Movie Night

Good Evening- We had a fun Saturday. The weather was just perfect, around 80 degrees. We went to the village in the morning. It was a slow day. Nap in the afternoon, swimming, dinner and a movie on the lake under the full moon. We brought our chairs and blanket and enjoyed Kung Fu Panda. Josie laughed so hard it made the people around us laugh. She is contagious. We are off to bed with prayers of no more seizures. They are unfortunately increasing in amount, duration and strength...go away!! Love to all, Jenny and Josie

Yeah it is Friday

The Moving Sidewalk at the Mall


On her Canes by herself

Wow did that week fly. It is bitter sweet. We need every moment we can get here and yet we would love to be home. It can't fly to quickly...unless we are walking of course!! Josie finished up the week strong. I have posted a short clip of cane walking. Sylvia and Przemek are off to Florida for a much needed and deserved week vacation. They work so hard physically and emotionally it is amazing.

After therapy we went to the mall. The one thing Josie has always wanted to do that we take for granted is to stand on the moving sidewalk. Tonight she did it. She was acually able to balance and stand on all 3 portions. She was so proud of herself. Of course we had to ride it twice!! I got a cute picture of a simple pleasure in her life. Life lesson, never take even the moving sidewalk for granted because there will always be someone out there that wants to go on it and can't. It was funny to watch us lose control of the stroller in front of us and it went crashing into the trash can at the end of the way.

We now get a 3 day break that needs to be filled with a lot of swimming, cane and walker walking. I hope everyone has a very fun and safe Labor Day Weekend. Love to all, Jenny and Josie

It has taken Josie a few days to get back up to speed from where she left off...not a great mommy here thinking I was doing enough at home. Good learning lesson on how quickly it falls off. Anyway she showed great improvement with her canes today. She even ventured outside with the walker to try to navigate the rough and different terrain. She is doing a very good job with this.

Last week I begun to notice what I thought were small focal seizures. Sure enough they are. I can't figure out where and why they are creeping back. She is having about 4 a day and they are very short. I had to increase her meds to try to stop them completely. Cross your fingers they don't escalate. The worst part about them coming now is that they wanted to make her more responsible for herself by leaving her (in safe situations) so she can learn that someone isn't always going to be there to catch her. With these seizures that is impossible. Always a mystery and challenge.

On a very happy note, we got to swim under a full moon tonight. The weather was warm enough to day to go swim and she had a ball. It helps her so much to swim after such an intense workout. One more happy thing. I was able to contact the people in Kansas who train walking dogs for balance and mobility (defines Josie). We actually get to fill out her application now, she qualifies. I thought she would have to be around 10years old but she is ready!! The dog will be like a treadmill and pull her along for places like the grocery store, malls, even the halls at school. That is the simplest way to explain what we would use it for. They can also train their dogs for seizures...jackpot. I will update more about this when I have all the info. I am just excited that we are starting this new journey.

One more day with Sylvia before her week vacation. She will have Richard next week. I hope she works just as hard for him while Sylvia and Przemek are gone.

I am glad to hear the La Canada was finally able to go back to school. Josie is missing her friends but was glad to hear that a few of her friends will be in her class when she returns. She starts home schooling here next week. Happy Thursday night to all. Jenny and Josie

Good Evening- It is difficult being in Michigan and watching the suffering that is taking place at home because of the fires. The trainers at my gym today were asking where I was from and at that moment Al Roker on TV reporting on the fires in the Crest. I pray that the firefighters, who are doing an incredible job, will get some cooperation with the weather and the homes in dangere will be spared. I pray the air quality will get back to a healthy level and the kids can actually start school.

As for us in Michigan we are happy and well. Josie had her second day of therapy today. When I came in, Sylvia said she wasn't doing well with the canes. I know we didn't work as intensely as we should have (there is always guilt on my part about this..there is always more to be done) but I also know she was doing the canes fairly well at home. I quickly got the canes and made Sylvia and Przemek watch how we were doing them at home. Sylvia was actually impressed and thought it was impossible for her to lose that much. I think Josie was not trying her hardest today because she is still fearful of them.

We actually got assigned "walking homework". They think she is strong enough to be able to do more at home. Remember last session she wasn't even allowed to stand at home because she wouldn't have enough energy for therapy. After dinner and a walk to the pharmacy we started our homework. She stood balanced on the canes for so long. After that we were going to bed so she walked out of the kitchen with her canes. I only had to catch her twice which is good for how far she had to go. She is definitely getting better with them but there is a long way to go. We'll check in tomorrow. Jenny and Josie

Start of a New Session

This picture is obviously not from today. Josie wanted me to put it on because she misses riding the jet ski.

