Josie

The Early Show on CBS Monday morning

2011-08-07T23:40:00.000-07:00

FYI...The girls story will be on The Early Show on CBS tomorrow morning between 7 and 9 AM. I will try to post the link after it runs if you miss it.

I know I have A LOT to post from the past few days. Most of you have seen all over the news what we have been up to the past few days...what a whilrwind but fun.

Love, Jenny and Josie

Happy 10th Birthday to our Beautiful Girls!!

2011-07-25T21:27:00.000-07:00

July 25, 2011
It is a major milestone in Josie and Teresa's life today turning 10 years old. Looking back on the decade since there birth I would go out on a limb and say that they have conquered some pretty tough stuff and are still smiling today. Girls, you teach us everyday about the joy of life. Your spirits are infectious in there own unique ways. You make all of us around you strive to be better people. I know we are better by knowing you both. We can't begin to express how much we all love you. From Lety and Wencelao who brought you into this world and did the right thing for you both to the Cajas and myself who continue you to love you like you were born from us, we all are grateful for making us a very unique, but complete family. It is a glorious day today. We give thanks and praise for every moment we are given with you both. I hope all your wishes come true. Happy 10th Birthday to our dear girls!!Love, The Alvarezs, the Cajas's and Mommy Jenny

We couldn't celebrate together with Teresa today since we are still in Michigan and look forward the 6th when we do. Josie was incredibly lucky to celebrate with our very dear friends here in Michigan. We went to the Egers with the Livingstons and Clutterbucks for a great party. We are so incredibly fortunate to have these amazing families in our lives. Sometimes I wonder how we got so lucky to have landed in this special place in MI. We did and we are eternally grateful for our time here and our friends and extended family here. Thanks everyone for making Josie's birthday so great. We will miss you all terribly, Jenny and Josie

Swim Chicks!!!

2011-07-24T20:38:00.000-07:00

Banner in Front of the Farms Park

My Swim Chick before the show. She adorable and the braves chick I know...Go, my girl Go!!

Campbelle and Josie...swim buddies for the past 3 years.

Swim Chicks Banner in front of the Farms Park

Eva's little girls group. She had the youngest ones and they were so cute.

Group picture with the coaches

Swim Chicks Team

Her buddies

After the show

Josie's cheer squad...you guys are the greatest friends. You come to support Josie even though it had to be 100 degress, 100% humidity, slight rain and in the sun. We love you for it. You make her so happy.

Josie's group getting ready to perform their closing number

Every year the coaches make each girl a paper plate award and hand them out one by one with stories of each girl. This is enjoyed by all.

Waiting for the much anticipated and beloved paper plate awards. Each coach makes them for her girls. They are adorable.

She got her awards

and the award goes to...our "Read, Set, Go girl" since she was always ready to practice and knew what to do and where to be everytime and also the "Lil Miss Sunshine" award for be such a great light to everyone.

So, the best day in Josie's life was here today...her Swim Chicks performance. This is hands down her favorite thing she does in her life. It is such a treat to see her have so much excitement for something that she can do on her own. All the girls had so much fun through the whole process. The coaches are amazing with them and build up their confidence. I wish we could find something like this in California. So I hope you enjoyed the pictures and could witness the joy of this sweet little 9 year old (9 for one more day and 10 tomorrow). She is having a great 2 days. Swim Chicks today and her 10th birthday tomorrow. Thanks for checking in on us. Jenny and Swim Chick, Josie

Swim Chicks Rehearsal and a whole lot of posts

2011-07-23T15:21:00.000-07:00

OK so I just posted quite a few times today so keep reading down through the old entries...sorry.

Anyway, Josie's big rehearsal for the show was this morning. The girls were really excited and did incredibly well. You are never quite sure if they will pull this off or not, I mean the little girls, and by golly they do every year. Simply amazing. Josie loves being a part of this wonderful program. Everyone is so kind to her. It will be one of the very few team sports that she will be able to participate in. She loves the camaraderie of the group and how they support each other. Cutest thing happened today...one of the little girls in Josie's group who has been with us at practice everyday for 3 weeks finally noticed something different about her. Back track for just a second, in Maggie's defense she only sees Josie in the water never out. So today the team got out to have a donut break in between their 4 hour practice. I put Josie in her stander to take her out. It was the first time that Maggie noticed that she couldn't walk. She was so cute and says, "wow, what happened to Josie?" So I told her the story and once again the reaction was, "oh, ok. Let's go Josie we need to get back into the pool for practice." If the whole world could be kind and childlike we might have peace. So sweet and kind.

So Chicks is going great. I will post after the show so you can see her in action.

Happy many posts reading to you all.

Jenny and Josie

PS. Keep praying hard for my Uncle Steve. He has completed a miraculous 2 rounds of wrenching chemo. He has one more before the scan to let us know if it is working. He and my dear Aunt, Justine, could use many extra prayers right now. We are proud of the battle they are fighting so heroically. Go Team Noonan!!!

Visit with Alex and Anastasia from Canada

2011-07-23T15:14:00.000-07:00

Stasia and Alex, our buddies that live across the river from us in Canada came to visit one night. Alex and Josie have gone to the same therapy center together for a few years. Josie just adores Alex and visa versa. They had fun showing off their standing tricks to each other. Alex amazed us when he walked across the whole room without any assistance...way to go Alex!!! You can't believe how hard these kids have to work to achieve even the smallest goals. We are so proud that Alex has achieved such an enormous one. We look forward to seeing you guys again soon. Jenny and Josie

Dinner with the Tokarskis..minus Max

2011-07-23T15:06:00.000-07:00

We had so much fun having dinner with Przemek and Sylwia at there house. Unfortunately for us Max is in Poland visiting his relatives. I am sure he is having a blast, but we miss him. Anyway, Josie and I just love Przemek's polish meals. He is such an awesome cook. Josie was elated to have his mushrooms. I couldn't get her to eat those if I paid her, but Przemek is the magic mushroom maker obviously. We just enjoyed being together, talking and laughing. Zoya, the dog, wowed us with her tricks. Josie thought that was so cool. She is a cute little French bulldog. Thanks Tokarskis for having us. We miss you all so much when we are in California!! Jenny and Josie

Off to Mayberry!!

2011-07-23T14:45:00.000-07:00

After we left Ronald McDonald House we moved back over to our favorite house, Aunt Harriet's on Cloverly. We are so grateful to be able to stay here once again. Thank you Aunt Harriet and Jeanie for making it possible. We are missing not having Harriet here with us, but know she is recovering in the right place so she can move back home and be able to travel to her favorite place, up north.

We quickly got back into the swing of things with all our dear friends here. Josie wasted no time at all getting back to the the Little Club for more swimming. It is such a treat to be able to be members there even if it is for just a short time more.

Josie and Reggie also got back into there rock star routine with band practice at the Livingston's one night. We had a great barbecue there and then doing s'mores around the fire that night with the neighbors. It helps that the sun stays up until 10 PM. More time for playing!

Swim Chicks practice started as soon as be got back. Josie is so happy to be in her 3rd year with the team. It is such an incredible program and one of the great joys in her life. The show will be the day before her 10th birthday. I will post a lot of pictures and video after the show.

It is weird to be staying for such a short time. We are so used to staying for months. We are grateful for whatever time we get here. It is our Mayberry. Jenny and Josie

Ronald McDonald House Detroit, Michigan

2011-07-23T14:15:00.001-07:00

We are back in Michigan for a quick "tune up". Our adventure started out staying at the Ronald McDonald House in Detroit right next to Detroit Children's Hospital. We were grateful to get a room there. We had a humbling and wonderful experience there meeting so many families. It was a difficult setting but so many had such great hope and faith. We met an brave woman named Donna. Her twin boys were born 9 days before we got there at 25 weeks. Sadly, one of them only lived on earth for 2 days. She was having to grieve for one and put all of the rest of her strength into keeping focused on Gabriel. I felt blessed to have known such a courageous mom. Happy to report that when we returned 2 weeks later to cook lunch for everyone, we got to see Donna and find out the sweet Gabriel was still fighting hard. He was up to 2 lbs 7 oz and was being taken off the breathing tube to breath on his own. They have a long road ahead since his due date was October 8th, but he has a mom who loves him so much. Stay strong Donna, my friend. We met so many with extraordinary stories. I actually had a lot of guilt that we were on the recovery road. These families have such a fight in front of them. I am thankful that (hopefully) most of that is behind us. I know we still have things to do, but it makes it easier to take when Josie is doing so well. Thank you Ronald McDonald House for taking care of us for a few days. It will be an experience that we will never forget and will be grateful for the time we got to spend there. Jenny and Josie

Father's Day Weekend in Tahoe

2011-07-23T13:47:00.000-07:00

Father's Day weekend at Martis Camp in Tahoe with Brian, Michele, Matt and Trent was magical. We had such incredible weather and better company. Josie had a ball with the boys. It was none stop fun. Matt, Josie and I went bowling at the barn. Upstairs in the barn there is an amazing art loft. Josie and Matt enjoyed doing their art work. We went all over Martis Camp one day. The new facilities are unbelievable. We also went to Father's Day brunch at Sunnyside by boat. It is always great to be on the water. Josie loves the water more than anything. Thanks Brian and Michele for having us. We love you all so much and miss not being together. We hope to return there when we get back from Michigan. Love, Jenny and Josie

9 Years and 4 Years

2011-06-07T22:33:00.000-07:00

My angel, Cris Embleton, whom we are eternally grateful to for making it possible for the girls to come here. We love you Grandma Cris!!

What a celebratory day it is in our family. Josie and Teresa arrived conjoined at the head from Guatemala 9 years ago today. I never in my wildest dreams knew how much my life would change for the better when that plane touched down at Burbank airport and I was able to set my eyes, heart and hands on them for the first time. What a pleasure it has been to love these girls so much and to be surrounded by their greatness.

Happy 4th Birthday to my sweetest nephew, Luke Michael Richards. You are are bubbly, fun and energetic 4 year old!! You bring so much excitement and joy to our lives. It was another blessing that you also arrived in our lives on June 7th.

Look at how hard they hare laughing!! What joy these two have together.

Because they say things come in 3's, June 7th 8 years ago we got Josie out of the hospital after they returned to LA from Guatemala. This is the moment that she launched into my life for good. We Love June 7th!!! Thank you God for the blessings of this day and everyday. Love, Jenny and Josie

Adorable video of the girls laughing together. I thought Teresa was going to start belly laughing when Josie was doing this. I love these moments.

Doing well

2011-06-01T21:20:00.000-07:00

Josie has been doing so well. She wanted me to write on her blog that she is doing really well in school. She is learning so much and loves to be with her friends. She is such a little peacekeeper. It is great to see the other kids embrace all of her abilities and adapt to her disabilities.

Tonight we went to Party City to get some supplies for her Girl Scout camp out on Friday night. I missed a great opportunity for a photo op. She was in her stander, glasses on, pink purse over her shoulder and her red super hero cap around her neck. Priceless.

She has been using her Polish walker with Joy at PE and really increasing her distance. She will be running with it soon, I hope. Thanks for checking in. Love, Jenny and Josie

This is dictated by Josie...PS. She loves school. The End.

Catching Up

2011-05-30T21:36:00.001-07:00

Just to do a quick catch up on our lives...

My adorable Brownie troop did their bridging to become Girl Scouts. They are the cutest troop. We started in kindergarten as Daisys and then brownies and now girl scouts. The 7 in our troop have been together since kindergarten and we have such a good time together.

