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!

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!

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.

Good news (I think)

So we got to Detroit around 10am this morning and quickly went back for the CT scan. Dr. Sood said he didn't see anything to him that would indicate hydrocephalus...there were some small pockets of fluid but the normal amount you would expect to see after surgery. Whew! However...we did get admitted. BUMMER. They drew blood and are going to compare the results to Wednesday's tests. He also said that if her symptoms continue without being able to determine why, they may go in through one of her drain incisions to drain some fluid and see if that relives any pressure or symptoms. Let's hope they don't have to go there.

So far so good...she's in a good mood, her fever has been gone for a few hours without the aid of Tylenol or Motrin, and she's eating very well. She did throw up a little while after lunch which made me anxious about them wanting to keep us longer but was immediately asking for food again. Silly girl.

And the silver lining of this whole trip...I got to meet Danielle, her husband and sweet little Trevor. He is an absolute doll...just as cute as in his pictures but those eyes just jump out at you in person. It was great to give her a hug, I hope they get to go home soon! And that we do too!