In the Hospital....

Charlee has been in the hospital since Sunday night. Her vitals have declined in the last couple weeks. She has been having bladder retention and constipation which raised concern to bring us in. We got her cleaned out and now we are starting slowly on her feeds again. The big question is if she can return to her baseline or if this is a progression of her disease and possibly the start of end of life. The next few days will tell us a lot. If it is progression she will have a hard time with her feeds, continue to retain and get puffy and will have more agitation. We'll know then that her body is probably slowly shutting down. Jeff and I have had an emotional week. We've had a lot of hard talks and hard decisions to make. The nurses, techs, doctors, music therapy girls and end of life team here have been most amazing and made this hard time very special and easier for us.

A Valentine...

For Valentines Day Cashlee wrote a note to herself and to us "from Charlee". Wow!! What a thoughtful way to assist her sister in expressing love and gratitude, since she can't do it for herself! The bond between these two is stronger than ever. I love my girls so much and am thankful to be their mom!

Only a Year....

It's been a year today that we received the most devastating results imaginable. Although it was a relief to finally know what was happening, it was the news we hoped never to hear! Our baby girl was diagnosed with Late Infantile Batten Disease. A terminal genetic disease that would take her life in a few short years. The news hit me like a ton of bricks. I cried like I've never cried before. As I held Charlee in my arms and the tears just rolled down my face, she wiped my tears and stroked my face. It was like she was saying...you finally know, and everything will be okay. What an emotional year it has been. She's lost so much. Her ability to walk, talk, see, eat and sit. Her trunk and head control are also gone. But her ability to love and affect peoples lives will never cease. She is in our hearts forever. I know her mission here is to touch all of our lives and to teach us just how precious life is. As hard as it's been, I'd do it again in a heartbeat. She's taught me patience and unconditional love, to enjoy what you have because you can lose it in an instant. Don't take anything for granted. Make time for your children and always tell them you love them!! I love you my precious angel Charlee! (These pics are just to show you the change in one school year.)

Poor Baby Girl....

Our poor baby girl is fighting off a lot of different things causing her to sleep most each day and night. I finially go a semi smile today before she fell back asleep again. She has pneumonia, UTI, thrush, fever, high blood pressure and her heart rate has been elevated the last few days. I know she's strong, a true fighter...please pray for peace and comfort for her. Thank you!

Sleeping Beauty

You know your baby is sick when she sleeps through anything for so long. Please pray she gets over her sickness soon and regains her strength soon too. Thanks!

Most People Only Dream of Angels

"Most People Only Dream of Angels. We Have Held Them in Our Arms" 

I saw this quote this weekend and couldn't help but think of our situation- we are so blessed to be touched by an Angel everyday we spend with Charlee! We love you baby girl!

Charlee on her 6th Birthday

A sweet new video about Charlee's Journey, made for her 6th birthday by her loving aunt, Jolene.