Here I took them to see the taping of Price is Right thanks to my brother-in-law, Mike, who is the executive producer. They normally don't let kids under 16 to come, but Mike made an exception for his niece, Josie. I renamed it as "take your niece to work day". The girls were so excited and extremely well mannered. They got to sit on set while they did the rehearsal. They loved standing on the side of the stage when they loaded the audience in. It was like a huge party with music and the crowd going wild. The girls were waving and dancing. Just before they started taping, we went backstage to watch from the green room. There they met Drew Carey and George, the new announcer. The girls thought they were big stuff to be sitting backstage. They are too young to be in the audience while they tape. The models were coming back to dance with them in the room. Afterwards they got to go back on stage and be with Mike and the models. It was so cute to watch them. Funny story... as we were driving home from the show we were talking about it and what fun things they wanted to do next year. I mentioned that maybe we should go camping. Here I think I am being so big and brave to camp with all of them and especially Josie. I mention this and at first they all thought that sounded really great. Then one of them says, "hey Jenny, do you think we could take and RV?" Seriously??!! I have to admit I do like their thinking. Now can you see me rolling down the highway with a huge RV and 7 nine year olds in back to go camping? A few seconds later one of them said, "maybe we should just go to your desert house instead." You have got to love my troop. They are smart enough to know that the best idea is comfort. Love them!

A little update on the walking front...We got to Liz's for therapy a couple of weeks ago and as we were coming into the room Liz was setting up the table for Josie. There in from of us was one of her old Polish walkers that she first used before canes. I set her down and put her hands on the walker so she could stand there until Liz was ready. All of a sudden she went darting across the room all by herself. So so the next 45 minutes she walked all over the clinic by herself. It was so amazing to see the joy and realization of complete independence come over her. So we became indian givers and took the walker right back. She now asks to walk. In fact today she walked in and out of the country club for lunch. She walked in Sport Chalet the other day and obviously is using it all over the house. She is still using the canes because we absolutely have to keep those up too. Fun to watch her enjoying walking.

Friday was Have lunch with your Kid Day at school. Luke got to come with me, which he loved. We had a picnic with a few of Josie's friends and her most wonderful aide Mrs. G. Mrs. G is beyond fabulous with Josie. They love to be together and I have peace of mind knowing she is safe with Mrs. G. All the kids love Mrs. G as well.

We have been to the desert a for couple weekends now. The weather has been great and so much fun to swim. Josie is in heaven out there. She even got to have a play date with her friends Sofia who has a house down the street from us.

We have been busy, but happy and Josie has been really healthy, thanks be to God. We do need some prayers though for 2 of my uncles. My dad's baby brother Greg was diagnosed 2 weeks ago with Multiple Myloma. My mom's brother Steve was diagnosed on Friday with Melanoma that has metastasised. Please keep both of them and all our families in your prayers. We know that prayers work. We have witnessed miracles. We are asking for 2 more.

Thanks for checking in with us. We are gratefully always for every one's support. It makes this journey such a special one. Cheers, Jenny and Josie

PS. Too tired to proof read this, so my apologies now for misused and/or misspelled words!! Night.

Good Day LA

2011-05-03T21:06:00.000-07:00

This is just a little press release about an interview that Josie and I are doing tomorrow.
I will try to post it on here after we are done...if it turns out ok!!

Mending Kids story told on Fox 11 Good Day LA

Almost 10 years ago, Josie was born as a conjoined twin and was successfully separated by a huge team of surgeons at UCLA Medical Center. Tune in tomorrow between 8:00am - 10:00am to Fox 11 Good Day LA morning show to watch a wonderful interview with Jenny & Josie Hull and hear more about their incredible story.

Back at it

2011-04-28T21:35:00.000-07:00

Josie was back in action today at therapy. Liz and she worked really well..as they do. We have just had to focus for so many months on walking for the runway that we had to push aside some other important components that now we can get back to. Jos's legs were like spaghetti at the end of her session. She was actually joyful in the car about this on the way home commenting that she worked so hard her legs couldn't stand any more. Good to watch her be proud of her hard work. She does know that it works.

She has been so much fun and so playful lately. We have had a great time laughing and being together. We usually do, she is just older and able to have more sophisticated conversations.

Cute story...Every morning when I drop her off at school, as I pull away I roll down the window and she yells at me good bye and I love you and I yell back and this goes on until she is out of ear shot. So cute. Well today I had a meeting to attend after I dropped her and she knew that is where I was going. As I rolled down the window I hear her usual, "hey mom". Today she pumps her fist in the air and shouts, "Mom, go make us some money!!" She just cracks me up. Always thinking that little one. Off to bed we go so we can tackle Friday tomorrow. Happy spring day to all. Jenny and Josie

The Lord's Supper

2011-04-21T22:16:00.001-07:00

As we enter the last of days of Holy week, we get to remember and celebrate the Lord's Last Supper. Tonight is Josie's favorite church event of the whole year. It is tho night that the priest does the washing of the feet as Jesus did to his disciple's at the Last Supper. This important ritual for us started about 5 or 6 years ago. All the parishioners can go into these certain lines in church and the person in front of them washes their feet and then they do the next person, etc. Well, Josie want to do this and was the first one in the line. Back up a sec, let me set the stage for her to get prepared to get her feet washed. This was back in the day where she had huge leg braces on with A LOT of velcro. Just as the church gets completely quite, she decided to start the removal process of all of her shoe paraphernalia. Rip went one piece of velcro after the next. It was so loud yet she was so excited. She went prancing up to participate. The most wonderful thing is that the person who's feet she washed was Margaret Mortimore, her very first physical therapist. Do you know who we got Margaret?? The first Sunday I had Josie we went to church. After church, Margaret, who I had never met before, approached us and told us she was a pediatric physical therapist and she would love to help us out. Well, she did beyond words. She took us under her wing and guided us to where we needed to be. She worked with both girls for a very long time. We give her all the credit for getting us to Children's Hospital Los Angeles, to the best care we could ever have hoped to receive and more specifically to the orthopedic surgeons and the rehab department. Margaret's friendship and guidance has blessed us in so many ways and this all started by a kind stranger that happened to be sitting in church with us one day. We are eternally grateful to Margaret and she is truly a gift from God. So fast forwarding to the first washing of the feet, it was extra special that Josie was the one that washed Margaret's feet. The event was moving that after the ritual concluded the priest actually commented to the whole church on it. We have continued this tradition with Margaret every year since. It is a special and glorious night.

Tonight Josie just beemed as she sat up on the alter with Margaret once again by her side. We so blessed in so many ways by so many people.

I wish all of you the best as we enter the Passion and Resurrection of our Lord and Savior, Jesus Christ. Love, Jenny and Josie

Dear Przemek....

2011-04-18T21:43:00.000-07:00

OK here goes my dear Przemek (Liz and Sylwia)letter...

Dear Przemek,

I have to confess that the past month has been undoubtedly the worst walking month that Josie has had in the 3 years she has been with you. My excuses are miles long, some legitimate like practically a month long of migraines where it was all I could do to get her to school and pick her up on the good days. Burn out after the fashion show was more than I thought we would encounter. And Hawaii...well, it just didn't get done. Great Grandma hurt her knee there so at least Rita got used by someone.

With that being said and the guilt a mile long, I knew after dinner tonight that I needed desperately to get her on her canes even for a short 15 foot walk. I knew she would be all over the place and I was prepared to begin the hard work up like never before. I have had her in the stander a lot in hopes that would give her passive muscle strengthening of some sort over the past month.

I set up the canes, expecting a huge argument and trying to wheel and deal her way out of it, instead she grabbed her canes and RAN, yes RAN, down the hallway. I didn't touch her once. There wasn't a wobble to be seen. I could have left the room and she would have been steady Eddy. There weren't even corrections to be made. We were both giddy with laughter. It was one of the first times I actually saw her enjoy her canes. She walked down the hall and went to get the towel out of the closet that cousin Jeanie made for her in Michigan. She balanced while she got the matching wash cloth out. She walked from there into her room and went over to the bed to check something out that was sitting there. Over to her dresser from there. When we got to the bump between rooms, I went to help her over it and she pushed me away saying that she could handle it and she did. On into my room where she got all the way to the bed and with holding one cane started to take her own clothes off to get in bed. As I picked her up to help her she said, "boy that was really fun." I thought my ears had deceived me. She then put her hands together, glanced upward and said thank you God, well and Przemek too. Priceless.

So I end my letter to you with apologies for the past month but with gratitude on always sticking by us. The 3 of you, Przemek, Slywia and Liz, have been our walking saviors. I wish you could be here in person to withness the fruits of your labors.

Gratefully yours,

Jenny and my wonderful sidekick, Josie.

Aloha!!

2011-04-17T21:44:00.001-07:00

Wow, just when I thought I couldn't get any worse with lack of posting, this month occurred. It has been so crazy in so many ways. With 21 days of migraines, I just wasn't able to turn on the computer to blog.

Josie is doing great and moving along in life so happily. Well it helps that we just returned late last night from a 10 day family trip to Maui. The whole family went including Grams and Gramps. It was a trip of a lifetime. Giggles could probably be heard all the way back on the mainland. Josie spent the majority of her time in the water which I know comes as no surprise. She is a little fish and now a very brown berry fish. What incredible skin she has. There was hours of digging in the sand and great water slide that on the last day she even went on all by herself. We got a picture, but it isn't digital. I will try to scan and post it. She was so proud to finally do it by herself. We went whale watching one morning which was a highlight for Jos. All the cousins were great together. We stayed in the most incredible places that allowed us to cook almost every night together and eat together. We are so thankful to have this time together. When it comes to family, I truly feel blessed to have won the family lottery.

Back to school and therapy tomorrow. It might be a rude awakening (literally) to get up and out the door instead of sitting on the balcony whale watching while eating breakfast. Happy Palm Sunday to all and enjoy this glorious Holy Week. Blessings, Jenny and Josie

PS. I still have to post pictures and video from the fashion show which I will hopefully do this week barring the fact that I can keep these migraines away.

Happy St. Patrick's Day!!

2011-03-17T21:30:00.001-07:00

Cutest Little Leprechaun!

O'Noonan Clan

Gramps and Josie

May the luck O' the Irish be with you today, Love the O'Noonan Clan!

We had a nice celebration tonight at grandma and grandpa's house with Steph and the boys and Grams and Gramps. Gramp's side of the family are from Ireland, the O'Noonans. We always have such a great celebration every year.

Josie and some of her model friends at rehearsal

Josie and Teresa at therapy

Teresa loved holding Josie's American Girl doll

In other parts of our lives, Josie has been putting the finishing touches on her fashion show debut happening this weekend. She is so excited and a bit nervous. It seemed so far away in August when we started talking about it. Now it is here and real. SO sad that Przemek and Sylwia won't be here in person to see it...and many others. I will post video of it. The hardest part is going to be to focus with 300 people looking at you. You know her, she will want to try to talk to them from 3 feet up on the runway. Good luck Liz. You definitely have your work cut out for you. She did make her 4 minute timed trial today at therapy. Whatever it is it will be incredible. The fact that she is upright on 2 feet is amazing. Better yet, the spirit that little girl has is amazing. I am so proud of her. It is a great grand finale of all your hard work since you were rolled out of the operating room on August 6, 2002. More to come after the show. Love, J and J

Message dictated by Josie

2011-03-11T21:39:00.000-08:00

I am joining the fashion show for Children's Hospital Los Angeles. I can't wait for everyone to see it. I got a new dress for it. Bye, Josie.

PS. My mom will write more later.

