Category Archives: Uncategorized

Mar3

Brooklyn’s Birthday Wish

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Brooklyn’s Birthday Wish

This year, in lieu of gifts, we are asking that all Brooklyn’s friends and family visit lily-grace.com and share it with as many people as possible. We want people to be educated not only on this disease but educated on children with special needs as well. Just yesterday, I made it difficult for a young boy to pass in his wheelchair because I was ignorant to his needs. Lily and her family have taught me so much about love, being kind, being aware of whats going on around you, being selfless, and not being judgemental. Everyone is different. Everyone has different experiences and struggles. I encourage you to do one random act of kindness for a stranger or a person in need and see how it changes your life. All donations are appreciated and have proved to make a huge difference in this family’s life. Thank you for your kind and giving hearts. People like you make this world a better place.

Mar3

MRI

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MRI

Lily had her first MRI yesterday after starting Afinitor. She did well minus a small blood pressure drop due to anesthesia during the procedure. Momma said she did have to get extra IV fluids as a precaution. Anxiously waiting for results! We are praying that there is some change even if it is minute. However, Lily hasn’t been taking the Afinitor very long so we will patient to wait for the miracles to come! Thank you for sharing Lily’s story.

Feb25

Preschool

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Preschool

Lily has recently started “in home” preschool. Due to her new medication, Lily is immunocompromised which means she can get very sick easily. A common cold could even be dangerous for her. She is being introduced to the “basics” and will also practice things like holding crayons, recognizing pictures, etc. It is such a blessing to have Lily well and taking leaps and bounds forward developmentally. She is currently making a huge effort to learn to crawl. We just know Lily WILL walk someday! Thank you for taking some time to view Miss Lily’s site and learn more about her!

Feb25

Thank you.

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Thank you.

Dear Whom it May Concern,


I want to express my deepest gratitude for your donation for Lily’s Kidwalk.  I’m not sure if you know how much this means to us, so I want to tell you what a difference you have made in a our little girl’s life.  Lily just turned three years old and is unable to walk, talk, or feed herself.  She has tuberous sclerosis, a rare disease that can cause tumors to grow in any of your organs.  Because of this she has over 13 brain tumors, and as of late, we learned that one of those tumors is growing and becoming life threatening.  Fortunately, there is a new drug that she has just started that is shrinking those tumors, and we are very hopeful that this will help not only shrink the dangerous brain tumor, but help with her seizures (she has 1-4 every day) and cognition (she is like a 7-10 month old) as well. Lily is a medically fragile child and also has many other medical issues; however, we know that Lily can understand us and that there is hope for her to learn and have a great quality of life.

But these are not the only issues at hand.  As Lily grows, she must learn to put weight on her legs or her hips and bones will suffer.  Her feet will stay like a pudgy baby and it will make it even more difficult for her to walk.  Her development is behind, but her body is growing anyway.  With the Kidwalk, Lily spends a lot of time standing and strengthening her feet and legs.  We are also able to teach her to put one leg in front of the other.  She tires quickly, so the Kidwalk has a bicycle seat that allows her to sit and take breaks on her own so that she has fun in it and it’s not just hard physical therapy.  In just the short amount of time since you’ve helped us with this amazing piece of equipment, Lily’s feet are becoming more flat and strong.  Her legs have gained so much strength that she’s able to stand for much longer, she’s pulling into a kneel position, and even attempting to crawl.  All of these advancements are because of the Kidwalk, and more importantly because of you.  

This disease is scary and can sometimes make us feel so alone with the frightening things we deal with.  But your kindness shined a light on our daughter and our family.  That someone cares too, that we are not alone, and that we have angels around us.  I wish that there were better words to express the joy and hope that you have given us, and the feeling we get when we see Lily doing better because of your selflessness and empathy, but there are no words that enter that deeply into our hearts.  I will be forever grateful for your kindness and may God bless you at every turn.

All my humble thanks,

William & Heather & Lilliana Grace Brewster

Dec5

Medication Issues

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Medication Issues

Lily’s physicians are trying to solve the mystery of what is causing Lily to vomit several times a day for the past 2 weeks. With Scott and Heather’s close watch, they have related the vomiting as a reaction to the Lamictal (seizure medication) she is taking. Unfortunately, the neurologist is also ruling out hydrocephalus (a very dangerous condition that is caused by brain swelling). Please pray for Lily today to feel better.

Nov4

Miracle Drug

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Miracle Drug

 

Lilliana will begin taking a new drug called Afinitor in 2 weeks.  We are hoping and praying this will be Lily’s family’s miracle drug. There is a possibility that this drug will shrink ALL of Lily’s brain tumors. However, there are several risks and side effects related to taking this drug. You can read more information on this drug at http://www.afinitor.com. Afinitor is the first and only FDA-approved therapy for patients who need treatment but aren’t candidates for curative surgery to remove their tumors. This is very exciting for Lily~! Please pray for a miracle! 

P.S. We are 1/4 of the way of meeting our goal for Christmas to raise $800.00 to make the first payment on Lily a KidWalk~*! Thank you so much for your donations. We appreciate you and your loving hearts!

Oct27

Operation Christmas

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Operation Christmas
This website is being built for the Brewster family. It is a Christmas surprise for them. They recently moved to Puyallup, WA (close to Seattle) to be close to a physician that specializes in Lily’s medical condition. Aaron, Brooklyn and I will be flying to Seattle for Christmas so that they don’t spend it alone. We can’t wait to see our dear friends that we miss so much! Our goal before December 22, 2011 is to raise at least $800.00 to make a payment on their daughter’s future kidwalk. It is very important to them for Lily to have this to aid in her process of learning to walk. Lily will be 3 years old in January and she can not crawl or walk. Her seizures have kept her from meeting these developmental milestones. However, she was able to “try out” the kidwalk while she lived in Tulsa. Therapy Source for Kids loaned the kidwalk to Lily for about a month. Due to the move, Lily had to give her kidwalk back. Please help us reach our goal of $800.00. If all our friends, family, and co-workers make even a small donation we believe we will reach this goal and give Lily the best Christmas present ever! Not only will she begin building muscles in her legs that will help her walk, her parents will just know they are loved and have a little more hope! Thank you so much for visiting! Please take a second to learn a little more about Lily’s disease at http://www.tsalliance.org