Jumping

Josie hooked up in the "spider" jumping and doing step ups

Josie had an exciting time jumping in the cage today. She was hooked up in the bungees and learned to bend her knees and the jump up and pull her feet off the ground. She was very proud. She is working really well with Richard this week. Sylvia and Przemek are on vacation. He is really hitting her with a lot of strength training. Sylvia will be pleased when she gets back at how much more strength she will have to work with. Josie is getting quite proficient walking through the house with her walker. She loves to tell me, "Mom I will meet you at the table." I pretend to still need to get something out of the cupboard while she walkers herself to the table. Great to see the independence increase. She is so proud. She wanted to help Jeanie cook dinner tonight so she got to toss the salad. Simple pleasures. We are off to bed since therapy is a little earlier this week and we are having a terrible time having to set an alarm!! Best to all, Jenny and Josie

Sweet little girls with walkers and canes

Melissa, Mayra and Josie



Melissa, Mayra and Josie being silly



Josie walking in Farms Market

Josie had a great time today having the Eger sisters over to have lunch and watch the Hannah Montana movie. You may remember from my earlier posts that we met the Eger family at the Little Club in Michigan this summer by coincidence. The Eger's have a heart grown(adopted) little girl from Guatemala, Mayra and a heart grown from Haiti, Melissa. They also have three older home grown kids. Melissa and Josie are in very similar situations seeing that they both have conditions that prevent them from walking independently but have sharp, normal functioning minds. Anyway, it was fun for all three girls to get together. Lory Eger, the girls mom, and I wanted to see if Melissa could handle canes. She already has great balance and so much strength in her arms. We handed her the canes and she walked right across the kitchen floor!! If we do that by November I will be a very happy mom...Go Melissa. Needless to say Lory will be ordering those tomorrow. It is always a treat to be with the Egers. It is selfishly nice for me to have a mom in the same boat I am in. It is nice to bounce off different scenarios with one another. Thanks Egers for spending the day with us.

Tonight we went to our favorite store in town, Farms Market. I decided that Josie should try doing her new walker in public. Up to this point I don't think she was ready because it took so much concentration that it would be too distracting in public. She didn't even baulk when I put it in the car so I knew right there she would be ready. She was. She did so well maneuvering the isles and people. Matt, the nice store owner, helped us a lot of the way and Larry the other owner came to see her walking. They have only seen her in a stroller and were so pleased to see what she was here to do. I find great support where ever we are even in places like the local grocery store.

What a nice end to a good weekend and an amazing summer. As we turn to the Fall season, I look forward to what is on our horizon. My grandpa bet on a horse at the races the other day named Jenny's New Chapter. It's record is 2 wins and 1 second place. I hope I am as lucky as this horse in the race I feel we are in right now. If we fall a few lengths back it won't be from lack of trying and training. Now we are off to the races!! Love to all, Jenny and Josie....PS. let the new chapter begin.

What Time is it...

Singing to the folks in Grosse Pointe

The title of this blog has to do with the song from High School Musical 2 and the rest of it is it's summer vacation. Now why, you are probably asking, am I titling
it that (nothing to do with losing my mind). Tonight when I parked the car at the store and was on the phone with my sister Josie had rolled down the car window and was standing up singing this song at the top of her lungs to everyone walking by!! Didn't dawn on me that she was actually standing when I first heard her singing. My little entertainer. I posted the picture up above. Never dull with her. We were actually at the store after a fun day at the beach and in the pool. Church was this morning where she spent most of the time going from sit to stand in the pews. I know it is probably distracting to those behind us but it is incredible to watch her do it not to mention great getting in 200 squats during mass. Go glut muscles go. I will just keep apologizing to those behind us who we are disrupting.

Hope everyone is enjoying Labor Day Weekend. It feels like the real world starts up again Tuesday. Best to all, Jenny and Josie

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