Emily's Road to Recovery

High School!

2010-08-26T11:03:00.000-07:00

Em has been in high school now for a few weeks and is pretty happy! She is smiling every day when she gets off the bus, so I think that is a really good sign. Yes, I did say bus! She has been riding the bus every day. We were walking down to the bus stop, but now they are picking her up from the house and dropping her off here too. It is a lot easier. She is using here wheelchair at school , which I am not thrilled about, but for now there is really no way around it. The campus is pretty spread out and since she would have to carry a bookbag, navigate the crowd, etc, we are just waiting a while before she attempts to walk it. I know that she is physically able to walk from class to class, but with the added weight of a backpack and stuff, I think it is best to wait. She is taking an adaptive PE class that she loves. The teacher is really good at motivating her to try new things.

Em is getting faster and faster with her walking. She has pretty much mastered the stairs and can walk without her cane around the house without giving me a heart attack now. We really didn't use the wheelchair at all during the summer. We strapped her manual chair into the van and she just gets in and out now like it is a regular car.

This is a picture of Emily and me over the summer. We went to Bodega Bay and she walked all the way down the beach. On the way back, Em made eye contact with an older woman who was sitting on the beach and who also had a cane. The lady said, "It's hard, isn't it?" Emily got a kick out of that.

The younger girls started school this week and Elise is loving Kindergarten. She loves her teachers and is very excited to meet some new friends. Third grade is OK so far according to Julia... She has two teachers this year, which is kind of different, but she said they are both really nice.

I will try to post more frequently now that they are back in school! Luckily, I now get to post happy news instead of doctor stuff!

Emily Graduates Middle School and Walks the Stage

2010-07-16T11:28:00.000-07:00

I am FINALLY posting a video of Emily walking the stage at graduation. I cry every time I watch it. I am still so proud of her and of the kids she goes to school with for showing her support. It meant so much to her. As she gets ready to enter high school, I keep reminding her of that day and how much everyone is rooting for her. This has been such a rough road for her and seeing her reach her goal of walking is an amazing thing indeed.

http://www.youtube.com/watch?v=hgTY9HUnjwY

This link will take you to my post on YouTube. It is a lot easier to see on there. :) YEA EMILY!!!

2010-01-22T18:25:00.000-08:00

OK. I have started using Caring Bridge again. It is just easier and it sends out a notification when I post. http://www.caringbridge.org/visit/emilyjanae

Back to School

2009-09-07T09:45:00.000-07:00

Hi Everyone,

We have been busy, busy, busy!! The girls started back to school and we have been on the run ever since. Em is doing really well so far. She is really tired after school, but is handling it fairly well. She goes to school for 5 periods right now, which is probably how we will keep it for a while. Reading has been difficult because of her vision, but she got her glasses this weekend, so I hope next week will be better in that area. Overall, she is very excited to be back among her school friends.

Emily is walking with a cane for short distances (we are talking from her wheelchair to the couch - about 5-6 steps). Em and her PT decided to skip the whole walker thing, which I can say makes me pretty happy! :) She also made it up the stairs at both of her grandparent's houses. It wasn't easy, but we were successful! Since Emily has started school, she has been pretty tired after school at her physical therapy sessions. So, we are working on keeping motivated after school. We may have to move the sessions to morning.

Other than that, things are slowly moving forward, which is WAY better than moving backward! We look forward to seeing some of you at the picnic!!

Ann

August Already?!

2009-08-02T14:02:00.000-07:00

I can't believe it is August already. Emily continues doing really well in therapy. She is practicing walking up stairs and continues to practice walking with a walker. I hope that soon she will get a new walker so she can use it around the house. She is a long way from walking up stairs on her own, but we are hoping that soon she can walk up stairs with help, so we can go visit where there are stairs (both sets of grandparents have stairs into their homes). Emily has gotten a lot more confident with this progress. For a while she was saying that she wasn't sure if she wanted to walk because she was so used to having abilites taken away. Now, she is looking forward to walking on her own and doing new things.

Emily has also stopped taking her seizure medication. Although most kids who have hemispherectomies stay on seizure meds for up to a year after surgery, Emily never had major seizure activity, so her neurologist felt comfortable taking her off of them. We have seen a dramatic change in her behavior off of the meds. She is a lot more positive and a lot less volatile. She is still a teenage girl with impulse issues, but this is much, much better.

We go to Oakland tomorrow to meet with the Kaiser neurosurgeon. He is not the doctor who performed Emily's surgery, but Kaiser wants Emily to be seen by one of their surgeons (at least it is a good excuse to see my aunt and uncle! :)). We are still planning to see Dr. Mathern sometime in the fall. We think that Emily has a remaining stitch in her head (since she has an area that won't heal, and I think I see it in there), so we hope they will be able to take care of that tomorrow as well as give us some time lines for Em's activity level (i.e. When Emily will be able to ride Thunder again). Em is still grooming Thunder every Friday. She really looks forward to doing this every week. We are waiting to hear if Ride to Walk will suffer from the budget cuts. It seems likely that they will, although we have not received official word yet. I don't know how we will break the news to Emily should this happen. Luckily the people at Ride to Walk are dedicated and caring and I am confident that they will work with us so that Emily can continue to go there.

We haven't been very active this summer with Emily's therapy schedule, so the girls are getting a little antsy. I think everyone around here is anxious for school to start. With the surgery and everything, I missed the deadline for signing Elise up for Preschool. They are full and we are very far down on the waiting list. So...I decided that I am going to teach her at home this year. Since I have taught Preschool before, I have all the materials to do it at home. I think it will be a lot of fun for both of us. I have a lot of fun ideas. She is going to take another gymnastics class as well. It will definitely be an adventure. Elise is such a nut it is bound to be fun. Julia is doing well also and is excited about becoming a 2nd grader! She is a constant source of entertainment for me and Aaron. With all of this and trying to refocus on my website, I have been pretty busy.

As usual, we send all of our love your way...

And she's off...

2009-07-13T14:46:00.000-07:00

O.K., I know I haven't been posting, but I think you will agree that this is worth the wait...

This is Emily last Friday at therapy. After I took this video, she moved off of the parallel bars and walked with the walker on the floor. I was very excited and so was Emily. I think she is finally seeing that she will walk in the future. I don't have much else to report. The summer is screaming by. It is a little rough with everyone at home right now, but a good thing too.

I am going to take video again when she gets a little better at this walking thing. Only a couple weeks ago, she had to wear this harness that suspended her in the air. We called it her "bungee suit." Now she is going without it! So who knows what will happen in the next few weeks.

We are still working on getting her muscles stretched so that her left leg reaches the ground better. Stretching is Emily's favorite thing to do (not really!!!).

Anyway, I will post again soon, I promise!

Ann

Home and Working Hard

2009-06-22T16:47:00.000-07:00

I know I'm a dog for not updating in so long. We got home OK and everyone (except Emily, thank goodness) got sick. We are on the mend now, but whatever it was took it out of me.

Here are some pictures from Emily's discharge party at the hospital:

Emily and Stephanie - one of our favorite nurses.

Emily and Dr. Mai and Dr. Tran

Emily and Maryanne - her teacher

Emily and all her therapists "striking a pose"

Emily and her PT (Theresa) her OT (Nina) and Tina

Emily and the group singing "All You Need is Love" with a few word modifications Emily made to the song...

Emily and her Speech therapist (Stephanie) and her Art therapist (Janis)

We did have a chance to visit Em's school before it ended. She was so excited to see some of her friends and teachers. She wishes that school was still in session!

Emily has been hard at work in therapy, although it is strange not going everyday. Recently, she has started moving her left arm more, and can now move it up onto the armrest of her wheelchair by herself. She also seems to be moving her left leg more. I really like her new PT so far, and she is working well with Emily. On her last session, Emily started using the treadmill! It has a harness on it that keeps Emily from putting all her weight on her legs. This way, she can "walk" without all the pressure on her legs. She walked almost 100 feet! We are all very excited. I think that once Emily is able to see walking as a possibility, she will become more motivated, so this kind of progress is very important.

