Our great friend launched a Facebook page for us since we are getting busier and need more assistance from Team Liliana to
I wasn't going to post this so soon but a great friend of mine reminded me that I need to get Lili's story out and have it heard. She deserves to keep smiling everyday!!
Liliana's liver is not listening to us... she has advanced in her liver failure. She has developed ascites in her belly. Her little belly button is currently an outie. We are giving her a medication, a diuretic, to remove the fluid from her belly.
Here is link for further details on ascites: http://www.emedicinehealth.com/ascites/article_em.htm
The ultrasound has reveled her lesion/tumor has slightly grown and she possibly developed another one on top of the original one so... July's annual MRI will be done in the next month.
But it looks like a liver transplant will be sooner than we hoped and prayed for. Either her liver will fail or the lesion/tumor may become malignant... I'm not sure which way I would like it go but its out of our hands...
We moved to a more middle ground area between Matt's new job and my job at Yale New Haven Hospital which is also Lili's transplant hospital. Don't want to move too far just in case.
Wish we could update you from the last ultrasound in Jan. but even we have not been updated. The secretary called and pushed her appointment to March- no news is good news? We try our best to stay positive and keep mindful that Lili can be just like another child. But any BA parent knows, it only takes one microscopic bacteria or virus to travel into her liver and we become new tenants at YNHH and our old friend "Pixie" comes back.
To continue our mindful "normal" child thought process, we decided to have Lili join a Play Gym, in March, to interact with children around her age. That way we can be present and have her be the toddler she needs and deserves to be.
We had a cold, no snow December. Lili had her second opinion appointment at Mass General in Boston, MA. We decided we are to stay the course as we have decided... keep giving her her medication to help bile flow and get an ultrasound in Jan.- no more MRIs!!! The second one, she had a hard time waking up. It was her fifth time having general anesthesia in less than a year.
December 20th: Happy One Year Post Kasai Anniversary!!!
Lili is walking around like she owns the place, oh wait she does! Haha. She is using a fork to eat. Loves "Teach my baby" matching card game. Likes to mimic our actions. She signing "milk", "more" and "bath". She says "ma-ma", "da-da", and "up". Liliana likes to "yell" and point at adults to look at her... and when they do, she smiles and becomes shy. With children, she marches right up to them to the point they back up and she just stares at them with a smile. She is our go-getter in your face girl.
Aunt Kristin, Jayden and Adyson drove all the way from Michigan to spend Thanksgiving with me. We had a blast!!
Lili has been a busy girl this month.
My story is finally available for all my friend and family to read. Currently I am doing good. I don't need to see my Liver doctor until Oct 30th and waiting to see what kind of interesting tests they are going to do about my lesion on my liver this month. BA is no fun but I keep smiling and showing them how strong I am by growing, eating solids foods (no tube feedings for me!) and trying to stay close to my milestones. I am really loving this baby walker except when a wall or something gets in my way. Stay warm. Love, Liliana