Rare disease day

It's  rare disease day. I am so grateful for my rarest of the rare Lila. What an angel she is in my life. I am grateful for her and for the experiences she has brought along with her. So many amazing wonderful moments and people have enriched my life because she is in it. Love her and the other "rares"out there. 

Sitting

We've got a sitter. 

First day of primary

Lila was finally well enough to attend primary. She Loved singing time, her favorite song was "I'm all made of hinges". And we especially adored our teacher, sweet grandma patsy.  

Elmo

Lila has a new love. She adores Elmo! We have been watching seasame street and everytime Elmo's world comes on or Elmo is part of the  segment she starts to  smile and laugh. I thought it was just a fluke at first but she has been pretty consistent in her smiles. This is huge! My baby has started to love something on her very own. It's been so fun. 

Six months

My love is six months!!! How?!?! She is 17 pounds three ounces.  75 th percentile for  weight and 50th for height.  

She just brings so much joy. 

Six months!!!!

Ruby's church accessory

Happy valentines!!!

Happy valentines day!!!!

I love this holiday. Getting to celebrate the loves of my life. 

Lila got a valentine from her friend leila. 

Trying to show their valentine shirts fr grandma and grandpa. Ruby was way to interested in Lila. 

Valentine family selfie. 

My heart belongs to these two. And a cute boy named Quinn 

Throw back Thursday

My sweet sister sent me these pictures today. It was crazy to look back. This was almost four years ago when my baby was really just a baby. Such a hard and beautiful time. I was just realizing that Lila was different. I had no idea how much. If I did I would have probably given up on life right then and there. (It's good sometimes to have things come slowly) I look at these pictures and can't help thinking just how far we have come. So many horrible tearful  nights, and yet also nights full of laughter and sweet snuggles. 

I remember this night well. Quinn was gone and I went to my sisters to try and wrap my head around what was going on. You can see that I have been crying. I wanted to desperately believe that Lila's new glasses were the answer but in my gut I knew that they weren't. 

Such sweet caretakers 

Poor Lila. Being force fed. Little did we know the damage we were doing. It was so frustrating. 

Getting to know you

Ruby has just started to really notice Lila. She wants to play with her. Unfortunately she want to grab, pinch and eat her. We will be working on gentle and soft for a while I am sure. But Lila loves it. I didn't catch the really cute ones of both of them smiling but they like each other. 

Oops. A hand in the mouth 

Lila laughing after pulling ruby away for being too rough. 

Matching toes

Matching mama and baby toes 

Waiting up

Waiting up till eleven for the last dose of iv antibiotics is hard. 

Valentines day date

Quinn and I got to go on a valentines day date. Dinner and ice skating. 

We had loads if fun. I am so grateful for my valentine. 

I have wanted to go skating with Quinn for ages. He showed off his hockey skills. So cute. 

Couple date night

Fun night of sushi with my old neighborhood friends and hubbys. 

The Harris's, the skenes, The fuessels, the Jorgensons and the pearsons. 

Great couples. 

Ruby's (almost) six month pictures

At the end of the session I asked if I could put Lila next to Ruby. I hadn't planned on it. Lila was not even in a cute outfit or had her hair really done but I am so glad I did. We caught a few smiles. 

s