a menagerie of inspiration, time, travel and cocktail conversation
Amelia actually pulled herself up for the first time today!!! Unbelievable! When she was born we were told that she probably would not have any feeling below her waist...well, she is showing them! She is really doing well, no more retching, she's talking (Ma, Ba etc.), paddy caking, giving kisses, saying uh ooh, rolling from one end of the room to another, laughing and pretty much just being a perfect baby : )
Amelia is doing great! She's 8 months in 2 days and about 14 lbs now. She is really developing her personality and has the sweetest disposition. She is rolling over, jabbering up a storm and loves her big brother! We saw the orthopedist yesterday and she can now have her brace off for 4 hours a day! She is loving the free time to move around! Each month we gain 2 more hours a day until she gets down to 12-14 hours (not determined yet) where it will stay for 4-5 years. She's making small advances forward with her eating but we don't think she will progress too much more until after her surgery. The surgery is happening on May 5th. She is having what they call a Collis-Nissen. They will essentially cut into her stomach to elongate the esophagus into the stomach which will take the tension off the esophagus which should stop her from gagging. Both surgeons agreed that this is what needs to be done. It will be an open procedure here with the surgical team that we have used with her other procedures. She will be in the hospital for about 4-5 days following the procedure. Please keep her in your thoughts and prayers : )
From Steph and Jeff: As of last week Amelia was up to 13 on 4 ounces and has reached the 3rd percentile! All else was good and they were very pleased with how she looked and acted. Yesterday Amelia had an upper GI test and a swallow study to see how the hernia at the top of her stomach has progressed. It was clear that what was swallowed went down the right tube and not her airway. The hernia looks worse when compared to the last upper GI. The esophagus is having trouble draining into the stomach which could be cause for her gagging. She will most likely need surgery. Here she is pictured with mama Steph.
...She actually said " Ma ma" clear as day yesterday. It was amazing to say the least! She is starting to teeth which makes her mad at times but I think it is helping with her oral aversions. We are making progress in her mouth and they are hoping to start up oral feeds in the coming weeks. She is truly the happiest sweetest baby we have ever known and we are so very proud of her. We say it all the time but she continues to inspire us every day. It almost seems impossible when you think about all she has already overcome in her 5 months of life. We know she will continue to show the Dr.'s what she is capable of and leave them speechless. We have our worries and tears but we are truly blessed.
Young Amelia takes a few steps forward each day. After the setback with the GI tube and the Nissen disruption, health concerns have somewhat stabilized. The VSD (hole in heart) is shrinking as anticipated, so Amelia can eliminate the need for continuing those meds. There are some concerns with Amelia's kidney performance. Doctors are now testing and keeping a close watch on her kidney function. Amelia is now in her final weekly recast phase to correct her feet. Next, doctors need to cut her Achilles tendon in order to gain the 90 degree rotation. Then Amelia will enter into a fairly long phase of physical therapy, which will include a type of brace to wear at night. Amelia is gaining weight again and is tipping the scale at 10 3/4 pounds. She is going to start working with the speech pathologist for oral feedings again soon. God bless this little angel.
