Friday, April 20, 2012


Josie is getting ready to transition out of Early Intervention, which means I need to get ready to send my baby girl to preschool.  In preparation, we are touring schools in the area to see which will be the best fit for her.  We have visited two schools this week and have an open house at the third school at the beginning of May.

We took Josie to the neurologist yesterday and he has ordered a 24 hour EEG for the end of May.  We are to bring her into the office to have the electrodes placed on her head, and then we go home, returning 24 hours later to have the electrodes removed.  I asked the doctor how I keep her from pulling them off and he told me to tell her not to touch them.  Yes, OK.  That seems logical, I suppose.  I imagine this will be a challenge for us as she is three and she will have all these wires protruding from her head.  I was told by one of Josie's teachers that it will look like a helmet.  If Linus is still wearing his helmet at the end of May, they will look like twins.

My Josie is such a sweetie pie.  She has faced many obstacles since she was born three years ago.  She had trouble sucking after birth and could never successfully nurse.  She experienced an ALTE (Apparent Life Threatening Event) when she was six weeks old and was airlifted to the children's hospital.  She was diagnosed with Transient Hypogammaglobuliemia of Infancy (which she thankfully grew out of, hence the word transient), which just meant she had a low immune system and was sick often in her first two years, including two hospitalizations.  She has tubes in her ears, and has recurrent ear infections.  She gets Speech, PT, OT, and Special Instruction.  She has been diagnosed with Hypotonia, Dyspraxia, and Developmental Coordination Disorder.   

Josie finally walked when she was two.  She is finally stringing two or three words together in an attempt to speak in sentences.  She has improved so much since she started with Early Intervention.  Today she told me she was 'hung-y" and she rubbed her tummy saying "in my tummy."  When I was pouring her juice, she grabbed the top to her sippy cup and closed it saying "le-mo-ade" (lemonade.)  Finally, she is telling me what she wants and what she needs.  It is so hard when your baby is crying and she can't verbalize what is wrong.  

I am having trouble thinking about letting my baby go to school and be away from me for so many hours every day.  

I have to stand back and let her go.  I have to do what is right for Josie, but all I want to do is keep her close and protect her.

I know she will be fine.  She is headstrong and stubborn, bright and bubbly, sweet and lovable.  Those teachers won't know what hit them when she gets there.  

I can't wait to see what the future holds for my sweet girl.

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