As you may have noticed...I haven't updated in a long, LONG time. I've got about 5 or 6 drafts saved that I never finished and never published. Why? Quite frankly...its a combo of being superstitious and having immense survivor's guilt. Why have we been so lucky? (knock wood) Why is Julia not only seizure free but making amazing developmental gains? (knock wood knock wood knock wood) So many of our surgery friends are dealing with relapses and even regressions. To talk about Julia in a public setting just feels shameful. My heart breaks for my friends who are still going through the fear, agony, stress, and sadness of watching their child seize. Its as palpable to me as just about anything and I hate it so much.
A lot has happened since I last wrote. We finally had Julia evaluated by our school district...why we didn't do this a long time ago I do not know. Well, I do know...EI was not very helpful, we went the private insurance route for therapy, and so the transition at age 3 that most kids go through never happened. Then we had surgery, then recovery...and before we knew it she was 4 1/2 and it was time to acknowledge that the public school system would give her the most support that her condition ultimately needs. So the evalution took place over the course of September and October and in November we had our first IEP meeting to go over the results. As suspected, she was found to be delayed in all areas with speech being her biggest delay. She was offered a spot in their preschool program and started that right after Thanksgiving. So now she attends her private preschool 5 mornings a week and goes to the public program Monday through Thursday afternoons. She gets 30 minutes of PT, OT and speech a week, which does not seem like a lot but is all they were prepared to offer.
At first we didn't know if she'd be able to handle it. The IEP team was appalled when I told them I wanted her to do both programs saying it was too much for her. But she has thrived. I don't know what has been so magical about the combo but it has been amazing. She is eager to go to school every day and on Fridays when she doesn't get to see Marianne, her teacher at the public school, she is NOT happy about it. She is making friends, playing with them, talking to them...that is huge for her. She used to keep to herself and not really engage with her peers, now she engages with them on a somewhat typical level. She is even starting a little bit of reading...she can sound out letters and sight reads all kinds of words. Language is a work in progress and will be for quite some time, I'm afraid but wow...she is getting better and better all the time. Most importantly, she is happy...she is healthy...overall we are just so incredibly, incredibly lucky.
Even though she turned 5 last month, we've decided to do another year of preschool before kindergarten and she will continue with mornings at the private school and afternoons at the public school. I am really pleased with that decision and hopeful that when kindergarten comes she will be as prepared as possible.
So with all of that said...I'm tempted to hit the "save" button instead of "publish"...but I'm going to publish anyway.