Friday, July 31, 2009

5th week completed



We are rounding third base and heading for home...literally. We are in the final stretch of this session. Josie had a good day at therapy not award winning. She actually did a lot more walking with the walker today and less cane work. It is hard to find the perfect focus by Friday so Sylvia decided to go for gaining more strength then having disappointment with the canes. She ended up walking about 6 rounds by herself with the walker. She is very proficient in this now. I think she was disappointed in herself for not doing better with the canes. She broke into tears when I walked in saying she didn't do well today. She is obviously putting a lot of pressure on herself. I don't want her to get discouraged for one moment. She is a champion. We worked on the positive spirit at the mall and out to dinner. She was thrilled to do something different tonight. I am so proud of her. She fell asleep tonight feeling good and happy.

She was hilarious with her new sunglasses. She was acting like a rock star and saying "Good night Detroit" like the Jonas Bros. She keeps me smiling. Good night to all, Jenny and Josie

PS. Check out the fashion accessories ie: sunglasses and head band. All picked out by the Diva herself.

Thursday, July 30, 2009

Thursday of week 5

Good evening- Well with heavy hearts Josie and I had to put Grandma Carol back on the plane to LA. It was so great to have her here. It was a relief to have someone else to help and to carry her. Here we are all the way in Michigan to learn to walk and I am not allowed to let her walk outside of therapy or use her legs accept to swim for the most part. It just means a lot more lifting...she has so much muscle = heavy...but not complaining. Basically just saying thank you Grandma Carol!! We loved having her here for the birthday, chickadee performance, Jonas Brothers concert,therapy and most of all for the company.

Today, Cousin Suzy Hull came to her mom's (Aunt Harriet). It was such a treat to catch up for a moment with her and to have her meet Josie. We are fortunate to be here to see the cousins that we would normally not see so often. Suzy's son Tim fought cancer for the past 3 years. It returned for a second time and he was fortunate enough to receive bone marrow from his older brother, JT. It worked and he is cancer free. What a journey that was for them.

Josie had another great day in therapy. She is moving forward everyday which is so impressive. Her therapists are happy with the pace in which she is improving. We got to hear about what Przemek's new goals are. When we return at the end of August he hopes to be using the canes as just practice and gaining strength as he is using the walker now. He anticipates by October to be moving to "next stage" that is independent steps. This is so far out but it is fun that it is even being discussed. Trust me, we haven't begun to master the canes but in Przemek's words we have turned a corner and a very large one.

During therapy today, mom and I ran out to the PGA Tour event that is here in Flint this weekend. We didn't get to stay but long enough for a quick hello to some of our friends. Josie and I will go back out this weekend to see the ones we know who make the cut. Fun to be back in that world for a moment. It seems like a life time ago...but a great one.

One last thing, Jeanie and I went this morning to enroll Josie with the school district here today to get a teacher to the house in the fall and also for first communion classes. It makes staying so official. Thanks Jeanie for going with me.

Hope all is well with everyone. Thanks for your support. Jenny and Josie

Wednesday, July 29, 2009

Another great day

Przemek, Josie and Sylvia = The Dream Team

Jenny, Josie, Mom, Aunt Harriet, Roger and Jeanie at The Hill

Hi All- It shocks me that Josie's therapy days keep getting better. You can't believe how hard she is working and what is shocking is that she can keep up the intensity that she is. For her to walk just inches it takes the most extreme concentration and focus. She can't waiver for even a moment. After her workout today we (my mom and I) asked to see just 2 steps. She was tired today and had already spent 3 1/2 hours working so hard so this was asking a lot from her. Well we got so much more. I will post the video. Please understand that the harshness coming from Przemek is not meanness. He has to cue her rapidly to get the muscles to fire. Please don't be alarmed at his tone of voice. He does make her correct her step if it is done wrong. If he doesn't the brain will train it to take improper steps instead of perfect steps. We have to retrain the brain and do it correctly. Focus on the sheer concentration and determination in her eyes. This therapy moves inch by inch. It takes guts, focus, concentration, determination every second not just during the walking portion in order to achieve these small milestones. This intensive therapy is considered to be therapy at warp speed and as you can all see warp speed is measured in inches. I was impressed today to see her actually catch herself when she started to fall. She is able to do this because of all the strength she acquired during her 4 1/2 weeks here. You also see Sylvia reach to catch her when she starts to fall and Przemek gets made because he is teaching her to catch herself.

After therapy tonight we got to go to The Hill restaurant with Jeanie, Roger, Aunt Harriet, my mom, Josie and I. We had such a nice time visiting. Josie loved her new sweatshirt from Roger and Jeanie. It happens to be bright pink...I bet no one saw that coming! It was fun for her to realize that every ones last name at the table was Hull. Harriet is Josie's great, great aunt. We are now staying at Aunt Harriet's. Always a treat to be with her and at her lovely house. Harriet goes up to her cottage up north on Friday and Josie is sad she is leaving. We will get to see her again in the fall.

