Thursday, October 29, 2009

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.

Monday, October 26, 2009


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!

Sunday, October 25, 2009

The good news continues

What a week this has 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.

Monday, October 19, 2009

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 came, just a little later than I anticipated. But no'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 will come...I promise. Hugs to you all.

Sunday, October 18, 2009

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.

Friday, October 16, 2009

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!

Thursday, October 15, 2009

Back to Detroit

I don't have much emotional energy right now so this will be short and sweet. We're headed to Detroit bright and early tomorrow morning. Julia started showing signs of hydrocephalus today which is a potential complication after epilepsy surgery. Basically the brain isn't able to recirculate spinal fluid like it normally does and the fluid builds up. She'll get a CT scan there and if necessary will have to have a shunt put in. I don't want to get ahead of myself...hopefully this won't be the case, hopefully these symptoms can be attributed to something else. But if I'm honest with myself...I really am not very confident that she'll be able to avoid another surgery.

Oh, and the fever stayed away for quite awhile yesterday and today, but it's back...unfortunately.

Will update tomorrow as I'm able.

Wednesday, October 14, 2009

We're here!

I've gotten some feedback lately that people are missing the frequency of my posts about Julia...I apologize! I know we have a ton of people following her progress...and as I continue to hear about friends of friends that are rooting for her, my heart just swells with gratitude. It blows me away to think of all the people reading about and cheering for our sweet girl. So thank you!

Today we had a little bit of a scare. The fever has continued, despite my last update about the break we'd had last week. It has still mainly been in that 100-degree range, which is considered low-grade when it comes to this type of thing. Yesterday, however, she spiked a 102 degree temp while our home health nurse was here changing her PICC dressing. This caused a flurry of phone activity as to what to do, when to take her to the hospital, etc. We had never received any guidelines on this so while I was interested to hear what Detroit had to say on the matter, I still hesitated to rush her to the ER, especially with the H1N1 stuff going on and all of the stories I'd been hearing of crowded waiting rooms and long wait times.

So Detroit said they'd get back to me by tomorrow and I put it out of my mind, especially since she'd still continued to be her normal, sweet, hungry self (seriously, the girl can eat!). Then this morning...and a 104 degree fever. I've never seen such a high temp and to say it scared me is putting it mildly. I called Michael, said we need to get her to the ER, and away we went. After about 5 hours in the ER, we came away with the same outcome as all of her other tests...low white blood cell count, low CRP, no infection, normal chest x-ray, normal urine short, no explanation for the fever. Detroit was on the phone the whole time with Cincinnati and in the end Dr. Sood felt the Vancomycin must be to blame. So she's off the Vanc for at least the next 48 hours to see if the fever goes away.

If the fever comes back he said we'll remove the PICC line to see if it's an infection caused by that. But he feels she does not have a true infection because her behavior is fine other than the fever. For now I'm relishing the thought of the next two nights and beyond of uninterrupted sleep. Getting up at 12:30am for her 1am Vanc dose has already gotten quite old and I'm more than happy to not have my sleep interrupted!

In other news, the healing continues. The only deficit we are seeing continues to be that right sided weakness. We have started therapy and she's getting both PT and OT three times a week. Speech has been kept to once a week since she didn't suffer any loss with the surgery. It's a bit of a rough schedule and it wears Julia out, but she's responding well to her therapists and it's doing her a world of good.

Will update tomorrow with hopefully good news...fingers crossed for no more fever!

Wednesday, October 7, 2009

The good news continues

Now that we've been home for several days, life feels like it's starting to get back to normal. If we didn't have to do these IV antibiotics every 6 hours it would feel even more normal but even that is not a huge deal and will only last four more weeks at most.

Julia just amazes us on a daily basis...cognitively and verbally she's where she was before surgery, and we're already seeing her do new things just two weeks out from surgery. For instance, she loves to watch Signing Time videos that teach sign language. Before surgery she'd just watch the videos and although she knew several signs wouldn't sign along with the TV. Now she copies every sign and sings along with the music.

Last night we put her to bed and I left the door cracked open. Before surgery we would lock her door from the outside since her room is right at the top of the stairs and we didn't want her getting out in the middle of the night and potentially hurting herself. Post-surgery, I thought that since she wasn't walking without help I didn't have to worry about anything. That was until she got out of bed, walked downstairs and into the living room BY HERSELF. We were all in a panic at the thought of how she could have hurt herself if she'd fallen down the stairs, etc. But putting aside the panic, I was so proud that she actually did it! She's also asking to use the potty so it seems that our potty training success pre-surgery hasn't been wiped out.

This morning I realized she hadn't felt warm in awhile and took her temp, and it was 98.3. First normal temp in over a week, AND she hadn't had Tylenol or Motrin in 16 hours. Woohoo! One more item to cross off my worry list, because even if it's a tiny little thing in relative terms, I can worry more than anyone!

In other news, Daniel is getting over a nasty stomach bug that seems to have been a 24 hour thing because it's winding down. It was not fun for anyone while it lasted. He also had his 12 month checkup on Monday and is doing great.

Sunday, October 4, 2009

Daniel's 1st birthday

Yesterday was a big day for many reasons, not the least of which was Daniel's birthday! It's amazing to think my little baby is now a one year old. Time is flying by the second time around.

