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.

Is this not the cutest little boy you've ever seen?

Parents of other little boys are exempt from answering that. :)

As promised, here are some of the pictures we had taken of the kids (the rest are on our Christmas cards that are going out tomorrow so those are still a surprise!) I cannot wait for Julia's hair to be normal again! It's reaching the stage where it needs a serious intervention, but I can't bring myself to cut it very short. I'm going to take her to see my hairdresser soon and see what magic she can work.

She continues to do great. The bump up in her Trileptal dose has worked beautifully and there hasn't been a single shake out of her in weeks. Her behavior has been wonderful, although she still needs a serious lesson in how to share her toys with Daniel. And how to share Daniel's toys with Daniel. But for the most part she has been very protective and nurturing towards him. He was sick for the past week with a virus that caused three days of fever, three days of rash, and a lot of clinginess and whining. She made sure he had a blanket on him whenever he was laying down on the Boppy to drink his bottle, it was adorable. Yes, he's still on the bottle, but only for milk. I tried to get him off of it a couple of months ago but he's a stubborn one.

We leave for Texas on Friday and we're all so excited to be spending Christmas with friends and family. Merry Christmas to everyone!

Finally...an update

Once again it's been awhile since my last update...it's probably going to be par for the course here on out. Sorry. Life is crazy, but good. Very very good.

And yet...as much as I would love to say Julia continues to be seizure free, we're just not sure about that. There have been no overt seizures, nothing we can look at and say definitively, yes, that was a seizure. But there has been...shakiness. That's the best way to describe it. And it happened upon waking up, which is when the seizures used to strike. Otherwise she is completely lucid, talkative, the whole nine yards. We emailed Dr. C about it and he raised her Trileptal dose a couple of weeks ago and the shakiness has gone away. That tells me yes...what we saw was neurological. I can't help but think it's related to her motor strip, where they did the MST procedure in an effort to save her right-sided motor function. Hopefully the meds will control things from here on out. It's a bummer...I'm not going to lie. I don't ever want to even think about seizures ever again. But in the grand scheme of things, it's okay. We need to have an EEG done and will get that scheduled sometime after the holidays. That will hopefully tell us more about what's going on in there.

Other than that though she is doing great. We started the Fast Forword program I mentioned in my last post and she is doing the demo programs and has learned to use the mouse. I am amazed at how relatively quickly she picked that up. She can move the cursor to an object, click on it, and drag and drop it appropriately. It's crazy. We are waiting to start the actual program until after Christmas since we will be out of town and the program needs to be done consistently for maximum results. Keeping her focused for the entire 30 minutes is going to be a challenge but I'm sure it's a common problem...she is 3, for crying out loud.

She started speech therapy this week at a new practice. Her old therapist was wonderful but the new place is just a few minutes away from our house, and it was taking up to a half hour to get to the other place. She goes twice a week and had a fabulous week with her new therapist...she was very chatty and showing off her counting skills. It's been exciting to hear her talk in longer sentences. She is also constantly asking me what things are...the washing machine...a car's headlight...a sidewalk curb. And she's retaining all these new words which is exciting to hear. It seems as though her mental processing speed has picked up. She sings songs all the time and hits the words at the right times...previously she always used to be a beat or two off.

Pictures...I've been TERRIBLE about taking pictures. But we had the kids' portraits done the day before Thanksgiving and I should be getting those back soon. Once I do I promise they'll be posted. And now I'm going to post this before something else comes up. :)

Time is slipping away from me! I can't believe it's been so long since I last updated. I haven't even taken any pictures since Halloween...if you asked me what our days consist of and why I've been so absent I couldn't even tell you. We are just living life I suppose.

Julia went back to school last week and it's been wonderful for all of us. Even though her Pre-K class is a 5 day a week program, she is only attending school on Tuesday, Wednesday and Friday. Monday and Thursdays she has PT and OT in the morning, and on Thursdays she also has speech. I'm hoping by the new year we can reduce the frequency of therapy down to once a week so she can go to school an extra day.

She is also going to start a very exciting program called Fast Forword. This software is promoted as building literacy and improving reading skills but it also increases cognition and processing. I first read about this amazing program in the book The Brain that Changes Itself (a highly recommended read to my fellow seizure parents...all about neuroplasticity) and was determined that when Julia was old enough I'd find a local program to enroll her in. As luck would have it, the only center in Cincinnati that offers it is just a couple of miles from our house. The program starts at age 5 but there is a preschool version for kids age 4 and up that they feel will be appropriate for Julia. I placed our order today and we should have the software in a week or so. It consists of 6-10 weeks of five 30 minute sessions a week. I'm so excited to see how it goes.

Other than that she is doing great. No seizures!

Daniel is doing wonderfully too. He is so close to walking...he will stand by himself for quite awhile, take steps between furniture, walk just holding one of my hands...it's exciting stuff! I'm sure by Christmas he will be walking full-time. And speaking of Christmas...we are thrilled to be spending Christmas in Texas. We didn't think it was going to happen this year, after all of the vacation time Michael had to take for Julia's surgery he has a negative balance this year for the first time ever. But after some creative wrangling we managed to make it work. We are thrilled that we'll get to see most of our family and that they will get to see Julia in person (Julia 2.0 I've been calling her).

Halloween

Yesterday's weather cooperated beautifully...it was chilly (in the low 50's) but dry so we decided to do a bit of trick or treating. All week people had been asking Julia what she was going to be for Halloween, if she was going trick or treating...I don't think she really understood what they were talking about. But once it was time to get costumes on and I brought her Elmo bucket out that she used last year, it all came back to her. She was pumped and it was all I could do to keep her indoors until 6pm hit and we could start our candy quest.

I briefly coaxed her into the spider costume that she had rejected. I thought this would be the better costume since it was chilly and she seemed to like it at first...

She and Daniel each thought the other one looked hysterical.

But in the end, the princess dress won out! Can't say I blame her...she did look darling!

We got off to a good start, she was thrilled to set off down the street and was yelling "trick or treat!" as we went.

The first house we stopped at had barking dogs in the garage which scared her, so we skipped that one. After that we only stopped at two houses before she was ready to go home. She's been a little shy with strangers lately so the whole trick or treat experience was a little overwhelming for her this year. We came home and she helped me pass out candy to the kids who came by our house (when she wasn't raiding our candy bowl). Overall it was a lot of fun!

Michael and Daniel were with us too but he stayed in his stroller while we went up to each house. Poor kiddo...I didn't get any pictures of him out and about!