Thank you to all that are taking time to read this blog. We are grateful for your interest and support. Lots of Love, Jenny and Josie

Monday, July 27, 2009

Week 5 Monday

Josie is back at it for week 5. She had a strong start to the week even after a way to big of a weekend...birthday, swim performance, Jonas Bros yikes. She is back with Silvia for the next 2 weeks. Przemek did come in to do the cane walking with her. He said she took 12 steps and then stood for 20 seconds by herself. He thought these steps were so much better then the ones last Thursday. I hope to be up to at least 25 by the end of the week. She really wants to walk off the plane next week to Aunt Steph and Grandma. Maybe too lofty of a goal but worth shooting for.

We got to go at Aunt Harriet's for a wonderful dinner and visit tonight. Always a treat to be with her.

We are all really tired tonight so I am going to keep this short. Miss everyone and looking forward to coming home for a quick rest before returning. Love, Jenny, Josie and Grandma Carol (Thank goodness she is still here!!)

Sunday, July 26, 2009

Jonas Bros Concert

Josie with the Jonas Brothers

Josie Screaming and Dancing








We just got home from the Jonas Bros in Detroit. Who knew that we would see them outside of California...felt like a groupie! Thank you a million Scot Finck for getting us the tickets and meet and greet. That was a special birthday present for Josie. She was so happy to meet them and take a picture with them. Kevin Jonas even held her for the picture which made it even better in her opinion. You Rock Scot! It was fun to take Grandma to her first JB concert. We introduced her to the world of screaming teenage girls...ears are still ringing.

Hope everyone had a good weekend. Love, Jenny and Josie

Saturday, July 25, 2009

Birthday and Chickadee Performance

The Swim Chicks

Josie the Chickadee


The Chickadees

















The Coaches - Charlotte, Katie, Colleen, Elyse with Josie, Ava and Robin







What an remarkable day. It was jam packed with a great performance by all the Swim Chicks and birthday celebrations. Josie had such a great time being apart of the Swim Chicks. A special thanks to Robin Hartnett who not only said yes she could do it but having faith in Josie's ability. Thank you Colleen for taking such great care of Josie and to Ava, Elyse and Katie for your excellent coaching. To be apart of a team was one of the highlights of being here in Michigan.

I will put up the video of the big show (or just the Chickadee part). After the show we had a team dinner and everyone sang happy birthday to Josie. It was fun to have Roger, Jeanie, The Savages and my mom there to celebrate with us.

One funny thing...apparently Josie is feeling confident in her new strength and ability. As my mom and I were unpacking the car this morning we walked back out to get her out and she had taken off her seat belt and was standing up holding on the back of the headrest. I nearly fell over. I was both happy and scared. Later this evening I was inside the party and my mom was helping cut the birthday cake. Josie was outside with some of her friends and the Savages opening gifts. I walked out and she was standing at the table barefoot. When I commented on it Fay Savage said she was doing that earlier. OK new rules no standing without mom, grandma or a therapist there. I never thought that would be a rule and delighted it is.

Enjoy the pictures and videos. It captures the day better then my explanations.

Happy Birthday to our friends Hillary Raulli and CJ Crawford. We miss you!

Love, Jenny and Josie

video

Happy Birthday Josie and Teresa

Happy Birthday Josie and Teresa. You have amazed and dazzled us for 8 years. We are so incredibly proud of you girls. You show the world love and teach us about the human spirit daily.

Grandma Cris and Robyn- Without you we wouldn't be celebrating these wonderful girls. There aren't enough words to tell you how thankful we are for all you have done for the them.

To all the Doctors, nurses, therapists, teachers, friends and family, it is with your great dedication and support that we can sing a victorious birthday song today. You all have a part in keeping them healthy, striving and fill them with joy. Thank you a million for all you love and support.

Love, The Hulls, The Cajas and The Alvarezes

Friday, July 24, 2009

SHE WALKED WITH CANES!!!

She did it!! She walked independently with 2 canes. This is how it happened...she was doing her walking and Przemek decided that she was ready to take a couple of steps, something he didn't expect to try until Friday or next week when she works again with his wife, Sylvia. She took 3 steps. I wasn't there to see it so when I arrived he asked Josie to show me just 2 steps. She agreed even though she was tired from her 3 hour workout. She ended up taking about 15 steps. We couldn't believe that she took so many on the first day she ever walked and especially at the end of her workout. Yeah Jos!!

I videoed the whole thing. Before you watch it let me explain a couple of things. First, don't be alarmed at Przemek's loud and stern voice. He has to do this so she cues fast enough not to fall. It helps the brain think and retrain faster. It took me a while to get over it a couple of years ago. Josie isn't bothered by it at all. She adores him and know that he is just helping her. In fact, what you don't see at the end of the video is them hugging after she walks. I was so excited that I let out a Wow in the middle and you can see him scold me. She can't break concentration because she could fall. Secondly, It looks like he his holding her and helping her but he doesn't ouch her until she begins to fall at the end. You can see him wiggle his hands to show that he isn't touching her. He has to stay close since she can easily fall.

After we left, I called Susan Knight, her PT at Childrens Hospital LA, to tell she and Jen and then I called the family. About half way through she says to me, "are you going to call everyone?" in a tone like it is not that big of deal, it is what is supposed to happen. I love her mindset. Not satisfied until she runs.

We also got to pick up Grandma at the airport last night. She is visiting for a week to see the therapy, the Chickadee performance and be her for her birthday. It is so nice to have her here.

