Monday, November 30, 2009

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

Friday, November 27, 2009

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 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

Tuesday, November 24, 2009

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

Sunday, November 22, 2009

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.

Saturday, November 21, 2009

Our Sweet Michigan Friends

Dancing with Grandma

Reggie, Melissa, Josie, Katelynn and May


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

Friday, November 20, 2009

"She Did It!!"


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


Thursday, November 19, 2009

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

Tuesday, November 17, 2009

Slow, slow, now fast!


OK, Przemek needs to make up his mind. For, oh lets say 5 months, he has been insisting that she slows down her walking and to use controlled slow movements. Today he decided she is competent enough with her canes that he is going to speed her up! He is trying to get her speed walking. The only thing in her way is that she is such a daydreamer and is consumed with the distractions around. Hilarious. Speaking of distractions, he let those come into play today. Usually he wants the gym so quite without anyone around so she can concentrate. Silwia gets to watch one round a day but that is about it. Today Silwia, Max and I all got to watch. In fact, Max was doing his homework in the gym, making paper airplanes, etc. She still walked like a champ. For those who don't know, Max is Przemek's and Silwia's 9 year old son who is adorable...and Josie really thinks so.

I had to do 3 different videos today because I learned from the past that if they are too big they won't download on the blog. The 1st one is her opening commentary before she starts walking. There isn't any really good walking on it but I put it on because she is so cute about it and saying she is walking. The 2nd one has some of the 5th round on it. You will see how smooth she is at the 5th round. The 5th round is usually about 45 minutes into walking and 2 hours into therapy. The 3rd video is her finishing the round and how funny she is trying to get Max to hug her. Smart girl. Enjoy the walking. I know I am. Until tomorrow...Jenny and Josie
**The vidoes downloaded in a different order. Josie's commentary is now last**

5th round walking

End of walking

Josie's opening commentary

Monday, November 16, 2009


OK, I know most of you who know me are thinking that speechless and I don't usually collide in the same sentence. Well folks today they did and they did for everyone at therapy as Josie glided across the floor like she has been walking for more then 2 weeks. It was remarkable. I was speechless, Przemek and Silwia couldn't stop smiling and laughing and Max (their son) was doing "good walking" dances. Przemek kept asking were Josie was because it was so smooth, concentrated and controlled it couldn't possibly be her. At one point he even started to teach her to go this point the walking is really slow so it can be perfect and controlled and quite frankly she can't go faster yet. I am so pleased with this progress I just can hardly believe it.

Tomorrow we will begin the preparations for our departure. A program needs to be written and recorded for us to take with us. There are things I need to learn so as she advances in her ability I am able to keep teaching her (should have gotten my PT license). It is going to be so exciting to watch her take what she has learned and start to apply it in her everyday routine.

I will try to video more walking tomorrow. I can't believe I didn't have the camera today. I left it at home by mistake which I haven't done since we have been here. Josie is taking this all in stride like it is no big deal. She walks in the house now and even started her own bath again tonight. Let me remind you that I am always with her but she is taking responsibility for herself. It is exciting to see her mind and world grow as her independence gets better. 4 more days to learn it all!! Until tomorrow, Ciao...Jenny and Josie

PS. One more exciting piece of news...there is a set of head conjoined twins that are 3 year old girls that are currently undergoing separation surgery in Australia. The lasted report is that they have been separated and are undergoing the head reconstruction part. Brings back many memories. I am glad we are past that and excited to hear that the girls are doing well so far. You can see their story at Click on their picture and then go to the top of the page it will give the latest updates. Prayers are needed for them. This is the beginning of a long, but exciting road.

Sunday, November 15, 2009

"Thank You Mary"

Lighting her candle

Thank You Mary!!

Josie walked most of the way into church today. It is the first time that she has attempted her canes there. We arrived 25 minutes early to take on this task. We tried to arrive before all the little old ladies that park in the very front handicap spots so it wasn't so far to walk. We were too late!! She walked most of the way and as it got closer to the start of Mass there were so many people that it affected her concentration. I was impressed she got as far as she did. After church, Josie wanted to light a candle by Mary like every Sunday. Every Sunday she lights a candle and prays for her sister and her walking. She adds in other intentions also but these 2 remain constant. Today she walked up on her canes looked up at Mary and said, "Look Mary, I am walking. Thank you Mary." Thank goodness there were people around or I would have burst into tears. Nice Mark Tebow and his daughter, Charlotte, stuck around with us. Mark was able to take the picture for us. She wasn't steady enough at the moment for me to get that far from her. Mark and his family serve as a host family for Healing the Children. After she lit her candle and prayed to Mary she walked part of the way out. That was enough for the moment.