We also went to Ride to Walk on Friday to see Thunder. Em hasn't been able to think about anything else since we got home, so she was elated. Now that we are all healthy again, we plan to go weekly again. I hope that soon she will be able to ride again.

We are in the process of having Emily's eyes checked. We went to see an opthamologist last week. He thought he saw some abnormality in her right eye, but wanted to check with some of the other doctors about it. She will have a visual field test sometime in early July to see how much of her peripheral vision she has lost. She is not seeing like she used to see, but we are not sure how much vision she has lost. I can really see it when she watches movies or plays her Gameboy. She has to have it very close up. She also does not read as well, and I am sure it is because she is having trouble seeing. I don't know that glasses will help, but I hope that this is something that will improve with time. It already has since surgery...

Other than that, we are doing well. We are just adjusting to being back together and doing things a little differently. All of this will take time. Thanks to our friends and family, we have been getting a lot of support (in the way of encouragement, dinners, and gifts), which has helped tremendously. I know I sound like a broken record, but we feel very fortunate to have all of you in our lives.

I will try to be better about posting and I will get some new pictures up soon.

Visits + We are Going Home!!

2009-06-01T14:14:00.001-07:00

We have been VERY busy. Last week we had the best surprise ever when my cousin from Minnesota came to visit with my Aunt Kate. Em was very excited to see her. Em told her about EVERYTHING.

Then we got a day pass. We decided to go to my aunt JoAnn and Uncle Joe's house in Concord, which is close to the hospital. My cousins, Jennell and Sarah, were there, as well as my grandma. It was the perfect visit. We were able to see how well Emily could navigate outside of the hospital. Aunt JoAnn made an excellent lunch and grandma made some potato salad and apple cobbler. Yum! I think that was Emily's favorite part. :) (see pictures below...heaven).

This weekend, we were able to visit home. The hospital likes to send kids home for the weekend to see how they do around the house before they actually come home permanently. So Emily was able to do all of the things she has been practicing at the hospital. Emily was very anxious to see our dog, Daisy. They had a very happy reunion, although I failed to get a picture. I did get some pictures of Emily and Julia coloring together and everyone watching a movie on the couch. I was so nice to have everyone together at home.

When we got back to the hospital, they felt Emily did very well, and we all decided that she will be able to come home on Thursday. We actually knew about it before, but we didn't want to say anything to Em before we confirmed it with everyone. She is very excited.

They are doing ultrasound treatments on Emily's hip this week. The pain is almost gone from her hip, but has moved to the outside of her hip and leg. The doctors feel that these ultrasound treatments will help with that pain.

We have made some appointments for therapy when we get home. We had a great visit from Suzannne, who is Emily's PT from Ride to Walk. She came to observe Emily's therapy session and will check in with us once Emily's therapy starts at home. We are so lucky to have people like Suzanne in Emily's life.

An end in sight

2009-05-23T09:44:00.001-07:00

Hi Everyone,

Just a quick update. I know that I haven't been updating as often, but we are getting to the end of our stay here and are quite busy. We had a family meeting on Thursday. We discussed Emily's progress and everyone seemed very happy with how far she has come. We scheduled a day pass for tomorrow. My aunt and uncle live close, so we are going to go visit them and my grandma, who is there for a visit. If she does well tomorrow, we will have an overnight pass next weekend. We will see what issues come up and if all goes well, she will be discharged the following Thursday. Of course, I haven't given Emily any specifics, just in case things don't work out.

Emily is working on rolling and getting up in bed on her own this week. We are transferring her very well into her wheelchair and into bed. We continue to work on her endurance and getting her hip stronger. The PT showed me some great stretches for her hip, leg, and foot. She is really tight in those areas because she has been in a sitting position for so long, and from the spasms, etc... Her range of motion is also getting better in her arm.

We had a great visit from my aunt Kate yesterday, and she surprised us by bringing my cousin Maryanne from Minnesota. We had a great visit. Emily talked their ears off. They still look great, even without their ears! :0) I need to get a few pictures from my aunt. I was so surprised that I couldn't remember where m camera was!

Anyway, I will take pictures tomorrow and let everyone know how it goes. Em has been reading all of her messages and loving them. I know I haven't been very good at sending out thank yous to everyone for all the wonderful gifts, messages and visits, but I (and Emily) appreciate each and every thing you have done. We love you.

A note from Emily

2009-05-16T10:43:00.000-07:00

Hello Everybody,

This is Emily. I can't wait to come home. I get to have a break from the hospital tomorrow. We get to go out to lunch with my sisters and grandparents. I stood up for 75 seconds today and I played basketball (actually it is more like bean bag ball). I got to throw them all at my therapist's head. I won. Yea me! I have been doing lots of artwork. I can't wait to get back to school. Thank you everybody for sending me messages. Thank you everybody for still thinking about me. That's all folks!!

Love,

Emily

P.S. I love all of you.

___________________________________________________________________

Some pictures my mom took of Emily when they had animals in the "teen room".

Happy Mother's Day

2009-05-10T11:12:00.001-07:00

First of all, I want to say Happy Mother's Day to everyone, and especially to my mom, whom I could not survive without. She is with Emily today, so the best I can do is to say it over the phone and Internet! Also to my wonderful mother-in-law who has helped take care of my two very special monkeys over the last months. I am very lucky to have these very special women in my life.

Aaron has gone down for a visit today. I know that will cheer Emily up. He has a hard time getting down there during the week, but Sunday is a good day since she doesn't have therapy today.

Emily is doing very well. She is transferring now without a sliding board. We are working with a manual wheelchair right now because transfers are easier, but this is a big step for Emily. We are even doing transfers without her hip brace occasionally. She is still having significant pain in her hip though, so this makes things very difficult at times for our girl. In therapy, they are focusing on doing practical tasks, like showering, etc., so that she will be able to easily do these things at home without significant pain or falls (of course!). In the meantime, she is also working on standing for longer lengths of time. She is also significantly stronger in her trunk, so she has been sitting up a lot longer. She sat up on the edge of the bed for about 20 minutes while she talked on the phone. I am hoping that they will eventually get around to using her walker a little bit, but we will see what happens. The doctors are saying that she will likely be in the hospital from 2-4 more weeks.

While I am home over the next few days, I am going to work on setting up therapy for when Emily comes home. I am very anxious about this because Kaiser does not have very many pediatric therapists. I may have to pursue other options. It is crucial that Emily continues a rigorous therapy regiment so that she can work toward her goal of walking and get that hip to heal. They say it could take many months to heal completely.

We have been using the computer at the hospital now, so Emily has been reading her messages and was even able to respond to an e-mail. I hope to get her to post her own message next week. She is going to school at the hospital, so we do not have a lot of free time. The free time we do have is after all her therapies, and she is usually pretty exhausted! Please keep the messages coming if you have time. Just a simple hello makes Emily's day. It is very hard to keep up her morale when she is stuck in the hospital. She is very home sick.

On the home front, Julia got her ears pierced yesterday. She has been asking to do it, so I told her I'd take her. It took about 3 tries to build up the courage to actually do it, but she really wanted to. It took us the better part of the day just walking around the mall buiding up her courage. It didn't help that they were very busy and had a couple of girls who cried a lot. She looks so big. I will get a picture of her up this week.

Therapy, Visits & Moving Forward

2009-04-30T20:28:00.000-07:00

We had a very busy week! When I got to the hospital this week, I have to admit that I was not happy. Emily was is a lot of pain and I felt really hopeless. By the end of that first day though, things started to look up. She came in from her therapy session with her hip brace on. Things just went up from there. Although it has taken some getting used to, mostly for logistical reasons, she is doing much better. We also got moved to a new room on Tuesday. Emily and I got the best two nights of sleep we have had since we've been at Oakland. Because of both of these things, Emily's personality has come out more, she is smiling, and making great strides in her therapy. We have been working on our transfers, which are getting easier each time. Once we help her sit up in bed, Em can do most of the work by herself. She is also standing more and more. Aaron and I were able to go to the end of one of her therapy sessions and she was having a dance party with her therapists. I wish I could of gotten a video of this. The old Emily definitely made an appearance. We have also started patching Emily's left eye. We only do it for about 45 min to an hour each day. She doesn't like it, but I think it is helping.

