Tuesday, October 04, 2011

Under Our Belt

We now have one month of school under our belt. Jamie is enjoying third grade so far, although the amount of homework has increased, which is an adjustment for all involved. I am definitely of the opinion that school and homework come first, but I admit it is tough to squeeze it in on those days we are also juggling one of Clare's after-school therapies and Jamie's evening soccer practices. There are a couple days during the week where homework is done somewhere other than home! But Jamie is an avid student and a hard worker. He landed a speaking role in the school play (Pinocchio), and Shawn is going to help out with some set-building this year.

Simon started at a new preschool this year. It is a school that is closer to home, and he entered school knowing two children (from our church) in his class. So he is very happy with the change and loves his school. Simon would go to school every day if he could! One day a week, he stays at school for a full-day and has such a great time. He asks me every morning if this is the day he "gets to eat lunch at school." I know most young kids love school (it's only when they get older that starts to wane!), but I always loved school. (Yes, even high school.) I hope my children always love school, too. There will be good days and bad days, but I want them to always wake up eager to see what the day will bring.

Clare has taken to her new school schedule better than we expected. There are days she is tired, and, by the end of the week, she is exhausted, but we all are! But there has only been one day where she came home exhausted to the point of almost not being able to function, and that was on fire drill day. She was so set off from the fire drill all day that both her kindergarten and first grade teachers told me it was a "rough day." Other than that, Clare has adapted very well to going to school all day. She loves eating lunch at school and now orders hot lunch a few times a month, which is even more exciting to her! So exciting that she ordered it on a day she was not supposed to because I knew she would not like it and I had packed her a lunch. She ended up not eating lunch at all because she didn't bring her lunchbox to the cafeteria and didn't like the hot lunch. (Told you so!) Now we have a simple note-system worked out with her aide, so Clare only orders hot lunch on the days I can guarantee she will eat it. But she loves eating with her friends and her favorite part of the school day is that she often gets two recesses (one in the morning with kindergarten and then the after-lunch recess with first grade). The best of both worlds!

Clare had her nephrology follow-up last week - kidney ultrasound and visit with the pediatric nephrologist. The calcifications in her kidneys looked the same (not increased, which is good). The nephrologist is still hopeful that Clare's kidneys will grow without the calcifications growing, so she will eventually have more good tissue than bad tissue. We continue to monitor her calcium and sodium intake, but now are under orders to increase her water consumption to 2 liters (or 60 ounces) a day! That is a lot to get into a 6-year old who does not drink very often. Her recent calcium levels in her urine were high as well, so we are prepping for some follow-up tests (including a 24-hour urine study) to determine whether Clare needs to go on medication as well. The doctor again stressed the importance of water, water, water to filter through those kidneys. Clare's aide in school has been great in getting Clare to drink more water at school (and patient with the increased bathroom trips), and we have upped our efforts at home, too. Hopefully we'll see some improvement in her numbers when she has her 24-hour study done.

Our last appointment on the checklist is orthopedics next month. Then we're set (hopefully) until her next nail-biting cardiology work-up (in which we will discuss scheduling her cath). We have some other exciting things in the works for Clare (such as planning another trip to Kentucky to see Dr. Mervis in February). I know it's going to be a great school year!


Aunt Joan said...

SO...what do you do in your spare time?? You certainly are a busy Mommy- sometimes solo, even. I admire you, as well as pray for your sanity! lol. Praying for Clare and her water intake, & especially for her kidney functions. Love to all, as always.

Katie said...

Hello :)
I havnt stopped by in ages, your kids are all getting so big now! Clare is just gorgeous and Violets not a baby anymore (My Sophie is the same age and STILL has no hair!) Good luck with upcoming cardio stuff - always scary. As for the calcifications in Clare's kidney - Its interesting, my hubby has just been diagnosed with a massive number of the things and actually has to have a kidney removed soon - it didnt function properly from birth apparently due to the calcifications and the kidney is really small - they actually thought it was missing for along time- Im amazed it has only been picked up now (age 33). I wonder if he has too much calcium too - and the connection with Jaiden... Hmm anyway Im rambling. Great to re-visit your blog, take care!