During this experience with Lila I have always said that a blessing that we have received is to meet amazing people. Two of those people is Nikki and Callahan. They are such a great couple. Their daughter Eliza has a rare neurological disease called MLD that is degenerative. They have really shown me what it means to take a trial and turn it into something positive. Nikki stared Eliza's library and Callahan started team give, a charity to help those with neurological disorders. Nikki has been so supportive and kind to me and has really helped me deal with Lila's situation. She reached out to me when she learned about Lila and it has made such a difference in my life.
They had us over for dinner one night and the image of Callahan and Quinn sitting on the couch still makes me teary. Callahan was holding Eliza and Quinn was holding Lila and they were talking about how much their girls had their hearts and how special they were. There is just something about a dad holding his little girl, especially these sweet angel kiddos, that tugs at the heart strings.
Callahan was in a cycling accident this weekend and suffered a spinal cord injury. At this point he can only lift his arms slightly and move one leg a little bit. His hands, fingers, feet, toes and leg can't move. I am putting this on here (I hope Nikki doesn't mind) because I really believe in the power of prayer and have been touched by all those, even those I don't know, who have prayed for my Lila.
You can learn more about Eliza and how Callahan is doing here
Tuesday, June 14, 2011
28
in case you can't read it, it says: I may not have millions or very much hair but Kristi my darling to have and to hold you leaves me with no cares. (notice in the last picture I am looking at Lila saying "oh Lila" and Quinn is saying "no cares here")
Robyn made me this beautiful pillow. She is so talented
Do you think it says something about me that my family always picks out princess themed cakes for me even though I am 28 years old? hmmm.....Thanks mom for getting me my favorite! You always make birthdays special.
I had a great 28 th birthday yesterday. Quinn decorated the house with balloons and a comic strip (blogger is not putting pics in order for me lately) that was adorable! He brought me flowers, gifts and took me out for sushi, Yum!My family celebrated two weeks ago with my favorite dinner. (sorry dad, turkey again!) Thanks so much mom, thanks also for spending the day with me yesterday! The Kimballs had dinner for me and Jonah on Sunday, once again a favorite. Thanks so much everyone!
I think this was the first birthday that I actually felt kinda old. 28. Crazy. I thought I would be so much more "grown up" by now : )
its a love hate thing
Lila's therapist gave her this new toy. It's super sensitive to touch and it's incredibly loud and slightly annoying, but Lila can do it and she likes it. She concentrates very hard and pushes her hand down against the ball and it whirls the confetti around and plays music. i can't tell you how cool it is to hear it from another room, if I'm running to put stuff away I can hear her playing. We haven't had that experience before. It's pretty wonderful.
Thursday, June 9, 2011
boy scouts
Our new vision therapist gave us this board that was made by the boy scouts. Every time I look at it I smile. I think of cute little kiddos like my nephews Ben, Josh, Nick, Jonah, Kimball and Eli putting it together for the visually impaired and it just warms my heart.
Vision Therapy
Our vision therapist Sherilyn was let go last month, for as far as I have been able to figure out, going above and beyond her job description. I am so angry at the Utah school for the deaf and the blind! They let go the best therapist with no explanation. Helping these kiddo's is her passion. I can't even tell you how sad we are. She was AMAZING!!! She did such a great job and we are trying to figure out how to keep her in our lives. She always had the cutest activities and was so positive and reassuring. I adored her. These are pictures that she gave me, she took pics every session and made them into a CD. We sure do miss her!
Thursday, June 2, 2011
rolled to her side!
While I was out running errands today Quinn called and said your daughter just rolled onto her side! I was so excited! Then this afternoon she showed me her new trick. Way to go Lila!
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