Here is the video. Hope you enjoy it. I know I will for a long time. Love, Jenny and Josie

video

Wednesday, July 22, 2009

Wednesday

Hi All, Another great day in Michigan. Great walking. We are so tired tonight that I am going to keep this short and sweet. I didn't get great video today so I will try again tomorrow for the post. Josie has a big dress rehearsal for her Chickadee performance tomorrow morning. I will try to get some of that on tape. Very cute and funny.

Please add our little 18 month old friend, Moriah Nelson, into your thoughts and prayers. She has had a really tough battle and is back at Childrens LA after being at Stanford for 8 months. You can read more about Moriah and her absolutely amazing family at www.momentswithmoriah.blogspot.com. She is another warrior in this world. We love you Moriah, Justin and Victoria. Keep fighting!!

Ciao until tomorrow, Jenny and Josie

Tuesday, July 21, 2009

BIG DECISION

Sign for the show
The Chickadee team - Josie on the far right floating

Start of the routine


"Jackie O" in the car coming home from therapy


Hi All, Today's word of the day for Miss Josie is Unbelievable. Przemek could not believe how well she did. He didn't expect to top yesterday already. My warrior does it again. She even stood using 2 canes!!! It is remarkable that she can hold herself up. I will definitely get video of it tomorrow. I didn't see it when she originally did it but she and Przemek were so excited to show me that see did it for me at the end of her workout. YEAH JOSIE!! She is so proud of herself. On the way home in the car (our 50 minute drive) she kept saying "I'm on canes now oh yeah". He hopes to have her taking small, controlled steps by Friday.


Chickadee practice was this morning. Above are some cute pictures of practice at a small snippet of the start of their routine. More to come from the performance this weekend...

OK, now onto our big decision...We are going to move to Michigan for 3 months from the end of August until Thanksgiving. There are so many deciding factors that went into this decision but most importantly it is absolutely the right thing to do for Josie medically and physically. Our window is closing on the opportunity for mobility. We are kind of at the now or never part. It would be a shame to work this hard for all these years to "almost get there". She is ready and willing now. The ultimate goal is to get her independently walking. Using canes would be a very close second and nothing to be ashamed of. We also need to get her to transition herself SAFELY like from the couch onto her canes, in and out of her school chair, etc. We will be here for more than standing her up and letting her walk. I am so confident that we have made the right decision. When they first approached it with me (on the first Friday we were here) my gut reaction is that I was not staying in Michigan for 3 months. I thought 6 weeks was a big enough commitment. I disregarded it at first. On Saturday I told my mom about it(the voice of reason...she was sure to say no) surprise she agreed so I had to "think" about it. At church on Sunday is when the first time she lit a candle to Mary and asked her to help her walk. I looked up at Mary and said OK I am willing if you show the signs. That next night we were at a dinner with our cousins and the Superintendent of Grosse Pointe schools heard about what we were thinking about and agreed to send a teacher to the house everyday to school her and by Tuesday night Jeanie had found us housing...OK Mary I am listening. I have spent the past few weeks trying to iron out details of our lives and start to organize being gone for 4 1/2 months total. We did it so that is why I am finally settled with this decision. Oh by the way, if any one wants to rent an adorable little house on Crown Avenue in La Canada for 3 months please let me know!! I would love to rent it while we are gone.

I continue to ask for your support and prayers for Josie during this time. She needs all the strength she can get. She wants this so badly that I will go to the ends of the earth to help her. Our best, Jenny and Josie

This is the beginning part of the routine. The song is the part in Peter Pan where the croc is coming.
video

Monday, July 20, 2009

"Best day yet" says Przemek

"Best day yet" from Przemek is a huge compliment. He works her hard and praises only when really deserved. After the end of last week and not doing her best during walking, Przemek decided to switch things up a bit to see if he could get more out of her walking. He decided to do massage and then straight into walking followed by the strength training. We were going to do all this today and I wasn't going to watch any of it to see if we could get her best to come out. It worked and worked really well. By putting walking first you aren't dealing with lack of concentration (because usually she has already worked out for 2 hours by this point and let's face it who could still concentrate at that point) and fatigue. Przemek said that she did 2 perfect rounds with the walker and could have kept going. She did 2 rounds with both parallel bars on and 2 perfect rounds with right cane and left parallel bar. He asked Josie after the 2 parallel bars if they could do one cane and one bar and she so agreeably said sure. He was saying that she was so proud of herself she kept hugging him. He was secretly proud that she did this (strong Polish man that doesn't want to be too affected by his patients...can't help it with her!!). He tried to turn on the video camera for me because he said he was sure I wouldn't believe it. He never got it on because he was scared to break the concentration. WAY TO GO JOSIE GIRL!! I will spy from the window tomorrow and post some video. At the end of her session today when I went in to get her she was beaming from ear to ear. She even sat up and reached out to hug Przemek one more time.

