Today counts as a good day… The night, not so good though with little sleep and lots of bells and whistles keeping everyone awake. However, the morning PT\/OT went great. Maybe Chloe was trying to impress everyone for Michelle\u2019s sake. We will miss her on the team for sure but we want her to take good care of herself and her preemie son. <\/p>\n
I met up with Dana and Chloe a little after noon as they went for a stroll before returning to the room. They actually found some sun on the second floor deck. Not that either of them need any vitamin D or anything\u2026<\/p>\n
At 1:30 we were off to more PT with our newest member of the team who hadn\u2019t seen Chloe since when she first arrived. Well, I think we impressed her quite a bit. Chloe walked over 190 feet, with only one break!!! Then she got on the big three wheeler for the first time and rode it for about 10 minutes. She didn\u2019t say but I think that was a highlight for her. She so loves riding her bike at home. So putting on the helmet and putting the feet to the pedals had to feel very familiar, in a good sort of way.<\/p>\n
Next we had a 30-minute break so we went in search of more sun. No luck this time but we did get some outside time. The fresh air of a fairly warm day was great for her. It was sweater weather for the girls and tee shirt weather for me.<\/p>\n
School was last on the list. That was 2:30 to 3:00 but we didn\u2019t have the right homework so we used what we had. We only had about 20 minutes before we had to go to the weekly meeting. Turns out they were ready for us 20 minutes early. That\u2019s a first, as they usually run over.<\/p>\n
The meeting was a good one, filled with lots of information. We have a \u201cTarget Date\u201d of March 10th for going home. All that means is that we are shooting for having Chloe ready enough to bring home with the least amount of care needed\u2026 which will still be a lot. However, we also found out we will be able to get nursing help at home and school.<\/p>\n
During the meeting we also discussed the lousy nights. They are changing Chloe\u2019s medicine at night in order to help her sleep better. We now have the monitor volumes down as low as they can go. They still are monitored at the nurses\u2019 station so we haven\u2019t reduced the safety any. Most of the monitor alarms are false but they still need to be addressed and they still wake whoever is staying. <\/p>\n
Another concern was addressed and pursued after the meeting; the call button issue. We are still trying to get them to make sure, for everyone, that if there isn\u2019t a response when they ask, that they send someone in the room immediately, and announce they are coming. In a real big emergency Chloe was told to rip the call button off the wall and a Big, Big alarm goes off. That\u2019s fine if she has the strength to do so in the middle of a major emergency. We just hope that time never comes.<\/p>\n
Facilities had to be called this afternoon because Chloe\u2019s TV volume didn\u2019t work. This is the second time since we\u2019ve been here that\u2019s been a problem. It\u2019s also the second time that we\u2019ve been helped out by John Z., or Jazz as he likes to be called. If you\u2019ve ever read the book \u201cThe Fred Factor\u201d then you\u2019ve read about Jazz. He sure is a joy to have around. He\u2019s been through it all and he is still quiet and smiling the whole time he is doing his job. He earned a Kite award today for sure.<\/p>\n
Starting tomorrow we are taking a lighter version of what we have been up until now. It is the next step in getting Chloe more independent. She will be at PT\/OT, Speech and School now without us hanging out. That will give her confidence that she is safe with others. Right now she knows we are there to protect her. However, she is showing, daily, that she is getting better. <\/p>\n
Dana had shrimp tonight so that helped squelch her appetite. And I got her a couple of her favorite Wendy\u2019s Jr. Bacon Cheese Burgers with no Mayo. That should keep her until tomorrow. No Mayo, No Cottage Cheese or Cream Cheese\u2026 those are about the only restrictions for Dana. No nuts or peanut oil for me but I\u2019m able to eat elsewhere so the only thing we need to know is if there is anything like that in any of the food so I can opt out of the meal. <\/p>\n
Thanks again for all your continued help and support.<\/p>\n
(Larry Lake\u2026 please get in touch with me. I lost your contact information. We need help with the text to speech on Chloe\u2019s computer. The program we have doesn\u2019t have any volume.)<\/p>\n
Be well,
\nRon<\/p>\n","protected":false},"excerpt":{"rendered":"
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