Catch Up

2011-02-24T20:22:00.000-08:00

We have had 2 glorious weeks. Glorious may be a weird word when almost one of them Josie was sick. Glorious in that when she was sick we slowed our life way down and could just be together while she got well. Right before she got sick she got to have her very first slumber party. This slumber party had been planned, talked about and highly anticipated. She was ecstatic. I know normal parents let their child have one friend spend the night the first time. But think about it, when has normal and Jenny ever collided in the same sentence...yeah almost never. Josie got to have 4 of her friends. I figured that if I was going to do it and forgo what I thought would be a night without sleep, let's just knock it out all at once. She had Audrey, Hailey, Tara and Caroline. Such sweet little friends. When they got here, I piled them all into my parents suburban. Off we went to Chinatown in LA for Dim Sum. Silly me to not realize that Dim Sum is only served at breakfast and lunch. Needless to say, we had a very authentic and somewhat unusual Chinese meal. Back at home we made the family room into one giant bed with air mattresses and Josie's mattress from her bed. The girls watched a movie from our "bedroom" and ate warm rice crispy treats. They were just bound and determined to stay up all night, yeah right. We made a deal, they could stay up to make a wish at 11:11. At 11:12 I turned out the lights and at 11:13 they were all sound asleep. They actually slept until 7:30. Not bad. After a picnic in the front yard of chocolate chip pancakes they were off to play with the bunnies before they went home. I love the sweet innocence in how they see the world, experience life, and treat each other with such kindness. Everyone of them offers to push Josie around. In fact they don't even offer they just do it. They include her in everything. There has to be a special place in Heaven for these wonderful souls. Josie couldn't be more blessed with friends between here and Michigan. She definitely won the friend lottery.

Well as soon as be said goodbye to the girls, Josie's cough had really picked up and her little body all of a sudden started burning up. Straight into bed she went where she stayed until Tuesday. Poor baby. She made it through her first sleep over and luckily no one else got it, including me..phew.

More big news is that she got her bottom braces on. She is doing a good job with them. They were sore at first but better now. Today she got her top expander put back on. This has hurt her all day. She even went to bed by 7:45 tonight. That nagging teeth pain wears you out. Unfortunately, she has to get braces. We have to get those bucky beavers (as her Uncle Brian calls them) need to be put in their place.

We are really gearing up for the fashion show. Of course the illness didn't help our progress, but we are back at it. She walked better then I thought she would today with Liz. She felt awful because her teeth hurt so much so I was worried that we would get her to do anything. She complained through most of her workout, which is so unlike her these days, but she pulled it together during her walking. Now I REALLY have to get her to do a lot of it this weekend when we go to the desert. She is so excited for the fashion show and I want it to be a success for her. Anyone who wants to see it can get tickets at www.flintridgeguildchildrenshospital.org. She is modeling on Saturday, March 19th at all 3 shows. The 10 AM show is already sold out and the others will go quickly.

Thanks for checking in. I know more has happened but I can't think of what right now. Ciao for now, Jenny and Josie

Long Overdue

2011-02-06T20:50:00.000-08:00

I feel like lately that I start these posts with apologies. So here is another one. Life has been great and busy. Busy is what I vowed not to have happen when we returned home. I need my dose of Michigan to slow us down again...to bad MI is under snow or I may show up on some doorsteps. Our busy has also been good. Josie is doing really well all around. Her walking is good, school is her love right now (at least the social part of it). Josie is in the Junior Peacemakers club. They have a meeting a week at lunch and then do their assigned jobs on another day at lunch. Her job is the hall monitor. Lord help the kids who make the bad decision to run past her. I am trying to tell her that it is Peacemakers so you have to do your job with a very kind voice. I can see it know Josie yelling at everyone to slow down.

Happy Birthday Dad and Happy Adoption day Josie

It was such a thrill that I officially adopted Josie on my dad's birthday in 2007. We will forever celebrate the 2 great occasions on the same day. This year we went to Oakmont Country Club for dinner. Always a treat to be together. Happy Birthday Dad!

Dr. Borchard and Josie at her lasted eye exam. She is so cute in those glasses, Now we just have to get in the habit of wearing them more often like everytime she reads. When you work so hard in one part of your life a few things fall to the wayside in the rest. Well can't do it all.

Liz with the girls taking pictures during their break

Therapy has been going well. Liz and Josie are practicing very hard for the fashion show in March. Josie only has 5 minutes to get down the runway. This will be a trick. Thankfully Liz will be on stage with her. We are at therapy with Teresa every Monday. Now on Thursday's we get to pick her up from her school and take her to therapy. The girls get to be together in the car and at therapy. Teresa just grins from ear to ear when we pick her up. On Thursday Annie (her therapist) and I asked her if she wanted to listen to Hannah Montana. She very deliberately nodded her head yes. Unable to really believe that she did this, we tried it again. With much deliberation she indeed nodded again. Then we asked which CD she wanted to listen to and to show us her answers with her eyes. She picked the purple case twice in a row. She then had to push the button to turn the music on. She did this numerous amounts of times. She seemed to like Party in the USA song. I know she is so trapped in that body. She is so aware and bright. It is my goal to somehow unlock her from the tight grip the body has on her. We will somehow get her to be able to communicate better. After she was finished and Josie still had more time, Teresa and I laird on the mat and watched Josie. She seemed so content. I love being with that little angel. She is such a joy. Josie adores her more than anything. Love to you all, Jenny and Josie

Hit and Run

2011-01-23T23:11:00.000-08:00

We had an interesting little event happen to us today. We went to church at 11:00. As we were leaving we pulled up the street past the church parking lot. A black Jaguar was pulling out of the parking lot as we were coming up the street. I saw that he was rolling out like he didn't see me there. I said to Josie that he wasn't stopping. All of a sudden he hit the gas to pull out into the street and I sped up. Luckily he didn't completely t bone me but did smash us pretty hard in the right back side. He hit us hard enough to push our car, make a loud sound and made us stop before we could drive again. Josie and I were both ok, but here is the worst part of the story....After we got hit I made a u-turn to talk to the person who hit us. All of a sudden I realized that he wasn't stopping. He ran the yellow light at the signal and kept going. I tried to catch up but by then the light was red and the oncoming traffic was going. I couldn't believe we were hit and run by a fellow church member that we were just in church with.

I had to call the sheriff to file a report in case I need my insurance fix my car. The nice police women said that is one was up there in her "can't believe this happened" book...granted La Canada is not the most happening place for the police. But still. She did point out to me that we weren't hurt and the person who hit us has bigger problems if they are going to hit and run at a church. Bet your bottom dollar that we will be cruising the parking lot next week at all 3 masses!! Mercy on the poor soul who did this. Josie and I are ok and that is all that matters. Cars are just tin and rubber. Night, Jenny and Josie

Great Walking Update

2011-01-23T00:15:00.000-08:00

Josie has been actively walking this week. Today after we got back from Orange County, I put her on her canes. She had just been in the car for an hour and sitting this morning at my meeting. This scenario usually means stiffness and long warm ups to get into walking mode. However, since we have started using the dynamic stander to get her around everywhere outside of the house, it has seemed to really increase her strength and balance. Anyhow, she walked today like a champ. 3 rounds and I only had to catch her once. We are using the hallway to simulate the runway for the fashion show in March. A few minutes after she walked, I grabbed the camera. I told her I had to tape this for Przemek, Sylwia and Liz. It was so steady and solid. Here is how it went...set up canes, positioned camera on the stand, did a test run with the record button, reset it, pushed record, ran over to get Josie up, and as she started to walk it was like she had never been on her own 2 feet before and the canes were a foreign object, try to get her back to the great rhythm and walking, absolutely no luck, put Josie down, run and turn off camera, shake my head and take her back into the other room. How can you lose the ability so quickly? 15 minutes later I can't believe what has just transpired. Here is how it went next...make sure to put camera in other room far, far away from Josie, get canes set up way down the hallway, bring Josie to the canes, listen to her ask 3 times why she has to walk again and where is the camera?, set her on her canes and off she goes like Wonder Woman..........WHY CAN'T YOU DO THAT FOR THE CAMERA???!!! OK, at least you can do it. We even started a new saying to get her to pick up her canes faster. P and I were using 1,2,3,4 to get her into a rhythm which worked well. Tonight we started saying step, fast cane, step, fast cane. It seemed to prompt the quicker pick up and placement of the cane. I will try this again tomorrow and then with Liz on Monday. When we reached the end of the hall she was actually smiling feeling very proud of herself, which is rare with walking. She liked the quickness that the new rhythm helps with. I made her say, "My walking was great". She never compliments herself or feels that accomplished with her walking. I text back and forth with Liz after the escapades. Funny!! Well Przemek and Sylwia, I will try to sneak the camera in tomorrow. I would like you to see her. She may have regressed some, but overall I think you will be proud of where she is. We'll call you tomorrow too.

Thanks all for checking in. We appreciate all your support always. Jenny and Josie

Weekend at the Amigleo's

2011-01-21T21:26:00.000-08:00

This picture is hysterical of Josie walking the Hopa the dog or better yet Hopa walking Josie. I had to run after her because Hopa was acting like a sled dog. Yikes!

Josie's crew helping push her back up the street. Thanks Boys!!

If you click on this picture you can see the coyote on the hillside. He was not afraid of all the people by the pool and came down very low on the hill. This is unusual for them. They are usually out at night and very afraid of people. Not a good thing to have him milling around the neighborhood in brood daylight.

Swimming in January at the beach...awesome.

We got to spend a few days in San Clemente at the Amigleo's last weekend. They live down in San Clemente just above the beach. It was such an unusually hot weekend that it was great to sleep with the windows open and feel the ocean breeze. We spent the next day totally outside...playing in the street (they live on a cul-de-sac which is perfect for the hundreds of kids that live there). Josie loved the freedom of just playing with the kids. The kids swam for a couple of hours while Anne-Marie and I tried to get some work done by the pool. Not easy to work when it feels like summer. After we swam, Tony and the other guys on the street made a barbecue in the street. Again kids everywhere playing. Love to see the kids outside enjoying the simplicities of life...no tv, no video games just real playing. Thanks Amigleo's for having us once again. This is becoming our other home away from home. Jenny and Josie

Ice skating with Mending Kids

2011-01-21T21:06:00.000-08:00

We are really on the ice skating roll this week...3 times. Josie is loving it and so are the people skating with her. I love to watch her engage with "normal" activities and that she isn't limited by her abilities.

The PCY girl gang

Josie and Mark Urata. Mark is the doctor that separated Josie. He did all her reconstruction and continues to be her lead doctor. Fun to be with he and his darling family that day.

Mending Kids had a terrific ice skating day at Santa Monica Beach on Sunday. It was quite a trip to be skating on frozen ice when it was 81 degrees at the beach that day. The poor guys trying to manage the ice had a heck of a time trying to clear the water off the rink. We had a ball pretending we were staking in a pool. Fun to be with all our MKI friends new and old. Mark Urata and family were there. I always feel more comfortable doing any kind of activity when Josie's lead doctor is present!! Good thing he lives down the block. Sorry for you Mark. After skating we went to 3rd and Promenade with the Drummond Family. Josie brought her good buddy Audrey with us so Cole and the girls enjoyed dinner. Thanks for taking us out Drummonds. Great to have time to catch up with you all.

OK Michigan family and friends...I realize that we still don't get the idea of winter sports, but it is hard when it is so hot out. Come visit us!! Miss you all so much. Jenny and Josie

Brownies on Ice

2011-01-12T20:43:00.001-08:00

Today I took our Brownie troop ice skating. We had so much fun. A very special thanks to Brad Lew for helping out. I realized very quickly yesterday that there was no way for me alone to get all those skates on and laced up in time for our lesson. A nice man named Tau did our lesson for us. He was helpful since a majority of the girls have never been on ice skates. It was fun to watch them progress in such a short time but most of all to see their smiles and hear the giggles. We have such an adorable troop that has been together since kindergarten. Josie thought she was skating like them. She would hold her body they way they were instructed. I love that she can have "normal" experiences in her life. Her life is so far from normal.