With everything going on, I didn't get onto my computer, but I will when I go back.

Aaron came on Wednesday without the girls so he could have some time with Em without distractions. My friend Heather came the same day. We all had such a nice time.

I am really tired, so I will post more next week sometime, unless something really exciting happens over the weekend. Enjoy some pictures from this week...

2009-04-25T08:54:00.000-07:00

Hi Everyone,

Just a quick update before I get ready to go back. I am taking my computer with me this time since we are going to move rooms on Tuesday! I am so excited!! I think it will be a big step for Emily to have more room. She will definitely be able to stay out of bed more. There really is no room for her wheelchair where we have been.

She had a good day in therapy yesterday. It was Fun Friday, so they had a scavenger hunt. She was pretty tired at the end of the day though. Emily is going to start "school" next week, so she will be a busy girl. I will have a lot of reading time though! ;0)

They are trying to figure out how to best manage Emily's pain. Apparently, when you are in a lot of pain like Emily is, you start getting where you have pain even with the lightest touch. We have to get Emily through it and minimize the pain she is having so that she can work harder. I think that once she gets the brace, a lot of this will not be an issue. My mom keeps asking the doctors if the brace is coming over on the Mayflower. Emily responded by saying, "The Mayflower was destroyed Grandma..." She is such a literalist these days! LOL

On a very good note, Emily continues to move that left leg, so it was not a one time occurrence. They are working hard on transfers. I am going to learn how to transfer her using the slide board this week. Emily hates the lift, so this will be good. Again, something that will be much easier when we are moved to the new room. I am also going to get some therapy pictures posted this week. I will have to be stealth-like so Emily doesn't see me much while she is in therapy.

I visited Emily's school this week to get everything for her to start school at the hospital. Emily was very excited to hear that I saw everyone. She sends hugs. She just wishes that she could see all of you herself.

I'll post again this week when I figure out how to do it at the hospital.

Ann

Pictures / visits & progress

2009-04-22T12:00:00.001-07:00

Em has been doing well over the last week. We had a nice weekends with several nice visits. First, Aaron brought the girls down on Saturday. We went outside and got some fresh air. Emily was happy to hear her sisters play on the playground and get some sun. On Sunday, Emily had two sets of visitors. First, my good friend Heather, her mom Linda, and her husband Colin came to visit. They brought us a tasty lunch and we had a picnic outside. Linda brought Emily the cutest Lamb all the way from New Zealand. She has been telling everyone about it. Later on in the afternoon, we got a visit from Doc, one of Emily's therapists from Ride to Walk, and his wife. They brought her a little horse that bears a resemblance to a little horse she knows. She was so happy to see them.

In therapy, Emily is making strides. She started by moving her left leg and "helping" her therapist move her leg. Yesterday, she moved her left arm toward herself several times and was able to move her left leg back onto the footrest on her wheelchair after it fell off. We are very excited about these developments. Today, she was able to stand on the tilt table for 15 minutes. These are all great things. We took her walker to the hospital yesterday, so we are hoping that she will be able to use it to stand soon.

Emily's eye is opening slowly and is a little less than half open. She is still seeing double since it is not tracking correctly. Probably next week, we will start to patch her left eye so that her right eye has a chance to get stronger. After a while they will switch the patch to her right eye and then hopefully her eyes will see properly.

We are hoping to move our room on the 28th. This will be a big step to get Emily moving more. She has been practicing moving from her wheelchair to the bed or mat using a slide board instead of the lift. She doesn't like using the lift, so this will make her happier. We are still waiting on the hip brace, but I hope we will get that soon.

I posted some pictures, but I am hoping to get some pictures from therapy so you can see how she is doing. It is hard because I don't go to therapy with Emily. I am going to see if I can get her therapists to snap a few shots on my next stay.

Emily says thank you for all the posts and cards. She gets so excited when she gets one. She is very homesick still. She misses everyone so much.

Doc and Emily goofing around.

OK a serious one.

Emily with her sisters

Emily taking five outside

Me and Em - LOVE that smirk

"I love these things!"

Making progress

2009-04-15T20:16:00.000-07:00

I just wanted to make one more post before I leave. Emily has been standing up this week! She started out on what they call a "standing board." This board can be tilted while she stands so that all her weight is not placed in her legs alone. On Monday she stood on the standing board for 10 minutes. She also sat on the edge of the mat for 45 minutes (she said, "and I only fell three times!). On Tuesday she was able to stand up without the standing board and stood for 30 seconds on her third try. Today, she was able to stand for even longer.

We are working a bit on Emily's morale. She has been a little depressed. I am going to work with the people there to see if we can get someone for her to talk to about everything. I am also going to work on some sort of chart so that she can see her progress. I think it is hard for her to see how far she has come already. She also gets her brace on Friday and I think that will help. She sounded a lot better today. She is just really home sick.

Aaron is going to bring the girls down on Saturday. I think it will make her feel a lot better to see her sisters and her daddy. She can go outside more now, so I think it will be a fun day.

Easter Week 2009

2009-04-13T09:17:00.000-07:00

I am back home for the next couple of days. We have had a busy week. It is slow going for Emily, but with every day, she seems to improve.

I guess I should start with the meeting we had last week. We (Aaron over the phone and I) met with Emily's rehab doctor, the medical doctor, and her therapists (OT/PT and speech). We discussed the plan for Emily so far. It is hard because Emily is just getting started. The doctor explained that there are two paths that Emily may go down. Since she is having such bad hip pain, the first path is one where we will be able get her to transfer properly from her chair to the bathroom and from the bed to her chair with minimal assistance before she leaves Oakland. So basically getting her to a place where she is much like before surgery without the pain. That scenario means that she would be there for four more weeks. The second path is one where Emily will do really well in the next couple of weeks, and then we can focus on getting her taking steps and moving more. If we get to that point, Emily would have to stay longer. Although I want Emily home, I definitely want the second path. The more we can accomplish at rehab the better. A lot depends on Emily's hip.

Having said all of that, Emily was able to stand up in the therapy session following that meeting and to bear weight on both of her legs. This is a very good sign that Emily will be able to progress and do well while she is there. My hope is that they will get her to transfer successfully this week. I truly hope that the therapists are on the same page as I am with this.

In addition, Emily has been able to move her left leg and arm periodically. If she consciously thinks about it, Emily cannot move her leg arm or hand, but sometimes when we are doing something, it just happens. For example, the night before last, I was putting on Emily's arm brace and she just straightened out her fingers. I got so exited and asked her to do it again. When I ASKED her to do it, she couldn't do it. The same has happened with both her arm and leg. It definitely gives me hope that she will be able to move them willingly over time.

Thursday night Emily played Bingo. They have it set up so that kids who cannot easily get out of bed can still play. They broadcast it over closed circuit TV and then the kids call in if they win. They play the same game with two cards over a half an hour, so basically all the kids eventually win. At the end of each round, they show the prizes and I walked down to the room and picked out something for Emily. She played two rounds and got tired and skipped the last round. Hopefully next week we will play all three. It was a little hard for her to play because she couldn't see the cards very well, but I helped her and she called out the numbers over the phone as I read them off to her. She had a great time.

Friday was a big day for Emily. They fitted her for her hip brace in her morning therapy session. They had to cast her around her midsection in order to get the right fit for the brace. Hopefully we will get her brace this week sometime. The girls also came down with Grandma and Grandpa Stoermer. We visited a little in between Emily's therapy sessions. She was excited to see everyone. Finally, she colored Easter eggs and made cookies with her therapy group. They have "fun Friday" where all the kids meet up and do an activity. I like this because Emily is able to see that there are other kids who are having similar experiences. She also got a cute bunny from someone who was going around giving them to the kids in the hospital.

On Saturday, Emily had a shower in the shower room. They put her in this PVC gurney and shower her down. We washed her hair for the first time since surgery. She felt SO good afterward. I put on some blush and lipstick and she struck a pose for the camera.

