I can not believe it is almost summer! Next week is her last week of school for this school year. Even more amazing is if we can get through that week with no major incidents it will mean a whole entire school year with no hospitalizations or extended time off of school. Her first year of Pre-K it was because of her recovering from her 2nd shunt surgery, she missed most of the 1st quarter. Her second year of Pre-K it was because she had the intercranial EEG monitoring over the summer, and started school late. She missed 2 weeks of Kindergarten due to a shunt revision. So far this year, she has only missed a few days here and there due to typical illnesses (okay and maybe a day or two “playing hooky”).
It has been an interesting school year. November was hard on her. Too many seizures. As I’ve reported in January we started the new medication, Onfi. That continues to be such a blessing. Amazing to think now that a bad day is when we have three seizures events in a day. I can’t say anymore that head drops are completely eliminated, but they are pretty rare now.
I am now struggling with the realization with how profoundly delayed my precious girl really is. What hurts my heart even more is that she has remained at the 12-18 month old level for so long. Don’t get me wrong, I know she has made progress. I can see things in how her fine motor skills are progressing, her ability and willingness to use a pointer finger has come a long way in the past year. Yet in many respects she is the same child. We were dropped from Speech Therapy (private, not school based), because of Becca’s failure to meet any goals, and make progress. She just isn’t doing much of anything with picture symbols, signs, gestures, vocalizations, etc. We can re-evaluate later, but for now, there isn’t much point in continuing.
I came to the conclusion though that over her intercession break I can help Becca the most by starting a sort of intensive homeschooling with her. I can work on many of the same types of activities they normally do in her classroom. I have her IEP, and I’ve gotten input from her teacher and school therapists. Once school is back in session I can continue this year round, giving her extra help after school. With any hope this can help her brain start building some of these connections. The sad reality is that if she ever has a really bad period of seizures again he could really regress again and loose whatever is taught to her. All I can do is teach her as best I can and pray she doesn’t loose what she is taught.
Hard to believe that on the 17th my little princess will be 7 years old. Hard to believe just 7 short years ago David and I were anxiously awaiting her arrival.