Tonight we went to dinner at Steph's house. Michele, Brian and boys were back up in La Canada. The cousins all have such a great time together. Luke and Matt play so well with Josie. Fun they are older to actually play together. The babies are getting so much older and more interactive. Trent is just about to take off walking. Amazing to watch the precess. As I have learned, it is a huge process and amazing that anyone can walk when you really dissect what it takes. I know an enormous brain injury doesn't help. Beating the odds is what we are trying to do best. Night, Jenny and Josie

Ice Skating

2011-01-11T19:46:00.001-08:00

Josie has wanted to go ice skating for a really long time now. I just couldn't quite figure out how exactly to make that work. After school we went to the Pasadena ice rink to give it a try. I brought the Crocodile walker thinking that would be the best idea. After I got her skates on (after 2 pairs) I put her in the walker and onto the ice. Immediately the feet went out in front of her. After realizing that there was no good or safe way to make this work, I put her back in her blue cadillac. Bingo it totally worked. We skated for an hour and she couldn't have been happier. She was moving her arms all over like a professional skater. She would spin in circles> most importantly she was having a ball and was really safe. Tomorrow I am taking the whole Brownie troop there so we wanted to check it out first. Tomorrow I am going to use the blue Cadillac again but remove the blue foot plate so she can put skates on, feel the feeling of the ice under her feet and still be extremely safe on the ice. Loved hearing her laughter on the ice. Don't tell us know, just let me figure it out and it will be done.

At school today she got %100 on her purple words spelling test. She was so proud of all her hard work and accomplishment. We are moving onto the blue words tonight. She is doing really well in school. I am so proud of her. Thanks for checking in. Jenny and Josie

Went to the pet store for rabbit food today...

2011-01-10T20:47:00.001-08:00

And guess what jumped into our basket...

Josie and I just couldn't resist and the man at the store didn't make it any easier. What's 3 when you already have two. Speaking of 2, we picked up our old male bunny from the neighbors who so kindly bunnysat it while we were in Michigan. I would love to return it to the neighbors but Josie won't hear of it. George (what the neighbors named him since they didn't like the name Fatty da Tatty (Josie named of course) if happily hopping in the back yard. He didn't forget a thing being gone 6 months. I walked out tonight to put him away and he hoped right over to the cage, got in and waited for his food. I didn't realize before having these bunnies that they were so smart.

The keeper of the kingdom, Lolly, isn't warming up too quickly to the new bunny. Every time the bunny goes into the little castle thing, Lolly flops herself at the entrance so the bunny can't get out. They are also separated right now because Lolly is chasing her like a crazy lady around the pen. Speaking of crazy ladies, my suspicion now is that they didn't sex Lolly right at the pet shop and that she may actually be a boy. Acting that way if you know what I mean. I'll have to sun her to the vet for a second opinion.

Keeper of the Kingdom...Miss Loly blocking in the new bunny

Liz, you shouldn't give us days off. We run ourselves into all kinds of trouble!!

Not much more happening in our world. Tomorrow we are going to measure out the run way measurements for the fashion show in March. We have to start timing these practices so we can get them under 5 minutes. 5 minutes with an audience is going to be the trick!! Perfect practice makes perfect...we just have to practice. Night from bunnyland, Jenny and Josie

PS. IF Lolly turns out to be a boy, you all can have first pick of the litter!!

Weekend in the OC

2011-01-08T21:24:00.001-08:00

Josie and I headed down to Orange County right after school on Friday for a couple of meetings I had to attend. Josie is so amazing during these meetings. There are very few 9 year old that can sit quiet and patiently during something that is so boring to them. It was cute today when we were asked to got around the room and introduce ourselves. When we came to Josie she spoke right up and said, "Hi I am Josie Hull. I got into this business with my mom. I sell Fusion for her and I take Omega." She was adorable and probably more poised than most of the adults that were in the room. After our meeting ended yesterday, she asked to make a quick announcement and told everyone that she was selling Girl Scout cookies. Let me tell you how many orders she took!! She is my little entrepreneur. I love my business and I love even more how open and welcoming everyone is to her.

When we weren't in meetings we were at the Amigleo's house in San Clemente. Josie absolutely loves being with Tony and Anne Marie's 4 kids. The kids are 11, 10, 9 and 4 so they all play together well. We are thankful to have them and are able to stay with them. Thanks Amigleos.

Hope all of you are having a great weekend. Love, Jenny and Josie

300

2011-01-05T21:25:00.000-08:00

I know what you are all thinking because I posted a number. I wish you were right in thinking she stood independently for 300 seconds, but unfortunately that isn't it. 300 represents the number of posts to date. Who knew I had so much to say..oh with me of course I had so much to say.

So let's take a quick recap of what has transpired over 300 posts which includes 1 and a half years. Here is the bottom line...post number 1 she couldn't walk, post number 300 she can walk. I hope and pray by post 600 that she is walking without canes or anything. I think it is in the realm of possibility. There is still a lot of hard work ahead of us. I need to reeve the engines back up in me. I feel a tad burnt out but can't let down after all this time. Josie isn't burnt out and that is what matters most.

Thank you to all of you who check in on us. Knowing we have your support makes the journey worthwhile. Thank you to our friends and especially family who have been so supportive and caring. We could not have gotten this far without you. Stay tuned more exciting things to come. Jenny and Josie

Happy Birthday to my Darling Sister, Stephanie

2011-01-04T22:03:00.000-08:00

It is Steph's birthday and we had a nice celebration at our parent's house tonight. Brian and Michelle and the boys came down today from Tahoe. Gary and Carol Richards (Mike's parents) got to join us. Grams and Gramps were there. The kids loved helping blow out candles and open presents. Happy birthday my sweet Stephanie!!

Cute Josie is loving school so much. I think the social part is the true draw even though I would like to believe it was the academics...haha. Every Monday she has to leave school during lunch time to get to therapy on time. She doesn't like leaving early in fear that she will miss some big event at school. Last year she was leaving 2 and 3 days early so she lucked out this year. Anyway, just before we got in the car this morning, she asked if she could stay at school until night time and that it was more fun there. Stab to the heart in one sense and overjoyed that she likes it so much in another. I don't blame her for wanting to stay. After school she either has to go to therapy for hours or do her walking and workout with me at home with homework. I must not be the fun mom to her since I am always making her work. I do try to keep life fun for her. Oh well.

Before the party she did a good job with an hour and a half of homework. The page that I thought she would struggle with she actually totally understood. She amazes me daily. She also had to do a lot of cane walking today since we have slacked off on it this past few days...sorry P and S!! I will pick it up again I promise.

Speaking of P and S, aren't you guys impressed that I am posting for the 3rd day in a row!! I apologise to my main subscribers for the lack of posting happening lately. So great to Skype with you guys last night. Josie was still talking about it today. Hugs to the big Max Man for us.

Over and out. Will check in again tomorrow. Jen and Jos

Snow in Santa Clarita

2011-01-03T22:35:00.000-08:00

It snowed in Santa Clarita yesterday and the snow actually stuck. It has been 22 years since that has happened. There was even snow on the ground when we went to Liz's today at 1:00 PM. Liz sent some of these pictures that she took yesterday at her house. You would think from the looks of it that we were still in Michigan..but no it happened 34 miles away from the center of Los Angeles. Fun.

Happy Teresa
The girls get to go to therapy together on Monday. Teresa is there for the first hour that Josie is there. Teresa works with Cindy and Josie obviously with Liz. It is a bit distracting for Josie but the girls love to be together. I think somewhere it motivates Teresa. Today she really showed it. Usually when Cindy puts her in standing she complains and cries until she gets out. Today she was smiling and "talking" the whole time. Maybe she made a new New Years resolution...stand more and don't complain. Boy I love that little girl. She has every right to complain. She is tough as nails. It is great to see her doing so well. It can be touchy but today was great.

Teresa standing, smiling and working hard

...and Josie is busy putting Liz's hair in a rubber band!!

Sweet sisters holding hands

Miss Cindy and Liz who we need to thank daily for helping our darling little girls.

Josie was spent tonight with going back to school and therapy. Good for her to work hard again. Tonight I jumped on the computer and randomly Skped Przemek and Sylwia. Low and behold I got ahold of them. I ran in the other room to get Josie so she could see them too. When she saw Przemek she just started squeeling and laughing like crazy. She couldn't believe it was him. Then Slywia popped into the picture and the laughing and squealing began all over again. Then there was Max..I think you get the picture...yes she definitely misses them. We got the great pleasure of seeing and meeting Sylwia's lovely sister, her husband and 2 adorable kids. We spend so much time together and get to learn about each others families it will be a treat to be in the same room someday, but for today it was fabulous to see them on Skype.

Off to see the wizard before tomorrow comes around. I am still trying to move back into our house. Hopefully I will be done tomorrow...minus the 15 boxes in the garage.. those are for another time and place. Night, Jenny and Josie

New Year's Resolution 362....

2011-01-02T21:46:00.000-08:00

New Year's Resolution 362....post more often on blog when home in California. I have been awful about this and I apologize. Everyone has been so supportive of Josie and her journey and I need to resolve to do this more often.

Having said that, we have been extremely busy with the greatness that comes this time of year. We bask in the glory of the Lord's birth and are blessed to have shared this time with our wonderful family and friends. So here goes some pictures of many fabulous holiday moments...

The beautiful creche at St. Bede's Church. It is such a magnificent scene on Christmas Eve. Josie loves when they bring down Baby Jesus and puts him in the manger. She always says, "Now he is born."

The double rainbow that was outside the Mending Kids office. It had rained here for days but here is what we got to see at the end of the storm. May double rainbows appear over every child we (MKI) helps this year. Off to a good start with the completion of our Ethiopia heart mission. You can read some very touching stories of the mission at www.mendingkids.org. Click on the blog section.

Josie and I on Christmas Eve. We have a great celebration every year at Steph and Mike's.

Josie seeing her baby bunny for the first time. Grandpa let little Lolly hop out from under the tree. Josie had absolutely no idea that she was getting a new bunny. Her favorite bunny, Gabriella, died while we were in Michigan. We now only have one rabbit left. I like having more than one so they have someone (or some bunny) to be with all day. As you can see here, she has absolutely jumped off the couch and actually stood for a few seconds herself...Przemek, Sylwia and Liz, we should try this tactic!!

Josie holding her new bunny

Meet Lolly, the Holland, dwarf, lopped eared bunny

All the cousins on Christmas day. They are such great buddies.

Carson and Trent playing together.

Josie and her ROLLING suitcase. All she wanted was her own rolling suitcase so when we travel she can take her own suitcase by herself. Why didn't I think of this the past 4 years while we moved our lives back and forth across the country?! Better late than never.

These next pictures are fun for us. Gramps, Grams and I love the horse races. We go a few times a year to the Santa Anita track and bet the big 3 together every year starting with the Kentucky Derby. For Christmas this year, I got a table for opening day at Santa Anita that happens to be December 26th. We all had such a great time. Josie picked the winning horse that day off a hunch.

The Noonan family on opening day.

Watching the races

The Noonan Family Table

Josie's horse, Sydney's Candy, that won. Her is the ironic part, Sydney's Candy is owned by Jenny Craig the diet guru. Funny part is everyone of her horses have been named after candy or chocolate. I guess she gets rich and pays for her horses because we Americans consume to much of these things.

Handicapping the horses...Gramps is really good at this

Sunbathing in Palm Desert with Lolly

Carson and Jack Mitchell (our second cousin) playing today at the Hull side Christmas party

Josie and Luke having a great tea party

Busy and great times. Thanks for checking in. Wishing you all a Happy New Year!! Cheers to 2011. Jenny and Josie

Much needed update

2010-12-16T22:56:00.000-08:00

My sincerest apologies for waiting so long in between post. Like all other Americans, we have been busy enjoying the busiest time of year. I'm going to give a quick photo update since I am too tired to form normal sounding sentences. I will update with words later.

Last weekend we were invited by Josie's sweet school aide, Anna Galante to see her churches live Nativity scene. I took Josie, Luke and Carson. We drove through it twice because they liked it so much. Thanks Mrs. G!!

Slumber party at Luke's house.

We got 2 Christmas trees this year. A big one and a small "Josie's" tree. Josie only had an interest in decorating her own. Her are some pictures of her doing all by herself...love that phrase.

