Update on Kinzie

We went to Phoenix on Tuesday for the first of many monthly follow-ups. We saw neurology, GI, and urology.

GI was first. She had gained 1 oz now weighing in at 10 lb. 5 oz. and was 20.5 inches or so. She is kind of short so she still looks chunky but if you compare early pics to now, her double chin is shrinking. They changed her formula to one of the most expensive on the shelves - Alimentum. My pediatrician though had a case load of Nutramigen samples and so we switched her again once we got home and talked to her. Both run about $27 for a small can. They are hypoallergenic so hopefully they will stay down better. Also we are adding oatmeal instead of rice to see if she has a rice allergy. We are still thickening to nectar for reflux. She can handle thick consistency though for swallowing. She is also extremely constipated from all the rice and so as of today (we were in phx on Tuesday) she just passed the stool. We did have to use a glycerin chip though.

Neurology was next. Same old - they know nothing but I did like the doctor that we will be seeing. She knew Kinzie's case well and told us to treat her as any other baby. Nobody knows that their kid will walk by a year old - they just assume and we should too. We do need to stimulate her more to get her more awake though but that may happen if we can straighten out the food issues. We will return at 6 months for an MRI and an EEG in 1 or 2 months.

Urology was last and the one we were most looking forward to as I was still cathering her every 6 hours to help alleviate the urine buildup in her bladder. However, they did the test and found little info. Basically they slowly fill her bladder and monitor the pressure with a probe and see at what pressure her bladder releases. The only problem was that her bladder did not release the large amount they put in. He stop the test at a 100+ cc and determined that she has a large bladder. He does think from my notes that she does empty the bladder completely when she goes, but is still not sure why she goes so long in between emptying. We return in 1 month for consult and will repeat the study at 6 months.

She is also being evaluated for therapy and assistance by the following programs: Northland Therapy, NICP (for being in NICU), SSI, DES, and DDD. More to follow when those are approved and kick in.