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!

Our little mermaid

Did anyone seriously think I wouldn't buy Julia her princess costume?

Here's our little Ariel modeling her Halloween costume, this one with the Julia stamp of approval. Halloween is supposed to be rainy and cold so we may just stay home and pass out candy to the older kids. That will probably be just as fun for her anyway.

She's had a great week. She's doing wonderfuly at therapy and has really warmed up to her therapists. In fact tonight in the bathtub she was asking if we were going to see Amber, her occupational therapist, tomorrow. We are dropping therapy down to twice a week and she will be going back to school the other three days, starting next week. She is so excited to get back to school, it's going to be so wonderful for her.

Pictures

As promised from yesterday, here are a few pictures...

First, our smiling girl...

Then, before and after shots of Daniel's new 'do...

And finally, the little man modeling his Tigger Halloween costume. Not the greatest picture but it was the best I could get!

Julia is not impressed with the spider costume I chose for her last year on clearance...she keeps talking about wanting a "princess" costume...I'm in trouble!

The good news continues

What a week this has been...in an entirely good way! Now that the fever is gone and we are full steam ahead on the road to recovery, things just feel so positive and exciting. First and foremost is the thrill of seeing Julia wake up each morning and after each nap without a seizure striking. That will never get old. But even beyond that, she has changed so much in such a short period of time. Much of the change is subtle...Michael and I both agree that she just seems more mature. For instance, she insists on using a fork to eat her meals, whereas before we would have to remind her many times to use it and even then she would rather just use her hands for everything. She also seems to understand so much more of what we are saying. This has dramatically cut down on the temper tantrums that we saw pre-surgery. Don't get me wrong...she still can get mad when you tell her no. But we're not seeing any prolonged, full body kicking and screaming on the ground tantrums like we used to.

Other things...she's interested in other children in an entirely new way. We went out to lunch today and she was trying to catch the attention of kids her age at other tables. Pre-surgery? She wouldn't have noticed them at all. Tonight we went to a Halloween party that my mom's group put on. She got excited when she saw the sandbox and went and played in it. Before surgery she HATED sandboxes. She has stopped putting things in her mouth that shouldn't be there. This had gotten a lot better before surgery but we still had issues...and I haven't seen anything at all since. The list goes on and on. I had hoped for all of these positive changes but to see them in action is so heartwarming...I can't begin to express how proud of her I am.

We still have work to do, undoubtedly. Her speech is still behind and there is a lot of catching up to do. She is still weak on her right side and towards the end of the day doesn't initiate using her right hand much, if at all. But overall she is leaps and bounds ahead of where she was pre-surgery. And that makes it pretty darn easy to keep working at the other stuff.

I have quite a few pictures to upload but Blogger was being difficult today and wouldn't let me. I will try again tomorrow. They include before and after photos of Daniel's first haircut...adorable! We didn't cut a lot off, just cleaned it up a bit, and the effect is so cute that words don't do it justice.

Home again

We're home! CRP was lower...PICC line is out. Julia is doing fantastic now that the fever is gone. There is a brightness in her eyes that we haven't seen since before surgery. She just feels better, you can tell. It finally feels like we're on the road to recovery. Her grid surgery was September 18th, we were released yesterday, October 18th. A month of ups and downs, but a month that is now behind us. I still feel like I need to knock wood when I say this, but I'm excited about what's to come and feel very optimistic and hopeful. This is the feeling I expected to have after surgery...it came, just a little later than I anticipated. But no matter...it's here, and that's what counts.

Still thinking of Danielle, Johnathan and Trevor as they continue to endure their hospital stay. I can't wait until you guys are at this point too...it will come...I promise. Hugs to you all.

The weekend

Sorry for not updating, but it's been difficult to come up with something to write...this stay has not followed any linear path, and many times we have asked each other, "Why are we here?". Now that the end is in sight I'll try and recap the weekend.

Friday's bloodwork was all normal except for her CRP, which was really high compared to Wednesday's level. Again, CRP measures inflammation in the body, but doesn't indicate where that inflammation is. So they again became concerned that there was an infection present somewhere. But where? The PICC line? Her brain? Somewhere else? Saturday night they did another CT scan, this one with contrast to see if the contrast would pick up an abcess or infection somewhere. It was thankfully normal, and her cultures continued to be normal.

They also kept wondering if it was the PICC, but they didn't want to take it out in case she might need it later on. They wanted to flush it with some kind of alcohol-type solution to kill whatever might be in there, but of course, they couldn't get the solution until Monday because nothing happens on the weekend in a hospital. GRR.

They drew another CRP last night and it is now coming down. Dr. Sood came by this morning and said they will draw another one this morning and if that's coming down, we can go home today. That would indicate that there is no infection present, and whatever caused her number to go up in the first place is going or has gone away.

She hasn't run fever since Friday night which has been wonderful and has furthered the case for there not being any infection. She's been in a good mood, considering she's in the hospital, wanting to color, go for rides in the wagon, and is more "her" than at any point since before surgery. I think the fever just sucked her energy and she can now truly focus on recovery.

My theory on all of this, including her behavior Wednesday and Thursday that caused us (okay, me) to panic and come up here on Friday...I think it was viral. She was not well, that much is for sure, but it was not hydrocephalus or anything related to her surgery. It just happened to coincide with a recent brain surgery, at a time when we are hypervigilant and prone to freaking out, just a little. :)

So fingers crossed for a lower CRP today...I think the odds are strongly in our favor. Then it's home sweet home...take two.