Friday, March 11, 2011
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.
Monday, October 4, 2010
At 4 1/2, my daughter said "I love you" for the first time.
And yes, I cried. :)
Saturday, September 18, 2010
Thursday, August 5, 2010
I really don't want to think about how safe that water may or may not be to play in.
Daniel's kitty cat (or as he says it, "kee-cah"). Kitty Cat is to Daniel what Puppy is to Julia. Aww.
And now for the actual blog part:
Friday, June 25, 2010
Some of Julia's best language comes while we're in the car. Granted, we're in the car a lot. Whether it's going to and from school (she and Daniel are both in summer camp), to and from speech, physical or occupational therapy, to and from the gym, the farmer's market, the grocery store, it seems like we're always on the go.
Today on the way home from school I heard "Why is Daniel's shoe off? Why is Daniel's sock off?". I was beaming from ear to ear. The sentence structure! Amazing! We got home and sure enough, Daniel had taken one shoe and one sock off, leaving the other ones on. I'm getting a lot of "why" questions from her these days which I love. She's always been more of a factual kind of girl, happy to point out what's going on around her but never really questioning why. Now I'm getting "why why why" all the time...and of course now I'm encountering the familiar parenting frustration that usually ends up with "I don't know why, it's just the way it is!"
Another backseat gem...Dora the Explorer is HUGELY popular in our household right now. Not only does she want it in constant rotation on TV, but she wants her Dora blanket, Dora backpack and Dora book while she watches. Dora went swimming on a recent episode and Julia ran upstairs, put on her bathing suit and came down to watch the rest of the show. Daniel even has jumped on the Dora bandwagon and adorably says "Oh man!" when Swiper appears. So the other day, in the car, what do I hear from the backseat? "Uno...dos...tres!" See, who said TV wasn't educational.
Medication wise she is doing well. We are now in the stage of the Vigabatrin wean where she's only taking 250mg morning and night. She hasn't been on that low a dose since she was 18 months old. I have a love/hate relationship with lowering her dose, to say it puts me on edge is an understatement. No seizures have been noted but I still haven't let my guard down and don't know if I'll ever be able to, quite frankly. In the first few days after this dose decrease I was worried about some behavior I saw upon waking. Her right leg was twitchy and the timing and look of it was too similar to what we saw with her seizures for comfort. I emailed Dr. C about it who suggested an EEG (groan), talked to her local doctor who said it was probably not a seizure since she was fine otherwise (better), and after a few more days it went away. So whether that was the right approach or not is debateable but so far so good.
So that's what's going on lately in our world. I will try and be better about updates, I know there's a lot of people who are rooting for our girl and I don't want to leave anyone hanging.
Sunday, March 14, 2010
The other morning I was driving Julia to school. All of a sudden a car pulled out in front of me and I had to quickly hit the brakes. Before I could say anything, from the backseat I hear Julia say..."Oh shit!". Although I was horrified my potty mouth while driving had obviously made an impact, it was too funny to not laugh. Which was probably the wrong reaction...the light in her eyes once she realized she'd said something funny probably means we'll be hearing it a lot from now on. Note to self...stop cursing!
So it's now been about a week since we came down on her Vigabatrin dose, we're now at 1000mg/day down from 1250mg/day. Again, we are already seeing a very positive difference. More energy, more speech, just more more more. Amazing. We are nervous though about this weaning process...Michael and I both can't help but remember the awful seizures she had in the hospital right before surgery when she was totally off of it. We just have to remind ourselves that we're dealing with an entirely different brain now. One that has far less nasty stuff to try and control. We may take the wean much slower than the guidelines Dr. C gave us, just for our own peace of mind. I'm going to talk to her local neuro to see if there's any validity in that line of thinking. But so far, so very good.
Monday, March 8, 2010
The final EEG report showed no spiking or seizures when she is awake. However...when she is asleep there is "intermittent spiking in the centroparietal area". Dr. C said that is probably coming from the motor strip where we did the MST. He wasn't overly concerned. Ideally we would have no spiking at all but he said that it's quite possible that over time the spiking will go away because it has nowhere to go now. I was concerned that we wouldn't want to wean her Vigabatrin after that, but surprisingly he said let's do it. That she is not at risk for infantile spasms anymore and the Trileptal should be appropriate for controling the spiking. So we are going down in 250mg increments every 3 weeks or so (I may stretch it out to every 4 superstitiously.) If we see any weird behavior, call him, but otherwise do a repeat EEG after the wean to see how things are and go from there. Other than that he said she looks great and to push the speech therapy, which, you know, duh. :)
So glad to be home and have that behind us for now!