We got to go to the Livingston's for a while with the Eger girls. It is always a treat to get to be with these amazing families. Josie, of course played with May and Melissa. We go to have a concert by Grant who is 14 and very talented on the guitar and as a singer. He played us a few songs. I was surprised Josie wasn't trying to sing along. Just give her a moment to get to know him better.

At the store tonight there was a power outage. It was very weird to have the whole place go completely dark. Josie had my cell phone so she was using it as a flashlight. Strange.

We had a nice dinner here with Jeanie and Roger. Fun to be together. We are going to miss everyone very much when we leave. We will look forward to seeing them in April.

We begin our last week here. Josie said that she is excited to work with Przemek this week because it is getting easier to use her canes. This week is about tightening it all up. I also need to spend the week focusing on what to do as she advances. We are recording her this week so we can take it back to her therapists at home so they can help with the regime. It is going to have to stay strict and strong. We can't afford to go backwards at all. This is were I have to really step it up. With her already using the canes around the house it will be easier to enforce this at home. Pibb, her dog , comes on Thursday and so does my mom. We will spend the weekend with the trainer so we can get trained. It is an exciting week and an exciting time. I am so thrilled with her progress I can't believe it. She isn't fast on her canes yet, but she can do them. The hardest part is behind us. Thanks to all of you for reading this and for all your support. Jenny and Josie

Saturday, November 14, 2009

The Grocery Store

Look at the amazing standing with her own cart!! I would have videoed but I was too nervous to be that far from her the 1st time with a cart.

Celebrating with flowers from Roxanne

It is amazing were milestones actually occur. Today when we were out running our errands, in 65 degree weather, Josie wanted to bring her walker. When we went to grab lunch, she wanted to walk in with her walker. She hasn't used her walker in over 3 weeks because we have focused so hard on the canes. Przemek has been saying that she will get to a point where she prefers her canes over her walker. I thought he was crazy until today. She said to me after using her walker that she likes her canes better. They were easier to use and!!

After lunch she said that she wanted to go to the grocery store. We didn't need anything at the store so I ask what she was after, finding this request odd from her. She finally admitted that she thought she could walk with the kids grocery carts and that she wanted to go do this. I drove to the store so fast we were lucky there weren't any police around. I went in first to Trader Joe's to get the cart ready. I put a few waters in it to weight it down so she had a better chance of success. I want her to feel like she can do anything. I got her out of the car and standing at the basket. She looked up and me and said, "Don't worry mom, I can do this" and off she went. I thought I was going to fall over. I held tight to her shirt in case she wobbled. She was strong and steady. She loved the freedom of collecting things in her cart. She followed 2 brothers and said she was in a cart parade. It took us about 45 minutes to go around the store, but she did it.

When we arrived at the check out she help Rozanne, the clerk, get the groceries out. We couldn't have met a nicer person to help us then Roxanne. Josie told her that that was the first time she has ever been able to push her own cart. She was so proud. The family that had seen us in the store were cheering for her and walked out with her. Roxanne even got her 2 bouquets of flowers saying that they were to celebrate her big accomplishment. She said one was for her sister and one for her. She actually grabbed a pink bouquet and a purple bouquet like she knew that they were pink and purple. (In the media, Josie has always been in pink and Teresa in purple. We have kept these colors for the girls). Magical how it all happens.

We returned home and I got the canes out for her to go into the house with. Josie said, "Hey mom give me a break" meaning from walking in the house. I responded, "I will when you get to the couch!" She laughed, grabbed her canes and walked perfectly into the other room and onto the couch.

I am having so much fun watching her as she is totally figuring this out. She should be steady enough by the end of next week that we can begin to work on the speed. We will try to do Trader Joe's in under 45 minutes! Cheers, Jenny and Josie

Friday, November 13, 2009

Nordic Walking

Josie makes Przemek sit for a "tea party" at snack time. She certainly has him wound around her finger. He doesn't even know what happened!!