Josie has officially begun her training. She was so excited to see everyone and they to see her. Przemek was especially pleased that she has a helmet (pink of course) to use when they start teaching her transitions and steps on her own. Of course we never intend to let her fall it just adds a little more protection. Sylvia said that she didn't lose much strength during her time off and that her steps actually look pretty good. That was a lot of pressure to try to keep that up amidst the craziness that took place while we were home. I am so glad to be back here where they can take over the therapy.
Tonight we had a nice dinner with Jeanie. It was great to catch up on the happenings while we were apart. After dinner we went around the corner to visit with the Eger family. Josie loves to play with Melissa and Mayra.
I am going to keep it short tonight. I have so much unpacking to do and am so tired I am going to get to it. Good night. Jenny and Josie

We're back!!

A glow from the fire on the hills of La Canada


Josie, Raychel and Matt at the beach on Lake Tahoe


The Heydorff Family - Kalee, Holly and Mark


Golfing with Josie, Lele, Matt and Bo


Michele and Matt at the Martis Camp pool


Josie and cousin Fiona at the Delta

We are officially back in Michigan. What a whirlwind of 3 weeks. We had such a great time with the whole family including the extended family at the Delta. Happy 84th birthday Grandma Ellie. We were so lucky to all be there to celebrate our wonderful Grandma. After we left the Delta, Josie and I went to Tahoe to see Michele, Brian, Matt and Jeff. We got to spend 4 incredible days at Martis Camp in Truckee. I can't even begin to describe what an amazing place this is. Brian and Jeff are in charge of the marketing and sales for this exclusive, private family resort and community. Check it out at www.martiscamp.com. It will take your breath away. We had friends visiting there as well and Josie and Matt were both excited to play with Bo and Lele. We swam in the pool which is Josie's favorite. There is a family barn there that has an art loft, bowling alley, movie theater, games, karaoke, basketball court and so much more. We could have spent 4 days in there and still needed more time to do it all. The Heydorff's came over one afternoon and Mark (Kalee's dad) was so excited to get fishing that he ran straight there without even coming into the barn. It was like shooting fish in a barrel huh Mark? We loved seeing them. Kalee and her mom, Holly, joined us for art in the art room and milkshakes. Did I mention the barn has it's own old fashion soda fountain...quick get me out of there. Josie and Matt had a great time playing together. He is so sweet to her. Michele, Raychel, Josie, Matt and I spent one of the days at the beach on Lake Tahoe. It was so nice to let the kids play and to visit with the girls. Mich, Brian, Jeff and I stayed up one night just visiting and laughing our heads off. Always fun to be with my brothers and sister in law. I always tell Jeff that we are batting a thousand for in laws and if we ever got married we would inevitably mess it up!! Yeah Mich and Mike.

When Josie and I returned on Thursday, half of La Canada seemed to be on fire. Steph, Mike and Luke had to evacuate that night. They are still out tonight (Sunday). The fire was literally at the top of their street. My parents were never under mandatory evacuation but the fire was up the street so we got all the pictures and valuables out. Thanks to Jim Yundt for helping my dad while my mom was throwing a wedding shower for our dear friend, Julia Yundt. By the Grace of God and some incredible work on the firemen's part La Canada was saved. There is an enormous amount of damage to the Angeles National Forest. Josie was so cute every time she saw the fire flare up she would say run animals run. She was so concerned about them dying.

Today we got back on the plane and are settled back in Michigan. We are so happy to be back because we all know what this could mean. A couple of days ago Josie said I don't want to go back. (I had a felling I would hear this after the incredible 3 weeks we had so I was prepared with a response). I told her it was her choice and we didn't have to go. I also explained that this might be her only chance or at least her best chance of ever being able to walk. She said it is such hard work. I explained that no matter when it happened it would only be possible with a lot of hard work. I told her if you ever want to be able to walk and play with your friends you will have to do this or if you ever want to go where you want to go you have to put in the hard work. She thought for a moment and with a big grin she said yeah I want to do this let's go. and that was it. I let her have control of the situation because it has to come from her. I unfortunately can't do the work for her I can only put her in the right situation to get it done. Ok Sylvia and Prezemek we are back and ready to go!!

We will miss you all in LC and look forward to returning and being back in life with you. Grosse Pointe we are here again for a few more months of fun and will happily leave before you begin to freeze here!! (Please dethaw before we come in April!!) Many thanks to all for your love and support. This will be a big push and could definitely use the thoughts and prayers. Love to all, Jenny and Josie

The Delta

We are up at the Sacramento Delta with my mom's whole side of the family. It is a 40 some odd year tradition and a blast to be with the family. We started the day by having Roger Baumgarten and Jim Yundt mastermind the shortening of Josie's canes. What a relief to have that done. Now she can use them properly. This is how the rest of Josie's day went...took a long walk down the levee road with minimal support from mom, eggs, bacon and cantaloupe in Great Grandma and Great Grandpa's cabin with some cousins and uncles, on the boat for a ride (had a gas leak and had to come right back in) swim in the river while waiting for the boat, ride on the jet ski, another swim in the river, lunch under the trees on the beach, boat ride and tubing (by herself), swim in the river, jet ski ride where she learned to drive it and work the throttle...this child has the need for speed, swim in the river, jet ski ride, bath, dinner, bed. What a ball!! She was the happiest kid to be able to do so much. Hope all is well with everyone. Jenny and Josie