I want to give you a taste of how remarkable this center is. Everyone thinks that we came from so far away but really we are one of their closer patients. In the clinic currently are 2 Saudi Arabians, Egyptian, Argentinian, Mexican, Italian, 1 from New York and 1 from Arizona. I don't know everyone during the morning times, but that is amazing. 5 therapist from Columbia will be coming to be trained in this method next month and Izabella spends most of the year traveling internationally to train therapist in their countries. The US better catch on quickly (better yet insurance companies better get on board). You can rehab people in a quarter of the time with this method. It would end up saving money. Susan our PT at Childrens LA says this is the way therapy is moving to. I hope so. In saying that it is remarkably international they also come in herds. This poor little Saudi girl today who is fairly damaged had 8 people standing over her while she was trying to work out mom, dad, grandma, grandpa, 4 siblings. From my understanding this is typical of the Middle Eastern families. Poor Chris the therapist took it all in stride with everyone telling her what to do. That would motivate me to walk or run away. Actually she isn't even close to walking. The Egyptian girl only had 3 people with her today. Hopefully that even decreases. These kids are working so hard I hope the families can really appreciate that. Don't know why I decided to share all that unimportant information. I just find it, well, fascinating??!

We are off to bed and up for Chickadee practice in the morning. The big show is this Saturday on her birthday. Lots of practicing to do before then!! She got to use a nose plug for the first time today and loved it. So funny looking but effective. I will try to get some pictures tomorrow. They want them to wear their hair in 2 pony tails for the show. Hard to get half a head of hair and half a head of wig into 2 pony tails. I will have to get very creative with this...yikes. On that odd note, goodnight and God bless, Jenny and Josie

The Weekend

(left to right) May, Josie and Melissa Madison sailing
Hi All, Sorry for the delay in posts. I was having trouble with the Internet connection. We had a great weekend. Low key Saturday with a walk into the village, mass at 6:00 so we didn't have to go in the morning Sunday. We went to the movie on the lake that the park puts on. We got there, got our chairs and blankets situated (supposed to be the coldest summer day in Detroit history) and just as I sat down it started to sprinkle. At that point I was staying no matter how hard it rained...it poured. 2 Minutes after my "I am not leaving" decision we were packing up and running for the car. Thanks to Sarah Smith for coming back to help me get all our gear out of there. So much for movie on the lake!!

Sunday we slept in which was so nice. The Egers invited us to go out on the boat with them. 2 of their kids, Grady and Madison were in the Regatta that weekend so we were going out on the water to watch them. Josie was so excited to go with her new friends Melissa (from Haiti) and May (from Guatemala). I was happy to spend time with this incredible family. Lory's brother came with is family and her mom and Roger's dad was there as well. Nice family. We had great weather and a good time with all. Thanks Egers for including us. Congratulations to Grady on winning first place in the Regatta and Madison for a great 2 days of racing. Her results aren't in yet because they sail longer then the other fleets. It is impressive what you kids do. We enjoyed watching you and learning a bit about sailing.

That night we went to Roger and Jeanie's for another amazing dinner. Jeanie is the best cook...Roger is great with the barbecue, too! We all enjoyed dinner including Theo. He got 2 rib bones and licked them clean. He was a happy dog. We were all suppose to go over to the Egers for a campfire and s'mores. It started raining so hard and it never let up. Rain check on the campfire.

We are about to leave for therapy. It is raining so hard again we need a boat to get there. Cross you fingers for a good walking week. We really need it. Will post about the days activities tonight.
Love to all, Jenny and Josie






Saturday, July 18, 2009

It's Friday!!

STANDING!!

Josie STANDING and playing at the club




Theo doing what dogs do best!!!!

Josie has officially survived 3 heroic weeks at Pediatric Fitness Center. She worked really hard for Przemek this week. We had a small rough patch with the end walking today but I should give her a break because she has achieved so much in this time. She needs a good weekend off. Przemek is going to reverse some of the order of the workout next week because he needs her concentration to be the best for walking. He will do the massage like always and then go straight into walking before the strength training. It is hard to stay focused as long as she has. I think this will be successful for her.

After therapy we went to the country club with our cousins for family night. We got to see a wonderful tennis exhibition by Luke Donaldson (he won the men's doubles at the French Open last year) and the club pros. Good tennis. Luke played at USC we think when my brother was there. We had an incredible barbecue despite the down pour of rain that hit suddenly. It is unseasonably cold here. Theo the dog even got to come for a while. Josie absolutely loves Theo. Dinner was great and so was the company. Josie was incredible just standing and playing. She was so sturdy and didn't even have the right shoes on to help her. She also did some walking there and I was barely supporting her. It is amazing to see you shift her weight to step. I think it helped that she was showing off for Roger.

We hope everyone is enjoying summer where ever you may be. Love, Jenny and Josie

Wednesday, July 15, 2009

Amazing Wednesday

Happy Girl after a Happy Day!!

We had a really great day all around. Chickadee practice was this morning. She is really starting to get the routine. It has made her a stronger swimmer for sure. Good long hour and a half nap before going to therapy which helped with the strength for her workout. Josie had 2 terrific rounds on the walker today and 3 award winning cane rounds. The repatterning from the brain to muscles is really starting to emerge. It is amazing to see the result even though they are small changes right now. Przemek had her do 3 rounds of right cane and left parallel bar and then onto right parallel bar left cane. This is more difficult but I was impressed that she was able to do as much as she could. She was very pleased with herself today as well.

