Playing with service dogs!

Leah got to play with service dogs at school. Her teacher said she didn't have any seizures so she was very alert and loved it. The dogs licked her. I am sure she loved it. What a fun experience for her! She had great days at school yesterday and today. No seizures! I am still working on getting her suction machine. Hopefully it happens any day now. The school really wants it so they can suction her there. I always feel bad because she struggles to cough and she just can't handle all her sometimes. 

Jazz game!

Leah got to go on the Utah Jazz basketball court and stand (she was in her wheelchair) with the players during the National Anthem last Monday night. It was awesome! She helped represent children who have rare diseases or who are not diagnosed. She was with the Utah rare organization. We are going to the Utah State Capital tomorrow to help raise awareness for Utah rare and Aware of Angels. Leah will sure steal the hearts of the people of the Legislature :) I will post pictures. 

New shoes!

I found shoes for Leah...its a miracle!!! I have been trying to find shoes for Leah for months...okay maybe a year...seriously! It's been impossible. Her muscle tone makes it difficult, her old broken ankle :( makes it difficult and frankly she freaks out when I try and put shoes on her. It's the only time she moves her legs and feet. She really hates them. These ones in the pic that I found are for fun. But she does need some very sturdy athlete type shoes so she can go in her stander at school. Her PT said her hips are ready for the stander now. Yay! She hasn't been in a stander for a long time because her hips weren't lined up. Now it's time! Her PT said to go on Zulilys and order lots of pairs and then send back the ones that don't work. Humm...I guess I am going to have to do that. 

Cough?!!

Leah is better. I am not quite sure what all her coughing was on Friday. I thought for sure she was getting sick. She wasn't sick she was just struggling with something in her lungs. She kept coughing up clear think mucus- sorry I know that's gross! Anyway, the cough is gone. I guess she coughed up what she needed to cough up...very interesting! We are taking her to an orthopedic doctor in a couple weeks for her scoliosis, her doctor thinks her right lung is being pressed on. We are taking her up to Shriners hospital. I am kind of excited to go there. I have heard nothing but wonderful things about the doctors there. I will keep you updated. Also, we are close to getting her results from her Xome genetic testing that was done back in June of 2014. 

Hope everyone has a great day! 

Leah has a cough

Leah started coughing today! Which explains her bad day yesterday. She always has bad seizures right before sickness comes. Hopefully it is just a little virus. Her pulse ox is fine so that's good. She has had trouble with her secretions the past few days. I have been very concerned because she tends to choke on her saliva. I called Dr. Hornyik to talk about getting a suctioning machine. She is out of town so I guess we will wait until Monday to chat about it. 

It's never too late...

I saw this quote today. I love it! I have learned it's never too late to make the best of it! 

A special gift!

Leah received a very special gift! Charlee Nelson's family donated Charlee's wheelchair to Leah. We are so honored that they chose Leah to have Charlee's chair. We had such a great visit with them this weekend when they brought her chair to us. As many of you know, Charlee passed away almost a year ago from Batton Disease. Charlee's law is named after Charlee. It allows individuals to bring a hemp oil across borders to treat seizures. We are so very grateful for this law. 

Thank you sweet Charlee! We love you and will always remember you. 💜

Leah got an aide!!!

I want to share some news that I am so happy about! Leah finally got an aide to ride in the van with her on the way to school. I am so happy I am crying right now! I know this may sound very minor to some but I have fought and fought to get an aide to be with her and everyone just kept telling me that Leah isn't bad enough for an aide to be with her. In my opinion that was just an excuse- I think they just didn't want to pay for an aide. I have held my breath hoping she doesn't choke or have a bad seizure- knowing there is no one to help her when putting her in the school van for the last six months. Well, the nurse at the school finally got involved and demanded it. I am now at ease knowing her aide is there to help her. Leah gave her aide a big smile when she saw her this morning!

Blog app???

Okay so I'm a dork! Actually a really big dork :) I have struggled to blog...In case you all haven't noticed ;) anyway, I really don't have a device to my name (except my phone). My children take over all the devices in my home. So I told my daughter Lauryn...I need and want to blog more but I never can get on a device, everyone is always using them. She said "umm mom you just need to get the blogger app". Haha! Why didn't I think of that?! So here I am right now on the blogger app. Are you all ready for me to do some serious blogging now?! Well not serious serious blogging because I am far from serious just more blogging. 

Brooklyn passed away this morning! My heart aches.

Here is Brooklyn's story:
http://awareofangels.org/brooklyn-undiagnosed/

Sweet little Brooklyn

I have to say I am really struggling today. I found out earlier today that a sweet little girl named Brooklyn is very sick and is expected to not make it. Brooklyn has seizures just like Leah. Brooklyn does not communicate or move just like Leah. Brooklyn is undiagnosed just like Leah. Brooklyn and Leah are so much alike. I met Brooklyn's mom Britney about eight months ago and I felt something...a definite bond. Just knowing that there is another mom out there that is experiencing the same thing as me...just knowing that there is someone out there that understands exactly what I'm going through with Leah because she was going through the same thing. Brooklyn is about to pass away. I am feeling very sad. It has struck me harder than I thought. I have to admit I am scared every single day of losing Leah. I hugged and kissed Leah today and just cried. Life so precious!

I am so grateful I met Britney. Brooklyn is truly an angel!!!