Yesterday, Emily and I had a visit from my aunt Kate and my cousin Lynn. Emily talked their ears off and had a great time. My cousin Maryanne sent this silly duck that plays "You are my Sunshine" and we all got a huge laugh at how loud it was. Just a little something to share with the dozen or so family members who were visiting next door! ;0) After that, my parents came and we got Emily in her wheelchair and took her outside. She hadn't been outside since before her surgery, so the sun felt really good. She didn't last too long before she was ready to go back in. I headed home while mom hung out with Emily. I came home to see the monkeys. Aaron had them wait to do their Easter egg hunt, so I was able to see them do that. He also made me the best dinner ever! I was quite ready to have a meal without a dash of hospital flavor!

While I was gone last time had a nice visit with my Aunt JoAnn, Uncle Joe, and my cousin Sarah. She was glad to see everyone. They have come a couple times to visit. We are so lucky that they live pretty close to Oakland. We also had a visit from my friend Heather on Wednesday. While she was there, we were almost moved to a new room, but they realized that Emily would be sharing a room with a 13 year old boy. Not so good. So, it looks like we are next on the list to move to a window. Hopefully this will happen soon. It will make it much easier for Emily to get out of bed on her own I think. It also looks like Emily's fevers are under control. She did runs a low grade fever every once in a while, but nothing like last week. Her rash has also gone away. Right after it subsided, her skin started peeling like she had a sunburn. Very strange.

I think that is everything. I am finding it is a lot harder to report about the week rather than day to day. Emily sends her love to everyone and is missing all of you terribly. So, XOXO from Emily!

No more staples!

2009-04-06T16:07:00.000-07:00

Just a quick note. Emily got her staples out today (all 67 of them!). She did really well, and she says that her head feels much better now. I remember getting my staples out after my c-section and it being such a relief (and I only had 17). I am sure she is feeling that way right now.

In PT, they got her standing today. She said that it crushed her leg, but I know that it will get easier each time. I am very excited.

She also got a visit from the Easter bunny today. Even though Emily is 13, she still gets a big kick out of that stuff. One of the great things about Emily is that she is not too cool to act like a little girl. She got a coloring book and started coloring today. I am so glad. I haven't been able to get her to sit up and do much since surgery. I am looking forward to coloring with her when I get there tomorrow. My mom said that she thought her eye opened a little more today. I can't wait to see that either.

I am going back to see her tomorrow and will likely stay until next Monday because of Easter. I want to be with her. So that means I probably won't post until then. I have had a couple people ask if they can visit Em. Since I won't have my e-mail, the best thing to do is call my cell (916) 765-4998. If I don't answer it is because we are in the middle of something, but I promise I will eventually call you back.

Anyway, I promise to take some new pictures this week and post them when I get back. I just didn't want to take pictures that first week since she felt so crummy.

Also, her fever is down so far today.

Sorry it's been so long since I've posted...

2009-04-04T17:43:00.000-07:00

I have to apologize. I know it has been WAY too long since I posted. Oakland doesn't have a wireless connection that I am aware of, and we have very little space in our room, so I decided to send the computer home and post on my days at home. My mom and I are taking three day shifts. I spent the first 3 1/2 days there and my mom will spend the next three. I will return on Tuesday.

So the flight went fine. Em didn't like it, but it was much, much better than driving all that way. I was chaos when we got there and took us a couple days to get really settled. There were a lot of people coming by and asking all sorts of questions and assessing Emily, so there was not a lot of down time initially. I was quite taken back by the hospital room. When we went on the tour, they mentioned that we would share rooms, but these give new meaning to "tight quarters." The patient by the window has it pretty good, but all new patients are placed by the door, so we have very little space (or privacy) right now. Hopefully we will move to a window spot soon.

Emily has been having fevers on and off since we got there. Nobody is sure why. Of course the moment I leave, things have to fall apart, and my mom called a while ago to say that she has a 103 fever today. She has been around 100-101 the last few days. She continues to have a rash, but it is slowly looking better. All the blood tests have come back pretty normal so far, so I don't know what is happening there.

Her eye continues to stay the same. They did not see anything significant on the MRI, so it is Dr. Mathern's thought that it may be a third nerve palsy that will improve over time. Please pray that this is the case. She has very little vision right now.

We are also trying to figure out how to improve the pain with Emily's left hip. They are planning on making a brace for her on Tuesday that will hold her legs open. This position will keep her hip bone in socket until she can get stronger.

On a good note, Emily has been getting in her wheelchair the last two days and driving down the hall. Despite her vision issues, she has done very well. She needs someone to guide her, but hasn't run over anyone yet! We even went down to the cafeteria today and had a snack together. Of course, when we got back she was completely exhausted, but baby steps, right? I think this has cheered Em up a bit (that and seeing her sisters on Thursday). She has seemed pretty down the last couple of days. Nothing like lots of pain and a fever to get you down...

Her staples should come out sometime this week. She would have had them out sooner, but she has been impulsively picking at them, so they have had to stay in a little longer. So far, Emily has been quite a bit less inhibited than before, so she lets you know exactly how she feels and what she thinks. In addition, she is quite impulsive in her behavior. We will see how she is in a couple of weeks.

That's all for now. I will still keep you posted, just not as regularly as when we were at UCLA.

The excitement never ends

2009-03-31T16:36:00.001-07:00

Well, after a rough night last night, we are pretty much back on track I think. Em had a fever on and off all night. She also developed a rash on her stomach. They decided to take blood and urine (they had to get it the hard way...) so Em had a tough time. She didn't have her no-no on (the thing on her arm that keeps her from touching her head) so she managed to get some staples out of her incision. Of course they are right where the two incisions meet, which is the worst possible place to take them out! We will get the results from those tests in a few days. Obviously we probably won't be here at that point, but Oakland has neurosurgeons and other doctors there that can address any issues we might have. We will have an MRI later today or tonight to look at the optic nerves and to see if there are any other issues that might be causing Emily's right eye to stay closed. They also found today that Emily can look left to right with that eye when they hold her eyelid open, but not up and down. That could be because she has some swelling around the optic nerve(s). She was also much more swollen around her eye this morning and on her head. I don't know if this is because she picked or what. The doctors didn't seem too concerned and said the MRI will detect any problems. Yeah, apparently the staples they use are not magnetic. All I know is that they say metal in the MRI machine is BAD. So I panicked. What can I say?

So the plan is that Emily and I will fly out by helicopter (or plane I am not sure) tomorrow morning some time. They called and asked how much we weigh, which at this point, I could bring down the helicopter with my low estimate of my weight. I have been eating out since I have been here plus I have chair butt.

Anyway, I guess whether we leave really depends on the MRI that is done sometime tonight. I will keep you posted.

Until next time...

Annie

P.S. Em got out of bed today and it was a little easier than yesterday. That is all we can ask for!

What a Day!!

2009-03-30T17:11:00.000-07:00

There is a lot going on today. We decided to get Emily up and out of bed, so that was our main goal getting up today. PT/OT came by and we did just that. Starting off, Emily was NOT happy. Everything hurts and she wants to move, but she doesn't ACTUALLY want to move (I know, I know). Dad asks Emily periodically if she is a fighter, and Em replies, "GRRRRR". Sometimes more enthusiastically than other times. Today, she was saying..."no!" However, we did manage to get her up and on "the special chair" (that is all I will reveal about that). Wasn't too productive, but we managed to get her there and back with the help of two extraordinary therapists (I don't know how they do it). Em was wiped out until well after lunch.

Later on the neurology team came by with Dr. Mathern and were looking at Emily's eye. They are not sure why it is not opening. It doesn't make sense since her eyebrow can move. So, the team decided to do an MRI to see if there is some swelling in the ocular area. Just a little while ago, they called to get her, but I mentioned that she has 50-70 staples in her head and they are checking to see if we can do it (you'd think the neurology team might consider that...but what do I know).

I also got a call from the discharge planner who has been speaking to Kaiser Los Angeles. They are planning to airlift Emily to Oakland Children's hospital on Wednesday. We knew that Emily was not going to be able to go in our car after the OT/PT session today, but we were really taken by surprise with this new development. I do think it is the most logical thing, but it just didn't occur to me that they might do this and cover the cost...

So, we should know more details tomorrow. We will see if this MRI will happen. It seems that it would hurt a bit being that an MRI machine is essentially a big magnet. They will probably plan on doing it sometime in the middle of the night. It's my mom's night here. Sorry mom, love you.

