On January 1, 2007 Frankie made a new year's resolution to read 200 books.  He completed his goal on November 28th and it was big news in our house.  We emailed his former teachers and informed his relatives and babysitters when we saw them. 

I suspect Rose made a decision that she was going to cash in on some of that hoopla.  She had started her own reading list as she saw her brother approaching his goal but after he reached it, she began reading books every day.  Her list has already reached more than 60 books.

Her approach to reading is quite different than Frankie's was. Frankie broke everything down and had to understand the mechanics of reading. He wanted no help as he read his first books and I mean NO HELP. If he saw the word “dog” and read “bog” and someone told him that the b was a d, he would be devastated, claiming that now the book was ruined and he couldn’t take credit for reading it.

Rose, on the other hand, has been pulling books off the shelf and barreling through them, asking us to tell her what every fourth word is so she can get through it.  She'll figure out tough words like "twisting" or "surprise" and then repeatedly ask us about easier more common words, like "what".  Her reading sense seems innate.  She doesn't know about long and short vowel sounds or endings like ed or ing.  Frankie thoroughly knew these things before his reading took off.

Rita is feeling overshadowed by Rosie's success but she too is reading very well for a preschooler.  She figures out plenty of words and often assists Rosie in figuring out a word but she has no interest in putting forth the effort required to read an entire book.  She'd much rather have someone read the story to her.

This morning Andy was posing algebraic math questions to Frankie. He first asked if Frankie could solve the problem: n+n = n*n. Frankie quickly answered n = 2 or n = 0. Then Andy asked about n + m = n * m. We all started thinking about it, wondering if there was a solution to this one. After a couple minutes, Andy started to say that he needed a pencil to solve this one and Frankie chirped up, “n = 3 and m = 1 1/2”.

A couple days ago we were watching Polar Express and a character mentioned the number 150.4. A few minutes later, Frankie said 150.4 divided by 4 equals 37.6. He did this all in his head. He has a clear understanding of fractions, decimal places, percentages, and algebraic notation.

This got me thinking about the math program at his elementarty school. Reading and spelling are broken into levels but math is the same for all.  The arithmetic that I've seen him doing so far in second grade is still addition and subtraction of 1 and 2 digit numbers.

Rita for PSA

The other day, Carol visited the ARPKD web site, as she does from time to time, and was surprised to see our Rita, looking cute as ever, right on the home page.

We had sent in a photo for use in a public service announcement, but still, it was a surprise to see her featured on the home page as the face of the PSA.

The page stirs up a mix of emotions.  She's my daughter and I'm extremely proud of her (and of course, how could they choose anyone else for the home page <g>).  I'm also torn up by the idea that she may have ARPKD (which is still not a confirmed diagnosis).  I'm encouraged by the great progress that's being made by researchers and even more encouraged by the fact that both the University of Michigan Hospital and the NIH both openly question whether or not she has ARPKD.  I'm saddened to see the other children in the PSA that definitely do have ARPKD.

But, most of all, I'm reminded how lucky we are.

Rita was off Lisinopril for 6 days and she had no recurrence of hallucinations. While she was afraid of going to bed, once asleep, she slept well. On Wednesday, Nov 28, we started her on a very low dose of Norvasc 1mg/day.

The first day she was on it, she woke in the night with a bad dream but went back to sleep and I didn't think anything of it because she's had so many rough nights, I expected she might be scared even if nothing was going on.

The second night, she woke and at first was simply scared by her dream but then started seeing bugs and spiders and feeling stings again. It took her a couple hours to get back to sleep. While she was scared and upset, she wasn't completely terrified as she had been the night before Thanksgiving. Again, it was clear that she was not dreaming and that she really was seeing things. She mentioned other objects as well--like a rose floating in the air.

On Friday, I talked to a nurse that works with Rita's nephrologist, Dr. Kershaw. She said to stop the Norvasc over the weekend and closely monitor Rita’s BP which we did. Rita has slept soundly every night that she's been off her meds--another three nights at this point. She has mild high blood pressure--often it is in a normal range and the highest reading we've had off medication is 112/75.

I realize Rita’s reaction is very rare and the fact that two different classes of meds seem to be causing the same reaction, perhaps entirely unique. However, every day Rita was off the meds, she slept fine.  She has no idea that either med caused the hallucinations.

The current plan is to keep Rita off meds for 2 weeks to completely clear her system. Then, slowly reintroduce the Lisinopril starting at 1mg/day. She was on that level for over a year with no bad effect and it has the added benefit of lowering her proteinurea. After she’s been on it for a month, we'll gradually try to increase the dose—provided her BP requires it. During all of this, we’ll monitor her BP closely and notify nephrology if she gets in the 130/85 range or complains of illness.

While Rita doesn’t show signs of dehydration, I think that drier weather and a few weeks of diarrhea may have contributed to her reaction. I’m hoping to keep her well hydrated and see if that helps when we restart the Lisinopril.

This weekend, I suddenly remembered that starting several weeks ago, Rita was having a bad dream and coming into our room nearly every night.  I don't know when this started but it seems like it was shortly before Halloween.  At the time, I thought that Rita's behavior was highly unusual for her.  She's usually great at sleeping through the night and Rose is far more apt to wake up and call us.

Seemingly out of the blue, Rita started waking up scared and coming into our bed night after night.  She would stay awake in our bed for 30 minutes or so and then agree to go back to her own bed.  At the time, I just attributed it to the excitement of Halloween and her upcoming birthday.  I now think this was probably a precursor to the hallucinations that she eventually had.