Saturday, November 30, 2013

Poor girl

My poor sweet baby. She has so much going on this hospital stay. She has an ear infection, Pseudomonas, pyelonephritis and parainfluenza. It's pretty safe to say that she is horribly miserable. For some reason her bladder is not emptying. They're having to cath her to help her with that. I'm really nervous because another Vici boy has the same problem which means that we might have to be doing this on a daily basis from now on.  It just seems like her complications keep piling up. I love this little girl so much. I hate to see her suffering.

Friday, November 29, 2013

Inpatient again

My baby is inpatient again at primary children's hospital. She has parainfluenza in her lungs. Please remember us in your prayers again, this is the sickest I've seen her I think.

Day after thanksgiving

I feel like the day after Thanksgiving is a holiday in its own right.  We go get a Christmas tree,  decorate it, watch movies, spend time together. we were even going to go meet Santa this year with the Make-A-Wish kids. Unfortunately lila had to go to the ER with dad. So Ruby and I are trying to get into the holiday spirit without our best friends. We sure miss them.

Thursday, November 28, 2013


Happy Thanksgiving! 
Lila is terribly sick so the girls all stayed home and hunkered down. It was sad to miss the festivities but it made me extremely grateful that Lila is still with us. Whenever she gets sick I have to face the reality that she could leave me at anytime. It also made me so grateful that ruby is healthy, happy and developing normally. I have so much to be thankful for this year! 

Ruby and I playing while Lila slept 

Friday, November 22, 2013


Today while feeding Lila lunch she had a big seizure and knocked the bottle out of my hand. I yelped from surprise and then asked Lila if she was OK. She started to belly laugh, loud full body laughter. Which made me laugh really hard. We both sat and laughed with each other for about a minute. It was one of those sweet moments I don't want to forget.

Wednesday, November 20, 2013

Playing with glow sticks

Had so much fun with our Halloween glow sticks from grandma! 

Monday, November 18, 2013

Sunday, November 17, 2013


Just like a typical big sister Lila thought it was hilarious when she hit her sister in the face. Good thing Ruby didn't seem to mind

Cute remy

Cousin Remy loves Lila. He always wants to play with her. It's adorable. 

Saturday, November 16, 2013

pretending we are professonials

my girlfriend LaRisse and I decided we wanted to save money and try and do our own family photos for Christmas cards this year. So we pretended to be photographers. We caught a cute smile from Ruby! 

Friday, November 15, 2013

Lila's echo

I got a call from Primary childrens today. They said that Lila's echocardiogram came back and there were some changes from her last one. They said that it looks like her heart is functioning 29% less than it use to.  It also looked like her heart valves were dilated. Oddly enough it went to the ENT doc so they also said they couldn't really interpret what that meant and to call cardiology to set up an appointment. It is always so weird to receive news like this.  I know its coming but when they finally tell me that it is happening it feels like a bad dream. I knew heart issues would arise, (our friends Vici child died because his heart valves were so dilated that he couldn't pump blood anymore) but a small part of me thinks that maybe Lila is immune to the severe vici symptoms.  I may be paranoid but I feel like things are starting to build up. We added cardiology and nephrology this year, potassium medicine and still can't control Lila's ever increasing and sad seizures and suction is a constant issue. I am a little nervous. I still need Lila. She is doing much more good to me than I am for her and I feel like she is my buddy, my ever loving, patient and kind friend who I share my day with. We are in this adventure together and I can't imagine it without her.

Talking to mama


The real estate company came and took professional photos of our home. I wanted to keep them for my own scrapbook to remember our house someday. So don't mind this post, this is just for me.  Unless you want to buy it.....

 I had to take down all my kids photos, or as my real estate agent called it my "shrine". Yep I love my babies.

Thursday, November 14, 2013

Are you ok?


Guess who just rolled over on her side? It may of been a fluke, she may have just been following her legs that were in the air. But we've got to document the first time! 


The little lady went in for Botox injections today. They Botox her saliva glands hoping that it will help with all her "gunk". I hope that this is the solution for her that she can have a Comfortable winter. 

Wednesday, November 13, 2013


Quinn and I have decided to put our house on the market. It's with incredibly mixed emotions. We've been in this house for almost 8 years. I've brought home my babies to this house. It has definitely been our home and our place to grow and learn. I hope that who ever buys it next will love it as much as we did.  If you know anyone who is interested let us know.

Monday, November 11, 2013


For the last couple of days we haven't been finding cubbie in her usual spot. She is loving Lila's bed. Bad dog. But kinda funny 

Friday, November 8, 2013

Story time with mom

Lila was loving story time tonight. Listening to her sister talking along with mom. 

Little Picasso

Here is Lila's artwork from preschool this morning. Since she is so immunocompromised Murray school district has decided to send someone out to us for Preschool once a month. I have never had artwork on our fridge. I am one proud mama