Cai

This gorgeous little boy is Cai.  He lives in Wales. He has Vici  syndrome. Yesterday I got to talk to his wonderful mom Micaela. We talked for over two hours about our beautiful angel children. It is amazing how much Cai and Lila are alike. It has been so amazing to meet Micaela and her wonderful family. I had not previously met another family whose child was still alive with Vici  syndrome (well, I did meet a family whose child had a variant form) and especially since he is one year older than Lila, I didn't know of any who were older. He has gone through so many of the same experiences that we have. He also has gone through experiences that I believe that we are just starting. It was so great to talk to Micaela and hear what the doctors in the UK are doing for Cai and how that might benefit Lila. It was also fun to hear about his little personality. In some ways he is far less affected then Lila. He even learned how to wave goodbye at school! It is just amazing to me that he and Lila  are considered on the less severe side of the syndrome. I guess it just reminds us how lucky we are to still be able to cuddle our babies. It truly has been a sweet gift to meet this family. 

Home

My little love bug got to come home. She does have another picc line so we will be doing the IV antibiotics from home. But at least we are home.

This stay was very emotional due to the fact that the doctors kept asking us what our plan was for Lila  if there was an emergency. We were asked on several occasions to sign a do not resuscitate order. They went over different scenarios with us on what measures they would use to save her life. It was very hard to think about. I hope that when the time comes for lila to leave me that it can be peaceful and not a A flurry of doctors and machines.  Hard to imagine. 

Ruby was happy to see her sister. As soon as she saw Lila  she grabbed her hand

Face time with daddy.

Ruby is loving face time with her daddy and sister in the hospital. I love her expressions in these photos I snapped while we waited to connect. 

You may have noticed she is sans helmet. It gave her a huge soar! Poor baby. It has to heal and then we will try again. I hate the helmet 

Hospital. Again

My baby is in the hospital again. Being in the hospital is such a stressful situation. Especially right now, not living in our house and needing every extra moment to fix it up so that we can settle in. But the hospital is also beautiful. It reminds me that my little one is still here. Despite all of her complications she's hanging in there and staying with me. It also shows me just how lucky I am for wonderful supportive family and friends. Quinn has been amazing going to work and then quickly running to the hospital to sleepover with Lila. We've had grandparents sit by her and aunts. We are lucky that so many people love Lila and are willing to drop everything to sit with her so that she doesn't have to be alone while I am keeping up breast-feeding baby away from a germy hospital

Nothing better

Nothing better than  a sleeping baby cuddled up to you

Happy half birthday and a hospital stay

Happy half birthday to my gorgeous baby Lila. It is definitely a reason to celebrate. Every day is a blessing with you. I wish you were feeling better and not in the hospital once again. But we need to get you better so we can enjoy more days with you. 

Flashback

My dear friend Michelle sent this to me today. It's a pic if a pic  so not the best quality but I love it! This was ten maybe eleven years ago....

Grateful this girl is still in my life. A true friend. 

Proud

Someone was proud that they took off their sister sock. Or maybe it was just happiness because she was on a break from her helmet for an hour. 

Hate

Ruby hates her helmet. Heaven help us it's going to be a long three months. 

Helmet

 I guess we will need to think of a new nickname for Flathead ruby. 

Seriously though, this poor little kid has to have this helmet for three months. She's a little flat in the back. It's funny, if this is been my first child this would have been so traumatic but this seems like nothing compared to what Lila's  had to go through. I just hope her head is nice and round after because that piece of plastic was one pricey penny! 

I feel loved

Ruby took a particularly long time to get down for a nap. I thought Lila was snoozing but when I walked in the room she was awake and had a smile on her face, her eyes were trying to find me, she had heard me walk in. When I started to talk to her she started to laugh and has had a perma smile since. I feel loved. I love the moments when I can tell Lila has missed me and is so happy that I am around. 

Five months!

Loving mamas kisses

Lila was loving my attention today. I tried to snap pictures as I was still giving her kisses. Some didn't work out but I caught a few cute shots. 

I went to special needs support group the other day and met a mom whose little girl is as disabled as Lila, but who is worse off because she can't smile. I was immediately overwhelmed with gratitude. Thank heavens this little angel can still smile and laugh. We are lucky. It fills my soul with joy. 

Dreaming of sunshine...

First taste of Apple

Appropriate laughter

I know I have talked about how Lila laughs at appropriate times before but it always amazes me. Who knows how much this little girl understands but at times I think she knows exactly what is going on. 

This morning I was trying to sneak in a quick workout while ruby took a nap. About fifteen minutes into my video I heard her screaming. I went and got her and put her next to Lila on the floor and started to get toys for her to be entertained enough to make it through the rest of the workout. I turned to Lila who was just sitting there and said, hey do you think it counts if mom just listens to her workout? To which Lila responded with a loud laugh, a smile and kick. I love this kid. I feel like she's my partner in day to day life. 

Sister love

Long hair

Look at my baby with her hair combed down. She looks so old! It only stays down when sopping wet. She looks like a child. No longer my baby. So sad. 

Quinn says she looks like a 1970s female vocalist. 

Instead we do cute ballerina buns. I can't wait to see my girl dance. 

And so it begins

Fixing up our new house. This might take a while. 

Playing

Wow

Such a miracle. I am in awe that ruby can hold her head up and that she can roll