After therapy tonight we went to Samantha Savage's 8th birthday at The Little Club. Darling club on the lake. It was Splash Bash so it was a big swim party. Josie was so happy to be included. She swam with the kids and I didn't even have to get in the water...of course I didn't take my eyes off of her and I think we made the lifeguard a tad nervous!!! She was proud to be so independent. There was a DJ that had the kids dancing on the deck which of course she had to participate in. They even put live goldfish in the kiddie pool and you had to catch one with your cup to keep it. We will be lucky if our makes it until tomorrow morning. Very cute activity and all the kids were delighted to take a fish home. Thanks Savages for having us!!

While we were at the party I got to meet an amazing family, the Egers. They have 3 home grown kids and 2 heart grown, one 6 year old girl from Guatemala and one 6 year old girl from Haiti. Melissa from Haiti was brought here to Michigan by Healing the Children. That is the same organization that brought Josie and Teresa. We used to be Healing the Children and we split from them 3 years ago and became Mending Kids International. Melissa can't walk either but is as mentally sharp as Josie. It was beyond amazing to meet another mother that is going through virtually the same thing I am. I can't wait to spend more time with them. What a great family.

To who ever is reading this, thanks. We love the support.

Sorry family that we are missing Matt's 2nd birthday in Newport today. Our hearts are with you all. Jenny and Josie

Happy 2nd Birthday Matthew!!!

Happy Birthday Matt!! We love you so much.

video

Tuesday, July 14, 2009

Old Granny

The Flip Flops
Flip Flop making

Some of the Chickadees

Today Josie exclaimed with her canes that she was an old granny. Last week she was a grandpa. Love that she laughs at herself. I have to tell you a quick story about her. One Sunday about 2 months ago we were walking up to communion at church and Josie was watching intently the lady in the next isle. The lady was a very elderly woman with a walker. Josie looks up at me and says, Mom I could beat her in my walker (like it was some kind of race!) I love that she was sizing up the competition.
Josie had another strong day at therapy. Walking with the walker is getting so much smoother. I will add a short clip. Her legs were so fatigued by canes today that it was not her best session with that. Our goal of 2 canes by Wednesday will have to be delayed. It was a bit lofty anyway. She did ask Aunt Steph to pick her up at the airport when we come home in August so she can walk off the plane to her with her canes. Glad to know what goal she has in mind.

The exciting part of the day for her was the Chickadee lunch and flip flop decorating party at the club house at the park. All the girls in the entire program have this special event together. The girls have really welcomed her. The girls get to wear their flip flops to the big practices before the show and the day of. As most of you know, Josie has been in leg braces her whole life and never really worn a "regular" pair of shoes. In the past month she got to buy her first pair of non orthopedic sandals (not to be worn daily) and now flip flops (hopefully to be worn only 3 days!!). She is officially out of leg braces for the time being. They are confident that they can strengthen her enough that she will never have to go back to them..please I hope they are right. For now she will wear orthopedic shoes from Poland that don't look orthopedic. OK, back to the Chickadees. I will attach a few pictures.

Happy Birthday Camilla Hartman. Hope it is a great one!!

Love to all, Jenny and Josie

video

Monday, July 13, 2009

Monday - Week 3

We made it through Monday of week 3. Josie worked very hard during her strength training (2 hours) today. I ran down the street and had my teeth cleaned. I can't ever find time at home to do it so I did it here...random, I know. I got back for walking today. Josie was on round one when I got there and starting to fall apart when I came in. She hasn't done this yet, but it is a typical reaction in the past years. I thought the honeymoon was over and she was going to fight this to the end. Miraculously, she not only pulled it back together she did the best cane walking and concentrating up to this point. When I say I can't believe it I really mean it. The concentration and effort for the next 40 minutes of grueling walking with canes and parallel bars was amazing. She never stops shocking me. I should have grabbed the camera, but I was to fearful to move and break that concentration. Right now Przemek has her using the right cane and holding the left parallel bar. Tomorrow his will switch that so she can begin to manipulate the left cane. This will be trickier because of the left arm and hand weakness. He is confident that she will conquer this task. His goal is by Wednesday to have her off the parallel bars and only on canes. Lofty goal but let's shoot for it. Her prayer to Mary this week at church was to walk with canes. With Mary's assistance anything is possible.

In a nut shell, the purpose of all the daily repetition is to retrain and reparteeing the brain. Basically the signals are not connecting properly from the brain to the muscles causing an increase of tone. There is a great possibility to retraining the muscles and brain pattern. They have to strengthen the weak parts to overcome the brain's signals. There is also a window of opportunity in which this needs to be done for it to be the most effective, It is hard to break habits so correct training needs to happen from the beginning. That is a very rough explanation and when Susan Knight(her CHLA PT) returns from Italy I will get you a better explanation.

Josie also had Chickadee practice today. She and all the girls are actually getting better at the synchronized swimming routine. So cute. I will try to get some video of them at Wednesday's practice.

I want to let the Donahue family that our prayers are with them. I am so sorry for your loss of Terry's father, Doc. What a wonderful Man, Father, and Grandfather. My love to you all during this difficult time and always!

Love to all, Jenny and Josie

Hi to Luke

This is a short video hello to Luke, Josie's cousin. They are missing each other a lot and he can't stop watching the video of her swimming. So here is another one for Luke to watch. Hope this helps Steph!!
video

Saturday, July 11, 2009

Happy Saturday

Josie happily floating and then waving **notice the standing!!

