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.<\/p>\n
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\u2019t have anything to do with it and even refused the free picture they were offering. It\u2019s partly the generation gap thing but then it\u2019s also the no poverattsi thing. She just doesn\u2019t like being in public yet. She even covers her trach with a scarf when we are out.<\/p>\n
Mama makes her use her walker more and more now. So from the car to the elevator to the third\u2026 which is actually the seventh\u2026. floor to the lobby, Chloe didn\u2019t 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\u2019t here. She knows we are really close to on time, all the time.<\/p>\n
Touch-typing isn\u2019t Ms. C\u2019s favorite thing but that\u2019s what we are working on. As many of us in the beginning didn\u2019t 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.<\/p>\n
Next was finger painting on a paper taped to the wall. This helps with coordination and also gets her messy\u2026 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\u2019t make it this week but she\u2019ll try again next. Then it was off to the swing. It\u2019s just too much fun in there for her to have a bad time.<\/p>\n
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 \u201cTwinkies.\u201d 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\u2019t arrive at the door often, and fries with katchup, her staple. <\/p>\n
The Pasi-Muir valve stayed on most of the hour and Chloe spoke to us in pretty good sentences. It\u2019s still \u201cthe voice\u201d but it\u2019s mostly recognizable. Some of the words don\u2019t come out as planned since the tongue still has a ways to go before it can fully carve the words out, but it\u2019s coming along nicely. <\/p>\n
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.<\/p>\n
When I was speaking with Chloe the other day about the trach, she asked me \u201cWhen will it come out.\u201d 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 \u201ctoday\u201d out of the way, she decided it would be great to have it out by the next holiday. \u201cWhich one?\u201d \u201cHalloween.\u201d So we took the calendar out and marked October 31st, as \u201cthe trach is gone.\u201d She did the same on her Ipod. Then she told Steve yesterday that she didn\u2019t want it for next year at school. His reply? \u201cI don\u2019t see you having that thing next year at school.\u201d He repeated it twice and later Chloe still needed to be told what he said. So that\u2019s what we are shooting for!<\/p>\n
Backing up in the timeline now\u2026 There is a talent show at the school. Chloe has always done a song there but, of course, she can\u2019t this time. So she invited her friend Clair to do a duet of \u201cHeart and Soul\u201d on the piano! Inventive is what she is. Let\u2019s find a way to participate anyway. Colin will have some competition for the piano for a while now.<\/p>\n
Speaking of Colin, he has a choir concert on Thursday and Friday at Wilson High School. I\u2019m not sure of the times yet but many have been at 7 pm before. They really had a good choir program there if you\u2019d like to check it out. It sure beats their football team\u2026<\/p>\n
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\u2019t around, and spent way too much time with them. It\u2019s 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\u2019ve seen. The old snake oil stuff I can do without, even though I\u2019m very open to hearing about new things. Like jokes, presentation is everything.<\/p>\n
It\u2019s too sunny out there right now to be here on the computer so I\u2019ll be sending out another update soon. In the mean time I hope you all are having a wonderful spring, haven\u2019t had to plant your gardens as many times as I have and all stay well.<\/p>\n
Blessings,
\nRon<\/p>\n","protected":false},"excerpt":{"rendered":"
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