Liviana has always been very lovey but she has turned into a huge, smiley cuddle bug lately. When I pick her up from sleeping or just hanging out in her swing she immediately burrows into me, cuddles, smiles and snuggles in close. She is so unbelievably sweet. I wish everyone could see her big smiles and the bright twinkle in her eyes when she is happy. She is so amazingly precious. She is at that age where she will stop nursing spontaneously and look up at me and smile and coo. I could just eat her up.
I am working with her everyday on her exercises for her neck. The physical therapist was rather nervous about her having the hemivertebrae so she said we would not be aggressive with her 'in case' the neck issue was a result of that rather than muscular issues. Some days she does great and does not get too upset and other days she is quiet vocale about not wanting to do her exercises. I can see a little progress so far. Hopefully things will continue to improve.
Saturday Liviana and I went out on our first "real" outing. So far she has just been to doctor's offices and the hospital. We ventured out to the exciting world of grocery shopping. Within a few minutes of being in the store she started crying in her carseat. Luckily, I brought her sling and I put her in that, facing outward. I probably looked like a rather standoffish person because I could tell people were looking at her and smiling. I, however tried to avoid seeming like I was welcoming people to us. I figured that was easier than asking people to not touch her since I did not want germs spread her way. After about 6 aisles she no longer was happy facing outward so I turned her towards me, where she quickly fell asleep. My sweet girl.
Liviana is growing! I don't know her official weight but I'm sure she is over 10lbs, probably close to 11. I also have noticed in the last few days she seems like she is growing alot in length. Her clothes are getting too short for her and she is almost ready to move up in size. She is still, of course, small. Many, if not most, CDH babies are towards the lower end of growth charts. The often have a harder time gaining weight because they burn more calories breathing. As long as Liviana maintains a normal growth curve we will not be concerned if she is on the low end of the spectrum.
Now that it is beginning to warm up we will be heading out more for walks, to the park and the zoo. I think we are all beginning to go a little stir crazy so the outings cannot come soon enough.
I hope everyone is planning to watch the game tonight. KU has the chance to become the National Champions! Just typing that gets me excited. Our KU flag waves proudly here in Huskerland! Rock Chalk Jayhawk!
Now onto the difficult news. Sweet, beautiful Faith Grace Miles lost her battle with CDH on April 5th at 3:48am. She was just one day shy of 1 month old. My heart aches for her parents Amy and Steve. Please keep them in your thoughts. Sadly, another sweet babe, Drake Michel also lost his battle on April 6th. He was born on February 18th and fought so hard. Drake and Faith are surely playing together somewhere and smiling down on everyone. This is such a devastating diagnosis and it takes far too many lives. We are so blessed to have Liviana with us each and every day.