What an absolutely perfect weather day we had today. Breeze blowing, 80 degrees. Wow we are lucky. Josie had a private synchronized swim lesson with Miss Colleen at noon. We swam for another hour after that. Had lunch, a summer nap with the windows open and the breeze blowing. We went and visited the Savages a couple streets over. They have 4 amazing girls that Josie really likes to be with. We walked back over to Jeanie and Roger's for a delicious tuna dinner. Thanks for having us. I love this town. It is so cute and quaint and walkable. I could spend hours just wandering the streets that are tree lined with beautiful houses. Attached is a video of Josie swimming (not synchronized). She is so happy in the pool. Miss you all. Bueno Sera. Jenny and Josie

video

Friday, July 10, 2009

Week 2 done

I can't believe we have already been here 2 weeks. It is going so quickly. Josie finished the week in style and strength. After yesterday's trails with the car and not getting her a proper dinner, swim and bed time I was worried about today's session. I try my hardest to keep her ready to use everything she's got for every session. I go the extra mile to feed her with the foods that will help the body the most, get her the right amount of sleep, keep stress to a minimum, happiness to a maximum and I feel like being stranded for 5 hours and dinner at Daily Queen with an ice cream chaser was probably not the best for her...guess what, she survived and with flying colors. You can't even imagine the fatigue that her body goes through everyday and then recovers for the next. She had an incredibly strong day. Her strength training has increased, her indurance is incredible and her concentration is still spot on. The focus is amazing. She did 2 independent walker rounds of walking today. Przemek didn't have to touch her or the walker once in 2 rounds. She is completely weight shifting and keeping her balance. The flew through the parallel bars. At one point Przemek was teasing her and telling her to wait her him because she was getting so fast. She thinks he is so funny when he says that. She even got through an incredible first round with one cane and one parallel bar. Jen Loiselle (her CHLA OT) will be so pleased with the increased strength and ability of the left hand.

I have received some really supportive emails lately and I can't tell you how grateful I am for those. The support is wonderful. My friend, Moinca Fitzhugh, summed up Josie really well today. She said "Josie has the strength of a giant, courage of a warrior and the spirit of an angel." Mono I can't agree more. (Don't be surprised when I put that at the top of her blog!!)

My best to all. Good night and God Bless. Jenny and Josie

Thursday, July 9, 2009

Interesting and exciting day

Josie and Przemek
Hi All - we have had a very interesting day. First off the most exciting news is that Josie worked on the parallel bars again today. Today she used one CANE and one parallel bar. I will post video at the end of today's message so you can see the first time she ever did this. She was so brave about it. Funny Josie quote -when she was about to start her third round of one cane and one parallel bar she picks up her cane, shakes it a bit and says look mom, I am like an old man with a cane. She finds the humor in this. She still doesn't think she has a disability...no one tell her!!


After a really good Thursday at therapy (usually a tough day for her from the intensity and fatigue) our rental car wouldn't start. Long story short we got home after 5 hours so waiting for a new car to be delivered to us. On a good note, we meet some really nice people. The first tow truck guy, Joe, stayed over an hour with us dealing directly with Budget and then making sure we were OK. He even gave me his cell number in case it started getting dark and they weren't here yet with our car. He said he and his wife would come back to wait with us. Then the only place that was around was dairy queen. Josie entertained everyone there for an hour and even had another couple wait with us. Izabella, one of the therapists who we got ahold of was heading down to be with us until the car arrived. Everyone was so helpful and kind. The rental company originally was going to send a tow truck for us and the car. I was not about to get in a tow truck with Josie and head to the airport with a man I didn't know. I somehow talked them into bringing us a car. Interesting day. Lesson of the day for us...patience. By the grace of God we actually had some today. Good night. Jen and Jos


PS. Chickaddes was this morning so Josie was happy all day. Cute.

video

Wednesday, July 8, 2009


Josie started her day with Chickadee synchro swim practice. They are so cute so serious practicing their routine. One little girl, Katie, said to Josie why can't you walk? Josie said because I had surgery when I was a baby. Katie said OK, let's swim. Kids are amazing. Just give them an explanation and that is good enough.

After swimming and a big breakfast, Josie took a hour nap before her therapy. I can't have her too tired to workout or her synchronized swimming will have to give. The swimming actually helped loosen her up for her workout. Brilliant.


She worked really hard again today. The first 2 rounds of walking Przemek didn't touch her or the walker. She independently walked with the walker. Let me clarify something for those of you who know she walks in her walker at home. The home walker has a support around her waist so she can't fall and hit her head. It also doesn't require her to properly use her legs. She can get more on top of her arms and "pedal" her feet. This Polish walker that she is using here has no support and she has to properly weight shift and maintain balance in order to make it move and without falling. It is like going from a tricycle to a 2 wheel bike. In her case it might feel like a unicycle. I will add some video to show you the walking with the walker. She also is using the parallel bars to walk. This is great preparation for cane walking. It requires the same rhythm that she will use when she gets to her canes. She will need sometime on here to train her left hand and arm. The right it great already but that arm doesn't have the muscle damage either. She even started a new balance exercise today. It was the end of the session and she was beginning to fall apart so they will have to resume again tomorrow. She is very scared of balancing. She is old enough to know that she can not fall therefore scared to be out of control. Przemek will increase the confidence and quickly. He will have to work on me too. I even asked one time today during walking if he could get her if she went over.(he felt so far away) He assured me that he could and also that she is strong enough to maintain and correct her posture. This therapy moves so fast and she gets better so fast it always catches me off guard. I have to move my thinking as fast as she is accomplishing.

