The Willis Family: Longest week ever!

Wednesday, April 18, 2012

Longest week ever!

Seriously, this week is sooo long! We have been so stinking busy and we are exhausted! We've got a lot on our plates right now. Insurance has denied covering Jensen's formula, CHOP keeps trying to bill us, we enrolled Jensen in Tricare, Tricare tried to deny us from seeing our current pediatrician, we are trying to enroll him in the Exceptional Family Member Program, we have to get all new referrals (for the doctors we already see), we have to find an office to get Jensen's endocrinology blood work done, and we have had two appointments in Chapel Hill this week. Sigh.

We really like our neurologist here in NC, Dr. Tennison. He did an exam on Jensen today and confirmed that he is lacking some muscle tone (which the physical therapist also mentioned). Dr. Tennison also was concerned about Jensen's head circumference, he is only in the 5th percentile on the growth chart. His weight and height are ok, but he wants to re-measure him in a few weeks. We will also be getting another MRI around the time of his second surgery. Basically, we didn't learn anything new, the neurologist just wanted to see him to establish a baseline to see how Jensen develops over the next year. It was pretty nerve wracking to see him flop Jensen around to check his reflexes and muscle tone. He even picked him up under his arms and I thought I might die! (Babies who have had open heart surgery are not supposed to be picked up under their arms for several weeks after surgery, Jensen is past that time frame, but it makes me nervous)

Overall, Jensen is doing well. His reflux is starting to pick-up again, so we will be increasing his meds soon. He is around 11 1/2 pounds now =) He is on the brink of laughing...and we do all kinds of crazy songs and silly voices to try and coax that laugh out! Jensen finally got to meet our pups for the first time! Frankie and Daphne have adjusted well to being back home and are great with Jensen! Daphne stays right beside him when we go on walks and is always concerned when he cries. Frankie doesn't really care so much, he pretty much just leaves Jensen alone.