Thank you everyone for your prayers and messages of love and support for our sweet Lily girl. Thanks also for being so patient for an update. •Lily is still in the PICU on an extremely high setting of oxygen. Half of her left lung was basically non-functioning and the high flow of air is helping push air to promote movement. •They switched up her antibiotics this morning for the third time to treat her for full-blown pneumonia as opposed to just walking pneumonia (but she does has that too) •She is more stable, but still very fussy. •She hasn't been allowed food or water by mouth and she asks for water every couple of minutes, so that has been challenging and frustrating for everyone. This morning they did allow her to try to eat and drink to see how she handles it. She had a few bites of eggs and some juice-not sure if she will be able to try to eat lunch. •They're working on moving her back to the pulmonary floor this afternoon-so that's a step in the right direction.
Thanks everyone for your prayers and love.
See this sweet face?
This was yesterday afternoon. Just a couple hours after this, we found ourselves at the hospital ER getting oxygen, breathing treatment, IV fluids and antibiotics. Lily has been fighting crud all week and we had been watching her closely-she saw her doc on Thursday and her o2 levels looked good.
She was transferred from the smaller satellite campus hospital to the main campus last night and John came down to stay the night with her. I came home with Haven to stay with the kids.
She has pneumonia and is on a very high setting of oxygen to help her lungs start moving air. This morning, she spiked a crazy high fever and they moved her to the PICU.
Please pray for her, friends. She has such a high tolerance for this stuff and puts up a good front when she is sick (as shown in pic!) Thanks in advance. Our girl is a fighter. #lilyanaelaine#lilyanaslight#downsyndromeisbeautiful
People with Down Syndrome most often have ligament laxity and low muscle tone, both of which lead to excessive flexibility. When I️ practice Yoga, my little sister, Corrinne, likes to remind me that she is much more flexible than me ! 😇😇 How humbling she is ...in so many ways. Yoga is for everyone !!!!!
This mischievious smile means the world to me.His laugh is infectious and he knows when you need a hug. He is the most wonderful thing ever happend to us and for those who dont know, down syndrome is not an illness, its beautiful..it is full of love,cuddles,smiles. that extra 21st chromosome makes him extra cute and lovable.dont ever miss a chance to hug a downsyndrome child to feel the magic yourself.🤗😇
* Books *
Even though she cannot read (yet) she has a love for books, a lasting kind of love.
A few weeks ago she started picking them off the shelf and lining them up in tidy rows. Looking through each one and talking to herself about the pictures. I know that she will read one day because she wants to.
Anyone have a favorite children's book or author suggestion? Right now Dianna is always bringing me Margaret Wise Brown books: Color Kittens, Big Red Barn and Home for a Bunny. I am always on the look out for more books that will become favorites.
*Thankful is not a word we Dutch use easily but thankful is something I feel for this right here, a beautiful video made by @cedarsstory
*Thankful Downsyndrome is such a huge part of our lives. It might not always be easy but it defines me as a person and I honestly don't know who I'd be without *having 1 child who happens to have Downsyndrome is a feeling that somedays is too heavy to feel but he made me a mom and for that I am forever thankful 💙