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!

24 hours later...

...we are home! The EEG I'd been dreading for weeks came and went and is now behind us. We arrived at the hospital around 10am and were quickly shown to our room. Julia was in a great mood for the next couple of hours, we snuggled together in her hospital bed and watched Noggin on the new flat screen TVs they have in the monitoring rooms (nice upgrade, Childrens!) She didn't seem to be bothered being back in the hospital, maybe because at first she didn't know we were at the hospital. As we walked down the hallway to admitting she said "Okay, time for the airplane!"...yeah, she thought we were at the airport, which I can understand. The busy hallways and tall ceilings in the lobby did conjure up images of the airport.

Once the EEG techs came in to get her wired up the fun began. There was a lot of tears and they ended up having to use the papoose board to keep her still. But after all the leads were attached it only took some hugs from mom to calm her down and we settled in for an afternoon of more TV watching. There were only a few times she tugged at her cap and she did say at one point that her boo-boos itched (she kept pointing to her head and saying "my boo-boos"...so cute!) But other than that she was happy for the most part to stay in bed playing with some of the goodies I bought in the gift shop, napping or watching TV. The hospital food was a big hit as well...chicken tenders and fries for lunch and a quesedilla and fries for dinner. What more could a 4 year old ask for?!

Her neurologist didn't have time to stop by but did call me around 5pm. She said she'd been taking peeks at the monitoring and that it looked very good. No seizures, not that we expected any. I asked her if she saw any spiking and off the top of her head she said she didn't think she saw any...which is awesome. She'd also pulled up her last EEG prior to surgery to compare and said it was like night and day. I was able to view the monitor myself for a little while immediately after they hooked her up. It was hard for me to make sense of what I was seeing since she was still crying, moving around, etc. But it did seem very different from what I was used to seeing before.

She fell asleep around 8pm and I shared her hospital bed with her which made for a GREAT night's sleep as you can imagine. :) We were awoken right at 6am by another EEG tech to get her leads removed, were dressed and out of our room by 6:30 and out of the hospital by 7am. It was great.

So no official results yet. We are leaving for Detroit on Sunday to see Dr. Chugani on Monday. Hopefully there will be something ready by that point that can be faxed to him so that we can make some decisions on weaning her Vigabatrin. I am just so relieved that part is over.

Julia-isms

Julia tidbits:

• The things that come out of her mouth nowadays never fail to crack me up. I really shouldn't laugh, it's not funny...but it's nearly impossible to keep a straight face. Her favorite word for the longest time has been "NO!". Whether it's telling her it's time for bed, time to go to school, time to sit on the potty, the first response is usually a firm "No!" To which I often say "Don't tell me no! Yes!". Yesterday as I was getting her in the car for school she was saying "No school!" and I was responding with "Yes school!"...to which she said..."No tell me yes!" Hilarious stuff.
• Bath time is still a favorite, for her and Daniel both. The other night I asked "Julia, are you ready to get out?" And she very politely responded..."No...no thank you".
• We were driving home from therapy Monday night...I was lost in thought trying to figure out what to make for dinner. I caught Julia's reflection in the rearview mirror and she was looking at me with a concerned expression. She then said "Mommy, no sad...be happy!" I said "Mommy's not sad honey...see?" and I smiled at her. To which she responded..."Yay, Mommy's happy!". She is so concerned with other people's feelings lately. I stubbed my toe last weekend and she started crying because I had a boo-boo.

Yesterday we had quite the scare...I got a call from the school nurse that she had tripped and hit her mouth on the corner of a bookshelf. Her top front teeth were loose and she had bit through her lower lip. We took her to the ER to get checked out and thankfully she didn't need any stitches. We also saw her dentist later that day and he feels like it will be okay...in his opinion the teeth will probably not fall out. They were pushed back and may even go back to normal. Going to the ER was pretty traumatic for her...there is no doubt that hospitals have a bad association for her. It will be nice to be on the other side of next week's EEG.

Happy Happy Birthday

What a bad bad blogger I am. Almost 2 months without an update...shame on me!

It's so much harder to be inspired to write when things are going well, funnily enough. Life has been busy but very very good. Julia is doing well and is still seizure free. What a blessing it is to be able to say that. We saw her local neurologist about a month ago and she wanted to start weaning her off Vigabatrin. I would love nothing more than to see what happens when she comes off medication, but we were concerned that perhaps it was too soon after surgery. I emailed Dr. Chugani for an opinion and he felt the same way, that it was a bit too soon to make any med changes. So we have a 24 hour EEG set for March 4th here and then we will be headed to Detroit for an office visit with Dr. C on March 8th.

Despite my reluctance to make any med changes without Dr. C's approval, I decided to meet both doctors in the middle and reduce only her morning dose. So she went from 750mg twice a day to 500mg in the morning and 750mg in the evening. Not a huge change...but boy, what a huge difference. Her attention is noticeably better, her speech is noticeable improved...it's amazing. Part of this may be to continued healing and improvements post surgery, but it's hard not to draw the conclusion that the lowered meds may have something to do with it. At any rate it makes us very excited for the future if and when she is able to entirely come off medication. We don't have any real reason to think she can't come off the meds eventually, but you just never know.

Our schedule is crazy with physical, occupational and speech therapy each twice a week. Her physical therapist told me last week that Julia had met all of the original goals set that were surgery-related. She no longer is showing any right-sided weakness when it comes to walking, climbing, etc. So now we are going to work on meeting age appropriate goals...she is still clumsy, still cannot jump with two feet, stand on one foot, etc. It was very exciting to know that she has come so far in a relatively short period of time.

We also celebrated a big milestone this month...on February 1st, Julia turned 4 years old. We had a wonderful birthday party in San Antonio with our family.

And yes...we had ponies. They're pretty easy to get in Texas, as you may imagine. Julia didn't want to ride at first, which was a little disappointing but not entirely surprising. I rode the larger white pony in the background since the thrill of the ponies wore off kind of quickly for the other kids and we had over a half hour left. Once she saw me, she got very excited ("mommy's horsey!") and wanted to ride too. After that we couldn't get her off! She cried when it was time to say goodbye and only the promise of cake cheered her up.

Happy birthday to the sweetest girl I know.