Sorry for not keeping up the past few weeks, but let me catch you up on Mr. Ollie :)
Ollie had an EEG done to make sure he wasn't having seizures and to check to see if he was at risk for seizures. The test itself is simple and noninvasive, so I was all for it! The best news of all was the EEG reading was normal :) Now...do a happy dance with me!!!!
For three weeks, Ollie only gained 2 ounces. That being said, I look at every week that is not a loss in weight a very positive outlook no matter if he stays the same weight. Like I explained to the doctor....every itty bitty weight gain is a progress in the right direction! I am very happy to tell everyone that Ollie is over 8 pounds!!! Holy cow...I always almost thought it was becoming impossible, but Ollie always seems to amaze me!
Ollie had a follow-up appointment with Pediatric Surgery for his Ladd's procedure and G-tube placement. We all agree that Ollie's incision from his surgery looks phenomenal. The surgeon switched Ollie's MicKey tube to a MicKey button, which lessens the chance of him pulling it out. So far, we are loving the MicKey button and I don't think it bothers him as much :)
Well....Ollie had his second swallow study last week. I was trying to stay optimistic, but I was prepared to not have hopes set too high. Poor guy aspirated on every little swallow he took. They tried a super thin nectar to a thick nectar, but he aspirated on all of the trials. It's just too risky for him to take anything by mouth.
We meant with developmental pediatrics last week for our initial appointment with them. We went over Ollie's CHARGE diagnosis. He reiterated to us that we don't know how Ollie will be developmentally or possibility of eyesight. As of right now, Ollie isn't showing any signs of tracking with his eyes nor does he reach for objects, but I am still staying hopeful! The doctor's main concern with him right now is his ongoing throwing up. If his throwing up continues his esophagus could be damaged, he may develop an oral aversion, slow progress in weight gain, and the biggest concern is they may have troubles intubating him for his open heart surgery. We have a few options to try to see if it helps like putting him on continuous feeds so he is getting smaller increments rather than larger volume feeds. We are currently trying this and we don't notice much difference in his throwing up. :/ We will be talking to developmental ped's on Tuesday to move on to option two.
Please keep our little fighter in your prayers and rock your Ollie's Buddies bracelet!
Wednesday, May 1, 2013
Jason and I wanted to spread the awareness for CHARGE syndrome! Also, we wanted to show support for Ollie! We had bracelets made just for this and we want to share them with you as well! We have decided to not set a price on the bracelets and instead we are just asking that you make a donation of any kind whether that be $1 to $1 million dollars (hey a girl can dream)! Jason and I have been thinking of some really neat ideas of how to share they money we make from the bracelets and I will let everyone know exactly what we do decide on :) If you are interested in getting one of these bracelets please send me an email firstname.lastname@example.org