This is Daniel pretty much all the time...smiley, happy, an utter joy to be around.
Julia enjoyed the fesitivities as well...I think she ate about 3 cupcakes yesterday! We just couldn't say no on her first day home.
Daniel enjoyed his birthday cake, and it wasn't the free for all that I expected. He would swipe one finger in the frosting, put it in his mouth...swipe the frosting, finger in the mouth. The picture below was about the extent of the mess, although there was a nice glob of frosting in his hair when it was all said and done.
The big present from us was this little fire truck. He also got presents from other family members and has been having a blast with his new toys.

Here is our girl getting her meds through her PICC line. It's going very smoothly so far, although getting up at 1am was not a lot of fun last night. She slept right through it though! Can you tell by that smile she's happy to be home? The past 24 hours have been pure bliss. Every day she continues to get stronger and stronger. Yesterday she was able to walk with very little help. She is also using her right hand to eat and play with toys. Life is good.

Saturday, October 3, 2009

We're home

Just a quick note to say we made it home a few hours ago. There was no better feeling than walking in the door. Julia is so happy to be here and she and Daniel have already been having fun together. Thank you for all of the prayers and good thoughts during our hospital stay. As well as Julia is doing, the healing process has just begun. Please keep all of those good vibes coming our way.

And last but definitely not least...happy birthday to my sweet boy Daniel.

Friday, October 2, 2009

We're going home!

What a freaking rollercoaster. So after we got the news that Dr. Sood had changed his mind and resigned ourselves to staying for the weekend or even beyond, our luck changed. The PA from neurosurgery came back and said Dr. Sood decided to let us go after all. He would have liked Julia to be free from fever for a day but realized that this could go on for awhile. We could have left today but by the time we got the news it was close to 3pm and we couldn't get home in time to set up a meeting with the home health nurse to get her at-home Vancomycin started. So the discharge order is in the system to be effective at 5am tomorrow. She'll get her 6am dose which takes an hour to administer and then we hit the road. We'll be home in time to meet the nurse at our house at noon and in time for Daniel's birthday! Woohoo!

Julia had another good day and worked really hard during PT and speech. The physical therapist thinks she'll be back in shape in no time. She still can not stand on her own or walk but is gaining more strength by the day. We also went for a walk around the hospital while Julia rode in a wagon. She was wearing the hat that Elaine and Sophie sent her last week (along with a cute purse)...she loves it! And her hair didn't look TOO crazy, which was a nice benefit.

We are so relieved to be leaving tomorrow...let's just hope nothing happens to jinx things. And I get to be home for my baby's first birthday which is just the icing on the cake.

Such a tease

This morning Dr. Sood came in and said we could be released today...we were overjoyed. She still ran a temperature overnight but it wasn't terribly high and I figured they were okay with it since her other tests have been good. We had the home health care nurse set up to come tonight, the papers for discharge were being prepared, prescriptions for outpatient rehab were being sent to Cincinnati Children's, I was back at the International House packing up our stuff, and as I headed back to the room I got the text from Michael...he was keeping her another night. Apparently he hadn't seen the last temp and so decided he wasn't going to release her.

To say we are dejected is an understatement. I was absolutely giddy at the thought of going home, now we are so deflated. We have a question into Dr. Sood right now about what it's going to take for her to go home...because we cannot stay here indefinitely. Especially after hearing of other cases where these fevers lasted for quite awhile post-op. When we get an answer I'll update.

Thursday, October 1, 2009


That's really the only word for this...blergh. We are going to be here for the weekend and maybe even longer than that. There's just no getting around it. She's still running fever and they're not going to let us go until that stops. Her CRP that was tested today went down substantially which is shows that there's less inflamation in the brain which would indicate no infection. We like that. But why the fever? I got on a Yahoo message board for hemispherectomies and read of at least five kids that ran unexplained fever for 1-2 months after surgery...surely we won't be here that long?! The girl from neurosurgery who gave us the CRP results said no, that wouldn't happen, but what is it going to take for us to be released?

Feeling very frustrated right now.

ETA: Just had lots of fun and laughs with our sweet girl. I managed to get a good picture of her smiling. What on Earth are we going to do with that hair? This picture doesn't even do it justice!

Another day...

We're still in a holding pattern, unfortunately. Urine culture was negative, chest x-ray negative. Still no reason for the fever she continues to run. The Dilantin was discontinued so that doesn't seem to be the reason (although she's much more alert, so I'm glad she's off it.) Dr. Sood said they're going to check her CRP (C-reactive protein) and if that's coming down it indicates the antibiotic is the cause. They aren't going to release her until they know more or it goes away though. I thought perhaps they might but I understand why they won't.

However! She is doing great other than that. Eating like a champ and this morning we even got some smiles and giggles out of her. Her strength is slowly coming back, she can sit up very well and keep her head up nicely. PT worked with her today on standing and it wiped her out but she did well.

I also got to speak to Cincinnati Children's and they strongly recommend she do inpatient rehab. She'll get PT, OT and speech twice a day plus therapeutic play time. If we were to do outpatient she'd be lucky to get each of those twice a WEEK. Can't argue with that. I think she'll respond quickly, we've already seen quite a bit of recovery without much therapy so maybe we can get by with a week of inpatient and then switch to outpatient.

Continuing to hope the fever disappears soon...