Why is this so hard?

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.

3 Little Words

I had the most amazing experience with Julia last night. It was after bathtime, after she'd put on her pajamas and brushed her teeth...she was sitting in my lap and we were cuddling. And then it happened...I heard the three little words that she had never said spontaneously before. She'd say them if I asked her too, but never on her own...

At 4 1/2, my daughter said "I love you" for the first time.

And yes, I cried. :)

One Year

One year ago today, I handed my baby girl off to a surgeon who I trusted to open up her skull, remove part of her brain, and hopefully slay the seizure monster forever.

One year later...knock wood...but it appears the monster has been slain.

So hard to believe its been a year. On one hand it feels like a million years ago and on the other, it feels like yesterday. Our lives were such hell for those 3 weeks we were in the hospital, and even after that when we came home and were so so worried about our weak, tired, feverish little girl. I think Michael and I are both still shell shocked by the experience. But what a payoff we received. A year without seizures.

Julia had her first normal EEG last month--well, as normal as its ever going to be. The area of her brain that's missing will always have an abnormal reading, that just goes with the territory. But the intermittent spiking we saw back in March when she was asleep is gone. Gone. I'm still a bit in shock, which probably explains why I haven't blogged about it until now. I thought for sure the day we had a normal EEG I'd be shouting it from the rooftops. We went in for the EEG because we thought we were seeing complex partial seizures. She would sort of look off in the distance, act funny, and we had just finished weaning her off Vigabatrin so of course we were on high alert. We both fell into such a funk worrying...I have not been that depressed in ages. I cried daily, I hated everyone whose child had never had a health issue to break their hearts like ours had been broken...it was pretty ugly. And then to get the news that no, the weirdness wasn't seizure related...and not only that but there is no spiking in her brain at all...wow. Fantastic news to be sure but could we really be this lucky? Its still hard to fathom.

I now see that even a normal EEG doesn't immediately erase the damage that had been done. We are still dealing with language issues, and probably will be for a long time. I wish I had a crystal ball so I could see into the future and know what her language ability will be 5, 10, 15 years down the road. Her comprehension is progressing well...she understands so much and gets frustrated when she can't communicate well. If she does something wrong lately, she'll say "I'm really sorry I..." and it stops there...she can't put into words what she's sorry about. I always fill it in for her and she smiles like yeah, you got it. But I long for the day when she can finish the rest of the sentence herself.

It's hard to love someone so much and watch them struggle to catch up. But I'm so incredibly, immensely proud of her at the same time. She is such a sweetheart, such a little mommy to her baby brother, so funny and smart (and let's not forget beautiful)...it's hard to let the melancholy consume you for too long when to her the world is a happy, exciting place most of the time. I am so grateful that surgery was even an option for her, and that so far (again with knocking on wood...don't know if I'll ever be able to stop) it has been a success. We are truly very lucky!

Adios, Vigabatrin

First, some pictures (because Blogger is clunky and always uploads the pictures to the top of the page...grr!)

Water!

I'm imaging Julia saying "Hey Daniel...come back!", an oft heard phrase around these parts.

I really don't want to think about how safe that water may or may not be to play in.

Puppy's still kicking.

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:

Its been over a week since Julia last took a dose of Vigabatrin. It's amazing to think that a drug that she took twice a day since she was 6 months old...four years of her life...is no longer a part of our daily routine. No longer does she have to swallow multiple tablets morning and night. No longer do we have to jump through the ridiculous hoops that were set by the drug's US manufacturer as part of their CYA policy (cover your ass, if you have to ask). It's glorious! Glorious, I tell you. The twitchy leg thing I talked about in my last post hasn't been seen in a long time either. So now she's only on one drug, Trileptal, which is a liquid medicine that she doesn't seem to mind (in fact she sometimes calls it her candy).

Therapy is going very well. She seems to have had another language burst lately and her speech therapist told me yesterday that she's doing very well with describing stories in books. For instance she'll ask Julia "What is the girl doing?" And Julia will respond with she's running, she's playing outside, etc. She also likes to get my attention by saying "Hey Mommy" which cracks me up.

She is also doing well in OT and her therapist says she has really regained a lot of dexterity in her right hand, the one that was affected by the surgery. She no longer has to hold a puzzle piece for example against her stomach in order to support it so she can turn it around. She can use her fingers to turn it around one handed. I got to watch her on the closed circuit camera last week and I was amazed by her attention span and level of cooperation. She's come such a long way!

Tomorrow is the last week of summer camp for both kids. They participated in an 8 week morning program at their school and LOVED it. Julia got to swim every day, which was heaven for her. I can't believe how well she does in the water. She swims holding on to the noodle and kicks her feet, and would stay in the pool for hours if allowed to. Daniel also enjoyed his program, and except for a couple of biting incidences (we had another one today...doh) has adjusted well to being a big kid who goes to school. They will be off for a couple of weeks and then they will start school again on August 25th. We are headed to Boston in a couple of weeks to visit some friends so that will be a fun diversion while they get a break from school.

Overheard from the backseat

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.

Oopsies

I posted this on Facebook the other day but for the benefit of those who aren't on it...

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.

Quicky post because we just got home a little while ago and we are all beat...but it was a great appointment. It was so wonderful to see Dr. C again...I just love that man. Plus we got to see him at the Southfield office which is AMAZING...quiet, easy to get in and out of, just all around better than the main hospital.

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!