Friday, January 31, 2014
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.
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.
Ruby was happy to see her sister. As soon as she saw Lila she grabbed her hand
Wednesday, January 29, 2014
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
Tuesday, January 28, 2014
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
Monday, January 27, 2014
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.
Thursday, January 23, 2014
Wednesday, January 22, 2014
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!
Saturday, January 18, 2014
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.
Friday, January 17, 2014
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.
Thursday, January 16, 2014
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.
Sunday, January 12, 2014
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.