Showing off her tricks

Josie has had a great couple of days showing off her new tricks. On Saturday, her friend, Lilly Dunbar, got to come over to our house in the desert to play. Josie got to introduce Lilly cane to Lilly Dunbar. They had a fun time making cookies and catching up on the 2nd grade news.

We started the morning today at her neurologist, Dr. Mitchell's at Childrens Hospital Los Angeles. Josie was walking with her canes to the room when Dr. Mitchell came down the hallway. Dr. Mitchell did a bit of a double take when she saw her. She didn't expect that kind of progress ever not to mention in just 5 months. When had a good appt. Running more tests to try to find a reason for the increase in the seizure activity. She also added on there a 6 hour video EEG, sleep apnea study and a visit to endocrinology. I could book our days full with doctors...yikes. And Josie is healthy without major organ compromise. I feel for the families with more than we have. As we were leaving, Josie was walking to the checkout counter with her canes. Dr. Mitchell asked, "Is she really walking with just he quad canes?" I thought this was a funny question since she had walked in front of her twice now. Shows how remarkable it is.

After neurology, we ran up stairs to see Susan and Jen her PT and OT. They were both amazed at how she was walking. It was certainly fun to show them. They have worked so hard with Josie for so many years. We owe it to them to get her in a place where we could make Michigan therapy successful.

Then off to Liz who is doing her therapy now. She has been trained by Izabella in Michigan and has the cage/ suit, etc at her clinic and trains kids using this method. We worked with her for the 4 months prior to Michigan. She couldn't believe her new ability. It was exciting to watch as Liz was coming up with all kinds of plans to advance her forward until we go back in April. Josie will work solely with Liz for the time being because we don't want her exposed to the germs at Childrens Hospital until this flu season clears. Right now she will see Liz 3 times a week and then we will add back Childrens later.

Finally, we got to go see Teresa. Josie was so excited all day to go see her sister. When we got there Josie walked all the way in with her canes. Laura, Teresa's oldest sister, loved seeing Josie walk. She stuck with her the whole way. Teresa was asleep in Florie's arms. We woke her up and when she realized Josie was there she gave her a big smile. She looks great after her big ordeal and long hospital stay in October. I was relieved to she that she had recovered so well. That one really scared us. She is so much more fragile than Josie and we are grateful for everyday we get her here on earth. We visited for a while with Florie, Teresa, Laura and Kevin. It was so great to be with them again. I know the girls have missed each other.

So that was our day in a nutshell...ha!

Off to bed we go to start again tomorrow. It is with an incredibly grateful heart that to write this tonight. Today really helped solidify the hard work that we put into these past 5 months. Jenny and Josie

Happy Thanksgiving

Happy Thanksgiving to all. Wow, we have so much to be thankful for. I can't even begin to list all the people in our lives that we are thankful for...so to all of you Thanks! Be have been incredibly blessed this year with great graces. We are grateful for that.

Today Josie, Mom, Dad and I ran in the La Canada Run for the Hungry. What a great event that raises money for the local shelters. It was the perfect day out with a clear blue sky and 80 degree weather.

Josie has been walking really well around the house. She even got to do a little walking in Sport Chalet. She had a real epiphany moment a couple of days ago. Mom, Josie and I went to Trader Joe's and we ran into her good friend, Rowan. Josie was in the stroller when we saw her and she jumped out of that thing so quickly when Rowan came over. After we visited with Rowan and her mom, Sherise, Josie refused to get back into the stroller. She kept saying she was big now and didn't need the stroller. She was embarrassed to be in it. Unfortunately, I didn't bring the canes. I won't forget those ever again. Now I am trying to figure out something that I can push her in that she is standing. She just can't do distances on her canes yet. I am so happy that she has the feeling of wanting to be up and walking. I don't want her to get discouraged that she isn't fast enough yet to do her canes all over. Good problem to have. Love and thanks to all, Jenny and Josie

Hello California

Josie standing at LAX. She did it. She walked off the plane. That was her goal.





We made it home safe and sound. We had a nice flight after getting all the bags in. I shipped 3 big boxes and we still had 6 bags. Josie was excited to see Grandpa at the airport with her new car that had a dvd player in it. He surprised her with it. When we got home she walked like a champ showing everyone her new tricks. It is so exciting to continue out journey here for a while. There is a lot more walking required at my parents house so she will get a lot of practice. We are going to try to unpacked today which will be a challenge.

Thanks again to all our friends in Michigan. We miss you already. Will update tomorrow. Love, Jenny and Josie

Good Bye Michigan

I don't even know where to begin to say how grateful I am for the time we have been here in Michigan. We were welcomed with open arms and offered great support. Everywhere we went we were welcomed with love and compassion. One of Josie's fondest memories was of her time in the synchronized swim program at the park. Robin Harnett let her be apart of a team and treated her like an other child. All the children and families from the Chickadee team were great to her and so were the coaches. Even when we went to Farms Market to do our shopping the employees were there to welcome us with a smile and always words of encouragement for Josie. We are thankful for our time we spent in the St. Paul parish. We had the pleasure of meeting some wonderful people there. Fr. Muma even remembered that we were leaving today and offered Josie words of encouragement.

Like I said last night, we have had the great opportunity to meet some wonderful families here. We will take your gift of friendship with us and can't wait to return to you all soon. You have given us inspiration by sharing your families and friends with us. You will never know how much that means to us. Thank you.

