Exploring Education

Lily will be starting preschool next week!!! Since she is unable to go to a regular preschool at this time, we will have a teacher that comes to the home twice a week to assist in teaching Lily from home.  We are setting up an area of our office to serve as Lily's preschool classroom.   We are so excited that she is starting school!!! We're excited for all of the new discoveries and lessons that Lily will learn, and the new teachers in her life.  We will be doing a lot of crafts, reading, songs, field trips...essentially most of the things that you do in preschool!! Lily will also be gaining a new speech therapist and an additional occupational/physical therapist through the public school system that will come to the house.  They will be more education focused, rather than the therapies we get that are daily-living-skill focused.  For example, the occupational therapist may work more with using crayons than with eating.  I am taking home school very seriously and am looking forward to get her on a regular schedule.  I would eventually like for Lily to go to school outside of the home because I think the social interaction would be greatly beneficial.  Until that day comes, we will school from la casa. Also, Lily has a play date every Friday with our neighbors 4 (almost 5) children--they are little angels...such sweet, adorable, well-behaved children that have incredible parents, so I feel very lucky to have them right next door!!!  With this change in Lily's schooling and her turning three years old, we will say good-bye to one of the greatest therapists Lily has known.  She has changed our lives and taught us so many things about helping Lily that it is with a heavy heart that we lose her in our weekly life.  Because of her, Lily knows how to communicate her needs and wants and has given her a happier life.  I believe the universe shines on people that give that kind of love to the world around them.  She will be in our hearts forever!!

Lily and Mr. Tiki

That's Mr. Tiki the giraffe.  He goes everywhere with her...he sleeps with her, goes in the car, goes to the hospital.  He's really become a member of the family. (We actually have two of him...you know, just in case!)

Starting the Afinitor

We started the Afinitor on January 21, 2012. I was so nervous to give it to her; it felt like taking such a big step into the unknown that literally my hand was shaking while giving it to her.  Making decisions as to whether to have brain surgery or a chemo drug is absolutely overwhelming at times.  I hope that we have made the right decision--only time will tell.  However, over the past 2 days, Lily has done remarkably well on the drug, and we have not seen any side effects.  She has been a little bit fussy, but I think this is due to her sleep getting out of sorts during the past ice storm where we lost power for a couple of days.  She is eating well, doesn't seem excessively tired and is otherwise the same.  She had a brain cat scan in December and she will need to have a brain MRI every 3 months to watch the tumor and ensure that it is shrinking.  We have been on lock-down in the house trying to keep her from getting sick so that we could start the drug.  We both have cabin fever and are ready to get out a bit and explore the world.  On another note, I would also like to thank the people in our lives, family and friends, that have helped us.  We have a new chair in Lily's room that has been a life saver on many occasions; we have had help with really old medical bills; we have a new piece of recreational equipment for Lily that will help her (and us) tremendously...and to those of you that listen and care--it means so much!!  To you, and you know who you are,....I thank you from the bottom of my heart.  You cannot take away our struggle, but you do make it easier to push against the wind.

Walking On Sunshine

Lily's Kidwalk is helping her to strengthen and prepare her body to walk, and she is really doing well with it.  Her occupational therapist has been guiding us with exercises that will further her gross motor advancements.  We make sure that the Kidwalk is super fun so that she's getting strong without making the work an unhappy experience.  She is about to turn 3 years old, and just this weekend crawled about 2 feet!!! This is absolutely amazing to us and a lot of this has to do with the strength that she's gaining with the Kidwalk and the changes in her medications!!  Now when we use the Kidwalk, we are not constantly reminded of the large outstanding bill that accompanied it!!! Thank you to Alicia and Aaron for getting a generous donation from a church (I would like to mention who they are; however, I don't yet have their permission).  Thank you all for believing in our Lily!!!

Cutie Pie

I love you Lily. Momma will do everything she can to make sure that your 2012 is full of joy and healing! You are my everything and I adore you!

New Years 2012

This is how I started 2012--- laying on the couch watching the fireworks over the Space Needle!!! I just wanted a full night's sleep for New Years!

Pacific Science Center in Seattle

Zoo Lights 2011

We had so much fun with Aaron, Alicia, and Brooklyn at the Point Defiance Zoo & Aquarium at night for the Christmas lights! Lily and Brooklyn really seemed to enjoy it, and it was a great Christmas treat!!!

Christmas 2011

Hospital Stays 2011

In 2011 Lily was in the hospital in July for her annual EEG and brain MRI.  Then she had ear tubes (her second set).  Followed by urinary reimplantation surgery and two weeks later, a hernia surgery.  Then she was admitted to the hospital for vomiting and long seizures.  This does not include the multiple brain MRIs, the Cat Scan, the kidney ultrasounds (x2), a chest x-ray, so many blood tests I can't count, the regular pediatrician appointments, the 3 ENT appointments, the ophthalmologist, the dentist, the multiple urology doctor visits, the many neurology doctor visits, occupational / physical therapy, speech therapy, 3 emergency room visits, and 2 ambulance calls. And through all of this, our sweet Lily girl still has a genuine smile, but thinks that anyone that approaches her is a doctor or nurse.  It takes her awhile to warm up and trust that you're not going to poke and prod her...and if you just happen to keep a stethoscope around your neck--forget it!!!