My love to all and to all that endure my long winded posts. It is so technical that I could write forever the details. Will just try to keep it to the main points. Ciao for now...Jenny and Josie

video video

Monday, July 6, 2009

Survival of the Fittest

Survival of the fittest should be the title to every blog that is written while Josie is in intensive therapy. I can almost guarantee that I would not survive. Ok, so she did it with style today on her 1st workout this year with Przemek (pronounced Shemag). You can't imagine the guts, strength and sheer concentration he expects. In saying that he is brilliant at what he does and knows how to get the results that we are here for. He was very impressed with her commitment level this year. When I came back for the walking portion he quickly announced that he was in the immediate process of prepping her to walk with canes!! He thinks she can do it and that we will almost graduate from the walker. I love the potential he sees in her. (of course we see it too, we just don't know how to unlock the magic. Hence the long stay in Michigan). She even made it through the session without tears. Determined. She was very proud of herself as well. She did stop a few minutes early today because she worked so hard her legs literally couldn't hold her up anymore and she has strong legs.

After therapy today we meet the cousins for a dinner at the Rotary meeting. We meet some lovely people. One lady asked if she could give Josie a grandma hug and Josie said yes because she misses her hugs from Grandma Carol and Grandma Ellie. Sweet. She of course entertained anyone who would listen. A great thing happened there. I was feeling so badly for missing my Mending Kids board meeting today. Low and behold we sat at the table with the divisional chairperson for Rotary International and also the people in charge of the Grosse Pointe chapter and they asked Josie and I to speak about her story and Mending Kids. So everyone at MKI I hope that makes up for my absence today at the meeting!!! I miss you all and am proud to share about the children from all over the world that we are so blessed to help. We are lucky to be in their lives. Thank you to my cousins Roger and Jeannie for helping facilitate.

Love to hear about how and what everyone else is doing. I feel so out of touch and self centered on our endeavors at the moment. If you have time, please drop a quick email or comment at the end of the blog. It makes it feel not so far away. (Josie really does like reading them) Happy summer days to all. Jenny and Josie

Video of Josie walking with Sylvia - Day 3
video

Sunday, July 5, 2009

Happy 4th and 5th of July

Josie enjoying the Country Club pool.

Happy Birthday Uncle Mike!! I know you have been busy in Vegas, but hopefully you have been able to celebrate a bit. We are sorry we aren't home to celebrate with you.

Happy 4th of July to all. We had a wonderful weekend. Yesterday we had lunch on the patio with Jeanie at her house. We had a good time with their dog Theo. Congrats to Roger for his second hole in one!! Impressive. We also swam yesterday despite the fact that the sun really never came out. Today we went to church in the morning. It is a beautiful church on the lake. It is actually the same one that my Grandfather Fletcher Hull grew up in. Neat to go to his same parish. We got to go to the Country Club of Detroit with Jeanie and Roger to swim. We also saw their good friends, Nancy and John Donnelly which is always a treat. It is always a amazing to visit their club. It truly defines the old meaning of country club. We also got to return to it tonight for a wonderful dinner on the patio with Aunt Harriet, Roger and Jeanie. It was the perfect temperature outside and the food and company were wonderful.

Josie is fast asleep hopefully preparing for her week ahead. It will be intense, but I'm sure rewarding. Now is the time it gets more exciting to see the progress. She it a candle after church today under the statue of Mary. When I asked her what she lit it for she said "of course my sister but also that Mary will help me walk." I can't think of a better mother to ask that of. Please Mary hear her prayer. By the way, every time she lights a candle in church it is always for her sister. We miss you Teresa. Stay strong and healthy. Miss Silvia misses you too and hopes to get to California to see you.

We miss you all. Lots of love, Jenny and Josie



Friday, July 3, 2009

1 Week Down

Good evening. First of all Josie wants me to thank Scott Gordon for his comment on the blog. (There are so many that have written, Scott just happens to the last she heard and so it is the one that she remembers. No offense to anyone. We love the comments. They are so supportive) She wants to put a note into this in her words... I am doing well and hope everyone is having a fun summer. thank you to everybody (hiccup) I love your messages and have a good day. I love everybody. I miss you Dukey(Luke, her cousin) and Cousin Matt.

Now in Jenny's words...What can I say after that. Just when I think she doesn't get it she has this great outpouring of gratitude. She finished her first week. I can't tell you how impressed I am with her. I can't even describe what she is really going through not to mention with determination, cooperation and strength. We have already seen great progress and it has been 5 days. During her walking time today, Przemek pronounced Shemag (her trainer for the next 3 weeks) came in to see what level she was at. He will be prepared for what to do next week. I will not lie, the next 3 weeks will be gruelling. Sylvia works her incredibly hard but there is a tad more tollerance to talking. Przemek will need to really get to the grunt work to make even more progress requiring all her attention and focus. This is the challenging part for Josie because as we all know she likes to talk.

