Progress for J! (and 1 year seizure free!!)

When last I posted, I wrote that J was on a developmental plateau. Since then, however, she has made unbelievable progress!

On July 22nd we celebrated 1 year seizure free! She has remained seizure free since then and had another overnight EEG at the end of July. The doctors first described the results as showing an “irritable brain,” meaning that J was at risk for seizure, even though she hasn’t had any. However, a couple months after her EEG we had a visit with the neurologist, just to check in, and she said that, upon second review, she felt that the EEG was actually relatively good. J will likely never have a 100% normal EEG, but the neuro does not think J is at risk for seizure right now, which is a positive thing for us, because our goal in the next six months is to wean J off her Topiramate. Because she has grown quite a bit since her last dosage increase, she’s likely no longer on a therapeutic dose (she takes 30 mg in the morning and 45 mg at night, and she is now 30 lbs). We will keep her on this dosage (barring any issues) until our follow-up with neurology in six months, at which time we hope to start getting her off of it.

J’s getting a lot closer to walking, though she is still yet to stand and balance without holding on to anything. I suspect that standing and walking are going to come to her at roughly the same time. Her balance issues, I think, stem from tightness in her hips and knees. She doesn’t straighten them when she stands, but we work on stretching her hamstrings every day (it makes her giggle!). If we can resolve that spasticity in her legs, she’ll be moving along in no time. She’s to the point now where she much prefers to be upright, she has the determination.

J’s communication skills have jumped significantly. At the start of the summer, she didn’t respond to her name and didn’t seem to understand anything we said to her. Now, she definitely knows her name (plus a few of her many nicknames). She understands some of the things we say to her, like “don’t touch” (which works about as often as it does for any toddler), “hungry,” “milk,” “snack,” “clap your hands,” and, “can you say . . . ?” And she can say, “more.” “More” is her first word. I can’t tell you how amazed I am that she knows a word. I never thought she’d be speaking this soon. She says “more” all the time and she completely understands its versatility. She uses it to request more food, more drink, more play, more teeth-brushing, more of whatever it is she hasn’t had enough of, and she also uses it to indicate to us when she’s hungry (it’s probably clear by this point how highly motivated she is by food!). I bet she’ll be saying more soon. She pays very close attention to the way my mouth forms words when I’m speaking to her and sometimes she imitates the movements soundlessly with her lips. I can see on her face at times that she wishes she had the word for what she wants to say, which is wonderful! She knows there are words she doesn’t know, and she understands the purpose and usefulness of verbal communication.

Her imitative skills have also improved greatly. At the start of the summer she did not imitate at all and even seemed resistant to the very idea of it. Whenever we tried to encourage her to copy us, she would direct her attention to something else. She still does that when something seems too complicated to her, but she will imitate a lot of simple play (splashing water, patting hands on a surface, clapping, clapping two objects together, peek-a-boo).

We’re incredibly pleased and encouraged by J’s progress. Her VT therapists are truly amazing, and it’s been wonderful being home with her so that I can work with her. She has benefited noticeably from the one-on-one attention. In January 2018, she’ll be starting daycare full time. Many have asked if I’m apprehensive about sending her full time, coming from a stay-at-home-mom situation, and the answer is: not at all! J does not have stranger or separation anxiety and I’m not really worried about how she’ll adjust to being away from me. She is very curious about other children and I’m so excited for her to have the opportunity to be around kids her age several days a week. I, myself, will definitely miss spending so much time with her, but if I’m honest, being a stay-at-home-mom is no walk in the park (except for when we go to the park). I love, love, love being with my daughter and I appreciate how lucky I am to have this opportunity, but I also look forward to doing something in addition to being a mom (right now, momming is pretty much all I ever do).