patient, I don't judge others, I have more love for everyone around me.  I am a better wife, mother and friend. I will thank her everyday of my life for giving me this gift!

Sugar...

Leah's appointment with the nutritionist went well. She was happy with her progress. Today Leah gets sugar for the first time in four months (her diet didn't have any sugar and very little carbohydrates).  We are slowly adding carbohydrates back into her diet. In three weeks she will officially be off the diet. We truly know that the diet worked for her and stopped her seizures but we also know that it's time to go off it. Leah will probably have a seizure when she gets sick and runs a fever but at least now she won't have seizure after seizure. She most likely will grow out of the seizures by two years old.

Paula (she is the nutritionist and nurse practitioner in neurology), apologized to us that they never found anything with Leah and that she doesn't have a diagnoses. We continue to tell them that we are happy they didn't find any horrible disease. We can live without a diagnoses. We KNOW Leah is going to be okay. Yes, because of this set back she may have some physical disabilities down the line.  Then again, maybe she will just catch up one day. We can handle anything!

Leah was in a comatose state for three months. She lost almost everything, thankfully she never lost her will to eat. She is the most amazing little girl. She fought for her life every single day and continues to fight. I wish everyone could feel of this little girls spirit. There are not very many people on this earth that have this will power to live. I see her (our Leah before she got sick) in her little body fighting to come out. She works hard every single day. She gets so upset because her body won't do what she wants it to do. I will do everything in my power to help her reconnect.

I love being her mom. Anyone who knows me knows I like having a clean organized house and I like having my hair and makeup done nice everyday (thats the hair dresser in me). Well...all these things don't exist in my world right now. My house is barely making it and I look like a mom who puts her baby and other kids first. I am happy and I am loving living in the moment!

Progressing...

Leah is doing well! She is moving her arms from her shoulder and kicking her legs. We didn't get any smiles this week...we hope for more soon! Her head control is getting better along with eye contact and tracking. She is moving along, we wish it was at a faster pace but progress is progress and we will take any of it.

She has been on vitamin B12 for a week now. She doesn't cry when we give her the shots, the needles are so tiny she barely feels it.  We are starting to see a difference in her motor skills, which is why we are giving her the vitamin B12. The doctor said it would take about a month before we see a big changes in her motor skills. We are crossing our fingers it helps a lot!

We meet with the nutritionist on Monday, we will be discussing the next step for Leah. I will post what we find out.