Beautiful, beautiful cane walking

So here is the scenario of the day... Get up early and head to University of Michigan Medical Center to have Josie's Cat scan and shunt series x-rays. The neurologists here and at home are worried that there may be a blockage starting in her shunt making the seizures increase. Her numbers for her meds are normal so they are trying to find the reason for the seizures. Anyway, when she gets up she is immediately complaining of a huge headache. Not normal for her. We drive the hour out there and she isn't looking any better. Now I am wondering if they are right and hoping we aren't going to find ourselves on the next plane to LA to fix her shunt. She does her scans and then we go to the neurology dept. By the time we get there they have done a preliminary read and think that she is ok. Of course now I am thinking she is getting sick because of the headache or that she is now way to high on her meds. We go to the cafeteria and get her an apple and a bagel. I've decided at this point to cancel therapy much to my dismay. As we are getting to the car she totally starts to perk up. I ask her if we can just go do a short session at therapy so we can do just a few rounds of walking. Amazingly she agrees to go.

By the time we arrive she is totally ok. In therapy she is a great mood and totally cooperating. When the walking comes she is a champion. I can confidently say for the first time that she is walking!!! She was so amazing on her canes today. Przemek was so excited and recounting how she couldn't even do the walker when she came. Everyone came in to watch her today because it was so amazing. Przemek called it nordic walking for someone strong and steady. As you will hear in the video he is teasing her about not waiting for him and slow down you are running. You can even see her let go of a cane to give me a thumbs up and she didn't loose her balance. I am so proud of her. Now 5 more days to sharpen it all up and then we come home. What a great run here. Przemek is already planning the next step for when we return in April. Of course it will be when he removes a cane. He wants her walking on her own by Nov 1 next year. He is confident in her ability. So am I.

As you can see from part of our day, nothing is ever dull. We start out making sure she isn't in shunt failure to walking across the floor at therapy. The doctor called and said that the neurologists and neurosurgeons were reviewing her scans and think they are ok. We we don't have neurosurgeons here. I am sure the whole departament was looking at her films because they have certainly never seen films like hers before! Especially not on a functioning human.You should have seen the face of the techinician when she did her scan. I had to explain her story because the lady looked like she had seen a ghost. She has shocked them now too. If I can get the cat scan to post I will. It is extrodinary. Wow. Good night now. Our love, Jenny and Josie

Thursday, November 12, 2009

Theo our school Dog

Here is a cute picture of Theo at school with Josie. Everyday that Josie is tutored by Mrs. Bergman, Theo stays right there with them. He usually sleeps on his favorite chair next to them. So cute and of course Josie loves it.

After tutoring, Janie and Reggie brought the most delicious lunch over. It was such a treat to spend time with them. Josie just loves little Reggie. She was showing him her DS. Reggie's physical needs are a lot like Josie's were so it is neat to know that they will be starting this intensive therapy at age 3. He should do so well with it. I can't wait to see his progress. We are hoping that we can get Josie, Reggie, and Melissa in all together this next summer.

Good walking a therapy today. We just need to sharpen up a few things so that she can begin to be independent on her canes. She is so close. Of course, we will always have to be in arms reach in case she falls so she doesn't hit her head. It will be nice one day to have a skull on there so we don't have to worry quite as much as we do now. We have 6 more therapy days to do the cane "tweaking". It is really fun to see her walk. A little boy who is 4 and has dedicated his last year to this place walked independently today for the first time. He actually walked halfway across the room. His mom just fell on the ground in tears of happiness. Sylvia kept saying to her don't cry. Mom said that ever since he took his first breath she was waiting to see this happen so don't tell her not to cry. I told Sylvia when I see Josie walk without any assisting devices she better go buy the Kleenex factory out!! It is so exciting to witness these miracles here. It is also so encouraging.

We got to have a lovely dinner and evening at Roger and Jeanie's with Mrs. Julie Whitman. Mrs. Whitman is the lady who lent us her house this summer. We hadn't met her before last weekend. What a treat to get to know her and what a doll for just giving us her house.

