Because We Love Her

Wed, May 19, 2010

May 19th, 2010 Posted in Daily News Post

Tuesdays always seem to be the day Chloe looks forward to. She gets to go to the gym with Beth and she gets to taste food with Steve. Both offer good vibes and the attitude of hope, something Chloe desperately needs.

The downpours stopped just in time to get her loaded into the car and get off to Dornbechers. When we pulled up to the front circle, there sat the Weiner Mobile. Dana and I immediately got a little excited. Chloe wouldn’t have anything to do with it and even refused the free picture they were offering. It’s partly the generation gap thing but then it’s also the no poverattsi thing. She just doesn’t like being in public yet. She even covers her trach with a scarf when we are out.

Mama makes her use her walker more and more now. So from the car to the elevator to the third… which is actually the seventh…. floor to the lobby, Chloe didn’t take a break. We checked in but the guy forgot to page Beth so we started 10 minutes late when Beth finally came out to see why we weren’t here. She knows we are really close to on time, all the time.

Touch-typing isn’t Ms. C’s favorite thing but that’s what we are working on. As many of us in the beginning didn’t see the need, she is there as well. There are some games she can play on the computer that teach typing so we will be doing that on a regular basis. Once again I explained how necessary it is for her to learn this and that, once learned, she will probably challenge herself to type even faster.

Next was finger painting on a paper taped to the wall. This helps with coordination and also gets her messy… something she likes. Then, Finally, it was off to the, now, un-crowded gym. She did well on the rock wall, getting up about three feet, and then tried the ladder to the slide. She didn’t make it this week but she’ll try again next. Then it was off to the swing. It’s just too much fun in there for her to have a bad time.

Steve, and Carrie, met us in the lobby about 10 minutes early and announced he had a culinary delight awaiting his star. It was pretty funny when I caught him by asking “Twinkies.” It turns out I was right on one of the courses. The rest was pretty good as well. She tasted Mexican food, something that doesn’t arrive at the door often, and fries with katchup, her staple.

The Pasi-Muir valve stayed on most of the hour and Chloe spoke to us in pretty good sentences. It’s still “the voice” but it’s mostly recognizable. Some of the words don’t come out as planned since the tongue still has a ways to go before it can fully carve the words out, but it’s coming along nicely.

Now it was time to try some simple swallowing. First came some cold soda. A small sip, tilt your head to the right side, the one that is starting to work, and force a swallow. Chloe said it was minimally successful. We tried thinned out pudding and ice pops next. All were a little successful and are something we are now going to try at home under complete supervision. Some gets aspirated each time but she can cough it up when it happens.

When I was speaking with Chloe the other day about the trach, she asked me “When will it come out.” No-one knows for sure was my answer, but what would you consider to be a reasonable time based on your progress so far? After getting “today” out of the way, she decided it would be great to have it out by the next holiday. “Which one?” “Halloween.” So we took the calendar out and marked October 31st, as “the trach is gone.” She did the same on her Ipod. Then she told Steve yesterday that she didn’t want it for next year at school. His reply? “I don’t see you having that thing next year at school.” He repeated it twice and later Chloe still needed to be told what he said. So that’s what we are shooting for!

Backing up in the timeline now… There is a talent show at the school. Chloe has always done a song there but, of course, she can’t this time. So she invited her friend Clair to do a duet of “Heart and Soul” on the piano! Inventive is what she is. Let’s find a way to participate anyway. Colin will have some competition for the piano for a while now.

Speaking of Colin, he has a choir concert on Thursday and Friday at Wilson High School. I’m not sure of the times yet but many have been at 7 pm before. They really had a good choir program there if you’d like to check it out. It sure beats their football team…

We made it to church again on Sunday. As I was in the door first I made sure everyone knew that Chloe is really not into public appearances and to please just greet her as they would anyone else, not to dote. I thought we were out of the woods until the very end when someone got to she and Dana, when I wasn’t around, and spent way too much time with them. It’s hard to ask for less contact when so much love is poured our way, but it did set the tone for Chloe the rest of the mid-day. On the other side of the room I was receiving unsolicited advise on what we should be giving her in order for her to get well. Again, well meant, but difficult for me to accept after being through as much medical trauma as I’ve seen. The old snake oil stuff I can do without, even though I’m very open to hearing about new things. Like jokes, presentation is everything.

It’s too sunny out there right now to be here on the computer so I’ll be sending out another update soon. In the mean time I hope you all are having a wonderful spring, haven’t had to plant your gardens as many times as I have and all stay well.


  1. 6 Responses to “Wed, May 19, 2010”

  2. By dana watts on May 19, 2010

    She is really down today. Not doing her swallowing homework(She has Dr. Pepper!!) and not cooperating and talking with the P.Muir valve. I don’t believe what she told me(won’t share).

    Hitting the wall over and over we are and not sure why.

    Colin’s concert is next thurs/fr…27/28. Colin is the best of us….he has the best attitude of all. Adore you Colin.

    I did what any mother would. Since she wouldnt do her ‘homework’ for swallowing…I took away the ho-h0’s and twinkies(that i bought today for the first time ever cos i kinda think they really arent a food group) for her ‘tasting’ time. won’t be winning any mother of the year awards that way.

    Stubborn meets MORE stubborn. Feels awful not to get all that needs to get done, done during the day and fail to inspire Chloe when she is so close and FINALLY given the go ahead to practice swallowing. I could just bean her, or me….not sure who needs it more.

    Thats my truth and I’m sticky with it.

  3. By Supermanj on May 19, 2010

    Sounds as though the visits went well with the therapists. And Glad that Chloe has set a goal for Change, and I am glad it is a realistic one. While life seems at a snails pace right now…..It will happen very fast and each week there is progress…..I am with the therapist….and believe it will be sooner.

  4. By ronhorton on May 19, 2010

    I really thought it funny when I said Twinkies don’t expire… and then saw the expiration date on the package said May 25, 14119…

  5. By Kat~ on May 20, 2010

    It is tough for everyone and it’s hard to have to keep doing things you get tired of. Just remember chloe, you’re only human and it’s ok to get tired of doing some things, but better to do it and get it over with…..will even make you feel good about it.

    And Dana, you did the right thing, hard as it might be sometimes.

    Wish i could have been at Colin’s concert. Would love to hear him !!

    Love to you all and get well !!

  6. By Barbara on May 21, 2010

    I will be thinking of Colin from Illinois! Please ask Chloe to pray for baby Kendra, as she is a great pray-er and she can relate to what Kendra is going through! Being in service, no matter how small or large, is a good way to be more positive – knowing you are making a difference in someone else’s life! Thank you all! Much love, Barb

  7. By dana watts on May 22, 2010


    Chloe gives the thumbs up on your request…we were already on it….Kendra is a the name of one of chloe’s fav nurses on ‘the floor’ at legacy…and that kendra is FULL of vim like baby kendra….all is well. safe journey…be sweet to yourself too

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