Sarah’s Blog

 I know I have not updated this blog since last October, but there really hasn’t been any new developments. Sarah has been doing well in school and all of her doctor checkups have been good. We only have to see her Neurosurgeon once a year now. She had a good Christmas (spoiled again). Last November we took her hiking. She had to stop and rest every now and then, but she did really good. She has fewer headaches these days, but I have a feeling that with allergy season ramping back up there we will have to deal with that again.

Sarah is only in therapy once a week now. She still gets therapy from her school too. The break we took from therapy in the fall seemed to actually help her a bit. She did some stretching and other things on her own. Honestly, she is just trying to be a normal kid right now.  She wants to do everything her friends are doing. Sometimes it is heartbreaking when we are forced to tell her that she can’t for safety reasons. She has been doing great riding her bike. Now that Spring is here we should be able to get that going again soon.

Sarah taking a break from the hiking

The kids found a place on the hiking trail to sit and rest

Sarah with Mommy sledding

Sarah’s dog Miley

Miley sitting around

Sarah had another follow up appointment with her neurosurgeon and he said everything looks great. She got a new brace for her leg. It is lower profile, but it lacks a hinge for her ankle which I believe is a step backwards. She is outgrowing the other brace, but it seems to give her move mobility. She has been out of therapy for a while, but she will return next year when our insurance kicks back in. She does get some therapy at school still, and she is going to school full time and doing most of the same work as the rest of the class, but she sometimes doesn’t do as much of it.

We finally got some training wheels put on her bike. She is not up to Jesse’s level of riding without them yet. The first day she did a couple miles on her bike. Of course after that she was spent for the rest of the day. Kim wrapped her hand up around the handle bar and we had a little strap put on her right pedal to keep her foot on. She was so excited to get on her bike again.

Sarah is 3/4 of a year out of surgery.  She has been seizure free since her last surgery (I can’t knock on enough wood for that statement). We are really looking forward to the anniversary of her last surgery. One year without seizures will be a great milestone for us, although I don’t think I will ever be comfortable enough to not worry. I still find myself looking at Sarah like I am waiting for it to happen. A couple weeks ago she caught me doing it and knew what I was doing. She immediately told me to stop looking at her like that.

We went to a meeting at her school last week to discuss her individualized education plan. I heard something that stuck with me. Sarah has been saying things like “I used to be able to do that”.  I never knew how much she remembered about how things were before she got sick. I guess it was more than I thought. It really troubled me to hear that.  It is the same reason I have trouble looking at old home videos. I guess I don’t like being reminded what was taken away from her.

 Sorry there is so much time between posts. I just want to make sure there is something other than “Sarah went to school, came home ate dinner, played, and went to bed”.

Sarah is proud of the pumpkin she picked out

 
These two are hard to please. It has to be just right

Get comfortable, it is a long ride

I couldn’t resist this picture. He is the coolest bull around

 I know it has been a while since the last update. SORRY. Sarah had a great summer.

First I will go over the doctor/therapy stuff.  Her EEG she had (I think I wrote about it on the last update) looked good. At least that is what we are told. I guess the bad side of her brain is still firing off but we have seen no indications of seizures so praise the Lord for that. Sarah had a neuropsych test done to see where she is at mentally. She has shown much improvement since her last one. She also took a test during her speech therapy session. She scored low average for her age group which is way down from where she was before she got sick, but improved over where she was at after her surgery. Her therapists want her to cut back to once a week. They say that she is through the surgical rehab part of her therapy and will be just working on long term therapy. She does get some therapy at school, and we will work with her more at home too. She is also getting a new leg brace that is smaller. It will stop right about the ankle.

Well we had a meeting last week with what seemed like the entire staff at her school. We discussed in detail what Sarah is going to need for this school year. We described where she is at physically and mentally. Some of the people had yet to meet her since she is in a new school this year. She won’t have a full time aid at her side all the time this year, but there is a good support system in place for her. Our school district has been great making sure Sarah is getting all the help she needs. She is riding the school bus this year. Kim was a little nervous the first day so she followed the bus all the way to school, but they have a teacher waiting to assist her with getting off the bus. Her friend Marissa has been really great with helping her.

Sarah started cheerleading again. She had her first game today up in Waynesville (Madison won 30-0). She is doing what she can with the cheers, but sometimes gets too lazy with using her bad arm.

Sarah’s eighth birthday party (not at the hospital, yeah)

 
More birthday

 
Sarah with her friends Marissa and Abbey

 
We went to a butterfly festival (don’t ask)

 
Kim with the girls

In a firetruck with Marissa

Thanks to a very gracious family we were able to take a vacation this year. We went to Norris Lake in Tennessee. It was nice to be able to take a break from work and therapy for a while. The kids all had a great time swimming, boating, and fishing. The weather was great. We were really able to forget ourselves for a while and rest. See pictures below.

