Leah is doing better!

Leah is doing better! She finally turned Friday afternoon. She did great today, no seizures during the day. She was so alert! She moved her head around. She moved her arms and responded when we talked to her. These days get us through the hard days.

Seizures are back.

It's been a rough couple of days. None stop seizures. Here's a video of one of them.

 It breaks my heart every single time she seizes like this...I never get use to this. Can you believe she did so well Monday and Tuesday and then she turns so quickly. Man...I wish I understand her sickness. It's a constant roller coaster ride... It's so hard on me...I get very emotional! I panick when she gets like this. I panick when I have done everything I can to stop her seizures and they don't stop. I beg for God's mercy! Over and over! I don't know how I lived with these bad seizures for almost two years. I lived in survival every single day. I am so much stronger than I thought. I am so proud of myself! I now realize how well she is doing... She has really done so much better these past few months. Days like today happen only about twice or three times a month...thankfully! I had to go pick her up from school. She had five of these seizures in 20 minutes. It freaked her teacher out. God bless special needs teachers is all I have to say. They really take great care of her. I am so thankful a nurse is there to care for her. She has had countless seizures today...honestly days like this I fear her body won't hold up. She has such labored breathing. Thank goodness for oxygen...and diet coke and chocolate for me!

24 hours seizure free.

This is an update I did on Leah's private FB page. If anyone wants to be added let me know.

Leah hasn't had a seizure for the past 24 hours. She had her first seizure free school day. Her teacher wrote a long list of all the things she did today. Leah made many choices at school with her eyes. This is very rare for Leah. I am so happy to hear all the success today! We had a great night with her last night and hoped it continued today. Last night she was very alert. It's like a light switch comes on. Usually it only lasts for a couple hours. This time 24 hours! She has had great eye contact, she tracks, she turns her head when I call her name. Her body is really loose so she is able to move her feet, toes and fingers. I am one happy mama today!

School has been life changing!

The best part of the day on Tues/Thurs is when I hear the van driving up my street to drop off my little girl! I can't wait to see her. I miss her when she is at school. She is there from 8:30-3:00. It's a long day for both of us. I have to admit I sure accomplish a lot while she is gone. I get caught up on laundry, grocery shopping etc. and I get a little me time. I can't take Leah to the grocery store so I depended on my dad to come so I could run errands. My mom also came every week to help with cooking, laundry, cleaning etc. All I do when Leah is having a bad day is just hold her and love her. These days happen regularly! So life gets put on hold. It's hard but I wouldn't trade it for anything. She stays at school even if she seizes all day. They take care of her. Having someone else care for her a couple days a week has been life changing for me.

School was great!

Leah did great at school this week. She goes Tuesday's and Thursday's from 8:30-3:00. A little bit of a long day. Her teacher said she responded best to music/singing time. She is a McClellan...we love our music! She came home exhausted. She went right to sleep...which is unusual for her. I also had a great day running errands this afternoon with no kids. That's a first! It was wonderful! A little note about Leah's dress she had on for her first day of school. It's pretty special to us so it seemed fitting for her to wear it on her first day of school. She received a couple beautiful dresses from a friend who works with Chad. This couple lost their one year old twin girl in her sleep. They sent Leah this dress with a note saying: "spreading the love". It meant so much to us. Much love to this family. We think about their beautiful girl often. 

First day of Preschool!

Leah is off to preschool! I felt like it was my first day of school. I have been so nervous these past couple days (let's be honest I have worried for the past three months). I woke up a lot last night feeling very anxious. When I saw the van driving up to pick her up my stomach dropped and the tears were flowing. I had to compose myself so I could talk to the driver. He was awesome and I felt very comfortable with him taking my child to school. I am actually doing way better than I thought. Ultimately I know this is so good for her. I met with her teacher and the nurse last week and they were great! Tyler did most of the talking at the meeting. He explained to them exactly how to care for her...so sweet! Tyler said "I don't want her to go to school I want her home with me". I had to explain to him how much she needs to go to school. He did great letting her go. Leah had a happy look on her face when she was getting loaded in the van...heaven only knows how much I needed to see that!

Much better!

Leah is doing much better! Her fever is all gone...just in time for her first day of school this week.

Love/Hate fevers!

Leah has been battling some horrible amounts of seizures these past two days. Lots of seizures before sickness is Leah's life. Inflammation causes seizures. So, of course we wait for the fever to hit. It came yesterday afternoon...24 hours after seizures begin. Her eyes didn't work at all for that 24 hours of seizures...so sad! The good news is...once her body starts fevering...seizures slow down and her eyes return to normal. We have a love/hate relationship with fevers. Hate the 24 hours before but love how she is while fevering...I know this sounds crazy but she is alert, her eyes work perfect and she is so active- legs and arms move a lot. Doctors believe what she has is autoimmune. Ibuprofen is our best friend right now. Seriously! What child looks and acts better when they run a fever. She truly is a mystery girl!

Our U of U girl!