Sunday, April 10, 2016

Charlotte's Fight: Apraxia is nothing but a battle scar

Charlotte is the youngest of three girls and is almost 3 years old. She has fought hard since her birth. She was born at 30 weeks weighing 2lbs.5 oz and having almost no blood in her body. She suffered a Fetomaternal hemmorrhage where she lost 80 percent of her blood volume in utero. Charlotte’s neonatologists said she would not survive thru the night. All her blood levels were critical, she was in multiorgan failure, and she coded multiple times and was at risk of heart failure.  With the doctors help, multiple blood exchanges and her strong spirit she managed to pull through and spent 2 ½ months in the NICU.

We were finally able to bring our sweet girl home and celebrate being together again as a family.  She started in early intervention right out of the NICU where she received PT, OT, Speech, and feeding therapy. She was now on the right track for hitting all her milestones; a little behind, but not bad for a girl with her birth history.  By one and a half she had 2 words “duck” and “that”. I thought yay another milestone met. Well then after 3 months of always being able to say those words she lost them. I did not know she could lose words .I mentioned this to her early intervention therapist who we love and had worked with back in the NICU, and she too was concerned about this. Charlotte was soon evaluated and diagnosed with severe apraxia.

  At Charlotte’s birth we were fighting and hoping for survival, and now at almost 3 we are fighting for her words and sounds. She is now in intensive therapy. It is exhausting some weeks but worth it.  We will continue to fight for her words, but until then I will not take anything for granted.  You see I was not supposed to get any milestones with this girl so I celebrate everything.  Apraxia is just Charlotte’s battle scar. She has won many battles for such a young girl. Every day is a struggle and I am thankful for all her speech therapists that are helping us deal with Apraxia.  

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