Every year since I was a little girl, we go to the annual Oakmont Country Club Christmas party that has the Bob Baker Marionette show come. It is fun to relive my childhood memories through the eyes of my beautiful daughter.

This might be as close as we ever get to Santa and the only picture she may ever have with Santa. If you look really hard you can see him in the background. At least this year she made a valid attempt to even be in the same room with him. Yikes.

Playing catch with their new stuffed animals with the other kids on the dance floor.

Luke taking her around. He loves to take her with him so they can play. Too cute!!

Josie with Great Grandma and Grandpa

School is wrapping up tomorrow for Christmas break. Feels like we just started and now a break. Well we always welcome a vacation. Thanks for checking in with us. Hope you are all enjoying the greatness of the season. Jenny and Josie

New Adventure

2010-12-09T21:46:00.000-08:00

First few moments in her dynamic stander

Had to try out opening and closing the door by herself

Busy at work the next night

It is amazing to think that you can find something in the back of a garage in a big box that could change a person's life. Better yet, if my brain was functioning on all cylinders I would have remembered that I put it there last June. So here it is...a dynamic stander by Rifton. Here is the background. Last June, 2 days before we left for Michigan, a local hospital called to offer me an almost brand new dynamic stander that they ordered in the rehab department for a kiddo and never used it. They wanted to give it to Josie or Mending Kids. Well since I was leaving 2 days later for 5 months and I was packing my house so the renters could move in, I just picked up this big box, never opened it and put it in the back of my parents garage. Fast forward to Monday night...I went into the garage to put some of the boxes that I shipped home from MI in there and noticed this great big box taking up a lot of room. You can imagine my shock when I opened it and realized what it was. The next day after school, I brought it in the house and set up the dynamic stander. Josie went crazy. She spent the next 2 hours STANDING and playing. She played with Luke and he pulled her where ever they wanted to play. She rolled herself all over. She LOVED it. It even had to stay in our room while she slept that night. The next morning the first thing she wanted to do was to get in it. I made her get dressed first so she could be ready for school. She even ate breakfast standing at the table while I was in the back of the house in the shower...that is how safe she is in it. We did make a rule that she always had to walk into the house with her canes and also to the stander if she got in it later. I can't let her get away with not using the canes. She is so good and sturdy on them she can't lose that. It is so exciting to see her joy with the new found independence. The stander is too small for her technically so I am ordering her bigger wheels so she doesn't have to bend over to make it go. I can't believe in 2 days how much more time she spent standing and weight bearing because of this thing. It is so good for her on so many accounts. Aw yet another new adventure in her life. PS. If you were at Costco yesterday and she took off your ankles while doing her fancy dancy spinning trick, I apologize!!

As for the rest of the week... the girls got to be at therapy together on Monday. They do love to be together. Josie rather play with Teresa the whole time so next week we will have to insist on some harder working during that time. Teresa is getting better with her standing in the spider inside the cage. I can't say she loves it but starting to tolerate it a bit more. Liz and Josie were happy to be back together. Liz was more excited to be together without a seizure adventure this time...sorry Liz, she must have been saving them all for you!!

Last night was the TACH fundraiser for Children's Hospital Los Angeles at Round table Pizza in La Canada. TACH stands for Teens for the Advancement of Children's Hospital. What it is is a student program that raises money and awareness for the adolescent Medicine program at CHLA. A group of teens started this a few years back and now it is a mini class at the high school. Anyway, Josie was helping the teens last night check in the volunteers who came. She loved doing this and the kids where cute to have her. We ened up taking our pizza up to Aunt Steph's to have a pizza party there with the boys.

Mending Kids is putting on another cardiac mission for the next 2 weeks in Ethiopia. Our team over there is doing an amazing job saving the lives of so many children. I have attached the link to a news report that Dorothy Lucey did on FOX from over there. Dorothy is local morning news reporter in LA and is also on our Executive Board. There will be other segments as well and I will let you know so you can see them.
http://www.myfoxla.com/dpp/good_day_la/dorothy-lucey-via-skype-in-ethiopia-20101208

Also, Ann Drummond is doing a blog from there and you can find that on our MKI website at www.mendingkids.org under the tab Blog. Unbelievable, lifesaving miracles that are happening there. Bless the children, families, surgeons and all on the mission team.

That is it for now. Off to the OC tomorrow and will return Saturday. Will post again then. Jenny and Josie

Wonderful Weekend

2010-12-05T22:34:00.000-08:00

The Sweet Sisters- they love each other so much

Wenceslao holding Teresa

Jorge modeling his new backpack. He starts school January 16th

Dora the Explorer - Monica

It is always hard to end a joyous weekend. We have had so much fun having everyone here for 4 days from Guatemala. What amazing and brave souls Lety and Wenceslao are. Their lives have been less than easy, yet they face each day with happiness and hope. It is comforting knowing that are sweet girls, Josie and Teresa come from such good people.

This weekend we mostly just played. Yesterday we did a bit of shopping for them and then back to the Cajas's house to just be together. Josie loves playing with Jorge (named after the neurosurgeon, Dr. Jorge Lazareff, who separated the girls and Monica. They are good little buddies. Today we had the pleasure of going to church with them. Werner Cajas is the pastor of their church. At the beginning of the service (which is all in spanish) Werner told the congregation about Josie and that she was the sister of Teresa and that I was her mom. He went on and on about the story and why we were all there together today. He also told them that we don't speak spanish so if the congregation could say welcome in english. They did and Josie and I answered back with, "Gracias". They whole place erupted in laughter with our spanish answer to their english. Werner, I did take spanish in high school and college..wish I would have listened closer to the teachers then!!

After church we went back to the house to be together before they had to leave tonight. Lety made homemade tortillas. What a treat. They don't even compare to the store bought kind. Lety was teaching us all the art of tortilla making. She is very good at it and yes it does take a bit of talent. We all had some good laughs when I was trying to learn. I couldn't get mine into a circle to save my life. She was doing them with her eyes piratically closed. Too much fun. Goodbyes are always tough. We do our best to keep our chins up until we can be together again. Josie and Teresa handle it really well and that is the most important.

We will attempt to start school again tomorrow. Josie is almost completely well. The best part it that her seizures have completely stopped for the the last 2 days. I think she is free of the clusters and actually seizures all together again...Yeah Omega!! Good night and sweet dreams, Jenny and Josie

PS. Przemek and Sylwia, Josie tried to call you guys today. Call her when you get a chance. She is really missing you guys.

Visit from Guatemala

2010-12-03T22:02:00.000-08:00

Meeting in the lobby of Children's Hospital Los Angeles

Everyone from Guatemala is here to visit for the first time in over a year. With Josie and I travelling so much and Teresa going in and out of the hospital we never found time to bring the gang up from Guatemala. The first day together was an adventure. Teresa wasn't feeling well so we all met at Children's Hospital Los Angeles for her to be seen by the doctor. After being seen in the regular clinic they had her go to the ER because they were worried about her shunts. Long story short and thanks be to God, she is ok and was released without an overnight stay. So that took care of yesterday.

Today we just spent time together at the Cajas's house. I think Teresa was the most excited to have all the action happening around her. She is doing so well and is incredibly alert and responsive. So great to see. Josie loved playing with the kids, of course. She just talks like they have any clue what she is saying. They don't speak a lick of english and her spanish is spotty at best. Good times. Jenny and Josie

Getting Better

2010-12-01T20:31:00.001-08:00

Josie felt a bit better today. She actually sat up and played this morning. I have seen less cluster seizures today which is a really good sign. She will stay out of school for the rest of the week. We don't want to push her with a compromised immune system. We have everyone coming from Guatemala tomorrow. We haven't seen them in over a year because we have been gone so much. It will be nice to be together. Josie is excited about spending 4 days with her sister. I hope she will be well enough to see them tomorrow. Keep your fingers crossed that the seizures keep going away. I did give her more Omega. Can't stand seizures. They turn too quickly and are so easy to lose control of. Keeping our prayers going. Jenny and Josie

"Welcome Back Josie"

2010-11-30T22:50:00.000-08:00

Adorable sign made by Audrey Raulli

One round of hugging...lots of that happening today

In her new classroom. They swtched sits right after this and she now sits in the front.

Coloring at recess

Josie returned to school on Monday. She was so excited to be back and see her friends. The girls were so cute. They would talk a bit and then all hug each other and then talk again and hug over and over. Even the boys were running over to welcome her back. We are lucky to have such great kids support her here. I stayed the whole day so we could meet with the appropriate people about her current needs, new developments in her physical ability and her education ability. I was so excited to share how much progress she has made while we were away.

We left school after lunch in order to get to Liz's for her first day back to therapy. Let me back up a bit. On Sunday night she acted like she was coming down with a cold. She was so anxious to get back to school I decided she must be well enough to go and I would be with her if she needed to leave. Ok fast forward to Monday afternoon. We arrived at Liz's and when we walked in the door, Liz came over to hug Josie and talk to her. Josie wasn't responding back, which Liz commented on and is not like her at all!! I noticed in the car as we were pulling in that she had a seizure, which she hasn't been having. Thought nothing of it and kept going. Liz went to the room to get it set up while Josie walked down the hall with one cane. Her steps were so off and I was actually getting mad at her for not walking correctly, especially after her progress in Michigan. As we walked down the hall she had about 4 more seizures in 3 minutes. Odd, but we kept going. At this point I was more concerned about the walking. I put her up on the bed and Liz began to stretch her feet. She began to seize one seizure after the next. When we got to 10 I ran to the car to get my phone to call Dr. Mitchell. The seizures continued and I couldn't get through to neurology. Finally she wasn't responding very fast so Liz and I put her in the car and headed to the local emergency room. As we drove over, I was able to get the resident on call paged. At first he wanted to go over her complete medical history before he went to talk to Dr. Mitchell. I told his with all due respect we would be on the phone for 3 weeks just to cover the history and to please just go get Dr. Mitchell, she has the history. He went and got ahold of Dr. Mitchell. A half hour later, while sitting in the parking lot of Henry Mayo Hospital, the seizures stopped. We decided to drive home...there is always 911 on the way if we needed it. As we were pulling up the resident called back. He thought the onset of the seizures were because of the cold. I always try to keep her away from anyone sick when possible because I knew there was a possibility of the seizures increasing with sickness. Luckily she has never had this happen when she has been sick in the past. The resident thought that the seizures would stop when she got well. He doesn't want her going anywhere until she is completely well because if she gets sicker she will seize more and they could escalate into grand mals. He thought I should keep her home for the week so she can completely heal and not compromise her immune system anymore. Joy, her PE PT, said that all her seizure kids are sick with this cold and are experiencing an increase in their seizures. One of her little guys is in the ICU because of it. Award winning start to school. Calling in sick the second day was extremely embarrassing. I try so hard to make her fit in like a normal child and this definitely doesn't help my cause. Well, doing the best we can. Today she felt so bad the only thing she did was go from the bed to the couch back to bed for a 3 hour nap out to the table for soup at dinner and back to bed. She feels awful. Hopefully tomorrow she will turn the corner. She had a few runs today with cluster seizures. An episode of 6, 10 and 8 in a row. I haven't seen any clusters tonight. I will up the Omega again tonight to help offer more brain support. She seems to do better with this. Wish I had a more positive and cheerful post, but on the bright side, glad not to be in the hospital. Jenny and Josie

Stair Stepper

2010-11-28T21:57:00.000-08:00

Quick update tonight since we just got home from the desert and have to start school tomorrow. I am so excited to post this video though, so I had to post tonight. We went to the park in La Quinta and there was a great play structure. Josie, of course, wanted to climb up it. She even want to climb the steps by herself even thought she has never been able to do it on her own before. I stood right there and sure enough she climbed all the way up...and then did it again and again and again, etc. She was so incredibly proud of herself. As we were leaving the park she asked if I would go get the camera and video her climbing. I think she was so excited that she has accomplished a huge task that she wanted to see herself do it. I know this will make Przemek and Sylwia happy. I think the person who will appreciate this the most will be Susan Knight, her PT from Childrens Hospital LA. She worked tireless hours trying to get Josie to climb the stairs...Here's for you Susan!! Night. Jenny and Josie

T H A N K S G I V I N G

2010-11-25T21:27:00.000-08:00

T - The Family

There is so much for us to be grateful for, but most importantly
family. We were so fortunate to be with the family today

H - Home

We have actually had 2 homes the past 2 years. We are thankful for our family and friends in Michigan who made it like home for us. Of course, we are incredibly grateful for our California family. We are excited to be home for a while.