Sarah had a sleep deprived EEG after we got back. The preliminary results were great. It seems there was no activity to be concerned with. We are waiting for her neurologists official report. Sarah has been doing well this summer. She did vomit yesterday for no reason. Those are very few and far between. It does concern us a little when it happens. She has been playing to the point of exhaustion almost every day. Sometimes we make her take a nap if we know she is going to have a big day. Her birthday is at the end of month. It will be nice not having to celebrate her birthday in the hospital.

I wish I had more time to update the blog, but we have been playing pretty hard this summer and not giving ourselves much down time in the house.

Kids on vacation

Not sure if Ava understands cornhole

Sarah and Ava on the dock being silly

On the porch of the townhouse

Sarah on the dock

Sarah starting her tubing fun

Logan having a good time too

Sarah and Mommy giving the thumbs up

Ava wasn’t going to miss out on the tubing fun

Logan and Ava on the dock

 
Found a big rock along the lake

Norris Dam

Another picture at the big rock

Ava relaxing

Sarah and Ava in a little playroom

Sarah went to an eye appointment. Her peripheral vision on her right side is improving. She still has some deficit there. You can tell by the way she has to turn her head to see things. She has been having a great summer so far. We haven’t gotten our pool warm enough to swim in yet. The weather in Ohio is crazy this year. Its scorching hot for two days and then cold and rainy for three days. I guess this is nature’s revenge on giving us an easy winter.

Sarah had her appointment with Dr. Franz and he said everything looks good. She is doing really well. That is a small relief. Every once in while Sarah’s pupils will dilate and she stares. We were becoming concerned, but when we shined a light in her eyes her pupils react and she is responsive while this is happening. Dr. Franz told us that it is not a seizure, so we feel some relief. That doesn’t stop us from watching her like a hawk all the time.

I wanted to post the pictures from Sarah’s aqua therapy.

We had a really fun memorial day weekend. We went to a cookout and had a relaxing weekend. Don’t worry the rides on the quad were very very slow around the back yard.

Here are some pictures:

Sorry these are blurry

Look out Michael Phelps

Tire swing? What kind of therapy is this?

Ava having a tiring day of playing and eating

Kids taking a ride around the yard

Sarah, Ava, Marissa, and Ryan

Sarah giving Roger a ride on the quad (just kidding)

Ava giving dad a ride

Kim was only scared a little

Sarah has been doing very well. It seems like things are becoming routine (which is good) with her therapy, school, and other activities. She is back in aqua therapy again. She has done it before. It was short lived for a reason that I can’t remember.

She has decided she is going to be a cheerleader again and is going to cheerleader camp this summer. We told her that she will have to clap with both hands this year before we will let her cheer. Her leg is getting stronger all the time. She is starting to move faster and faster. A few weeks ago she was out front with her mom and sister playing and working in the yard. Sarah was playing hard and Kim saw her actually take off running (really running). It was brief but enough that Kim was shocked. I was out back mowing the grass so I didn’t get to see it.

I have mentioned this before, but when Sarah was in the hospital last summer one of her therapists told us that she would never be able to run again. At that moment I wanted nothing more than to prove him wrong. I am hoping that I will be able to post a video some day of her running.

 I have some pictures from aqua therapy but I haven’t had a chance to upload them. I should be able to get to it soon.

Well its been a while since I posted. We have been busy with some home improvement projects. The kids had spring break and Sarah got her cast off. She has been doing well with therapy. She is almost weened off of all of her medications. We are excited that she is almost done with medicines.

Sarah, Marissa, and Ava at the park

The kids playing a little Guitar hero

Sarah using her weak hand opening a big clothes pin. That is awesome!

Sarah right after she got her cast off.

Well Easter came and went. The kids had three egg hunts yesterday. We have enough candy to last until Christmas. Sarah has been doing quite well. She hasn’t vomited for a while and seems to get better in every area all the time.

Kim and I lost our minds and let Logan get a new puppy for his birthday. I am not sure why we thought this was a good idea. We dropped the girls off at Nana’s house on Saturday and headed to Indiana to get Logan a black lab puppy. The people we bought him from were very nice and let Logan pick from the three males they had left. Logan is doing well taking care of him and Miley is still getting used to him. Logan decided to name him Murphy II. Without looking back in my posts I am not sure if I ever mentioned our first Murphy. He was a black lab that Kim and I got before we got married. We had to have him put to sleep last year. It was very hard for Kim and I since he was our first pet we had together.

This kids leaving for Easter morning service.

Sarah not noticing that there is an egg between her feet

Logan with Murphy

Murphy enjoying Miley’s toy

Just sittin around

We will have to keep an eye on these two

 
getting a little better

Miley taking her toy back

Not without a fight