We are off to University of Michigan Medical Center again early tomorrow morning. With Josie's increase in seizures they want to do a shunt series(x-rays and a Cat scan) to make sure she isn't in the beginning stages of shunt failure. I am fairly confident she isn't because there aren't any other signs of a blockage but what do I know. If there is, everybody wants us on the first plane out of here so her LA docs can deal with it!! Do you blame them with that head? Always a good adventure with this little one. OK, night to all. Will post tomorrow. Jenny and Josie

Wednesday, November 11, 2009

Best yet

Today was another extraordinary walking day. I had to go back to the dentist today so I was unable to see the greatness with my own eyes. Since Przemek only gives out compliments when they are totally earned I believe him when he says this was her best walking day yet. He was giddy with excitement on her progress today. I am so proud of her to pull it together especially on a day I couldn't be there. It might help for me to disappear a bit more right now. It is always a delicate balance on when and when she doesn't need me to be right there.

After therapy she came home and walked herself into her room almost effortlessly. It is getting so exciting to see her balance sharpen up. Seven more therapy days left to perfect what we can this session. I look forward to every moment of them. Thanks for your support, Jenny and Josie

This is a video for cousin Luke. Luke is really missing Josie and watches the other videos on the blog so much that his mom needs something else to hear!! Luke this is for you! Love, Mimi
PS. We just called Luke and got to hear him when he saw the video for the first time. He was so happy saying I love you Mimi and blowing kisses. We can't wait to get home and hug him and then to see Matt a few weeks later. We miss the little bear cubs like crazy. Don't be surprised tomorrow when there is a video to Matt. Josie wants to do one for him too!

Tuesday, November 10, 2009

Step by step

Step by step was Josie's comment to Przemek when she was asked how does she walk? Step by step. I think that is a very logical answer. It is really how we are taking life right now. Step by step. She worked hard today for Przemek. Sometimes they are like an old married couple that bicker with each other. I think it entertains them.

Before we went to therapy today Josie had her tutor. She is doing well with her studies even though it is for a very condensed time. She walks to the kitchen every morning to meet Mrs. Bergman. Today, Theo was over and she really wanted to take him on a walk after tutor. She put him on his leash and walked with her canes and the dog through the kitchen, down the hallway and outside to the driveway. She did a remarkable job of holding the leash and the canes. He was very sweet and didn't pull her. I think he was confused as to why he had to go so slow and why we only made it to the driveway...some walk that was for poor Theo. He is a good sport with her. I was proud of her incredibly controlled steps.

After therapy today we got to go to the Eger's for a birthday dinner for May. We had a good time with them and some of their friends. We even got to see Reggie. It is a treat to have met so many nice people here. Happy 7th birthday May!! Thanks for letting us celebrate with you.

Night to all, Jenny and Josie

Monday, November 9, 2009

Another warm, fall Michigan day

Another warm, fall Michigan day. We are lucking out with the past few days of warmth!! I just need 13 more of them and then home free...until April. Josie just needs to get through 13 more no matter what the weather is. She would like to be therapy free at this point. She is close. 9 official days left. Every minute needs to count. It is hard to convince her that it is coming to an end. She still doesn't really get the concept of time so it could be 9 or 90 days to her.

She wasn't all that into Przemek's walking regime today. She seemed to fight him a bit but she still did her work. We are going to have to change up the scenery tomorrow. I think she is rather burnt out of looking at the same walls. We need to add some adventure to this. I suggested taking her to the little cafe down the street and let her walk in and order her own food. Let's put this walking to practical use so she can really grasp why she is walking and show her great independence. I know Przemek doesn't think she is quite ready but I think this will add the motivating factor we need now. Hopefully, we can do something like that this week.

After fitfully getting through therapy today, she proceeds to come home, grab her canes that she has hung on the coat rack and walked herself into the kitchen smooth as butter. She is such a beast sometimes...I mean that in the nicest sense! She then walked to the bath tub, back out to the kitchen for dinner and back to bed. No complaints, working hard with minimal help from me. She asked at one point if she could stop at the kitchen door and I ask her only if she planned on sleeping there. She thought that was funny and kept going. Apparently, the cold, hard ground didn't seem as comfortable as the bed. Now, a couple weeks ago she would have taken me up on my offer if it meant no more walking. See she has progressed (just reminding myself). I am thrilled to see her apply her technique at home.

