Her interactions with us, her ability to play with her toys, her expressiveness, sitting up with confidence, and so much more. She is so much fun to spend time with as she provides constant surprises and joy. Her favorite thing is to show off her "tricks", as her Mom calls them. Playing patti cake, shrugging her shoulders, raising her hands above her head ("How big is Lily...soooooo big!) are all examples of new things she learns each day. And her smiles and giggles are so heart warming.
On the other hand, Lily has worried us each morning as she has one of her "spells". Her heart doesn't provide enough oxygen, which leads to her gasping for air, becoming very listless, and finally falling into unconsciousness. We have discussed this with her cardiologists and have learned how to help her feel better to some extent. She eventually comes out of this condition and the rest of her day is pretty normal. But while this is happening, we are VERY anxious.
We had Lily's echo-cardiogram done last week and learned her heart condition is very much like the medical reports we received from China. She has a hole between the two chambers of her heart and a heart valve that needs repair. The condition is called Tetrology of Fallot.
The plan is to have open heart surgery in about 3-4 weeks. If all goes well, Lily should live a normal and healthy life. As excited as we are for the surgery to improve Lily's life, we are very anxious about the surgical process and the recuperation time.
Our other challenge with Lily is her sleep schedule. Either she hasn't adjusted to the time change, or maybe she is still grieving. Whatever it is, she has difficulty getting to sleep each night. We are working on getting her on a schedule. If we are not successful soon, Mom and Dad will fall on our faces from lack of sleep!
Nana Barbara has been such a huge support since we got home. Lily has taken to her so well, and they have wonderful play times together. Barbara has been so helpful in providing tasty meals for us and giving us time to be with Lily as she takes over chores such as cleaning up and doing laundry. Trooper and Misha have also learned to enjoy having Barbara here as she spoils them rotten!
Lily and Mommy snoozing
Trooper, Lily, Mommy, and Misha after a walk
Feeding Misha a cracker
Reading a book with Nana Barbara
5 comments:
Dear Pam and John and Lily;
Hello from another Xuzhou mom! It's been so wonderful seeing your trip and hearing all the news of Lily. I'm so glad to see all her progress! You are doing an amazing job with her.
It took my daughter a long time to settle into a sleep pattern when she came home too. One thing I tried (which helped me, anyway) was to take her out in the mornings to get the sun on her forehead, which is supposed to re-set your circadian rhythms. I also had to have her in my room for quite a while as she wasn't used to sleeping alone. It was also tricky because she was so excited to see me she wouldn't settle and sleep. She kept checking to see if I was still there when I sat beside her at bedtime. Eventually she would fall asleep holding my hand, but a few hours later would wake up and want to interact. So after trying everything I could think of she eventually had to go back to her room so I could get survival sleep. I hope you'll find something that works for you soon!
I will be thinking of you at her surgery time and sending you lots of support. My daughter only had cleft repairs to go through and it was awful enough, but I actually felt people's support that day and it has taught me to believe in it even more than ever. All the best to you all!
WE have enjoyed watching your journey to Lily so much. Thank you for sharing with us 'waiting'. Lily and your family will be in our prayers. Please keep us posted on her progress!
It's great to see how Lily is adjusting to being home! I love how she shares with her four-legged friends. :-) Keeping you all in our prayers for both restful nights and strength as Lily's surgery gets closer. Sending you lots of Bug Hugs from sunny and sweltering Florida!
--Robyn "Peanut's Mom"
patiently (???) waiting for our LOA
P.S. The quilt is just beautiful. What a treasure for Lily to have...you can tell that it was stitched with a lot of love!
Glad to see that you are progressing toward settling in together. Love the photos with daddy ;-) Will keep checking in on you as you work toward her surgery. Hope you feel the love.
And have I said "thank you" lately for our beautiful photographs? As we continue to tell our friends and family about LadyL, the story of your and John's visit is told and retold. Thank you is really not enough.
Hugs, Trena another luckyXZmom
Pam and John,
I want you to know that Lily Mei is still in the prayer circle for as long as she needs it. Finally I can see Nana Barbara being even more than a grandmother. Do miss her though not being here. Take care of her, too!
Love to all,
Auntie Anne
Palm Harbor, FL
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