Emily got some nice cards and a lovely gift today. They came at the perfect time. She needed a little pick me up!!

I have been reading the entries to Emily this week (now that she can hear me) and they have been making her feel really good. She still sleeps most of the time, but she is talking a lot when she is awake. We continue to appreciate all the well wishes and prayers.

Love,

Annie

Sitting up

2009-03-29T17:54:00.001-07:00

Emily is doing well. She has been battling soreness the last couple of days. You touch her and she says, "Ow!" She got a bath this morning and that pretty much wiped her out, so we let her rest for the afternoon. A short while ago, we had her sit up and it went really smoothly. It hardly hurt her at all. She stayed sitting up for at least five minutes.

Her right eye still won't open. I can't get a straight answer out of the neurology team as to why this is happening. I guess it is just one of those things you have to be patient about. She can open it slightly when she lifts her eyebrows. She is constantly trying to open it, which makes it hard to read her expression with her eyebrows moving up and down. It cracks me up!

The two neuro teams came through this morning. The surgical team came through and started ripping off her bandages (on her head and stomach). Needless to say, Emily DID NOT like this. Her nurse is wonderful and got her to stop crying though. Anyway, the team said "so, we think Emily should be able to get out of here tomorrow..." and I said, "WHAT!?" Dr. Mathern said NEXT Monday. The other team said about the same, so we will see what Dr. M has to say when we see him. I am more than ready to get out of here, but I want to make sure Emily is completely stable and ready to move before we leave. I just am not convinced we are there yet. I am not sure how they determine that a patient is ready to go...

We are pretty sure that Emily's hip is the main thing holding her back from getting up more. It hurts a lot still and she is very hesitant to move at all. The second surgery also put us back a few days in her progress as well. I am pretty sure over the next few days, we will get her up and out of bed and I will feel better about moving her to Oakland. I would prefer to do it in our own car rather than using an ambulance. We will see.

Another hemi mom brought over a curious George monkey dressed as a doctor for Emily. It is so cute. She said that they are Dr. Mathern monkeys and that all the hemi kids here need one.

She just better keep it away from Elise...she LOVES curious George!!

Look at her go!!

Goodbye ICU

2009-03-28T14:05:00.001-07:00

Emily moved to the regular pediatric floor today. We are still on the 5th floor room #5327. She is pretty sore and crabby today. They had to shave more of her hair in the back for the shunt and make an incision in her stomach to guide the tube there. It didn't occur to me to prep Emily for that one, so she is pretty upset about her stomach being sore. We are going to get her moving a little more this afternoon. Looks like we will be here until next Monday or Tuesday. We will know by then whether Emily will be ready to transfer by car or if she will need to be transferred by ambulance. As long as mom and I can move her safely, we will just take the car.

We had another visit today from a mother and father whose son had surgery about 7 months ago. He is doing well and it is very inspiring to us. They were great people and it is nice to meet these families. Of course I haven't had a shower, am sleep deprived, and haven't looked in a mirror today, so I hope I didn't freak them out.

Emily had a visit from another dog yesterday. This one was a little white one. I will try to post a picture with this. Her name was Saasha and kept kissing Emily on her hand. Emily was loving it.

Emily and Saasha

Em's new haircut

ICU Day 8 Surgery Day again

2009-03-27T09:02:00.000-07:00

***Update***

Emily is in recovery and everything went well. We haven't been called up to see her yet. Dr. Mathern just came down to talk to us. If everything goes as planned (and if the room is ready) we should be able to move out of the ICU by tomorrow. YEA!!! Hopefully they will be able to take all the IVs out of her neck and we can move her around a bit more.

So, Em is having shunt surgery today. They had to open the clamp 8 times last night. They will place a permanent tube in Emily's head that will go down through her neck and drain into her stomach. Then her body will just absorb the fluid and keep it from building up in her head. Emily is pretty scared to have another procedure done, but I am confident that she will feel much better with the drain tube out. She is more scared of going to sleep than the actual procedure. They had to use the mask last time and it was scary. This time they will give her some medicine that will make her feel goofy first.

The orthopaedic surgeon came by and said that they want to wait on Emily's hip and see what it will do over the coming months. It could be that her muscles will strengthen and it will stay in the socket on its own. He said it could also get worse as her muscles get stronger. We will just have to play the waiting game and have another x-ray in a few months.

I think she needs to get up and move around. She is just hurting all over. She seems to feel better after physical therapy. She is pooped, but everything feels better.

Well, the surgery is scheduled for 10:00,but we know that it will probably be around 3:00 (you know how those things go). One doctor said it will take 2-3 hours, while another said no more than 1. So, who knows. That is kind of how things go around here...

We've been doing a bit of cheer leading over the last couple of days. She is pretty tired of being here. I can't say that I blame her. We are focusing on what she will likely accomplish in the coming months and hoping that she can see that far ahead of her (although it is difficult to project like that when you are in pain).

I have been able to meet a couple of families while I have been here, and it has been such a blessing. We met a couple whose daughter had surgery yesterday. We haven't heard how things went yet, but we are hoping for the best for them. We are also keeping in touch with another family whose baby had surgery a couple of days ago. She is doing well and is such a little angel.

That is all for now. I will let you know how things go today.

Annie

ICU Day7

2009-03-26T09:34:00.000-07:00

Hi Everyone,

Em is pretty alert and talkative this morning. She has been having hip pain, so the doctor came to look at it and ordered some x-rays yesterday. We will meet with the orthopaedic surgical team today to see if they are going to do anything about it. We are hoping that they will brace it so that we can work on the muscles to strengthen that area. We won't know for sure until we meet with them later today.

After OT yesterday, they came around with a dog and Emily got to pet him. He was more like a bear than a dog, and we decided he must be related to Emily's stuffed animal, Dream Bear (who is half dog and half bear). You know that Emily really loves animals, so this really made her day. She was a little down yesterday, having to deal with the difficult and sometimes embarrassing aspects of hospital life, so this sort of thing is so good for her. I also posted a picture of Emily's smile. We are seeing more and more of these.

One of the neurology residents came by today and checked Emily out. Her left eye is opening now. He said that sometimes after a surgery or brain trauma on the right hemisphere, you can "forget" how to do things that you could do before (like opening your eyes). So she is getting over that. The swelling is pretty much gone on the right eye, but she may be having to "learn" to open that eye as well.

So, we just wait now and hope that she tolerates the clamping tonight. I will post and let you know how things go.

Love to all of you,

Annie

ICU day 6

2009-03-25T10:21:00.000-07:00

This morning Emily is really tired. I guess the nurse gave her a dose of morphine overnight, which I am not too happy about, but it is fine I guess. She just seemed more out of it this morning. They tried to clamp the drain tube last night to see if the pressure would stay down. It didn't. So, the plan is to let the drain stay open until tomorrow night and they will try again. If the pressure does not stay down, she will have shunt surgery on Friday morning. If she has to have it done though, I am glad that they will do it here.

She did really well with OT this morning. She sat up and was a little less wobbly than yesterday. This is the hardest thing for all of us to watch. Especially with all the tubes coming out and her swaying back and forth. Today I tolerated it while Papa and Grandma took a walk. Her arm has been in the brace since yesterday and continues to look good.

Aaron got a webcam and we tried it out last night. It was great to see the monkeys. Em was asleep, but we are going to try it again tonight when Aaron gets home from work. I know that Julia in particular is worried about her big sis. I think they will feel better when they get to see that she is OK.

We met another family here whose baby had surgery yesterday. Her family was very nice and they are in the ICU across the hall from us. I am anxious to see how she did yesterday. We are also hopefully meeting more parents tomorrow. There is another little girl who is having surgery tomorrow (I know, they are having a lot lately). We met them when we did the interview. A very nice couple as well. It is nice to meet other families here, but sad that so many are going through this right now.