To Pediatric Fitness Center, where do I even begin to thank you? I know our complete journey is not over yet but I am encouraged at where we are right now. I have complete faith that you will get us to where we ultimately want to be. Josie arrived here in June in leg braces and strapped in a walker. We are leaving here without braces, without a strapped in walker, in fact without a walker period and in shoes walking with canes. That my friends is amazing. Everyone here has been like family. We are grateful for taking care of us while we have been here. You have not only been a physical support but a mental one too. Przemek and Sylwia you have given both Josie and I so much. Thank you for your contribution to her journey. I am happy that we will return to keep it going and that you will be there to help us. I know there where many difficult moments but you help push through it and you never stopped believing in what Josie could do. Thank you.

Most importantly, our dear Michigan family, Jeanie, Roger and Aunt Harriet. This whole experience would not have been possible without you all. Jeanie - my sweet and most helpful concierge. You have been my rock here. You have gone out on so many limbs to make it all work. You are the best. Aunt Harriet - without your willingness to allow us to use your beautiful home we could not have stayed. We enjoyed every moment we got to spend with you. We will cherish our time we have had with all of you forever. Theo, too!!

As we pack up and get ready to leave we are reminded of the great graces that have been bestowed upon us. We are thankful to all we have encountered. You strengthen our journey. We love you and will miss you. So Michigan, until April...good night and good bye, Jenny and Josie

PS. Friends and family in CA we can't wait to see you !!! Will update tomorrow night after we arrive in LA.

Our Sweet Michigan Friends

Dancing with Grandma

Reggie, Melissa, Josie, Katelynn and May

Grant

We had such a nice dinner tonight with some of our Michigan friends. The Egers, Livingstons and Malleys came over. Grant entertained us with his amazing singing and guitar. That was a treat. The kids enjoyed playing together. It has been a pleasure getting to know these wonderful families. We look forward to our return in April to be with them again. Thanks guys, we love you and will miss you!!

We had a change of plans with Pibb. He is a beautiful and sweet dog. However, Josie's ability at this moment is not ready for his intended application and will actually impede her progress at this time. He also needs some more training before he is able to help her. Pibb returned to Kansas tonight with Megan for more training. This is not unusual when these dogs need to hit exact needs for their individual person they are to service. Thank you Megan and CARES for your assistance with all of this. We are in uncharted waters and appreciate your expertise.

We wish everyone a happy Saturday. Love, Jenny and Josie

"She Did It!!"

FIRST DAY
LAST DAY


Josie officially survived Pediatric Fitness Center! Wow, 5 months of the most grueling and intense work. You can't even begin to imagine what she has gone through and what she has accomplished. She is absolutely my hero. She walked so well today. Better then ever. I love that we get to say that so often. It is a true testament for how well this program works. When we arrived here at the end of June 2009 she started working on walking with a push walker that she wasn't strapped into. Sylwia literally held her hips, moved her legs as well as the walker. She could only make it about half way across the room. She also arrived wearing leg and foot braces called DAFO's. Today, November 20, 2009, 5 months later she walked with her canes down the hallway and out to the car after walking for an hour and a half already. She has been Dafo (leg and foot braces) free since day one here. They actually strengthened the muscles instead of just putting on the braces to mask the real problem. She has accomplished so much this session. We know that we are far from being "done". Done will be when she can independently walk without any assistive devices. What I do know is that we set a goal for her to walk with canes and she did it. We all did it. It took more then a village.

Pediatric Fitness Center we are grateful for your love and support. you all are like family to us. Przemek and Sylwia - there aren't words to express my gratitude to you for all the blood, sweat and tears you have put into Josie. The glory today of watching my daughter walk with canes makes those difficult moments almost fade away. PS. Take care of Melissa and Reggie when they come in January. We will be sad not to be with them.

To all that have supported us on this incredible journey...THANK YOU!! We have conquered one major part. We know we have more to go. Now it is time to take the great base we have learned home so we can apply it and master it. We will return in April to begin the next level. Good night and God Bless, Jenny, Josie and Pibb
FIRST DAY

LAST DAY

Officially Introducing Mr. Pibb

Pibb, Josie's walking dog, has officially arrived!! After therapy today we picked up Grandma, Pibb and Megan from Cares at the airport. He is as adorable and good as we remembered him to be. Josie is ecstatic that she has a dog. I think he feels the same about her. We spent the evening really getting to know him and learning some basic things. He actually comes with an instruction manual and Megan here to train us all weekend. We definitely have our work cut out for us. I now feel that he is going to be so perfect for her.

Grandma was completely amazed at Josie's walking ability. I kept telling her but she said you can't imagine it until you actually see it in person. It is so different then even on the videos. It will be so much fun to watch her progress over time. We aren't going to be able to hold her down soon!!

Today at therapy she walked very well but seemed so distracted. I thought it was because she was going after therapy to pick up Grandma and her new dog. Just before we were finished she started picking little fights with Przemek which she hasn't done in a few weeks. Then all of a sudden the tears started flowing. She is sad to leave them and is going to miss them. So sweet. She is so much like me it is amazing. She appreciates so much what everyone here has done for her. She cried hard for about 10 minutes. I am glad we have tomorrow to finish up with a few more things. Goodnight, Jenny, Josie and Pibb