Ezri’s speech was the first milestone we noticed was delayed as she grew from an infant into a toddler. She babbled fairly typically as an infant. I even remember on my birthday, August 29th, when she was almost 9 months old (born December 23rd), her saying “ma-ma” while I was changing her diaper and thinking to myself “wow! she just said ‘mama’ for the first time!” Of course it was more than likely just a fluke of syllables she was playing with saying. This was right around the time we were trying to figure out what that huge mass was inside her head and had started her Lupron injections. From about here on out to Ezri’s first surgery at 20 months old there was almost no developmental progress in her speech – it just came to a standstill. Throughout this time occasionally she would call me ‘ma’ or daddy ‘da’ but never these two sounds on the same day. It was if she could only do one type of sound and one syllable at a time and would forget the last one she was saying as soon as she picked up a new one. She would also occasionally make 1 syllable noises with her mouth closed as if she was trying to say something and forgot to open her mouth. Throughout this lagging speech development Ezri did understand everything we were saying as well as followed directions very appropriately (well) for her age and so we knew she was smart in there, even if she couldn’t get it out in words. Through Ezri’s second year of life we also noticed she was very developmentally advanced in puzzle abilities – she was able to easily do 12 piece jigsaws (for 3 year olds) at only 18 months old. My personal belief is that her brain was so stunted in the area of speech from the HH (and whatever invisible seizure activity it was causing) that it was trying to make up for it in other areas (that functioned properly and were able to learn).
Ezri’s first surgery on October 31st, 2008 was a miracle for her ability to speak. It was not totally immediate as she had almost no vocabulary prior, but she was finally able to make progress. She was able to call me ‘ma’ and daddy ‘da’ and Kes ‘Kes’ and her lovey ‘pog’ all on the same day (pog is for puppy and dog mixed together – we came up with it because it would be easy for her to say and now every lovey is a Pog). The day before leaving Arizona (where the surgery was) I was in the condo we had rented for the stay, doing laundry and my laundry basket and I needed to get by Ezri in the hallway so I simply said ‘beep beep’ to mean ‘excuse me’ but in an imaginative child sort of way. A little bit later roles were reversed and I was in her way and she said ‘beep!’ to me! We were all amazed that not only did she use the world contextually correctly but she had only heard it once and been able to repeat it in the right abstract context (beep is what car horns do, right?). Ezri had become this amazing little sponge that was picking up information everywhere. A number of months passed after that surgery and Ezri’s speech continued to progress very well except for the fact she was only able to say one syllable at a time and couldn’t string syllables or words together. This worried me a bit and no matter how I tried to lure her into babbling syllables, it seemed impossible for her. Then, on the morning of St. Patrick’s day 2009 Ezri was sitting in her highchair (~2 yrs, 3 mos) and she said something along the lines of “mo wa” for more water. From there on, she was able to put 2 syllables or 2 one syllable words together, doing about 10 that day and increasing each consecutive day. What a joyful day that was.
Currently, Ezri remains behind her peers in the area of speech and this is the one therapy the school system still provides her, though she can say most of what she’s thinking and is just adorable when she can remember songs to sing. She sometimes has difficulties thinking of words she wants to use as well as difficulties in the motor aspects of moving her mouth to make certain sounds. That aside she understands everything around her perfectly and I know she’s a smart little cookie in that head of hers even if she can’t always get it out verbally.