Em has received so many nice gifts since we have been here and before we left. She got such a nice package from the hemispherectomy foundation yesterday. In it was a singing puppet dog that sings when you make it talk. Em got such a kick out of it and did it for Dr. Mathern while he was here. I just can't thank everyone enough. There is no way to express how much we appreciate all of you who care about our Emily. I got a smile picture yesterday. I will post it a little later. :0)

Annie

ICU Day 5 - Not for the Squeamish

2009-03-24T11:47:00.000-07:00

Hi Everyone,

So far, today is a day of ups and downs. Em slept through the night really well. She woke up really early and was not happy, so we had to get through that. Last night, the neurosurgery team came by and redressed her head. They decided to hold off on the sutures even though her head continues to bleed. By morning, the new dressing popped right off. After trying really hard to get Emily to hold still, they came by again and decided to just leave it off. She still has her drain in, so we just have to be really careful. They said that her incision looks really good. I got some pictures, but don't scroll if you are easily upset by that sort of thing. You can see that once they get the staples out and stuff, we will be able to style her hair around the scars. Seeing the incision reminds me of how major the surgery is.

Aaron had to leave today, which was really hard for all of us. He and Emily had some time to hug and talk a little bit while she was awake this morning. After she got through the morning, she was doing well again. Right before Aaron had to leave, OT/PT showed up. I had to take a walk while they were here. It was too hard to watch. By the time I came back though, she was sitting up and doing OK. They got her hand in one of her old braces and it is looking really good. She has very little strength in her trunk, so sitting up is still a struggle, but I was very proud of her. She did very well. e That was a big morning for her. She is sleeping like an angel right now.

She still is not feeling in some areas on the left, but when the neurosurgery resident assessed her this morning, it seems that she does feel in some areas. Like everything else, it takes time.

She seems more lucid today and dosen't seem to be hallucinating anymore. She thought she was in the car yesterday, but today she knows she is in the hospital. She is still having trouble opening her eyes, but she can and can see.

Pretty crazy, huh? The doctors say this looks excellent!

Well, more later. I am going to get some reading in!

Love,

Annie

ICU Day 4

2009-03-23T17:29:00.000-07:00

hi Everyone,

I tried to post earlier, but I got interrupted quite a bit. Emily is doing very well today. She is starting to tell me stories, which means she is getting back to her old self. She is still in and out. We are taking her off the morphine because she was starting to hallucinate pretty badly. So, she was taking Tylenol with Codeine today. She is still in a bit of pain from her head, but it seems to be getting better. She is having quite a bit of bleeding from the back of her head, so they may need to put a few sutures there. They want to be extra cautious since she was on steroids for so long, which increases her risk of infection. She sometimes thinks that she is places other than here, so maybe the morphine is still working the way out of her system.

I thought before that she pretty much had feeling in her arm and leg, but now I am not so sure. I was rubbing her leg earlier on her thigh, and when asked where I was rubbing she said on her calf. The same thing with her arm. A little bit earlier, she asked, "Mom is this your arm?" and when I asked where, she was holding on to her left arm and said, "the one with the bracelet." I know I have to be patient.

OT came out today and stretched out her arm. We brought one of her old arm braces and she wanted me to try to put it on Emily for small amounts of time during the day.

This morning, we got Emily to sit up twice and once last night as well. It was a very difficult process, as Emily does not have much strength in her torso, but she did it!

I am probably leaving out a bunch of stuff and none of this is in order, but I know you understand. I will try to post as much as possible, but as Emily wakes more, she wants me more and so I have less time to spend doing this sort of thing. Even nights are difficult right now. Mom stayed with her last night, so I got some much needed sleep.

In the next couple of days, I want to post some pictures of some nice gifts Emily has received. No pictures of Emily today. She looks much the same except she is slightly less swollen. She was able to open her eyes briefly and see what was around her. We even watched the beginning of Horton Hears a Who.

Love to all of you,

Annie

ICU Day 3

2009-03-22T10:42:00.001-07:00

Em has come a long way since my last post. She is talking quite a bit, although most of what she says is pretty difficult to understand. She is mumbling mostly. Sometimes it is as if she is talking in fast forward. Emily is a pretty fast talker as it is (those of you who have spent some decent time with her know what I mean) but this is like auctioneer fast. She has started eating and drinking clear fluids. She wants to do everything herself, even though she isn't opening her eyes yet. It is pretty funny for us to watch. These are a couple of pictures from yesterday when she grabbed a Popsicle and started eating it herself

She used a lot less pain meds last night, although she is a lot more alert and feisty. What is pretty amazing is that she remembers going into the operating room and the anesthesiologist playing Beatles on itunes for her. She told me about it at super speed. She is feeling things on the left side, but not much movement yet. Her leg is hurting a bit from being in bed and in the same position for so long, but we are rubbing it out and it feels a bit better. We are also dealing with some skin issues from the steroid use and from her body being so tight for so long.

She woke up a moment ago and wanted to open the present we promised her. She opened her eye for a minute, but couldn't see yet.

That is all for now. Today is going to be hopping. Em is quite alert and uncomfortable, but not completely aware of all of her surroundings. She is still in and out quite a bit.

Ann

P.S. One of the only reasons I am staying calm is because of all the other hemi parents that shared their stories. They gave me a little idea of what to expect. So, thank you to those families. And yes, I have adopted a bit of Dr. Mathern's philosophy...I don't worry unless he does! :)

ICU Day 2

2009-03-21T09:05:00.000-07:00

Hello all,

Em had a pretty restless night. She woke up about 1:00 and her heart rate was up to about 135-142 and stayed up there, even after a dose of morphine. They finally gave her a second dose around 5:00 and it settled her down. They put her on a new med to help with her high blood pressure. It made her look like she is blushing all over. The doctors say that she is looking good.

She still isn't opening her eyes or communicating verbally other than grunting, but she is giving us hand signals. Dr. Mathern asked her to raise two fingers and he would leave her alone, and she did it. After that he was poking around and she raised the two fingers again. She was holding my hand and reaching for it last night. And when my mom came in this morning, I told Em she was here and Em waved her hand at her reached up for a hug.

They put an arm brace around her elbow to prevent her from messing with her head. She managed to get it off last night. We have no idea how she managed it, but she definitely does not want anything on like that. They put these leg braces on her legs that gently squeeze to keep up circulation. They take them on and off. She was messing with her legs and the nurse took them off yesterday, asked her if that was what she wanted, and Em gave her a thumbs up. It is a little weird because Em's face doesn't change and she doesn't try to talk. It is hard to see her that way. They said it could be from the swelling too. She has puffed up quite a bit from yesterday. I know that all of this will take time. They were talking about getting her up today to go to the bathroom and removing her catheter, but I just can't see that happening right now.

I will try to get a new picture today and post it. They want to take the bandages off today and let her head breath. I don't know if I said it before, but Dr. Mathern said that they kept most of her hair.

So, everything is going well. So all you worriers...I am not worried, so don't you worry.

Love,

Annie

P.S. Another big thank you and **virtual hug** for all the prayers and positive thinking. I think they worked and are continuing to help. I know Emily is feeling it.

*****Just wanted to add that Emily said a few words today. She told me she loved me too when I told her I loved her and said, "I love you grandma". She is also giving hugs and kisses. Thumbs up and thumbs down when she likes or dislikes something.*****

I will get a picture tomorrow...

ICU Day 1

2009-03-20T11:24:00.000-07:00

~Emily sleeping peacefully. *Note the arm in her lap!!

Hi Everyone,

We ended up leaving Emily in recovery. They didn't get her moved to the ICU until around 1:00 in the morning. We got here really early. She still hasn't opened her eyes. She is moving around restlessly. Her blood pressure and heart rate are pretty high, but the doctors say that it is due to the anesthesia and medications that she is on. Her arm and leg are relaxed! She still has the contractures, of course, but she is more relaxed than I have seen her in years. We are very happy and relieved about that. We would like to see her open her eyes, if only for a second or two, but we realize that this takes time.

I will try to get a picture and post it later.

Ann

A couple people have asked about Emily's room number and the address to the hospital.

Mattel Children's Hospital at UCLA
757 Westwood PlazaLos Angeles, CA 90095
ICU Unit Room #5415

****Just a note...Emily opened her eye (the right one is too swollen) for a second and tried to hug me. Just thought I'd mention it.

