Hi everyone,
Today is Tuesday, March 16th and Gemma is 26 days old, hard to believe she will be a month on Thursday!
I am happy to report that Gemma has been having a very positive week, she is doing so much better and is proving to be quite a fighter!
We are still waiting on results from her SMA test, which could be a number of weeks. Today she had her EMG (nerve and muscle conduction test) and neurology will get the report back tomorrow.
Gemma is still on a ventilator and there are a few underlying conditions that could be preventing her from having the drive to breath but we hope that she will be able to be weaned off.
Gemma appears to be healed from chylothorax so they took her chest drains out and started her on a special formula that shouldn't reaccumilate the same type of fat caused by breast milk.
They took an x-ray today and her chest looks good so far. Gemma is on a range of diuretics to help with her edema, and that has come down a lot in the last week, she is almost back to a normal size!
Since her swelling has come down she has been able to move around quite a bit, she has lifted both arms against gravity in the last few days, which is a first since she was born. Her bilateral femur fractures have healed and we have started physio on her legs to gain more movement. She is only really able to move her feet right now but is showing some flexibility.
They discontinued her morphine and she has been a lot more awake and able to start focusing on things. I am hoping soon that all of her levels will balance out so that they can discontinue her diuretics and albumin (which is causing her to have an additional IV in her arm).
We are still waiting on results from her SMA test, which could be a number of weeks. Today she had her EMG (nerve and muscle conduction test) and neurology will get the report back tomorrow.
Gemma is still on a ventilator and there are a few underlying conditions that could be preventing her from having the drive to breath but we hope that she will be able to be weaned off.
Gemma appears to be healed from chylothorax so they took her chest drains out and started her on a special formula that shouldn't reaccumilate the same type of fat caused by breast milk.
They took an x-ray today and her chest looks good so far. Gemma is on a range of diuretics to help with her edema, and that has come down a lot in the last week, she is almost back to a normal size!
Since her swelling has come down she has been able to move around quite a bit, she has lifted both arms against gravity in the last few days, which is a first since she was born. Her bilateral femur fractures have healed and we have started physio on her legs to gain more movement. She is only really able to move her feet right now but is showing some flexibility.
They discontinued her morphine and she has been a lot more awake and able to start focusing on things. I am hoping soon that all of her levels will balance out so that they can discontinue her diuretics and albumin (which is causing her to have an additional IV in her arm).
It is amazing to see Gemma look so much better and be a lot more alert :)
Thank you for all of your positive thoughts, prayers and support,
Love Amanda, Charlie & baby Gemma
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