First GI Appointment

Jaime sporting his new CDH Awareness shirt made by Cindy from Embroidery By Cindy.
http://www.etsy.com/shop/EmbroideryByCindy

Jaime went to see a GI dr. here in Cleveland. The first thing I asked her was if she had ever taken care of a CDH patient...guess what her answer was?!? NO! Surprise, surprise! UGH!
Anyway, we talked about Jaime's weight, growth and reflux. She referred us to a nutritionist to have his weight monitored by her....the only problem with that is the nutritionist's next available appointment is March 31st. So, the dr. was going to email her to see about getting Jaime in sooner. In the meantime, she added was something called Duocal. It's a high calorie powder that we are to add to each bottle just to add calories. She gave me a few sample packets to try out until Jaime sees the nutritionist. The theory is, this will help him get extra calories and nutrients needed to grow better.
Now, as for Jaime's reflux...she changed his suspension Prevacid at 8mg a day to a solutab at 15mg a day. I have to dissolve a tablet in 10cc's of water every morning and feed it to him through a syringe 30 minutes before his first bottle. This is supposed to be an extended release and is to work all day. We shall see! I got the Rx filled today, so we will be starting it tomorrow.
As for stats...well, I was really impressed...Jaime weighed exactly 17lbs today and was measured at 28 inches long. He's getting there! I think that's great, but once again, the GI dr. like all of the rest of them brought up a g-tube! I told her I was anti g-tube....she understood that there are additional risks with the hemophilia and also made mention that she would not be the one inserting it if the need arose...she'd let Jaime's Cincinnati surgeon do the honors! (The funny thing about that is that he WON'T do it, either!)
Speaking of Jaime's surgeon...Dr. Tiao and I communicated via email the other day. I was wondering why Jaime's bulge was gone, which by the way has popped back out a bit today! :( He thought it seemed a bit odd, but that is typical with a hernia in general, so it's either from the incisional hernia or the fact that he may be getting some muscle tone in that area due to his most recent gross motor skills. Jaime's due for his stomach emptying study on Monday, which may or may not shed some light on things!
Oh, a quick update on night one of Jared and Jaime sharing a room...Jaime woke up twice at 12:30 A.M. and at 4:30 A.M., Jared never woke up until after 7:00 A.M. which means that he did not hear Jaime! So far so good! I just need to come up with a good bedtime routine...often times Jaime goes to bed later than Jared. I have to hook Jaime up to his monitor and set it, as well as put his O2 on...this is a bit noisy, so I think what I may do is hook Jaime up to everything downstairs and take him up to bed once he's asleep. I don't know for sure, but we'll need to come up with a better plan so that Jared's bedtime routine isn't interrupted.
That's about all for today! Here's a picture of Jaime sporting one of Jared's old outfits. Ironically enough, it was the very outfit that Jared had his 6 month pictures taken in...eh, so Jaime's 4 months behind where Jared was...no biggie! :)

Hoping everyone has a nice, warm and relaxing weekend!