Wednesday, Dec 23, 2009
December 23rd, 2009 Posted in Daily News PostDana and Chloe had a rough night trying to adjust to the new room and procedures of the new floor. They didn’t get to sleep until after 3 am. Then they were awakened at 7:30. Dana is trashed, completely trashed. To say she is hanging on by a thread is even an overstatement. With the help of Rev. Barb, I was able to get Dana away from the hospital for about 3½ hours just to try and have her be normal. She cried at McDonalds, she dragged through the Pottery Barn and she felt overwhelmed at the house.
Tonight she went home to try and get some rest and she was awakened again from her much needed sleep in her own bed! I thought everyone, by now, knew and respected the fact that she needs her rest when she’s home. Someone didn’t get the memo I guess.
Rev. Barb and Chloe had a great time. Barb read to her. Chloe took a little nap. When we arrived back at the hospital Chloe was winning at Bingo again. She won 3 games! It’s great fun, and, for the kids that can’t make it to the activities room, it is broadcast to their rooms. When they win they just call in and claim their prize.
Dana gave Chloe a bed bath and washed her hair. That is quite a feat, when you’re awake, mush less when you’re asleep. The bed was going to be switched out for a different kind with an airflow mattress so it was a good time to mess the old one up.
Sandy arrived shortly after we did and took over for Barb. Dana and I carried things to her car and, although she was without sleep for many days, she drove home, with instructions to call when she got there.
Colin was going to be at the house so they would have a time to visit before his Dad picked him up. Dana went to bed as soon as she could after speaking with Colin. I guess Colin had a lot on his mind.
Chloe, in the meantime, was busy at the hospital. She is now on the ventilator a few hours, off a few and on it overnight. This gives her a little assist to help build up her strength but not so much as to make her lungs lazy. She had fewer cough assists than any other day I’ve been with her. She was looking good and her spirits were bright.
Dr. Norwood appeared during our away time and Barb said Chloe completely lit up. They really have a cute little stick going on. Sarah does a lot for Chloe but ol’ Swamp Fox really gets her going. Chris, you do a pretty good job too.
The plan in place is to have Chloe go to rehab starting Monday. This will be hard work for her as it’s 3 hours straight, two times a day. The rehab takes everything into account. There will also be training for us, on all the machines she may need, the trach, the exercises and everything to look for. They told us we would be experts by the time we were ready to go home. The bad part… we may not be going home for quite a number of weeks. It all depends on Chloe.
Tomorrow we hope to have a digital speaking machine so Chloe can start talking. It won’t be her voice but it will be a voice. It was all explained to us and we all think it’s a great idea to get her to believe talking again is possible.
This blog is being followed by so many who love Chloe. Dana, Sandy and I are the revolving caregivers but there are so many who would if they could. Thanks for being there.
Blessings,
Ron
159 Responses to “Wednesday, Dec 23, 2009”
By Supermanj on Dec 24, 2009
WE are here, standing behind our warrior, the one who is teaching us the value’s of life. I still remember the words You told me the first time we met, in front of Your house. I remember each time after that when You sat in my mothers lap and loved being loved, and was full of Excitement and joy when You and Colin discovered the cows, cats, dogs and other pets. These are the times that I look back on, and look forward to more of each day as You, Chloe, Grow stronger.
Girl you go! We, are here and will always be here, you have a great team (with loving hearts) of key players and an big crowd in the audience cheering for you.
Merry Christmas, see you soon!
Love James and Daniel
By Cheryl Dietz on Dec 24, 2009
I am so happy that Chloe is out of the PICU. Congratulations Chloe, you are an amazing girl. We miss your smiling face at Bridlemile and look forward to you coming back to school. Keep up the good work and know that all of us at Bridlemile are thinking of you and praying for your speedy recovery. I hope Santa brings you a peaceful Christmas day and maybe a present or two. Lot’s of love, Cheryl
By Tim on Dec 24, 2009
Hello Loved Ones..
The Holiday is arriving and I wish I could offer a “Gift” that would make a difference, and I find feeling the “cry” of so many pierced hearts the only “Gift” I know of I cannot offer or have the ability to do so.
I can only say I share in your suffering and I want to share in your suffering…and again it is so little when faced with such adversity and pain.
Some how like in the song “The Drummer Boy” explains it all…as to how I feel…empty without a gift that would be of any significance.
Dana… Ron’s message tonight regarding your little time off say’s it all for the enormous weight upon you…Every time I read these posts, the lump in my throat and helplessness grows…and I feel as a friend I have done so little to help you…
The only “Gift” I can offer you is my Friendship to the end of which you already have, and the “Gift” I wish I could give you is not at my disposal…but in my heart someday I can only Hope it can be received…
Chloe’s Gift is Beautiful to all, for even though she is down her spirit is up!! and the Gift she has offered all is unmeasurable for at the very least her Gift challenges absolutely “everyone” who has any feelings at all to Look again and find so many things to be grateful for, and just as profound challenges to seek the answers that would be rejected without the Gift she continues to Give!!!
Love you much Chloe, and Thank you for a Gift that can never be matched!!!
Love you All…
Tim
By dana watts on Dec 24, 2009
Just a little to laugh about(ok theres moments that are laughable…)…Ron is so fried he didnt realize we were at Burger King,not McDonalds!(or maybe I was crying as we passed the McDonalds…who knows….I cry when I eat, I get lumps in my throat due to chloe not being able to eat and WANTING TO, a want I’ve never witnessed so strongly before…she goes thru the TV practically when she See’s KFC, Chocolate ads for Reeses or whathave you…)
THanks for the comments…we, who have a voice, why not USE it and declare our perspectives? Everyone has a perspective, their truth to announce. I knew yesterday I waas completely inefective for and with Chloe…so I left.
I appreciate the gift of friendship Tim…oh my goodness…since I was 14, I’ve known it.
Superman…what were Chloes words to you/care to share? She had some powerful ones for REgina that I never knew….happened years ago and was an awakening for Regina.
Lord, this is long and this is just the comments section….guess I got some sleep after all and decent coffee(my own)
love to all/gratitude
dana
By Regina on Dec 24, 2009
I cried watching some singing Idol show last night. I cry when I try to sing lately. Face it I just cry. But god love Chloe for she keeps on going with more strength than all of us.
Miss you
By Kevin and Laura on Dec 24, 2009
Hi Regina, Jeremy, Colin, Sandy and all of Chloe’s friends and neighbors. I just had a little visit with Chloe, Dana, Ron and the procession of hospital professionals dropping by the room. Dana said she had a fitfull night’s sleep last night but she looked infinitely more rested than the last time I saw her (Colin’s concert). Chloe was herself- smiles, twisted smiles, shrugs, and that intense pensive look she’s given since she was a baby. She gave her oncologist’s hands a good hard squeeze with both her hands. My heart is lighter. Merry Christmas everyone from Laura & Kevin’s household.