Off to bed. Will try this sleeping thing again. It hasn't been too successful in 5 months but always worth a try. Josie gets 11 to 12 hours a night and that is all that really matters. Goodnight to all, Jenny and Josie

Sunday, November 8, 2009

Goodbye walker, hello canes

Rules seem to switch quickly in our lives these days. Since Josie has completely mastered the push walker she now has to walk all over the house on canes. There was a bit of resistance at first until she got the message that I was serious. She hasn't balked at it again. In fact she even attempted a stair today and was giggling so hard when she actually did it (with minimal assistance from me). Every time she sees Melissa on her canes she gets more inspired. During our bike ride she saw Melissa walking down the street with her canes. Josie commented about how they were going to get to walk down the street together. Good goal. I know you are all probably really sick and tired hearing about canes, yet they are completely consuming our life right now.

Moving on, Josie got to jump in piles of leaves today. That was a fun experience that she has never had. It seems to be the last bit of fall around here. Almost all the trees are bare.

Fairly quiet weekend for us. We are gearing up for the home stretch. We have 2 more full weeks of therapy to learn everything possible before going home. I am confident in her ability to get a bit more confident and stable on the canes before we leave. I hope you all had a nice weekend. Happy Sunday, Jenny and Josie

Saturday, November 7, 2009


The sweet sound I CAN WALK. How amazing the recognition I CAN WALK. How glorious the ability I CAN WALK.

For months, quite frankly years, have I been waiting to hear these 3 words I CAN WALK. Today, a very ordinary Saturday, I was having her walk to the car. She wasn't warmed up or stretched. She had just finished breakfast and we were going to go on a walk with Jeanie and Theo. Josie was walking on her canes about half way across the kitchen and all of a sudden she giggled a bit and said "I CAN WALK". It was almost as if she couldn't believe it herself. It just dawned on her. She then proceeded to walk all the way out of the house with a new spring in her step. She even told me that I didn't need to tell her what leg or cane to move next that she got it. It is amazing that she was the last to realize that for the past month she has been walking. It is only now that I am secure in the fact that she can do it. She now knows that she is doing it and that not someone else. AMAZING!!!!

I thought when her epiphany came like this after so many years of incredibly intense work that there would be fireworks, marching bands, etc instead it was a very peaceful epiphany. I'll take it.

So I decided to push it a little farther today. I had her walk in the toy store. This was a good test to see if she could really put her skills to work. It is one thing to walk in a quite gym with someone giving you commands for every move and it is another to walk in public with distractions, people and many things to see. You can't possibly rely on your concentration but your skill. She did better then I ever dreamed. She took those canes and walked right back to pick out the birthday gift for her friend Mayra. She even stood on them while the lady decorated the gift. I am in awe of her ability. She wasn't fast but she was able to do it. The speed will come over time. It is now more important to get the perfection of every step. I will continue at home to make cane walking functional.

I am going to bed now and dream of those 3 magic words...I CAN WALK. For all of you who support her these are for you too!! We can't do it without our "village". To that we are eternally grateful. Love, Jenny and Miss I CAN WALK

Friday, November 6, 2009

The moose is loose

OK, weird title and only has to do with the moose head in the picture above. We had dinner at Capital Grill and Josie kept commenting on a moose. It was behind me and I didn't see it until we were leaving. It shocked me when I turned around and she thought that was hilarious. She wanted her picture taken with the moose.

Fabulous therapy day. I can't say it enough. The cane walking was so smooth and controlled. Przemek was so happy with her progress and confident in her ability. We have 2 more weeks to sharpen it all up. He needs to pull out a couple more miracle days in that time. Actually, Josie has to pull out a couple more miracles and we definitely know she can do that. I wanted to run to the car and get the camera to tape her today. Przemek wouldn't let me leave or add anything to the routine today because he was afraid to jinx it.

Josie wants to say something..."I love everybody, and thanks a lot for looking at my blog. I had a good day at therapy."

Happy Friday to all. Jenny and Josie

PS. Mending Kids, we are so sorry we couldn't be home for the event tonight. I hope everyone had a great time.

Thursday, November 5, 2009

I love canes

"I love canes" written on Przemek's window

As the old saying goes, the writing is on the wall...I love canes. I returned to this today and to great walking. Josie was so cooperative and strong with her walking today. The left side, especially her hand is getting stable enough to make the walking safer. I still wouldn't get a foot away from her just because she absolutely can't hit her head. Tonight when she practiced she was so smooth and stable she decided on her own to go farther then she needed to. She was proud at the ease of her walking.

