Friday, July 29, 2011

Got to love a Sara-ism!

Its Friday, and what's better then a good laugh?  I know that I laughed really hard when Sara said this to me earlier this week.

First, a little pre-story.  Sara spent the first part of this week with her dad on vacation.  They went up to Breckenridge, and just enjoyed the small mountain town.  One thing they have there is a gondola ride.

When I asked Sara what they did together when I finally got to see her, she rattles off a couple things and then says with tons of enthusiasm...

"...and we got to go on a granola ride!  And my wheelchair fit inside!" 

Now at first I was confused, so her dad told me what she meant.

So I say, "Oh, you rode on the gondola.  That's really neat!"

And her response...

"Its not a gondola ride Mommy; its a granola ride!  Weren't you listening to me?!?  Maybe you need to put on your listening ears."

 Ah, its it a joy to hear your own words said back to you?!  And in the exact same tone you said them in the first place!?  At least I know she really is listening! 

Thursday, July 28, 2011

Oncology Check-up Summary

Sara had her 6 mos. check with her oncologist yesterday.  But we didn't get to see him, which kind of bummed me out.  The hospital messed up the timing, told me 3:30 but put 2:30 in the computer.  So he had to leave before we got there.  I hate the fact that he left thinking we were late!  But we saw his assistant, Molly, and she reassured me that she would let him know about the mix up.

Molly was great, as she always is.  She gave Sara a once over, checking her heart, lungs, eyes, ears, etc.  She asked Sara about how her leg was feeling, and how school was.  Sara came to this appt. straight from a vacation in Breckenridge with her dad, so Sara had some new things to show off.  One such thing is a new license plate for her wheelchair with her name on it and Breckenridge, CO. 

I'm so glad that Sara is now old enough to express to the doctors what she is feeling.  Before I always had to guess, and its nice to know that she can do it now.  It also makes me happy that because Sara is able to express her opinions and how she's feeling that she can be much more involved in her own care.  Since she's the one who has to go through it, I like the idea that now she can have some kind of say in things.  Molly asked her if she would mind having another MRI soon, and Sara said it was fine...but commented that she doesn't like the mask they put on her face.

The only real things we discussed at Sara's appt. was when her next MRI would be and at what point she needed to attend NF Clinic.  They are making some changes to the NF Clinic, which I'm really excited about.  They are enlarging the program and becoming an NF consortium site.  This means they will be more involved with drug trials and other on going research.  And that means more possible treatment options in the future.  At this point, there is no plan to change any of Sara's current treatments since she's doing so well.  There is also no plans to enroll her in any drug trails for the same reason.

Sara will return to NF clinic in November, most likely.  She will also have her MRI then as well.  I'm not sure what all we will be scanning at that time, but I would like to do a whole body scan if the insurance will allow it.  We haven't done one since she was a year old, and it would just be nice to know that in the last couple years she hasn't developed a new tumor anywhere that we don't know about.  I still need to talk to the doctor about it, so we'll just have to wait and see what he thinks.  As always, as soon as everything is scheduled, I will post it on the right side of the blog so you can all check when it is.

Monday, July 18, 2011

Yea For Healthy Kidneys!

Sara had her annual check-up with her urologist today.  I'm happy to report that her kidneys look as good as ever, and she's doing great!  It was a really quick visit, only about 20 min, which is the fastest visit we've ever had with him.  We actually spent most of the time talking about how great it was that we hadn't been to see him in so long.  Go figure!

The only small hiccup was a small red spot on Sara's leg that she's had for a couple weeks.  Since we were there I asked him about it, and he told me it was ring worm.  Ugh!  So I just have to put some anti-fungal cream on it for a week or so and all will be good.  I haven't caught it yet, so I'm not too worried.  If I was going to get it, I would have since I've been touching it for almost 2 weeks already.  I can't complain too much though; she did manage to avoid catching pink eye from the outbreak at daycare last week!

Thursday, July 14, 2011

A little progress...

After going to bed hungry because she refused to eat her dinner on Tuesday, Sara ate a few bites of dinner last night.  I considered it progress in the right direction, and it reaffirmed that I'm doing the right thing by forcing this issue with her.

For the first time in a while, Sara didn't have a huge fit at dinner.  And she even tried one bite of something new!  She cried a little, and there was still some enforcement of the eating rules about no crying at the table and leaving food she didn't want to eat on her plate...but overall she did much better.

Now part of me wonders if that's not because we had company for dinner.  Sara knows that my rule is that you better have good manners when we have company or are out in public, but you can get away with murder at home when its just us.  Of course, that is one of the things that we're working on. 

I know that her behavior is a direct result of how I parent, so I know that this is not all her fault.  And I know that to change it, I will also have to change how I do things.  I assumed that at first it would be really difficult and I would want to give up, but so far it has been easier than I thought.  Let's just hope that this positive forward movement continues.

Maybe tonight she'll eat all her dinner!  I can hope at least!

Tuesday, July 12, 2011

Help...I need ideas!

I'm calling out to all of my blogging moms (and anyone else who has any ideas) because I don't know what else to do.

Sara has always been a picky eater!  But recently, she's getting even worse.  Things she used to eat she flat out refuses to even allow on her plate now.  Dinner time routinely involves a meltdown, and her refusing to eat. 

I've tried many things to try to get her to eat well and try new foods.  I used to bribe her to try them by withholding dessert till she took at least one bite of something new, but it didn't work.  One of her doctors recommended making rules for the dinner table, so I did.  Rule #1, no crying at the table.  Rule #2, you must leave all the food on your plate.  Rule #3, you don't have to try the new things.  The idea was to put something new on the plate every night, and smaller portions of things I knew she'd eat, and hoping that just having it there and not saying anything about it or making a big deal out of it might encourage her to just try it on her own.  It didn't work either, and I've been doing it for 3 or 4 months now.

So this weekend I reached the end of my rope.  I told her that she was a big girl and she needed to be willing to try new things.  I promised I wouldn't put anything on her plate that I wasn't willing to eat myself, and that I was no longer cooking different things for dinner.  She would eat what I made, or she would go hungry.  I also told her no more snacks, hoping this will prompt her to eat more at the table.  And I also told her on nights she refused to eat or had a tantrum at the table, she would go straight to bed.  The problem is, I know that these new rules aren't the answer, and enforcing them is going to be really difficult and take all my patients.  But I don't know what else to do.

Anyone got anything that might help?  I'm desprate!