Back to School

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?!

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...

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

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!!

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

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

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".