Monday, March 14, 2011

JA Picnic, Make A Wish

After I got home from work, I laid down to watch TV, and woke up 5 hours later!!!  (Oops!)  The great part about it?  It's 4 A.M., almost everyone is asleep, and I now have time to update without everyone talking to me at once  :)

Emily & Parker
These 4 got along so well!  My son has a huge crush on Dakota, and Emily & Parker clicked quickly.
This has been a wonderful week!  Starting with last Saturday, (which I realize is now more than a week ago).  Last week, we made the trip over to Orlando to join up with the Arthritis Foundation's Juvenile Arthritis Family Picnic  :)  Unfortunately, Kevin was still radioactive and in isolation so he couldn't go, but I packed up all three kids.  Gir thought that she would be bored.  I knew better  :)  I knew that there would be some older siblings there.  It is so awesome to be able to get the kids together with other kids that are suffering in ways similar to them.  The beautiful thing about this is that when they get tired, no one bugs them to keep going.  These kids understand each other in ways that most other kids can't.  If they can't run, no one is going to name call, or harass them to get their way.  The kids had a wonderful time connecting.  It was really cool to look around and see the ways that certain people clicked with others.  My son followed around little Dakota, the older woman for him  :)  Little Carolina & Cole clicked as well.   They are both so little that it was absolutely adorable watching them!  I tried to get pics but totally missed the opportunity.   Emily made a special friend, also.  I had wanted Emily to meet Parker for quite some time.  I just knew that they would click.  They seem to have similar problems at the moment, too.  Em is really shy; she wouldn't just go talk to him.  Somehow, they finally got talking!  They chatted away for quite some time.  They really understood each other- so important right now.     While the kids were busy playing and getting to know each other, the adults had the opportunity to chat and compare notes.  I had met most of our mom's before, but it honestly felt like I knew them all so well.  (Thank you, Facebook!)  It is so important to share your triumphs and frustrations with people that understand!!!  Heidi brought books, including one that she had made based off of her blog!  (Pretty cool, huh?)  She also brought a few classics that got passed around.  Some were for kids and others were for us adults.  When this is what you live and breathe but don't get to talk about much to people in your normal daily life, this is very important.  There is so much sympathy from family to family, children and parents alike.  Those that are going through a LOT still think about other that are going through less.  We have an amazing extended family now that I am so blessed to have met.  Some great things really do come out of bad situations! 

Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home.  She ended up going to the ER the next day and staying at the hospital for four days.  You would never have had any idea that she was ill watching her play.  We all know that often you can't tell with our kids.  These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick.  Of course, I think we all panicked over this.  Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick.  For some it would be just plain disasterous.  

I had such a wonderful time on Saturday that I actually felt relaxed for the whole week.  Maybe having a three day weekend helped, too.  I have been in a fantastic mood all week.  By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come.  On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better.  Not that she's been unpleasant.  Not by any means!  It's just that she seemed to have no will to do anything before.  It was so sad to always see her sitting at scouts alone while everyone was playing.  They weren't excluding her; she was just too unhappy to want to play.  Just thinking about her wishes has made her happier.  Having them come over just made it real to her; she knew that I was truly following through with what I said.

When our Make A Wish volunteers came, they came bearing gifts for all of our kids.  That is so important.  I'm so happy that they try to make the siblings feel special, too.  I try so hard to love them all equally, but of course there are more demands from Emily.  I have to spend more time with her.  No, we can't just go places like other families can.  It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc.  Most of the time we are home.  It takes a toll on the other kids.  I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns.  Anyway, one volunteer sat with me and we filled out paperwork and talked about the future.  The other one sat with Emily and together they decided on her wishes.  (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.)  For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess.  They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan.  It really didn't take long, and I think that Emily feels really good about this.  It is so exciting to think about!  Our rheumy said that they almost never turn down a Disney request.

I truly hope that the Disney one gets granted.  That is what she wants most of all, and of course that is what all 3 kids will enjoy most.  I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to.  I have heard that they make it absolute magic.  No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families.  There's also a Cinderella meet in the castle.  She would love that!

I am also using this as incentive to get her moving.  I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there.  I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too.  It's amazing what we'll do when there's something to look forward to!  I'm hoping that this will also help her to burn off some of the steroid weight.  This week we decrease her dosage to 9MGs daily!  I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off.  One wonderful thing about the steroids is that she finally eats!!!  This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird.  Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food!  Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much!  It's better than being 42lbs at age 9, right?  She's earned a new nickname:  Sharky!  :)  She's so funny!  We are soooo blessed!  She's had a few joint issues, but nothing major.  Her Remicade is increasing at her next appointment.  Hopefully that will do the trick.  My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week.  She usually starts to hurt the day before, so I hope this doesn't result in a flare.

I have got to get to bed!  Have a wonderful Monday!  :)


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