One more "writing on the wall" incident...tonight Josie says to me,"hey mom, do you want to know about my seizures at therapy today?" She is helping me keep track because we are keeping count so the neurologist can see if the increase in meds is helping and I was at the dentist so I couldn't be there for all of therapy today. Of course I said yes please tell me. She says, "alright, so I would walk walk seizure, walk walk seizure, walk walk seizure." Need I say more?? The poor child is working her rear off and having to deal with seizures at the same time. Like I said, need I say more? I haven't been to med school, but I am going out on a limb and say that I don't think the current medication is effective any more. Ok neurologists, now what????

Before therapy today, Josie worked hard with Mrs. Bergman. She is doing well with her school work. Janey and Lory came over with Reggie. He is so adorable. This is a child the doctors told Janey would never talk. I think they should have said would never stop talking. He is amazing with incredible speech at 3 years old. He even has a sense of humor where he can joke and understand sarcasm. He is starting therapy at Pediatric Fitness in January. He should be running by this time next year. Anyway, he and Josie had a fun time army crawling around together. He would even hold her feet and say pull me Josie. Of course she loved this. To cute. Fun to have them over.

Two weeks from today Pibb comes and so does Grandma. We are so excited for this. I can't believe we are rounding third base and heading for home. Our 5 month adventure is coming to an end. What a We are going to finish strong. Good night and sweet dreams, Jenny and Josie

Wednesday, November 4, 2009

Clean bill of health from endocrinology

Well we went to Josie's endocrinology appointment today at University of Michigan. What a fabulous facility. The good news is that there is no problems with her thyroid, pituitary or anything else that can occur in brain surgery kids. This is a relief. Now to address the 15 to 20 foal seizures she is having a day. Obviously her current med isn't effective anymore. This one didn't even last a whole year. I will consult with her new neurologist here tomorrow and try to get ahold of her neurologist at home. Hopefully we can come up with a plan of action that is fairly seamless and very safe. It is always a bit worrisome when you start switching around the seizure meds. The good part is that she is still able to tell you when the seizures are coming on so I have some warning to help brace her. She is so strong.

After the doctor, we went to therapy. She definitely had a better day today then yesterday. However, she did her best walking with me tonight at home. It was the first time ever that I put the canes in front of her and she didn't put up a fight at first. She got on them. Walked half way across the kitchen floor and then started to take off her shirt. I couldn't understand why she was stripping in the middle of walking. Then it dawned on me...her favorite thing is the laundry shoot. Down went the shirt!!! I think she was sorry she didn't have more clothes on to strip off and through down. Now I will pack her with things to get her over there. She proceeded to walk the rest of the way to the bathroom for her bath. She did amazingly well and the best part it was without confrontation.

Jeanie and Theo (the dog)came for dinner. It is fun having them so close. Theo gets to come over in the morning while Jeanie goes to work. Josie absolutely loves waking up and having Theo looking at her from the chair in the room. It brightens her morning. Off to bed. It has been a long day, but a good migraine for the first time in 4 days hurray!! Best to all, Jenny and Josie

Tuesday, November 3, 2009

Tuesdays and Fridays??!!

What is it with the inconsistency of Tuesdays and Fridays for Josie at therapy? I can't understand why these are days she struggles the most. Friday I get more then Tuesday. Fridays her legs are so fatigued and her mind must be like mush from the sheer concentration that is required of her all week at therapy and with tutoring. But Tuesdays...why?? So basically you get the gist of today. Even through these days that aren't award winning she gains so much. We got there and both Josie and I got massaged. I have had a migraine for 4 days now so Bella worked on me and Holly started with Josie. Maybe Josie was worried about me or something because she was off from the beginning. Finally at 5 o'clock Przemek told her she was done even though she really had another half and hour. He told her she could go but she had to walk to the car with her canes. She was so excited to go early that she actually cooperated. The little pistol walked herself with Przemek out to the car. It took her 25 minutes to do so but she did it. Now she is ready for her good Wednesday.

She will have a slight disadvantage tomorrow because we are going to University of Michigan Medical Center to see the endocrinologist before therapy. She has to have blood work done as soon as we get there and can't eat before that. We will do our best. It is something that has to be done.