Surgery Day

2009-03-19T07:57:00.000-07:00

7:11- We saw Em about 30 minutes ago. Of course, she was completely out and didn't know that we were there. Her arm was resting by her side and she was lying down flat with her leg down. This is very encouraging. I kept it together until then. A long day... She looks very fragile and I was afraid to touch her. She started to stir and I could tell that the nurse was getting nervous. She said something about blood pressure and not making her move, so I left her alone and we are back in the waiting room. We are waiting for her to be moved to the ICU and then I think we will go to the hotel for the night. The nurse said she probably will not wake up, but I know that I cannot leave her until she is settled in her room. My mom wants to stay with her, but she is tired too. I will post again tomorrow when we get a better idea of how she is doing. So far, so good.

3:45 - Dr. Mathern came down and talked to us. He said everything was pretty routine, which is great news. She only needed one unit of blood and he was able to keep most of her hair. A little in the front will show. That is small potatoes, but she will be pleased with that one. She was stable throughout the procedure. He said that side was pretty severly damaged from years of RE taking its toll. We will not know until she wakes up whether her leg and arm have relaxed. It will be another couple of hours until she is closed up and in recovery. Dr. Mathern told us to see her for a while and go back to the hotel for a good sleep (that may be difficult for me). AND he wore his superhero socks. I told him I had an image of him standing with his hands on his hips with a cape blowing back behind him! LOVE that guy. He really is such a genuinely nice person and great surgeon. I feel that we are so fortunate to have found him.

Thank you to everyone who remembered Emily in your thoughts and prayers today. We thank you, thank you, thank you.

3:15 - They are starting to close. Wow! Faster than we thought. Dr. Mathern will be down in about an hour to talk to us they said. We are going to try to sneek up into recovery after that and see her for a minute before they take her to ICU. I will probably update again after I see her, but it may be later on in the evening. I can't wait to see if her leg and arm are relaxed!

2:00 - they finished the resection and moved to the micoscope to disconnect the remaining tissue. They said that she is doing fine.

11:45 - they finished "mapping" the brain and everything looks as they thought it would. The entire hemisphere is showing abnormal activity. They are beginning the resection now. Everything is going well. Thanks again for the messages. I am getting some reading done (although sometimes through my eyelids).

They started the surgery at 9:20. As far as I know, everything is fine.

Em went in at about 7:30ish. We woke up at a quarter to 5. She was pretty upset, but they took us all down to the pre-op room and we hung out there for quite a while. She was doing OK by the time they took her into the OR. It will take a few hours to get her all hooked up and ready for surgery, but she will be asleep for the whole thing.

I will update when I get an update. They said they will update when the actual surgery begins.

We're here, again.

2009-03-17T20:50:00.000-07:00

Hey Everyone,

Just a quick one...

We arrived in LA today. Em didn't have the best drive down (she got a little car sick), but was in pretty good spirits once we got here. We had dinner a Chili's, which is one of her favorites, and put her to bed.

We will be admitted tomorrow around 3:00. We have an interview at 10:00am and we will get to see some family that is down here. Em is looking forward to that.

She is getting a little scared, but who wouldn't? I am scared to death, and I am not even having surgery!!

Thanks to everyone for the nice postings. We also had some wonderful visits at the house yesterday, which did wonders for Emily. She was very excited to see her teachers (Ms. Arnall and Ms. Hopper), her aide (Ms. Hayek), Bob, Jeanne and Katie. Thank you all for your visits. We have also recieved so many nice cards and well wishes. It really helps so much.

She will probably be in surgery on Thursday for most of the day. I will keep everyone posted on the progress of the surgery, so keep checking in here for updates.

Ann

Oakland, here we come!

2009-03-13T20:27:00.000-07:00

We have had a very trying and eventful couple of days. On Thursday, we visited UC Davis Medical Center. We were originally very excited at the prospect of Emily going to UC Davis for her rehab since it was very close, then ...we went there. After our visit, we decided that the facility was not a good fit for Emily's many needs after this surgery. So today, we went to Oakland Children's Hospital. What a big difference. I was very relieved. I know Emily will be in good hands there. They have many more programs to interest the kids between therapies, many kids Emily's age there, and very upbeat people that I feel will motivate Emily to work hard. So I am pretty happy about this decision.

Emily, however, was having a very difficult day. I really think visiting these places is a good/bad thing. Good because Emily will know where she is going, see what kinds of things she will be doing, and meet some of the people she will be working with. Bad because all of this becomes very real for Emily. Em was on the verge of a meltdown all day, and boy she did not disappoint. She was pretty upset this evening. I know that she is scared, excited, nervous, apprehensive, and many other things. All of which are completely understandable. I am feeling the same way. I am doing my best to reassure her, but she definitely is experiencing cold feet.

On a completely different note, Aaron, I and Emily will be participating in two interviews about hemispherectomies, Rasmussen's, and our experience with both. I don't know the details yet (one is some sort of documentary on hemispherectomies), but we feel strongly that it is important to help educate people about this horrible disease wherever we can and to help other families who are going through this difficult journey. They feel that interviewing Emily is a great opportunity because she is old enough to remember what life was like before Rasmussen's and able to convey that in an articulate manner. We will see how it goes.

Em's punk photo shoot

2009-03-11T11:54:00.000-07:00

Dr. Mathern didn't want us to shave Em's hair completely (he likes to shave it in the operating room), so we ended up with a couple inches of hair in the end. We had fun getting there though. Aunt Kristi did an awesome job. All she had to do was rat Emily's hair slightly to get it to stand up in a mohawk. We decided that it was a look straight out of the 80s. She looks really cute with short hair. Anyway, here is your laugh for the day!

Last minute doctor appointments

2009-03-10T19:31:00.000-07:00

We saw doctor Dr. Friederich (Em's neurologist) and her pulmonologist (lung doc), Dr. Trias, today. Dr. Friederich increased Em's pain meds and we are switching back to her other muscle relaxer and increasing the dose with that also. She was the weakest she has ever been today. We are having more trouble transferring. It hurts her her leg and she can only stand for a few seconds at a time. Hopefully this medication change will help with that. Em's lung function is down to 45%, which is lower than last time. Dr. Trias feels this is probably because she has an overall increase in her weakness since she has been off of the steroids. Her lungs sound clear though, so that is great. We will start Albuteral breathing treatments and I will beat her back with these little cup things. This should keep her lungs open and clear for surgery. He is worried that she can develop pneumonia when she is intubated during surgery.

We are hoping to check out the UC Davis Rehabilitation inpatient clinic on Thursday. Em wanted to spend some time at school, but I don't know that this will happen. I really don't think she is up to it at this point, but we will figure something out.

I am just running around trying to get everything done. I feel like I am doing a lot of running and getting nothing done though. It will all come together. We are celebrating Elise's Birthday on Saturday. She will not turn 4 until March 28th, but I won't be here then, so we are having an early one. I don't think she will know the difference! I will post some pictures. I am sure they will be cute!

Posting comments

2009-03-10T10:57:00.001-07:00

Just a note to let you know that if you have difficulty posting a comment here, you can sign Emily's guest book instead at http://www.caringbridge.org/visit/emilyjanae. I always check both. I don't know why this site sometimes does not accept comments...it's a mystery.

Annie

Good end to the B-day & WE ARE HOME!!

2009-03-06T20:50:00.001-08:00

So Em's birthday ended on a positive note. The staff at UCLA is so great. They got Emily another spot at the MRI, which is not easy to come by. They gave her some morphine for the pain and let her try again. It was a little tough going at the end, but she did it!! We were released in the evening and were even able to go out to dinner to celebrate her birthday. She was very fixated on this event and we were so glad it happened. She had some Cheesecake for dessert. YUM!!

The best part of the day though was that they kept offering to decorate Emily's room. Her very serious response was "I'm going home today." She was very blunt. It was hilarious. Those poor volunteers! They brought Emily a great gift though. It was so thoughtful and generous. I was so impressed with the staff at UCLA. Everyone was so nice.

