Some of you know what is going on, others are wondering what is going on from Facebook hints. This is to update everyone about the events of the past few days.
Our Amelia has always been small, she’s tracked at about the fifth percentile since being born. But this isn’t unusual if you’ve seen us and our families – we’re not large people. However, we began to be concerned as her developmental progress was definitely behind. She is 8 months old now and just able to sit – but not perfectly, she has a couple cases of rolling over but never much and hasn’t shown any interest, and she only began grabbing and playing with objects in the last month or so.
On Thursday, December 16, Susanna took Amelia to the doctor to check in on these concerns and we found out she had fallen in weight below her track. Over the next couple of days we attempted to feed her more as she’s started eating solids.
On Tuesday, December 21 Susanna took her back to the doctor to check in on progress – but instead of any progress she’d lost an additional 3 oz. We admitted her then to Long Island College Hospital for testing and observation.
Our plan had been to drive to Atlanta for Christmas – I had just picked up a rental car when I received the call from Susanna that she would be admitted to the hospital, and we were told here to expect about a week in the hospital – Christmas at the hospital.
So far they have done blood and urine tests and everything has checked out ok. She does have “excess tone” as the doctors keep saying. Basically she is a bit rigid and the problem is especially that the tone in her tongue makes it difficult for her to eat. What they do not know yet is did the weight loss come as a result of or is it a cause of the excess tone.
They’ve put a feeding tube through the nose to monitor exactly how much goes in and see how she responds. She has already gained 4 oz and today they increased the amount of formula from 2 oz every 3 hours to 3 oz every 3 hours.
Various specialists are looking at things – they are trying to minimize poking and prodding, but based on analysis she may have some additional testing.
The goal right now is to get her weight up and stabilized, then to determine causes and solutions in order to correct and maintain going forward.
As I was already scheduled for vacation – Susanna has been able to stay at the hospital with Amelia while I go back and forth and take care of Micah and Ellie. Susanna’s mom is also flying up, arriving on Christmas Eve to stay for a week.
Through all of the excitement we are also trying to hobble together a Christmas for the kids. Many of our gifts had been shipped to Atlanta – my parents are shipping them back. We will likely try to transport our stuff here to the hospital – maybe take over the play room as things have been quiet.
We appreciate the support and prayers from everyone. Thank you to Ben and Franci for bringing us dinner last night and Christmas decorations today. Thank you to Pastor Murphy for stopping by to pray for us and Danny who is bringing food tonight. Also to Mel for helping my hobble together some of Susanna’s Christmas gifts (her main gift WAS going to be a night on a chattanooga riverboat). And of course family – my parents for shipping stuff up and Susanna’s mom for flying up to help last minute!