Because We Love Her

Sunday night 12/13/09

December 13th, 2009 Posted in Daily News Post

Today was one fairly hard to describe. Chloe says that if the days are rated #1 as the best and #10 the worst, this was a #8 day. Sandy met Dana this morning, mouthing the words, “Sad, very, very sad.” She did have a restful night however, the rest of the day has been just a somber awakness.

The peak parts of the day were when she received pep talks from the doctors. It seems they carry more weight that we parents who, she may feel, are just saying things to make her feel better but without much truth to the talk. Dr. Dorsen’s right hand man, Tony, did a fantastic job explaining the rewiring process of the brain and nerves after the delicate brain was disturbed. Dana says she was very attentive to all he said.

They set Chloe up with a hand call button instead of the thumb press button. It is much easier for her to push and is very sensitive to the touch. She was able to use it three times last night. She probably loved the new responsibility.

Dr. Maya Hunter stopped by to deliver a card and a spiny blue ball, from her great friend Michiko, that is made of material that grossly resembles a reluctant bugger. In fact, I named if for Chloe, and she loves the name,… the bugger yoyo. It can bounce like one of those paddles with a rubber band and ball or she can squeeze it and it blows a bubble out of the interior that resembles a… you got it… a bugger bubble. She was bouncing it really hard and it slipped from her hand, bounced off the wall behind her bed and retreated under the bed. Her expression was priceless when she tried to follow its flight. Then she smiled wide and long. It was a great silent laugh. In a day that had been so sad this was wonderful to see. BTW… Dana asked me not to refer to the blue ball as a bugger yoyo so will the readers please disregard the previous reference to the blue ball as the bugger yoyo.

Sandy was awake and available so Dana and I planned a short getaway to her house for a cleanup and wind down from a hard 11 days. Dave was here to visit with Chloe so we took Colin and went to the house where Dana was able to finally spend some time in the tub and we were able to eat something other than hospital food. The lemon chicken and mashed potatoes was perfect. And Colin got a look at the new paint job in his room that he thinks is very cool. Thank you neighbors.

Make-a-Wish dropped a few pick-me-ups off while we were gone. They never cease to amaze me with their devotion to their kids. It’s been wonderful being associated with all of the volunteers.

During the day Chloe has been getting cough assist procedures. This is a process of giving her a shot of air in her lungs and then the tech does a quick suction to get any of the gunk that passes where it shouldn’t. Yesterday the culture they examined showed a low-grade infection so they now have Chloe on antibiotics in order to stay ahead of the problem. They call it a low-grade infection but any grade in her condition is, as far as I’m concerned, a major situation that needs immediate and intensive action taken. We still plan on bringing a perfectly health little girl home with us in the shortest possible timeframe. As it is now we should be graduated to the third floor by the end of the week. If her vocal cords would wake up by then I’d call the week perfect! They are the key to everything.

Sandy is finally going to take a break tomorrow and go back to Canada and try and salvage a mess at her job. She has been amazing with her overnight caregiver shift. I’m on call now for that shift if we need it to happen. Dana is still the #1 person on this team.

It’s 9 pm now and Chloe is finally getting a bit tired. She will have one more cough assist at 10 pm and then will be given a little something to help her sleep the night. The eyes in this chair are essential when she is asleep as she doesn’t have a voice and her coordination isn’t good when she’s awake much less asleep. I wouldn’t feel comfortable leaving her alone during that period of time.

Thanks to all of you for your support. It’s Chloe, the fighter, Dana and Sandy the protectors. I’m the gofer and writer. I appreciate the fact that there are many who like my writing but please, it’s only writing… something I do in my sleep. I don’t need the praise. The other three are the ones much more deserving and the ones I hope all your energy is focused on.

Blessings,
Ron

  1. 61 Responses to “Sunday night 12/13/09”

  2. By Rev. Barbara on Dec 14, 2009

    Sorry Bud, but you are very deserving and it is time you opened up to ACCEPT it! Surrender Bud (or is it Dorothy??) Thank you again for keeping me posted as well as so many others! Love and hugs to all! Barb

  3. By Larry Sherman on Dec 14, 2009

    Ron – I was so tired when I read your blog last night; I thought that you wrote that you were the “golfer and writer”. And I thought – wow! Ron leads quite the life! Now that I am more awake, I have read this with fresh eyes and realize what you actually wrote. You are a key part of this process Ron. You deserve the praise….

    I don’t know if it would be helpful; I give public lectures in my spare time about the plasticity of the brain and how certain activities, like playing music, can actually generate new nerve cells (neurons), promote the generation of new myelin (the substance that insulates nerve cells), and help form new synapses (the connections between nerve cells). I have some fun powerpoint slides I would be happy to share with anyone who would like to see them, including Chloe (assuming I didn’t put her to sleep with my talks during Science Camp!). I think the important thing to do is to keep motivating her to try to use the parts of her body that are failing her now over and over whenever she can. It will take work and a lot of patience, but it will pay off over time. Anything to motivate her will help. I would even dress up in a cheerleader outfit with pompoms and shout “GO CHLOE” if it could keep her going. And I’d shout it for the rest of Team Chloe too (including you Ron!!).

  4. By Supermanj on Dec 14, 2009

    We are very much focused on the rest of the team also, but you my friend are our eyes and ears in this journey, and a very large part of team Chloe.

  5. By Sarah on Dec 14, 2009

    Each one of you, on team Chloe, is key. Period. End of sentence.

    Oh — and I promise, I will indeed disregard any reference to the blue ball as a, as a, oh, what was it again? Well, anyway, best to you all.

    Sarah

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