Our parents!

I am so grateful for my parents and Chad's parents and all they have done for us. They have been there for us every minute of Leah's sickness. They watched our kids countless times, made us many many meals, went up and stayed with Leah in the hospital when we needed family time. We couldn't ask for better parents!

Leah went to see Paula her nutritionist this week, she is also a nurse practitioner in neurology so she does all her examinations. She is very pleased with Leah's progress she said that developmentally she acts like a one month old. Leah had more blood tests, her calcium continues to stay high so Paula changed her diet again. She now is on a 2.25 ratio instead of a 2.50.

Leah is showing more expressions on her face. She is progressing very slow but progressing. She is doing things that she did when she was a newborn. We just love that little girl!

My friends

My best friend Carisa is moving out of the country tomorrow. It's been a little emotional for me because she has been there for me since I was in junior high. She knows me so well and has really been there for me during this hard time with Leah. I will miss her so much! Luckily it's only a temporary move!

I am so grateful for all my friends! I truly have the greatest friends. My friends from childhood, junior high and high school have really came back into my life, it was like they were never gone. When they found out about Leah they instantly came and helped me. I love each of you and thank you for being there for me. My friends in my neighborhood and from my work I thank you for all the meals and for watching my little Ty when Leah has been in the hospital. I can't thank my friend Regina enough for taking Ty every week during Leah's therapy.

Thank you for all the encouraging texts and all the phone calls just to say you are thinking of us! I love each of you very much!

When Leah had her second tonic seizure I was at the grocery store. Just minutes before her seizure I ran into a childhood friend I hadn't seen in years.. We stood there talking and all of a sudden Leah started seizing I grabbed her and started crying and whispering to her come on baby take a breath. At that moment when she wasn't breathing I wanted to run down the aisle screaming for help. Instead my friend stood there hugging me telling me over and over she's okay.  Jill then helped me check out at the store. It wasn't a coincidence I happen to run into her at that moment. God really does use people to help us.

Loose muscles!!! Yay!!!!

I wish I was a everyday blogger...I guess I'm just a weekly blogger. Life with four kids, traveling husband, working mom makes it such that I can only blog once a week.

Our life with Leah is a roller coaster, some days are up and some days are down. She is still teething. She fevered last week and did have a few seizures during the night. They were not tonic seizures but it made for some sad faces around here.

Her muscles have loosened!!! We are so happy!!!! She is moving her head and fingers and toes. It's so beautiful to watch her little fingers and toes move I could watch them all day long. We hope for some hand eye coordination soon. She looks for me and checks in with me when her therapist works with her. Her therapist said that's such a wonderful sign.

Thank you again for all the prayers!

Goodbye Keppra (seizure meds)!!!!!!!

Leah is officially off her seizure medication, that medication completely sedated her. Medication can be so scary. We are so happy we never ended up adding another medication, she really would have been more glazed over. Chad and I are going to take the bottle of Keppra out to the desert and shoot it over and over. Sorry that sounds violent and we are NOT violent people but we hate that a drug took our daughter away from us.

It's been a long week. Chad was in California all week and Leah has her two front teeth coming in. She has been miserable and I really missed my husband. Leah had a couple small fevers this week and never seized. Incredible!!!

Leah's muscles get really locked up, we do therapy three times a day to help loosen them. We pray her muscles will make a connection to the brain and her brain will make a connection to her muscles. That has been a really big concern lately. We are so grateful for all the prayers for Leah concerning her seizures and God listened. Her seizures have stopped, it truly is a miracle! As her mother I humbly ask to please continue praying for her and her recovery.

She has moved her legs more this week and has held her head up a little more! Progress is slow but she is making progress. We as humans want more we always want more and more. We have seen a new look in her and I am truly grateful for that but I want my baby back the way she was before she got sick. I miss her so much, my heart aches everyday! I need to be more patient and continue the fight of hope!

A new light!

We see a new light in Leah's eyes! The past months all I've wanted to see in Leah is the light I saw in her eyes the first five months of her life. I have deeply missed this connection. I now today and the past few days have felt that special connection with her. She is with us, we feel her with us for the first time in four months. It's absolutely beautiful!

Leah is officially four weeks seizure free! She has had a few absent seizures (stares off into space for three seconds) but no big deal. It feels so good to take a breath! In the past when she seized it was so heart breaking. The pain of watching her seize and go blue and waiting for her to take a breath was unbearable. I cried every single time she seized, I never got use to it. I felt like I faced death 6-10 times a day, that takes an emotional toll on the body!

We are weaning Leah off her seizure medication. It is scary but we also know the medication never worked for her. Well...we have seen such an improvement in her since we have started the weaning process. First, like I said we see her. She is also moving her arms and legs more, eating extremely well (it use to take us over an hour to feed her) now she downs a bottle in 10 minutes, she is holding her head up while we burp her, she is responding to sounds, she turns her head to see who's talking. All of this progression is so amazing!

She now has an eye therapist. Leah did so well with therapy, it was the first time I've seen her put forth effort. Therapy has kick up a notch now that she is so responsive.

This week has been the best! We look forward to the next weeks and what is in store for this little girl.