A - Amen

Josie said the cutest prayer for us at dinner tonight. It was so sweet to hear how thankful she is for her family and her life. Here is the picture of she and Luke saying Amen at the end of the prayer

N - Nice Dinner

We had a nice "feast" as Luke would say. Always a treat to be together.

K - Kids

I can't begin to say how grateful and thankful I am to be Josie's mom. What a blessing that God picked me. We are so thankful for all the kids who bring so much light to the world.

S - Sun and Swimming

Swimming in the Sun at the end of Novemeber...thankful

G - Grams and Gramps

My adorable 85 year old grandparents. Angels on earth!!

I - Iannis and In-laws

Our family has been incredibly blessed with amazing in-laws. I can't tell you how lucky we are and how much we like to be together. Michele's family came over after dinner for pie. We always have a good time and lots of laughs with the Iannis and Donahues

V - View

God painted a nice picture in the sky today.

I - Inspiring

These pies were inspired by my Great Grandmother, Grandma Helen's, recipes. We are also inspired everyday by my grandparents and their love.

N - Nephews

Aw the bear cubs. 4 silly little boys that love to laugh. They are a treat and Josie adores them.

G - God
Without our gracious God, we wouldn't be able to be so thankful for all our blessings. We are thankful to him for the family and friends that he has given us in our life. Happy Thanksgiving to you and the ones you love. Jenny and Josie

Week in the Desert

2010-11-24T20:17:00.000-08:00

We are out at the desert for a much needed and relaxing Thanksgiving week. Before we got here we had a few things to do. On Thursday, we went to Dr. Mitchell, Josie's neurologist at Childrens Hospital Los Angeles, for a check up. We were incredibly excited to tell her about the Omega helping subside those darn seizures. She always refers to Josie as "unique" and was relieved to hear that we found something. Unfortunately there isn't much else we can do pharmaceutical wise that will be of much use. We will keep on the Omegas and also keep up on what we can do holistically to stay ahead of it. On Friday, we saw Dr. Collin's, our holistic doctor. She was delighted with the Omega and tested her for a few other things. She has put her on other brain supports and liver detox for all the epileptic drugs she still has to take. It is refreshing to see her because she offers such positive support for her system.

After Dr. Collins, we were off to Orange County for meetings. Josie was supposed to go with my parents to the desert, but my poor mom's back went out. That has never happened to her before. I took Josie with me, because my mom can't lift her. We got to spend the night with the Amigleo's. She had a slumber party with Reagan. She was so proud to be on her own. It is always fun to be with the 4 Amigleo kids. It has been 5 months since we have been with them.

On Saturday we headed out to the desert. My parents were already there. We have been so relaxed which is switch for us. Josie got to swim, play and just be a kid. She had 2 full days off from walking which scared me. I was so concerned that she would lose something during this time. I put her on her canes and off she went. I didn't have to touch her and only had to catch her once or twice. She has been like that ever since. I tried to video tape her walking today to send to Przemek and Sylwia, but when I looked at it I cut off her head and feet. Sorry guys, I will try it again tomorrow.

Josie getting her nails done...only way I can get her to sit while I get a pedicure

Walking at the desert house

Sending a big Happy Birthday to our sweet Cole Drummond!! Sorry we weren't there to celebrate with you!!!

Grams and Gramps arrived today. The rest of the gang comes tonight. It will be a glorious day tomorrow to all be together. Thanks for checking in on us. Jenny and Josie

Dinner at Babe's with Grams and Gramps

Hello LA

2010-11-16T22:11:00.000-08:00

We are officially home in California. We landed Sunday afternoon and as the wheels hit the ground Josie yelled out, "We made it!". The people around us laughed. They probably thought that she was scared of flying and happy to be on the ground. If they only knew the half of it. Right outside of the gate was the I Love LA store. She made me take a picture of it so here it is...

We were so excited to see some of the family for dinner that night. Luke was elated that Josie finally made it home. They are such cute little buddies. It has taken us a bit to get acclimated. The body and mind need a little break so we are moving rather slow the past few days. Except for the fact that on Monday morning Josie had an orthodontist appt. and in the afternoon she saw her orthopedic surgeon at Children's Hospital LA. He thought she was doing quite well. Before we left he was a bit worried about her heel cords and how tight they were. Now he isn't worried about them at all. This is a good reminder to me that there are subtle differences that I forget we have worked out. When I focus so hard on just the walking, I forget that we have taken care of other problems as well. It was drawn to my attention yesterday that since she started intensive physical therapy she hasn't required one orthopedic surgery to correct anything. That is beyond amazing since the fact that up until then she had at least one or two a year. She is so good that there isn't any even on the horizon. What a huge relief.

I have to admit that the walking at home was less than impressive for Sunday and Monday. I was making her do it but she was so uneasy. She was falling every few steps which is so unlike her. She was walking with bent knees and canes going all over. I started to panic slightly and was about to get Przemek on Skype to watch it. After breakfast today she was getting ready to walk to the family room. At that moment it dawned on me that she has been wearing her new black shoes for the past 2 days. Przemek has this theory that her pink sandals are her lucky shoes. I put her back in the chair, ran to the room and changed her into her "lucky" pink sandals. Sure enough she went flying across the room just like she has been for the past few weeks. Przemek- You are right again, just needed her lucky shoes or to threaten to call you if she didn't pick it up!! The rest of the day was perfect walking again. My faith has been restored.

Tonight she was walking around the kitchen and decided to stop at the freezer. I was just saying to my mom yesterday that she doesn't just stand at things and play. I was wishing she would do more of that. Well tonight she did. She opened and closed the freezer for at least 25 minutes. She would balance herself on her left cane. If she started to loose her balance or just need to reposition she would grab her right cane and do so on her own. I think I only had to catch her once and it was at the end when her legs got tired. She had so much fun and it was awesome to see her playing like a normal kid. We may have defrosted everything in there but well worth it.

Cute Josie and Luke decided to make a fort today which they spent a great deal of time in together. None of us were allowed in, but Grandpa was when he got home. Another great day of make believe.

We miss you all in Michigan. It is weird not to be there. We are slowly reentering here. Josie doesn't return to school until the Monday after Thanksgiving so it gives us time to get the appointments done and give her a little break. Thanks for checking in on us. We appreciate the support. We couldn't have done the last 5 months without all the amazing support we have received. Thank you for that. We are truly blessed. Jenny and Josie

Good Bye Grosse Pointe

2010-11-13T20:00:00.000-08:00

Josie, Reggie and Grant listening to music by the fire

We got to have one more special dinner with the Livingstons tonight. Reggie and Josie had a ball playing together. They were having their own dance party sitting on the ground since neither of them can stand without assistance. Too cute. Grant played the guitar which is always a great treat. Always nice to sit and visit with Janie and Pete. Thanks you guys for taking us in like family while we are here. We will miss you tons.

Thank you for having us. We will miss everyone and everything. It has been such a rewarding journey to be apart of this wonderful community. We felt welcomed and loved. We look forward to our return in spring. Until then, you will remain in our hearts. Jenny and Josie

PS. Kasey Malley- I am so sorry to missed you today. Big hugs from Josie and I. Will call you soon for the presents we talked about. Look forward to seeing you and your beautiful family in spring. Love to all of them.

"I Did It"

2010-11-12T19:28:00.001-08:00

The 3 Amigos

Josie, Przemek, Sylwia and Simone from Italy

As we pulled out of Pediatric Fitness Center's driveway for the last time today, Josie just squealed from the back seat..."I did it!" It was such a proud sound from her and the first time I heard the thrill of complete accomplishment from her. She really did do it. I can't imagine asking anyone to endure what she just did for 5 months and to handle it with so much grace, joy and dignity. Very impressive.

Mrs. Boni, Josie, Mrs. W and Mrs. Burr

It was an emotional day here. I think I already announced at how bad I am at goodbyes. This has never been my strong suit. I did hold it together in front of the wonderful people at Kerby Elementary. We are going to miss the happy and positive spirit that just oozes out of their school walls. Never once did Mrs. W focus on what Josie couldn't do, but how to help her and what she can do. We need this attitude for everything. It isn't fair to compare her to other kids. They just haven't been through what she has and learn differently. I need to remember this the most. Appreciate what graces and abilities God has given her and relish in those accomplishments. I really credit the great attitude to the amazing principal, Maureen Burr. She just exudes happiness and you can tell the moment you meet her how much she adores the kids. She even remembered Josie's spelling words for her test today. Heather Boni who was Josie's speech therapist, although Josie won't let me call her that because she is afraid people will tease her for having to work on speech. So thank you Mrs. Boni, Josie's other teacher, for helping her. You all have been so accommodating and welcoming. We will miss you and look forward to our return in May.

Josie working out with the adorable pink bear given to her today by Mrs. W

and then...we had to say goodbye to our favorite Przemek and Sylwia. There was a lot that we all went through this time around together which made it harder to leave them. I know I write it a lot, but I can't begin to tell you how truly grateful I am to know people like them. They have helped us more than you can imagine. When you spend that much time with people in an emotional setting, you really do develop a great bond. We will miss you guys so much. I know we will talk regularly, but it won't be the same as seeing you everyday. Thank you for helping and loving Josie so much. You will always be our heroes. Tell Max we will miss him too.

Just after we started our drive home, Josie laid her head on the pillow in the back seat and fell fast asleep. I think the 5 months caught her in a single flash. She could finally let go. Her legs are over fatigued, her head must be spinning for so much concentration and body must be over all exhausted. She will get the weekend to take a break, except for walking around the house with 2 canes. I will have to start up the regime again on Monday, because we don't see Liz for 2 weeks. She can't afford to lose anything while we return home. Her mind will get a well deserved break. Therapy is probably just as hard mentally, if not more, than physical.

We got to go to the faith builders series tonight at church. Our dear Janie Livingston was the guest speaker. She was speaking on Haiti and Healing the Children. She was so filled with God's love and joy and did an amazing job with her story. She is truly a gift and is so amazing.

Well the car was picked up this morning, so we are officially on our way. We have all day tomorrow here and leave on Sunday. One more round of hard goodbyes. We are so thankful to be apart of this absolutely remarkable community. We truly did grow where we were planted. Thank you Grosse Pointe for having us. Jenny and Josie

Pasta Party

2010-11-11T18:47:00.000-08:00

Pasta Party at our (Aunt Harriet's) house

Reggie Sandwich

Reggie standing with Melissa's canes. He really wanted to try them and actually stood. He amazes us everyday.

Cutiepie Melissa

Look how amazing Melissa is with her canes. She is so incredibly strong

Tonight we got to have May and Melissa Eger and Reggie Livingston over for dinner. Josie thought this was the best that they could all be there by themselves. 3 out of 4 with special needs...no problem and quit fun. They all were giggling so hard. Reggie, who is only 4, keeps right up with those silly girls. In fact,he is usually the one cracking the jokes that they all laugh at. We had to say good bye to May and Melissa tonight. They are going up north tomorrow so we won't see them again until May. Josie was sad after they left. They have been the 3 amigos and really do love together. For Josie, they make the long 5 months doable and exciting.

