Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Tuesday, July 13, 2010

Overdue Update:

We have had a busy last two weeks, including lots of appointments at various places.

Cardiology: At Joel's last appt on the 7th, his EKG & echo looked amazing. Stefanelli said if it wasn't for his lung clots, he would pass him for his once-a-year check up. This is awesome.
Hematology: Dr. Irwin was pleased with Joel's progress. Full blood workup showed all normal levels, which allowed us to drop his diuril down by half & discontinue aldactone completely. His thyroid levels were normal also and we discontinued his synthroid. Genetic testing was done with the same bloodwork, so we will know if Joel needs to be on a blood thinner forever, or just before "body trauma," like surgeries or procedures. Hoping for the latter of the two.
Speech: What a huge milestone this week with Jennifer! Joel took his first bottle EVER, and did great. His wean & med changes were pretty extreme since then, (lots of vomiting & choking,) so he hasn't had one since, but we were given the ok to give him one 10ml bottle a day and work up from there. I'm ecstatic!
GI: Finally got our Doctors right. We were scheduled to be with Dr. Pickens. I met him for one appointment, and I don't care much for him. Thankful that we were able to get back with Mimi in Tacoma. Our main concern was his Reglan every 6 hours. It increases motility, and Joel's been crapping almost every diaper...(not sure what I'd do without cloth diapers!!! HOLY COW!) So we were able to get that decreased in half. This med is for his reflux, and so he's been throwing up more....after his wean is over-over, it should be better. His feeds were also increased, and in 3 weeks, we should be up to a point where he gets to be off for 3 hours/day instead of 24 hours of continuous feeds.
Pulmonology: We had an appointment with Ricker a week after we got home. His only goals for Joel are #1, to grow. #2, not to get admitted. I'm fine with both. :) It's not fun trying to wean a kid off a vent when they're going through withdrawals, and by August, we'll have grown a bunch.

At 4 months, Joel weighs 11lbs, 4 oz. Thanks for reading!

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