We got to do a bit of shopping after her work out and dinner at PF Changs. It is a treat to change up the routine a bit. We are hoping we get to see the sun tomorrow. It has been a cool week. We will spend most of the day at the pool and will go to the lake to see the fireworks at night. Our house is only a block up from the lake so it is really convenient. We will check in tomorrow. Have a happy and safe 4th of July. Grams and Gramps, I can't believe we aren't with you tomorrow. Gramps, we will have to save some fireworks for the Delta. Best to all. Jenny

Chickadees

Hi All - Sorry I didn't post last night, I fell asleep with Josie and we just woke up 11 hours later..Yeah.

Josie had her first synchro swim practice yesterday. Her group is called the Chickadees because they are the youngest group. The night before practice she woke up 4 times asking if we could go yet. I can't tell you how excited she is to part of the team. We watched for a while when we got there to learn the routine. I was so correct in saying that they are flailing in the water...so cute. I just giggled the whole time. The girls coaching are so sweet and make Josie feel so welcome. Josie then got in the water and did it with them. They have been practicing for 2 weeks already and she will learn this by the end of the weekend. So cute. I am more delighted in watching her feel so included and apart of a team. Miss Colleen is going to practice with her privately. I will post video and pictures.

She had a good day 4 at therapy. The muscles where a bit fatigued yesterday from so many days in a row, but she pushed through it and got everything accomplished. Amazing girl. Sylvia was telling me that the most important area for her walking is her pelvis and glut strength. They will concentrate really hard on strengthening those areas. I was also asking about her balance issue. I am worried that no matter how hard we work on strengthening her she has this balance issue that could still prevent her from independently walking. Silvia was telling me that they can retrain and overcome the balance problem that is coming from the brain. They will work a ton on the balance board and retrain the brain to compensate for the brain damage .

We better get ready to go to therapy. Will update tonight. I can't believe we are almost done with 1 week. She deserves and needs a good break this weekend. She starts with Shemag (Sylvia's husband) as her trainer next week for 3 weeks...good luck, he is sooooo tough. She does love him and know that he can really help her. I would cry! She is way tougher then I am. Ciao, Jenny

Wednesday, July 1, 2009

Day 3 and the Knees are up

Hello - You are all probably wondering why the title says knees up? When Josie walks she usually swings her straight legs around with her hips instead of lifting her knees. After 3 days she is totally initiating her knees up instead of swinging. We were all so excited especially her. Her comment was that now she won't make so much noise with her shoes dragging along the ground. Bless her heart. I delight in the small things that she accomplishes everyday during this therapy. It is like warp speed. Her therapist have also decided to keep her (leg) braces off. They feel like if they can strengthen and train the proper muscles and tendons then she will walk correctly without the assistance of devices. We have been pulling our hair out at home with our orthopedic doctor, Dr. Kay, our orthopedists Jeff and Susie from Orthopliance Group, our physical therapist, Susan Knight, and the head of the gait lab, Susan at Childrens Hospital LA (CHLA) trying to figure out if the braces were making her right foot turn in or where it was coming from. She has had her Polish orthopedic shoes on her without braces and has initiated the best steps I have ever seen from her. I hope I'm not making everyone at CHLA quake in their boots!!! On another exiting note she is up to 50 sit ups on her own. She needs so much core strength to hold up the torso and overcome that tone issue.

They are really working on the mobility of her left hand and arm. As most of you know she has very limited use and control of this hand. We are assuming that it was damaged by a stroke during separation surgery or damaged at least during that time. I will have to ask Dr. Lazareff if he knows. Anyhow, it will be great to get some more use from it. Jen Loiselle, her Occupational therapist extraordinaire at CHLA will be jumping with joy from that!

It is pouring down rain her tonight so we didn't get to swim. As a result it took her forever to fall asleep. She needs that extra movement in the pool to relax those muscles. She is so excited (beyond excited) to start her synchronized swimming class tomorrow. My mom and I are getting such a good chuckle over this. The good part is that all the little girls will be flailing around the pool with the appearance of drowning so this might be the one place we look like we belong!! The performance is on her birthday, July 25 and I promise to take video and post it. I'm sure with tech support and 3 weeks to learn how to do that I will be able to!

I have to send a special thanks to our amazing therapists at home. Susan Knight (who happens to be in Italy right now, lucky girl), Jen Loiselle both from CHLA and Liz Bunkell in Santa Clarita for all their incredible work they did with Josie this year. Without them we won't be as strong or in such a great mindset to be able to tackle this. You guys are the best with her. Thank you a million times. We miss you a lot. ( I can guarantee the halls of the 4th floor Orthopedics at CHLA will be a lot quieter for 6 weeks. Rosalia might get some work done in peace!!)

We miss all of you and it is hard to be gone so long, but I know this is the right thing for Josie. Our window of opportunity is closing so we have to strike when the iron is still hot. We are both ready to fight the good fight. Thank goodness for our relatives here in Grosse Point, Jeanie, Roger and Aunt Harriet. It is reasurring to have them right around the corner. My love to all. Good night. Jenny