Therapy was great today. I stayed the whole time to help with the pictures that needed to be taken for the home workout program. We definitely do have our work cut out for us. Liz and I are up for the challenge. Since Przemek put a left knee immobilizer on yesterday she has had a bit of a turnaround with her one cane walking. It just gives her a little more stability to really do it. It is going to take a while longer for that left leg to be proficient at it. We will continue to strengthen it at home. She also needs to get more comfortable with it and then the leg will straighten up more.

Before we left for therapy today, I got a call from the truck that is picking up my car to take it back to CA. I thought they were going to come late Friday or on Saturday so I wasn't packed. They called to say they would pick it up at 5:30 tonight. We don't even get home from therapy until 4:30 on a good day. My amazing Janie and Grant came over and we literally shoved everything into it including the bike and the trailer. We went so fast and actually got it done by 5:30. They man called back at 5:45 and said he couldn't come after all tonight and we would come by 10 tomorrow morning. At least it's packed!!! THANK YOU JANIE AND GRANT!!!!

Lory and Madison Eger left today with Laura Clutterbuck and a few other women to go help at the orphanage in Haiti. These amazing women went down so the regular women employees could take some very much need and well deserved time off. They will be staying there and help with all aspects of the orphanage. Laura is adopting a little girl from there and she might even be placed with her this week. How amazing to finally meet her little girl. We are all anxiously waiting the news and pictures. Ladies, you show us the meaning of doing God's work. Thanks for being such wonderful examples.

Tomorrow will be the last day of school here and therapy. Josie is already telling me I can't cry when I say goodbye...yeah right. I can't even keep a dry eye through Disney movies. It is impossible to adequately thank people for changing your daughters life. As for Przemek and Sylwia there are not words to express your gratitude for the effort and mostly love that they put forth to better your child's life. We have truly become family with them and it will be very hard to leave them again. It is comforting to know that we will be back in spring. It is also good to know so I don't slack for one minute at home and keep her moving forward. Off to throw just a few more things into the car. Thanks for checking in. Jenny and Josie

Happy Birthday Mayra "Maisy Mae" Eger

2010-11-10T19:19:00.000-08:00

Happy 8th birthday to our darling Maisy. Thanks for letting us celebrate another birthday with you.

Filming continued at therapy today. She did really well on the balance board with one cane. Przemek put on a left knee immobilizer during the end part one one cane walking because she is having a strength issue with her left. She had so much more control and balance. We will keep using this until she is stronger and more secure in this process.

Exciting news with standing...she stood for 2 minutes and 5 seconds!! We took the clock off the wall and let her watch the second hand to see how long she had gone for. This is much more effective then the counting right now. She loved the challenge of trying to beat the clock. I have to admit there was a little bribing going on but she was so steady and thrilled that she could see the actual seconds click by.

Only 2 more therapy days. There is a lot to accomplish still. You would think you could get it all done in 5 months, but it is impossible. There is always more. We will leave on Sunday happy and content with what we have accomplished and relish in that moment instead of thinking about what we didn't. Ciao, Jenny and Josie

3 more therapy days

2010-11-09T20:06:00.000-08:00

We are winding down quickly. The video taping begun today to establish an at home (or at Liz's) program. We will continue this for the rest of the week. Fair warning Liz, Przemek is loading us up!! Josie is still working really hard and makes remarkable changes daily. We are using every minute we have to keep learning.

Lately we have been using prizes to give incentives to continue to work hard at therapy. She will work for like 10 days to get to prize day. Yesterday she asked me what the prize was for the end of the week and I told her that it was a one way ticket on Delta Airlines this Sunday to Los Angeles. She just laughed and actually agreed that that was a good one.

School is going really well, too. They have such a great method here that they are using. I hope we an continue it at home...I will make sure of it. Tempting all around to stay, but we need to get back to our life at home. We were fortunate to receive dates to return in May. I will celebrate my 40th birthday in Przemek's gym. What better present then to watch my amazing daughter walk.

I'll try to get some video and pictures tomorrow since we will be in movie mode anyway. Night, Jenny and Josie

Last full weekend in MI.

2010-11-07T19:54:00.000-08:00

We are blessed to be surrounds by angels.

All the kids

Przemek and Sylwia with Josie, Reggie and Melissa. We love you for all you do to better our kids lives....Thank You will never be enough!

May, Madison and Josie

Josie and Maks

The last official week is here. We begin final preparations to move back home. It has been an intense 2 years being here off and on. Exciting and nervous to go home and excited and nervous about leaving. We have really grown into this place with the therapy, friends, family and the wonderful support every single person has offered us. On the flip side we are returning to the most wonderfully supportive and loving family, close and familiar friends. I guess I need to stop thinking so much and focus on the last 5 big days. There is so much to learn at therapy to take home and apply so we make sure that this was for not.

We had the great pleasure of having dinner tonight with Przemek, Sylwia and Maks at the Little Club with the Livingstons and Egers. We had a huge group together and lots of laughs. Fun to be together. Josie and Melissa are old enough to really appreciate what Sylwia and Przemek are doing for them. They know how hard they work to make their lives better. It is sweet to know that they have this profound gratefulness for them. We, as their parents, also have the same admiration for their hard work, dedication to our children and the joy and love they give them everyday.

Last night Josie and I got to go see the Fall Follies that South High School put on. I was amazed at the talent of these high school students. Grant Livingston sang a solo and Andrew and Ben Malley were also apart of this amazing event. It was a treat to see it and Josie loved all the singing and dancing. I hope one day she will experience something like that.

Off to do some more packing. I need to start shipping some things home tomorrow. Night, Jenny and Josie

Let it snow, let it snow, let it snow...

2010-11-06T07:31:00.000-07:00

Snow flurries

Catching snow flakes on her tongue

It snowed last night...well at least flurries of snow. Josie loved trying to catch the snow on her tongue. It was coming down hard enough to see but not cold enough to make it really stick.

Therapy went really well yesterday. She tried her hardest to date with her one cane walking. It is a hard thing for her to do, but we are getting over the hardest hurdle now. She is really good at the balance board which should be harder to do than the floor. We look forward to one more week. I need to spend the week really learning what we need to focus the most on at home. Thanks for checking in on us. One more week here and then home again. Boy how fast 5 months goes, but what incredible progress she has made. Jenny and Josie

The Count Down Begins

2010-11-04T19:00:00.000-07:00

On the balance board with one cane. This is really hard and she is good at it and likes the challenge. She pretends she is surfing.

Good buddies. Break before the walking.

Przemek with the Trick-or-treat bag

We are almost finished with this week and then we are officially in our last week. I is incredibly hard to believe how quickly 5 months can pass. This year flew by compared to last.

Josie continues to do a great job at therapy. I thought by now we would have to be really pulling her through, because it would be hard for anyone to work at this intensity for this length of time. She seems to still be ok. I haven't made that big of deal about leaving soon to her in hopes that I can keep her mind engaged until the end. She will definitely have a better idea this weekend when we start to pack.

Josie is working really hard at using one cane. It is another long and difficult process. We hope to get to a good baseline by the end of next week so Liz can take over with some progress under our belts. It will be fun for Joy to have her during school and see the changes adapting to her old school environment.

We got another update on the Standing Dani. Blue Cross insisted that the next appeals process was a call from Dr. Kay her orthopedic surgeon. It took about 4 days for this incredibly busy doctor to be able to do this. When he spoke to them they said that he couldn't be the one to do a peer to peer review because it was the Blue Cross physical therapist that denied the claim. Can you even believe that a licensed physical therapist would think it was better for someone to be sitting vs. standing. Get her name and number so we can make sure that no one we know ever sees someone like her. It is crazy. They said that our PT had to call instead. Nice Joy took her time today and called. She talked to the PT that supposedly denied it and she said that she didn't and we had to file another formal appeal. Unbelievable. We will prevail...with a lot of effort, but come hell or high water she is not going in a wheel chair after this amount of therapy. Maybe I should start having bake sales and raising the money myself!!

Thanks for checking in on us. We are looking forward to this weekend and possibly getting a snow flurry. It will make staying inside and packing a lot easier. Jenny and Josie

This video is cute because she is counting in Polish. She loves learning Polish words. It is on the balance board with 2 canes not one. She usually uses one so this must have been a warm up.

Halloween

2010-11-02T14:41:00.000-07:00

Craving pumpkins. Josie gave hers chickenpox

Our cheerleader (really I am her cheerleader, but trust me the costume looked way better on her!!)

Darling Aunt Harriet and Josie on the steps at 88 Cloverly. Love this place.

Standing by the pumpkins

Out front with Aunt Harriet

Cutest girls in town...Josie, May, and Melissa

Cute girls on their carts. We should have dressed them up as Caesar. Would have been hilarious to have them ride around on their carts then.

Reggie with his fan club or harem

Sorting the loot

The cutest slice of pizza in town and darling Madison

Josie and Janie passing out candy

Josie passing out candy

Happy late Halloween to all. Sorry for the delay in posts...migraines are bogging me down. We had a blast on Halloween. Josie was a darling pink cheerleader. We went over to the Livingston's awesome kid street with the Egers. Cute to have Josie and Melissa on their standers going trick-o-treating. It was so much easier on Lory and I not to have to get them out of the jogger at every house. They loved being upright and truly part of the action. Josie who is petrified of costumes and masks did a really good job. She even helped pass out candy at the Livingstons to kids with masks on without totally freaking out. On the way home in the car she was remarking on how brave and well she did with the masks. I asked her how she did it and she said, "God". She said she just put God in her mind and knew she would be ok. Smart kid.

I didn't post last Friday, but it is too good to let it pass...Josie stood for 105 seconds. Almost 2 minutes. She is getting so steady with this and is using it in her one cane walking.

Today, she and Przemek walked around the gym passing out her Halloween candy. So cute to watch them. Nice, cooperative Przemek carried the bag on his shoulder. Ciao for now, Jenny and Josie

Better Day

2010-10-28T18:21:00.000-07:00

Woke up this morning and the world did look better...my mom is always right. Josie had her first spelling test here in Michigan. She was so nervous about getting something wrong, she almost couldn't concentrate on the words all week. She took her test and got a 100%. She was so proud and said she now thought it was silly to be that nervous. Glad we jumped that hurdle, again.

Przemek said she had an excellent day at therapy. I missed most of it because I was having an MRI to figure out these migraines. Josie walked for 40 minutes all around the gym, with people walking by, watching her, talking to her and she only fell once. Przemek also said that she was faster than usual. He gave her a break from one cane walking today. I think she was doing so great with 2 he wanted to work on that.

We are the first patient tomorrow so we will have to leave really early...not easy for us. Nice Przemek is treating Josie and then driving all the way to Ohio to go to a presurgery appointment with one of his other patients and then drive back that night. These people are so incredibly dedicated to their patients. They go above and beyond their duties and that is exactly why their patients get to live the best lives they can. Thanks you guys and I think I can speak for all of the parents whose kids you treat. Night, Jenny and Josie

The Good, The Bad and well just life

2010-10-27T18:01:00.000-07:00

One Cane Walking...Way to go Jos!!

The good first...Josie is just starting to learn to walk with one cane. It is the next very big step in her walking journey. It, like 2 cane walking) will be a process to learn and master. Przemek will get it going here, but Liz will be the one to keep it going and perfect it. We are hoping Josie can get a bit more comfortable with it before we return home. Right now she is scared of it because it feels so different and unstable. The same way her canes felt last year. She struggled with accepting how to relax and listen to Przemek's instruction. She got over that today and did quite well. We are headed in the right direction. Her 2 cane walking is so much fun to watch. She is just working on speed now.

