Because We Love Her

Tuesday, May 25, 2010

May 25th, 2010 Posted in Daily News Post

It’s Tuesday night and time for a new blog entry about Chloe and her surrounding life. And what a life it’s proving to be.

She and Dana had a highlight with the finale’ of Grey’s Anatomy. Funny they should be so wrapped up in medical and cooking shows. Who knows what that may bring. Chloe is in direct control of that answer.

The week has been the typical week of many different moods and feelings. We are still quite convinced that a good nights’ rest equals a good day full of activity. When we feel we are getting that balance something always seems to jump in and rock our boat. She tends to have the same time frame during the night. 3 am is our nemesis. She will start dropping her stats, need suctioning and have to go to the can. Then she waits a few hours to get back to sleep.

The G-Tube is getting close to its expiration date so we will be in for that to get changed soon. The last trach change went well and we are expecting this to go just fine as well. Tomorrow we get to see Dr. Steve again and talk about how well she is doing and what to expect in the near future. We are trying to convince Chloe to put her valve on and speak to Dr. Steve right out of the box. It will blow his mind.

Today we had OT and Speech. Tuesdays tend to be fun days for Chloe, however, today she was told she would have to talk to Beth during OT. She didn’t want to do that so pulled some attitude on us. It lasted for a while but Beth is good at getting her out of her funk. And, then, at the end of the OT session, Beth brought her in to cook a quick bake brownie. It was the perfect thing to bring Ms. C around. She doused it with frosting and then honey. She didn’t even wait for Steve to show up before she dove in. This is the next best thing to being able to swallow. At least she can get a good taste.

When Carrie showed up in the room she told Chloe there was a surprise awaiting her. It was more than the KFC they picked up, it was one of her former Speech Therapists from Legacy, “Pettel.” She is going to be Steve’s new intern. Everyone was very excited to see her, and she was amazed at the progress Chloe has made since she last saw her two months ago.

Chloe took a while to wake up during this session but when she did it was all or nothing at all. The brownie was completely gone and so was the biscuit and honey by the time we left. Steve asked what she wanted next time, in two weeks. She said, a Mike’s Drive-In strawberry shake, fries, tater tots and ranch dressing. It just so happens Mike’s is in between the two hospitals Steve is at, so he has their phone on his speed dial and will place the order for the June visit. Things went so well during the end of our time that we actually spent an extra half hour in the room. Traffic was interesting leaving the hill at 5:15 though!

Tomorrow night we are going to a party hosted by Chloe’s photographer. It will be a night of walking in her shoes, thought photographs, of her trip to the depths of Africa. This will be right down Chloe’s alley. It should be a great night and a way to help pay back all the generosity we have seen from these organizations. It’s a fundraiser for someone else for their cause.

Rose festival starts this weekend and I would really like to talk Chloe into doing something during that time. We also have to go to the Zoo for the special members tour of the dinosaurs. It should be the perfect place for her to walk around. We’ll have the W/C there for the worst part of the walk though. They will probably provide cart service if we ask for it.

Colin is doing a solo at his concerts Thursday and Friday at Wilson High School. I believe they start at 7 pm, but you can check with us for the exact time if you’d like to go. Not sure which night we will be there as of now but do plan on attending one night, at least.

When we got home tonight we found Tim and Kathleen had made some of the best burritos you could eat. They even had sour cream… of course I have to suffer being the only one who likes sour cream… It was such a treat as I had to run back home to do some work while Dana had to jump right back into the throws of Nurse Mama. That’s a job for an octopus mom. It seems like eight arms are what is needed to do it right. When we are both there for bedtime it’s full time for both of us to get everything set up, hooked up, brushed up, and bedded down. Even with Chloe being able to help at a lot of it we find there is still a ton left to do. We are so looking forward to the day she loses that trach and can start living a normal life again. She deserves it most of all but we certainly will welcome it back.

It still amazes me at the amount of love and support you all provide. Without that we would probably be looking at installing rubber walls.

Enjoy the upcoming weekend. We will be Bar-B-Qing on the renovated deck. I’m sure Chloe will be in seventh heaven with all the tastes available. Sounds like it will be pretty acceptable weather, although we all would love to see some sun and warmth.

Be well,

  1. 12 Responses to “Tuesday, May 25, 2010”

  2. By dana watts on May 26, 2010

    Oh, I could just bean the individual who YELLED AT CHLOE”S BUS DRIVER TODAY!!!!! ” IT WAS INTENSE”, the bus driver said. Chloe needed the restroom coupla minutes before the bus arrived and it stopped traffic altho we often urge others to go around this small bus.

    It seemed important that I not go out in the street and take it on this morning….I’m just in the mood these days to find a cause….so I politely asked Chloe’s school nurse to make sure I stayed in the house!!! ha ha.

    How did Chloe internalize this? Believe me, everything, every situation with ‘adults’ who act like children is something she does pick up on and put inside her somewhere…there is just no extra space for this is her life right now.

    So please anyone living on our street, be patient….we are trying to move forward…in more ways than one.

    The Mother who wanted to, but did’nt ROAR…

  3. By Supermanj on May 26, 2010

    Sounds like a busy weekend ahead for you all and I hope you see that nice weather. Thanks for the update…. Mmmmm Milkshake. Keep on Chloe and wear the valve when ever you can, You might not like your voice with it, but the more you practice the stronger it will get.

    @ Dana, Remember most times when People act out in a negative manner they are most unhappy with themselves.

  4. By Lyne Collin, Montreal, QC, Canada on May 26, 2010

    I think of all of you every day…and hope and pray things get back to “normal” SOON !
    Whatever normal is anyways…right ?

    Thought of you Dana and you Chloe while watching the season finale of Grey’s Anatomy…OMG it was so intense…I cried and almost had to take anxiety meds…
    Don’t know how both of you handled it but that episode was hard for me to watch…

    Stay well & Keep smiling…
    And know that we are with you…

    Lyne xoxoxo

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