OneAna.com

Not really sure where to start… Ana is doing well she has been on and off sick recently… each time she comes down with a cold she ends up being home for a week or so.  Her immune system isn’t quite up to snuff yet.  Her scar is nearly healed so she’ll let me post something once it’s not so pink… she has been great since the bandage for her mole removal came off but you can tell she’s still getting used to it.

We also met with a school vision specialist last month.  She was very impressed with our little girl, she did a great job of advocating for herself and was able to explain with great detail what her issues were. The plan is to get her to touch type so at somepoint we can get her an ultra portable laptop and she can take and do her homework on that.  today she had due a “wellness plan” for a class and I doubt I could have gotten away with that little she had.  But in the paragraph or 2 she would have a on page you could see where her eye’s would just give out and it was increasingly difficult to write more.  SO the idea is to have her on one machine that would work well for her.  Something useful for small hands and good battery life.
The other modifications have been working well… she does math homework sheets on 11×17inch paper! Vs. the standard 8.5×11 that would normally be used.  Most kids would have a couple issues with using something so different from their classmates but for whatever reason she just goes with it.  IN another post I’ll explain more of what’s going on with her eye sight and catch everyone up…

It looks like Ana will be starting Growth Hormones, so long as her Next MRI turns out well. She was really disappointed when she found that out… She wanted to start a while ago.  She wants and is ready to grow… All the test show that her body is producing what it needs it’s just not making it to the areas where it’s used.  So were going to see if an artificial source works.  Anniessa currently has a couple inches on her older sister.

If you’d like to read about the money issues follow the jump… (more…)

So the meeting with Doctor Mortel that week of Thanksgiving… went very well.  Ana did talk to him just as we thought she would the vision issues. He noticed that she was looking off to the left in her left eye more than should be, enough to be causing the double vision issues. So the outcome of that visit was that we’d start seeing the other doctors in her team to help figure out what are our options for correcting her vision or making adaptations.

Sunday we started a test that will see if she needs hormone replacement therapy.   The test is an IGF-1, we get the blood draw on Thursday and I’m not sure the time line for the test results.

Wednesday the 12th, we have the appointments with the new doctor team at the University of Minnesota… We’re looking forward to meeting with them.

Thursday is the big day… Ana get’s her port removed and she is also having the mole on her face taken off as well. I’ll be sure to post photos of before and after

We are having a number of car issues so any additional help would be great!

I spoke before how we almost felt we were on automatic for dealing with chemo and what was Instore for dealing with everything.

Last week at chemo we found out that Ana’s kidney function had gone down even further.

So her dose of carboplatin was cut in half. It’s also enough of an issue that her fluid intake needs to be doubled. The hope is there be no long term damage to her kidney’s.

At this point we’re just pushing water like crazy and Ana is upset that she can’t drink pop except in smaller amounts.

We have chemo again April 20th and 2 days before that another kidney (GFR) test. In the mail today we got the date of her next MRI & clinic visit.

Thank you for your thoughts and prayers!

Peter