My kids!

As I have continued reflecting back on the past few months I have thought of a lot of things that helped me get through each day. I want to continue writing about these things so that I remember them, so bare with me as my goal is to write about something each day until I can't think of anymore things.

Today is the new love and appreciation I have for each one of my kids! I thought I already loved them so much until I experienced this event that has made me love them even more. They are the reason that in the darkest moments I had I got myself out of bed and did my duties as there mother and showed them that even though I have a sick baby they are just as important to me. There were days of deep depression and I wanted to stay in bed, never shower and not want to eat. But I didn't choose that and it was a fight in my head every day to choose to not do that. It was harder to get up and continue life the best I could then lay there in self pity. My kids did that for me, they gave me the strength to keep going. As their mom I wanted to show them that when life throws you a curve ball you keep going and don't give up!

I love Lauryn for having so much love for her little sister. She always said "I believe in miracles". I love the faith that Lauryn has.

I love how much Trent cares so much for Leah. When he comes home from school everyday he asks "how many seizures has she had today?" It broke my heart when I had to say five or ten and see the sad look in his eyes. Now I've been able to say none for the past four weeks and I love to see the big smile on his face.

I love all the kisses Tyler gives Leah every day, he kisses her forehead all the time. He always says "I love you Leah". It just melts my heart!

Thank you Lauryn, Trent and Tyler for being the best sister and brothers to Leah. She is so lucky to have each one of you in her life.

My friend Gina gave me this saying today:

"Once you choose hope, anything is possible". -Christopher Reeve

Thanks GIna!

"We only get one life, make it good", this is Chad's new saying these days. The past month I've really reflected back on the last four months and who has helped me survive this time in my life. The first person I think of is Chad. He really is amazing! I couldn't imagine my life without him. He steps up to the plate and faces challenges head on. He is a MAN! He takes care of all the needs of his family, he puts us first ALWAYS! Chad is my best friend, he is always there for me. He knows how to make me laugh and he holds me when I cry. I wouldn't want to go through this with anyone else.  Thanks Chad for being who you are and being the best husband a girl could ask for!

Leah is doing much better now that her body is adjusting to the new formula and her calcium level is dropping! Still no seizures!

Eye doctor

We went to the eye doctor today and her eyes look great. The nerves behind her eyes are very healthy and her eye sight is great. The doctor said that she thinks Leah's tracking is ok, but it could be better. Leah is having an eye therapist come and help her track better.

We also had blood drawn to check a few things and her calcium is really high so they are changing her diet to help that. We are now friends with the tech's at the lab they are really starting to get to know Leah. I don't know if that's a good thing.

Leah is running a high fever yet again today (no seizures with it), and we have no clue why.

Each of us have our moments of missing the old Leah, especially when we see baby's her age crawling and playing. We long for those moments with her. Even though we don't get that right now it's okay because we get to have a special angel in our home. The feeling that she brings into our home is true gratitude, true happiness and true love.

Dr. Humpherys

We had the great opportunity to meet with Dr. Humpherys, he is a pediatrician and a naturopath. He is awesome! We told him Leah's story and he is ready to help us put the puzzle together to help Leah. He is having Leah's medical records sent to him and he will be studying her MRI's, EEG's etc. and then come up with a plan to help Leah progress.

 Leah is still not developing, that has been our major concern now that her seizures are under control. She got a 101 fever this past week and she didn't have a seizure, which was amazing! Leah's tonic seizures have been gone for 3 weeks now, but she is experiencing some small absent seizures now and then. The crazy thing is she is not producing ketones because they changed her diet so she could gain some weight and she isn't seizing. Go figure! This little girl is very confusing!

So our big question is why is Leah not developing now that her seizures are gone? Is there something else going on? We really need answers, it's so hard to live day to day with no answers. We need answers so we can move on no matter what the outcome will be. But, until then we will continue on and keep fighting until we find those answers.

Leah is going to get her eyes checked tomorrow to make sure there's nothing going on behind her eyes that is causing seizures and to make sure her seizures haven't caused any eye damage. She is also having more blood work done tomorrow.

A special thanks!

I just wanted to thank everyone for all your prayers for Leah and our family! We appreciate all your love and support. We know that this road of recovery is going to be a long, but we are ready for it and we will include everyone with each milestone she makes. So far, she is like a newborn and we are trying to get to know her cries. Still no seizures! We couldn't be more grateful.

8 days seizure free!

We can't believe it! She is starting to learn how to move her body again. She is looking better everyday!
Life is getting a little bit back to normal and it feels so good!

4 days of no seizures! Yay!

Today Leah has been seizure free for 4 days now. Yay! We are so happy! She is eating a lot and sleeping a lot these past few days. She eats so good and starts crying right before the next feeding letting us know she is hungry. She is napping twice a day with no seizures. In the past we would hold our breath watching her wake up because she always seized coming out of sleep. She now is going to sleep and waking up like a healthy baby,  it's so beautiful to watch. She is also moving her arms, fingers and toes more. Today, she took a binky for the first time in three months.

A special Easter gift!

On this Easter Sunday I am so humbled to say that Leah is on her 6th day of doing very well! A couple of months ago I had hoped and dreamed that by Easter she would be on a road of recovery and here we are...It makes me very emotional to say that I think we made it to that road! What a special Easter gift given our family! We are so incredibly blessed at this time.


“God is eagerly waiting for the chance to answer your prayers and fulfill your dreams, just as he always has. But he can't if you don't pray, and he can't if you don't dream. In short, he can't if you don't believe.” ― Jeffrey R. Holland

Another AWESOME day!

No seizures!!!! Yay! Nothing but happiness is in our home!

Happy day

It was a great day today. No fever! She has ran a fever for almost 3 weeks. Today was the first day she hasn't had a fever and it was an awesome day. She drank all her bottles today and she drank them like a healthy baby (a strong suck and no dribbles). She cried a lot today (that's a good thing), she gave me great eye contact and she moved her arms and fingers! The crazy thing to all this is she has had small ketones all day. We think because the dietitian changed her formula to have her gain some weight and it's making her produce small ketones...just guessing!

We have come to a conclusion that fevers stink!!! They really threw her off track for the past 3 weeks.

Chad and my older kids do jiu- jitsu and they are taught to have an indomitable spirit. It is a good theme to have when facing challenges. You must not give up. Even if you lose, you get up and fight again. We now have that as the theme in our home.