She has been doing really well with her studies. It is fun to watch her make progress. It is a miracle that she even has the ability to learn. I will be mindful of the greatness of what she can achieve and not compare her studies to others. She doesn't need that added pressure.

I hope you all had a wonderful Tuesday. Even though we have these moments in therapy we remember that they are just moments. They will pass and will be small in the big picture. Cheers, Jenny and Josie

Monday, November 2, 2009

"You are not is Kansas anymore"

Sweet Izabella keeps reminding us that we aren't in Kansas anymore and need to get with the winter program. More layers of clothing!! I put them on and we walk in somewhere and we are striping everything off because it is so hot from the heater. You would think Josie and I were having hot flashes at 8 and 38. Yikes!! Izabella knitted Josie the most lovely hats this weekend. She doesn't want her cute little head to get cold. They are so beautiful and more beautiful that she would do this for her. Thanks Bella! You have taken such great care of both of us for the past 3 years. The Pediatric Fitness Center crew is like our family. We are so grateful for all of you.

Speaking of family, sweet Aunt Harriet went to Florida today(smart woman it is 85 down there). After Josie heard the garage door close this morning she burst into tears saying how much she didn't want her to go and that she would miss her. We have been so blessed to have the time here with her. If it wasn't for her generous hospitality and letting us stay in her home this summer and fall we would not have been able to stay. Josie has achieved so much in this time. Thanks Aunt Harriet. We love you and will miss you. Can't wait to see you soon.

And for therapy today...IT WAS AWESOME! You should have see my hero walk on those canes. It is getting to be so methodical. She walked so far with so much independence. The achieved something great today. Przemek has been persistently working on reconnecting the brain patterns so she can actually learn or achieve the ability to have falling reflexes. Well today when she was starting to fall backwards the automatic response kicked in and she was able to catch herself and pull her body up. Unbelievable. This is the most important response because it will save her from hitting her head. She didn't do it just once but about 6 times. He even started, and let me reiterated started, the process towards independent steps. This process could take a year to complete. Exciting that it has officially begun. You can see in the video that he has her walking with one parallel bar. It is her first attempt at this and she does fairly well. My battery died so you don't get to see the next part where she has to let go and hold herself up for 6 seconds. She even made it to 9 seconds one time. We just need 3 more weeks of this. so exciting.

Sadly, today we got word that sweet Rachel MacLeod's father, Rob, passed away yesterday after a very courageous and long battle with cancer. Our prayers and love go out to the MacLeod Family. Rob was taken to heaven on All Saint's Day which has to be the biggest celebration in heaven. No doubt he made the celebration more fun. Today would have been Rob's 55th birthday. Peace and love MacLeod Family.

Before going to bed we got an email from Judy Kelly that had a video of the Hoyt father son team that do all the races together. The son has severe cerebral palsy and yet they do marathons, triathlons and the Ironman together. Son Rick and walk or speak but he can do race. Dick, thae father is the body, Rick, the son, is the heart. If you want to see real inspiration check them out on Youtube. They are definitely my inspiration. Good night, Jenny and Josie

Sunday, November 1, 2009

All Saints

Happy All Saints Day! As we went to church today we were reminded of the saints that went before us and the exemplary lives they lived. Here is a picture of Josie saying her prayers to Mary. I think it is so sweet that she lights a candle and prays to Mary every week that I thought it was appropriate to get her picture today.

We took it easy today. This evening she was really complaining of a stomach ache. We even had to miss Jeanie and Roger's dinner at their house. I was sad to miss but thought it was most important to get her feeling better. We can't afford to miss a single day of therapy at this point. She did perk up and went to bed feeling pretty well. Thanks Jeanie for sending the plate home. Dinner was fabulous.

Josie is having an increase in her focal seizures again. The doctors here increased her seizure meds and the higher we go in dose the more she seizes. I am afraid she has already developed a resistance to this particular med like she did the last one. We will keep exploring the situation. We see endocrinology at University of Michigan on Thursday so hopefully they can be of some assistance too. She is having an increase of weight viscerally which is unexplainable. So we are checking it out.

Over all she is happy and thriving. We look forward to the short 3 weeks we have left here. We are going to try to get everything possible out of it. Our love to all. Jenny and Josie