There was a birthday party for Winnie-The-Pooh the other day, so all the kids in the hospital got a Pooh bear, whether or not they actually got to go to the party themselves.
There was a lot of chaos today. I got the hospital at 5:15am to find two nurses standing over Jordan, perplexed. They were so relieved to see me. Nothing was really wrong, but they just didn't know what to do with her (a common problem). She had woken up, seized, burped, barfed, and fussed, but was settling down -- TOTALLY common, but neither Devon or I was there to tell them that was "normal," so they just stood there watching her, wondering what to do next. I felt soooooooo guilty for not being there at 4:00am when it all started. . . . .Since Avery showed up still in her jammies, she didn't see any reason not to scale the crib sides, and snuggle up with sister for awhile.
Devon & Avery (straight out of bed still in pajamas) got there at 7:55am, and the state worker was there a few minutes later to start the evaluation of Jordan. It lasted 2.5 hours, and led directly into an in-patient dietician consult, which lasted another hour. So, Avery wasn't having too much fun for the first couple of hours of the day, but that soon changed. Devon took her to the garden for kids games for an hour, and I stayed with her there for another 45 minutes. We had lunch from the cafeteria, played in the kids room (awesome room!), and out on the 3rd floor playground. The social worker who needed to talk to me for ~45 minutes in the afternoon was so impressed with Avery's good behavior that she took us down to the cafe and bought her a snack. Avery picked grapes (even over the cakes & pastries there)! And then the highlight of the day, perhaps even the week: Peggy the Child Life Specialist brought her more toys than she could carry in one trip, and we all sat down on the floor and just played for an hour. And she got to keep all the toys. An awesome, porcelain tea set, a set of 4 My Little Ponies, a Play-Doh set, and Ariel barbie doll (her first barbie), a slinky, and then some books, notebooks, markers, and pencils. Peggy was working at the garden games and knew that Avery likes to write. She was impressed with Avery's alphabet abilities; Avery wrote her a thank you note, and did it all by herself except for a little help on the "Gs" in Peggy's name. I don't think she's ever written words with "G" in them before, so she learned that new today.
Avery playing with Peggy & all her new toys.
Avery's tiara matches (barbie) Ariel's tiara. 
Tea & grapes for the My Little Pony tea party. They had to use red & blue Play-Doh as cream & sugar, bleck! 
So, despite her utter exhaustion, now Avery loves the hospital, and didn't even want to leave early with nana Noma; she chose to hang out with me and Jordan for the whole day, and to play with all her new toys!
Now the hard part: All the balls are rolling for now, and with the weekend there's no "work" to be done at the hospital -- just waiting until Monday to see if we have the home health nursing set up through the agency & the insurance company. So, there's nothing to do but wait & get through the weekend with Jordan in the hospital. We really don't want to hang out there, but we really can't not be with her. It's hard enough to be gone at night (for the second time). What's a parent to do?
1 comment:
I hope the home nursing works out. It would really give you guys the break you need and a chance to have a more normal life. You guys have done everything and then some when it comes for caring for Jordan but you can't burn the candle at both ends forever. Imagine what life will be like when you get 8 hours of uninterupted sleep EVERY night! Well, we can dream! I hope it works out with the nursing care and in the end you will decide to do what is best for your family - whatever that may be.
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