Friday, May 23, 2008


This was a busy week and we are glad its over!!!

2:00pm physical therapy and Sure Step fitting

10:30am - appointment with pediatrician
12:30pm - special instruction
4:00pm - physical therapy

6:00pm - aqua therapy

3:00pm - feeding team

We also received the results of the renal and bladder ultrasound. CHOP is so 'efficient' that we will receive the test results before the doctors get a chance to review them and call us. So, of course, then in my neurosis, I have to go on a google/wikipedia/medhelp expedition to try to decipher the medical mumbo-jumbo written on the results. I know what you're thinking, "why don't you just call the doctor?" I do that too, but I have to prepare myself and google does a fine job of that thank you very much.

The results showed that Amina has some mild calsification in her kidneys which could be the beginning stages of kidney stones. Apparently this is also common in Williams' Syndrome. No treatment is needed at this time but we have to limit her calcium intake.


Nicole said...

Hi Ginneh,

I'm Nicole and my daughter, Emerson, has WS. Emerson sees a feed team, as well, and we are constantly trying to bulk up her diet. I know lots of moms with kids with WS use duocal and I do know that it can be quite expensive. Our Feed Teams philosophy has always been to do it naturally. The easiest way for me to add fat and calories is to do it through her smooth foods and liquids. Everyday she has a low calcium yogurt with 1 TB of Flax oil and her last bottle of the day (we use low calcium soy milk) I add 1TB heavy cream and 1TB of olive oil. She also eats lots of cream cheese. I always assumed that heavy cream and cream cheese would have LOTS of calcium, but they don't. The Philadelphia Cream cheese I use has 0 calcium and the heavy cream has only 2%. The higher the fat content, the less calcium.

Emerson is now 27 months and I have finally accepted the fact that she is going to be skinny. She is 24lbs and skinny. ALL kids with WS are skinny. I still am a bit shocked though when she is romping around in her diaper because there is just nothing to her. Take care.

Thembi said...

She really loves that lil bell. So cute! I have to remember to bring my Little Shop of Horrors and Grease CDs next time I come over.

Tes & John said...

Hi Ginneh, I do not have much to offer on the calorie issue except I went natural also. Lila is now five and she will eat the hand that feeds her. She is all muscle not a ounce of fat on her. She looks quite normal in clothes, naked she looks like a plucked chicken:)
I see you have a mirror for that girl, Lila's early daycare provider became aware really quickly if she put a mirror in the room Lila would be very content.

Amy said...

Hey Ginneh! Just to catch up, Avery is underweight, always has been always will be. I pretty much worried about it all the time until she was 2 and just figured it is what it is. But keep trying anything you can at this age to put the pounds on! It is important. Instead of duocal I used polycose which was $10 a can and that would last about 6-8 weeks. Avery used to be the WORST eater due to feeding and sensory issues, finally now at 3 yrs I call her my little piggy. She just eats and eats, it makes me so happy!!! And also Avery has calcium buildup her in kidneys too, it hasn't changed at all over the past 2.5 yrs, thankfully. No kidney stones. Hope things are going great.