Gemma is 5 months old and
weighs 10lbs 6oz.
In the last update Gemma had an accidental extubation and we felt that her new tube was causing her irritation and secretions. She had changed so much and this continued for a few weeks, where she was fussing and tiring out. Then a week ago she had another accidental extubation but right after Gemma seemed to be doing much better! so we think our suspicion of the tube was correct. None of the RT's agreed but it was too coincidental.
Gemma has had a good week of being a lot more awake, alert and content.
On July 14th we had Gemma baptised. The service was performed in her room at the hospital with Charlie, my mom, dad, sister, grandma and our chaplain friend Philip. Gemma wore the dress that both my sister, my niece, nephew and myself wore, which was from my great grandma. It was a nice occasion and we were even presented with a baptism certificate and candle.
The next day on July 15th (also our wedding anniversary) there was an opening for Gemma to go in for a muscle biopsy, we were hoping to get more information before making a decision but the next available date wasn't until September. We went ahead with the procedure and Gemma went to the OR to have a section of her muscle removed for testing. It was a difficult decision but it is the only way that we are going to find out more information about her condition.
Gemma has recovered quite well and we are hoping and praying that something positive can come out of it so that we can have some hope for her future. The neurologist believes that the prognosis will remain the same (that her muscles will weaken over time) however if the muscle is different that they suspect then it could alter the prognosis. After the biopsy we were told that Gemma didn't have very much muscle but they should have enough and we should know some results within a few weeks.
It has been an exhausting rollercoaster for us not knowing what the future holds for Gemma.
Thank you for all of your thoughts and prayers,
Love Amanda, Charlie & Gemma
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