We left this morning and made it through with little traffic until we reached Sacramento. Em was exhausted and was a bit touchy this evening, but I think she will be OK after a night in her own bed. I haven't heard a peep out of her yet. Thanks to everyone for the well wishes and happy birthday messages. I still have a few to read to her tomorrow and I know that will perk her up! We have a very full week. There is so much to do to get ready for the next trip down!! I will find the time to keep everyone posted though.

Take care everyone and know that we love you,

Annie

NOT a Happy Birthday

2009-03-05T16:15:00.000-08:00

Em isn't having the best birthday. We were supposed to have an MRI done early in the day and then get sprung so we could go to dinner for Em's birthday, but the MRI did not go as planned. They had to get Emily's EEG wires off and start a new IV (the other one was a little old I guess) and then go to the MRI scan. Well, they decided to do all of this at the same time. My dad and I were meeting with Dr. Mathern at the time, so my poor mom was dealing with all of this. Em just got really overwhelmed and ramped up as they were transported to the MRI. Then her leg started in and she just couldn't handle it. The gave her some medicine to calm her down before they left, but it just did not work.

We are waiting to try another one, but it is getting late, and I don't really know when they will come. They are going to try to give her a little morphine for her leg so it will not hurt during the MRI. Keep your fingers crossed that it will work, because it it doesn't, we will be staying another night here.

Our meeting with Dr. Mathern went well. He explained things really well, and the "doom and gloom" lecture was not very bad since we do not have a lot to lose. A lot of parents have to decide if the risk of losing mobility is worth getting rid of the seizures. We are kind of coming in from the opposite side... We saw the PET scan, and there is very little activity on the damaged side of her brain. They will compare that with the MRI as well. All the doctors will meet up on Wednesday and make sure they all agree that surgery is the best option, although there is really nothing else we CAN do at this point. We have tried all other treatments. They really have not seen any other cases quite like Emily's, so we are breaking new ground. Good for the doctors and future patients, scary for us. We are not sure what the outcome will be, but Dr. Mathern is hopeful, and so are we.

We are going to take care of all our details this week, including visiting the inpatient rehab facilities on our list (UC Davis and Oakland rehab center) to decide where Em feels most comfortable and meet some of the staff. UC Davis is first on MY list, but it will be nice to visit before we make the final decision.

Em has gotten some really nice gifts for her birthday and things from the hospital. I have to send a shout out to Aunt Kate for the great picture frame and goodies, Bob and Jeanne Regello for the wonderfully thoughtful books (and the nice visit), Auntie Pam and Uncle Dave for the spectacular goodie bag, Ann Davis for the movies and DVD player, Aunt JoAnn and Uncle Joe for the thoughtful goodies and fun card, of course Grandma and Grandpa Stoermer and Grandma and Papa Krieger for the great birthday presents, UCLA family life department for the birthday gifts, and the hemispherectomy foundation for the Valentine gift, Jennell for the game and for coming out here to see our girl, and finally, to everyone who has posted and has kept Em in thier thoughts and prayers. Thank you everyone! You are our strength.

I will write again soon.

Love to everyone,

Annie

P.S. By the way, I am sleep deprived, so please ignore all my typos and rambling sentences. :0)

PET Scan/Meeting Dr. Mathern

2009-03-03T20:05:00.000-08:00

Hey Everyone,

Em had another eventful day. She had an IV put in last night so she would have fluids, since she was to fast until her PET scan today. We were expecting to do it in the morning (9:30ish), but we ended up going down at 12:00 and coming back at around 3:00. She didn't eat until then. Luckily, Emily's appetite has decreased significantly in the last week, so it wasn't as big an issue as it would have been before. Her leg started acting up in the scanner, so the last 10 minutes or so were really tough.

We met with the interns (I guess that was what they were) came around a couple times during the day and asked some questions. I was feeling a bit discouraged about things after their visits because of the kinds of questions they were asking. I have felt this from other doctors who decided that Em wasn't having seizures and wasn't a candidate for surgery, so I kind of felt things were going that way.

Later on in the afternoon we met Dr. Mathern. I knew after a few minutes that I really liked him. He examined Em, paying close attention to her left arm and leg and how they were constricted. He explained in a very clear way why he thought she would be a good candidate for the surgery, and when he left, I felt better about our decision than ever before. We will meet with him again on Thursday and ask him more specific questions that were difficult to ask with Emily in the room. He will also go over the risks of the surgery. What he basically explained was that Em's spasms and tightness in her arm and leg were caused by constant electrical malfunctions in her brain. So although she does not have specific epileptic episodes, she has constant activity that is causing this. Some kids with Rasmussen's have what is called EPC, where their hand, leg, or face twitches constantly with seizure activity. He explained that it seems that what Emily has is similar, but more intense, so that instead of twitches that you can see, her arm and leg are just in a constant flexed state. I don't know if that makes any sense, but it is the best I can do.

He also took one look at Em's hair and said, "Sometimes I can save the hairdo by braiding it aside...but with that head of hair, I don't know... We let him off the hook and told him we had already decided that we are shaving it before. He was pretty funny though. He told Em that in a couple weeks they would have a date, spend all day together, and she wouldn't remember a thing. She thought that was pretty funny. I know that a doctor doesn't have to have a great personality to be great at his/her job, but it sure helps!!

I am not quite sure when we will be discharged. Hopefully tomorrow. She will have an MRI after they unhook her from all the electrodes.

Anyway, that is all I have for now. I will know more on Thursday.

Ann

Hospital EEG Day 1

2009-03-02T20:00:00.000-08:00

Well, after waiting half of the day, we got into our room and Em got hooked up to all of her electrodes and stuff. She is pretty cranky, but it was a really stressful day and she is still getting used to her wheelchair. We are having to remind her that there are people walking on the street, that she can't just plow into an elevator without watching for other people, and other basic driving rules. We saw some neurologist who scared us a little by saying MAYBE she would have surgery...but I think it is mainly because they are not familiar with her case. I am eager to meet with Dr. Mathern (the surgeon) to see what he has to say. We go for a PET scan in the morning, which means Em cannot eat after midnight. Hopefully they will get to it early so Em doesn't have to go too long without eating. She hasn't had much of an appetite today, which is a huge departure from they way she was a few weeks ago. Maybe a good sign that the steroids are getting out of her system. That is all I have for now. Here are some pictures of Emily with Thunder on Friday and of Emily's SWEET new hairdo. No colorful hat this time! The nurses were very impressed with the height of Em's hair...too funny. Probably one of the only smiles we got all day though.

Tomorrow is another day!

Emily's New Wheelchair

2009-02-26T19:37:00.000-08:00

Hello Everyone,

I thought I would take this opportunity to try out the new blog. I can post more pictures here and I can leave them up. I love the Caring Bridge site, but I can only post a few pictures and if you don't visit really regularly, you might miss them.

Em got her new wheelchair today. She was so happy. She had a grin ear to ear while her new chair was being adjusted. She can tilt herself almost onto her back, which they recommend she do every hour or so to increase circulation in her legs. It is really cool.

Emily went to school after she got her chair and did an awsome job. I was able to walk up to the gate today at school and just walk to the car with her instead of having to go into the office today. It was really weird, but great. I felt like we were breaking the rules or something! She is definately a better driver than I am. She didn't even run into any door jams when she got home. She is on speed 1 right now (there are 5 speeds),but I had to get after her for bumping it up to speed 3 when she was scooting outside. I am not ready for that yet! Haha. My mom kept reminding me that she is almost 13! She went all the way down the street, and there was no catching her! I am so very happy for her. It must feel so good to get back some control.

Well, I am nowhere near ready to leave, so I know I will be very busy over the next couple of days. We will see Thunder tomorrow and show off her chair to her horseback riding peeps. She is really excited for that and keeps telling me "I am going to go in by myself tomorrow!"

We are going to have a small early birthday for Em on Saturday before we leave so that her sisters and dad can celebrate with her. Em won't be IN the hospital on her birthday, but she has an appointment that day. We are going to take her out to dinner though. I have a feeling she will open presents before her birthday too. I don't think grandma will be able to wait! :0)

I will update when we get down there and let everyone know how she is doing.

Em is that little dot way down the street. Go Speedracer, go!!
Em chasing Elise down the street. Watch out!

Emily and Ann Davis opening Birthday Goodies.