Wednesday, September 19, 2007

Day 22: Really on this planet!

Lol, I know it seems like we fell off the planet, really we didn't, it's just been getting used to being here alone and the fatigue that comes with every 6 hour IV antibiotics and a rather less than comfy bed. But we're still here in Omaha, still on this planet and John is doing rather well. So let me catch you up...

Last Friday came and went. John learned how much he liked his play-doh

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and did actually show the physical and occupational therapist a bit of what he can really do.

Saturday was long and quiet, a nice time to rest and get ready for dad to come visit. It gave us lots of time to read books and we enjoyed some of our old favorites that we brought with us and a few that we got from the library here in Omaha.

The Story of Little Babaji by Fred Marcellino is one that we will actually be checking out from time to time. John rather enjoyed the tigers and got more into the story each time we read it. The story is basically that of Little Black Sambo, but done in an Indian setting and is delightful, the illustrations of the tigers are priceless.

The Proud and Fearless lion by Ann and Reg Cartwright is another that we will be checking out occasionally. The illustrations are great, the story is pretty good and despite the somewhat anti-hunting bent the book is over all pretty good. John likes the roaring lion, who wouldn't!

Sunday drug past, actually time here seems to do that anyway, I always have to check the day count to see how many it really is, because it certainly feels like the time creeps by much slower, at least the time that Mark isn't here. The time that he is here flies by us and we are saying good-bye much, much sooner than any of us are ready for.

We missed church Sunday morning due to a phone mishap, but are looking forward to going to Bible study tomorrow night and getting to church next week. Surely we are in some type of time-deception zone here because the month that passes between each Sunday is very slow, but the 5 minutes between the time that Mark gets here on Sunday night and then leaves again on Wednesday blows right past us. Mark is on his way home now, John and I are hanging out waiting on the nurse to come and help with John's central line dressing and John well John is practicing his new talent, taking off his diaper and unpacking any bag close to him.

Mark got here Sunday evening. He was able to see the difference in John immediately and soon realized that the 11 days he had been gone his little guy was growing up each day, and had new tricks, talents and strengths to share with him. Mostly to start with he had lots of hugs and kept looking just to check and make sure that dad wasn't going anywhere. The rest of today will be hard, I'm sure this afternoon we will be searching the hospital high and low before John will finally admit that dad is really gone.

Well okay John has a new trick, hmmmmmmm, can't wait until dad comes back to see this one, when I turned around from the computer he was standing next to the bed with no diaper on, lol, I'm sure this is going to lead to new adventures and trouble!

Mark being here was great, no it was the best. He was here to meet Lillian and take a tour of the JP Lord school where she works. Lillian is the lady that takes us to church and the school is a tiny arm of the Omaha public school system that is just for special needs kids. John enjoyed getting to run into all the rooms and say 'hi' to the kids, teachers and aids and most of the teachers and aids decided that they wanted to keep him. Ah, poor people, they have no idea the trouble they would be asking for.

Monday we took John to the Omaha Zoo. The zoo is amazing, we didn't get to see all of it yet, but plan on making many repeated trips. John was thrilled with the aquarium where we could stand and watch the sharks and rays swim around us and over our heads. He loved seeing real bears and when the big ape stood up and hit the class John was ready to see more of the show! We are very thankful that the zoo has provided free entry for the residents/families of the Lied center and we look forward to going back again and again.

Tuesday was John's 2nd clinic appointment. Everyone was disappointed with the no-weight-gain according to the scale, but just looking at John his stomach was less distended and his little arms and legs are more filled out, so while the scale couldn't tell the difference the docs and nurses could and we are going on the surgery schedule for the 1st week of October. Over the weekend John developed a horrible diaper rash, so he was put on oral fluconazol to handle that and thankfully we are nearing the end of the every 6 hour Zosyn. We should have a more specific surgery date by next week, and also have an appointment with hemotology so that John's clotting issues can be nailed down before surgery.

While Mark was here we got some stuff straightened out with the bed here so that it is more comfortable, got to spend some time watching Lost on the internet and even had the chance to read a good book - many to John, one for me and Mark listened to one on the way here and is listening to one of the way back home.

I got to read the Wednesday Letters by Jason F. Wright, actually started it yesterday morning and packed it in Mark's stuff for him to take home and read after I finished it last night. Excellent book, I'm normally a thriller/mystery reader and this is certainly not either one of those, I'm also not a big fan of Christian authors because rarely do they write a compelling story, but this is a Christian book, all about the power of forgiveness and an excellent, page-turning story that I'm sure I'll read again and again. Actually it's good enough that my next trip to the most dangerous store in the world, Barnes and Noble, will be for his Christmas Jars book.

Mark is listening to Big Bad Wolf by James Patterson on the way home and I'm hoping it's great because then I can put it on my library list. Which I get to make one finally, because I went today and got my pin number again. You know there are days that I'm positive that I'd wander around in circles looking for my head if it wasn't attached and so visible. Lol, I dyed my hair again, new color, um, probably not this one again, but at least for the moment it's not full of grey and maybe no one will ask if I'm John's grandmother this week.

For the moment I have The First Commandment by Brad Thor that I'm going to start reading while John is taking his nap, and the latest edition of Jim Trelease's Read Aloud Handbook that I'm reading bits and pieces of for the 3rd and 4th time. All this and Mark brought up my sewing machine, coverhem machine and fabric and such so that I could sew, maybe the time will speed up and that month between Sunday's will turn back into days and those years between Mark's visits will turn back into the weeks that everyone else lives.

John got to meet his new speech therapist today, we were really impressed that she chose one of his favorite books, Where's Spot? to warm up to him with and also that she used good signs and no baby talk - baby talking to John is a sure way for him to think that he can outsmart you and work around you to get what he wants. I think this lady is going to work out nicely while we are away from our treasured Mrs. Amy. Beth, the new speech therapist, is going to be working with John's AET device, teaching him that it is a way to talk to those people who don't understand sign language and not just a video game to make a bunch of racket with.

Oh, and C, if you've read this far, Mark is on your side and I'm thinking through what you suggested, actually toyed with it on paper a bit, we'll see, no promises, but I'm at least thinking about it.

Several people have asked about where we are living and I'll try to take some pictures this evening when silly man is done napping. I've also been asked by quite a few what we need, really we're doing well and I can't think of anything specific that we need at the moment. Knowing that everyone is praying for John and us, that we are loved, that's the main thing right now, it's nice to know we aren't alone!

1 comment:

jfw2020 said...

So glad you liked the book :) And I loved your comment about BN, so true :)