**Warning, I'm on a bit of a negative jag, so you may not want to read the rest***

The bad...I have been working really hard to get Blue Cross to accept our claim to get Josie the Standing Dani.(Medical equipment and we have never asked for even one piece of equipment from them ever). Most of you have seen the pictures of it this summer. It is an electric stander(she is actually standing with perfect posture) that she can use to get around school (in the classroom she will use canes), the grocery store, basically longer distances that she can't walk with her canes for. It keeps her upright which is so important for leg strength, balance, peer interaction, prevention of scoliosis, oh I could go on and on. It would replace what anyone else would use a wheel chair for, which I refuse to do especially after finding the Standing Dani. Anyway, Joy, her PT at school and therapist trained back here by these guys in Michigan, and Dr. Kay have helped submit the most thorough request. It went in for urgent review because we need it when we leave here in 2 1/2 weeks. The doctor at Blue Cross got it this afternoon after much chasing down by me and DENIED the claim within 5 minutes...not even possible for her to fully read and review all the material sent. I am so mad. They will give her a $35,000 power wheel chair and a full time nurse (she doesn't even need one), will pay for all the surgeries and complications that come with being in a wheel chair, but won't pay for something that they haven't seen a million studies on why it is better than a wheel chair. There are not a million bloddy studies because there are very few proactive parents like me that are more willing to work really hard so their child doesn't end up confined to a bloody wheel chair and the life that accompanies that unnecessarily. This child didn't survive one of the biggest, if not the biggest, medical procedure in the world and work this hard for so many years in therapy to have an insurance company deny her a better quality of life. argh. Dr. Kay, who mind you is one of the most well respected orthopedic surgeons in the country, asked for her to have this. Don't you think he knows her case better then some yoyo doctor reviewing something on paper?...Back into battle. It will get done, just with a lot more headache. Maybe it is good, I guess, for my patience to be tested. PS. Blue Cross - I don't have much of it right now, so beware.

Just have to vent once in a while. This is written about our daily life. 98% of the time doing great. As my mom would say, get some sleep and the world will look better in the morning. That's what I am going to do. Night, Jenny and Josie

31

2010-10-24T20:21:00.000-07:00

Eventually I am going to stop with this silly number thing, but I couldn't possibly when you hear what 31 means now....

Let me give you a bit of recent history. As most of you know Josie has her fair share of bouts with seizures. For the past year there has been a definite increase in her focal seizures (no grand mals to report since April 2, 2007). However, she has been through 5 meds so far and seems to always get her seizures back. The most effective med has been Carbitrol and it was only effective for a year. She started having her seizures on this so Dr. Mitchell has been trying to add cocktails so that we can beat these things. FYI. really hard to learn to walk when all of a sudden your body freezes and/or knees buckle, etc. I won't bore you with too many details, but last May she was admitted to CHLA to do a 4 1/2 day study to video EEG to capture these episodes because we are all at a loss of what to do. Outcome was that she should probably try a new med and other options are the brain surgery that removes the effective spot. She is definitely NOT a candidate for this because you have to do so many invasive brain surgery mappings and since her blood vessels are going every which way from being rerouted during separation this could be a fatal option and one we aren't even exploring. So over the summer and leading up to now she is on Carbitrol (still) and Lamictil except that she is on a very low dose of Lamictil because every time we try to increase it she seizes harder, longer and more frequently (great option right?!?!..Argh.) Over summer and fall she has about 25 - 40seizures a day. Way to many. About 6 weeks ago I was thinking I should really start my search around the country for the top epilepsy specialist and start a new adventure with this. At the same time I finally got around to putting her on Omega (fish Oil). Embarrassing to work for Amerisciences, specializing in scientific based supplements with the purest form of Omega on the market, and I hadn't even put my brain injured daughter on it (tad to much going on all at once). Within the first couple of days taking Omega her speech cleared up and words came out faster, our friends here even commented it was so profound, she could concentrate so much better at school and actually started reading (what a struggle it had been before that), she is singing most of the lyrics to songs not just the last word in every phrase and what I am most excited about...drum roll please...SHE HAS BEEN SEIZURE FREE FOR 31 DAYS... can you hear me shouting it from the mountain tops... SHE IS 31 DAYS SEIZURE FREE!!! God Bless OMEGA!

Simple, pure fish oil has changed her life. The scariest part is not one western medical doctor has even suggested using it, not just for seizures, but even for helping heal the brain. It will be my mission to let people know the profound effects that Omega can have. Not Omega from Trader Joes or Costco, but real, manufactured perfectly (very hard to find) fish oil. Amerisciences fish oil. Josie even feels better you can tell. She was sitting on the edge of the bed last week and I ran into the other room for something and yelled back at her to be careful and don't fall. She yelled back, "Don't worry I won't, I don't have seizures anymore."

Part of me is really scared to brag about this yet. I keep waiting for the other shoe to drop. I said if we made it 30 days I would start talking about it. I told our holistic doctor about it on Thursday and she concurred that I was giving her the proper dose and we will see her as soon as we get back. I have started to ween her off the Lamictil (never did anything anyway) and keep her on the Carbitrol for now. I pray that this keeps working. It is such a miracle in our lives, another one. I know we just had a few days with no posts so update, she is great. I think this should do it for tonight. Off to bed so we can get through day 32...wow does that sound great. Keep those prayers going. Jenny and seizure free, Josie

Moving Right Along

2010-10-20T18:06:00.000-07:00

Josie had a busy day with school and therapy. Poor thing didn't get to go to school yesterday because I dropped the blender on my toes and couldn't walk very well carrying her. She was sad, which is good, because she is loving her school here, even though she isn't there long.

Przemek told me she did really well walking today especially picking up the tempo. I missed it because I was at a doctors appointment. He also remarked on how well she executed her turns to both the right and the left. I did get back in time for standing which was not award winning like yesterday with 73. We will shoot for an 80 tomorrow.

That is it for tonight. Sorry for the rather boring post. Will try to find more excitement tomorrow! Best, Jenny and Josie

60- 103- 40- 73- 18- 14- 0

2010-10-19T20:21:00.000-07:00

OK, for those of you who follow this, I am going to throw you off with these numbers. They don't all represent the seconds Josie has been standing at therapy..hehe!! I haven't updated in so long, so try to follow this twisted post.

60
Yes, 60 does represent the seconds she stood a week ago Thursday. It was our last day of therapy before our final week off before heading into our final 4 weeks here. Josie was having a good session and all Przemek and I wanted before we left was her to hit the 60 second/1 minute mark. It was 3:29 PM and we had to leave on time at 3:30 to catch our flight. We didn't have even one extra minute to stay that day. We begged Josie to just bear down one more time and get there...she did. We, including Josie, were SO excited. It was the milestone that we set out to achieve the day we came this summer. She did it and it was glorious. It may have been the 11th hour but it happened. Off we ran to the airport satisfied that she conquered one of her biggest challenges.

60 also happened to be the temperature it was when we left Detroit. Nice for this time of year.

103
103 was the temperature it was when we arrived to Palm Desert. Big temperature swing, but glad to be in the nice hot California sun. We spent the week with the family and Grams and Gramps at my parents desert house. It was blissful mayhem with Josie, the two 3 year old boy cousins (Matt and Luke) and the 2 baby boys (Trent and Carson). It was never quiet and it was never dull, just like we like it. We had a ball being together and just swimming, playing and laughing a lot. Blessed are we to have such a great family that loves to be together.

Cousins playing. They loved all being in this silly box.

Josie insisted on taking the alligator raft out to the pool herself. It was 3 times bigger than her and she pulled it while walking with her canes. Notice in the lower picture the nice right foot and cane placement. Przemek - you should be very pleased and that she is walking across carpet that was very soft.

Feeding Carson banana baby food for the first time. These pictures are reversed. In the upper one he just tried it and loved it and below is his first taste.

Relaxing

Night swimming

40
My parents celebrated their 40th wedding anniversary last Sunday, 10-10-10. Magical date and magical marriage. They are truly examples of best friends. We were lucky to spend this time with them. Happy Anniversary Mom and Dad. We all love you so much.

73
73 is the seconds she stood for today!! We have been gone 10 days and out of practice with standing. We did some in the desert, but focused more on the walking. Today she was solid as a rock every time she practiced her standing. She was hitting constant numbers in the 40s. She did one 50 and was so proud she laughed and knocked herself down. She was standing without even wobbles which means that the brain has certainly retrained itself and has over come the injury that has affected her balance since the day of separation. Everyone said it was possible, but Przemek was the only one 100% convinced that he could do it...Congrats Przemek you worked your magic once again and won another HUGE battle in Josie's recovery. Liz and Sylwia, we do owe you A LOT of credit in this department as well.

18
Only 18 more therapy days left for this 5 month run in Michigan. It is scary and exciting as we round the corner to another big finish line. I watch in amazement daily how a sweet, kind hearted soul at 9 years old can be tougher than most humans on this planet. Unless you have spent even a day here, you can't even begin to know what she, and all the kids who come here, experience. Ask Lory Eger, she will tell you. Melissa is here with Sylwia again right now. These little girls have so much grit and willpower. Melissa stood for 12 minutes today. Her best time was yesterday with 5 1/2. Miracles happen but only because these miracle children and therapists work their tails off. We are 18 days away from returning to what was once our "normal" life, what ever that is. Scary to leave because we launch back into "normal" life and we have to remember to take the importance of what we have learned here and apply it into a life that doesn't slow down to do that well. Keep Josie is your prayers during this final push. We thank you for checking in on us. It is nice to have the support.

14
14 is the age of our dear friend, Janie Livingston's, nephew, DJ. He complained last week of a pulled shoulder, but was quite the athlete and didn't think much of it. It got bad enough that he went to the doctor and was unexpectadly diagnosed with Hodgkin's Lymphoma. Janie and Reggie went to be with the family last weekend and they got better news then they originally received and that it was treatable. This sweet 14 year old is starting the fight of his life. We know first hand the power of prayer and even though we have never met him, please send up a quick prayer for DJ and his family.

0
I have zero things left to add tonight (unusual for me I know!). Will be back again tomorrow night. Love and peace, Jenny and my prize fighter, Josie

Starting One Cane

2010-10-05T19:50:00.000-07:00

Yeah...we are finally ready to start working on using one cane. Josie worked really hard at it even though it was scary to her. She didn't even start this until after she walked for about an hour. Tomorrow, Przemek will start this before she does her long walking. She did a really good job at therapy today.

Tonight, she was doing her reading and just read right through her book being able to recognize her words so easily. This is a great change for her. It is fun to watch all these amazing transformations. We just have the rest of this week and then we are off for a week. When we return, we will go into our last session of therapy for these 5 months. I can't believe how fast it has gone and it is amazing to see how much she has been able to accomplish. Off to get packed. Jenny and Josie

October Weekend

2010-10-03T19:07:00.000-07:00

Madison, Lory, Grady, Josie and I in the Orchard

Picking Apples

Pumpkin Patch

Getting ready to leave with her hat and scarf. Josie was so excited she walked to the front door and waited for the Egers to come over(she only waited there for 5 minutes)

Josie, Reggie and Oliver on Saturday night

Walking outside on Friday

We finished therapy last week with a strong Friday. Josie walked all over the gym and even asked to walk outside. She is just having so much fun with her walking. She also stood really well. She had one 50 a few 40s and 30s. She is just getting so consistent with this. Now it is onto the independent steps. It will probably take us the same amount of time to learn this and to become proficient in it as it did the canes. One foot in front of the other...literally.

When we got home Friday, she walked in the house to the kitchen. When it was time to walk to her bedroom for bed, she started to sing this song that went something like this..."I love to walk. I am walking. I love Michigan because I learned to walk with Przemek and Sylwia." and the song went on and on. It was the first time that I think she allowed herself to be truly proud of what she has accomplished.

Last night we got to have dinner at the Livingston's on a cold and rainy Michigan night. Reggie was in his funny mood and was completely entertaining us. He and Josie were playing drums, crawling around the room and acting crazy. Oliver built them a fort and made them popcorn. Fun to be with them.

Today, we went to Blake's Cidermill with Lory, Madison and Grady Eger. It was cold and a little rainy when we were leaving. When we got there, we actually had decent weather. We picked and tasted so many apples. We also picked pumpkins. We had cider, donuts and headed home. Great day at the apple orchard.

We are getting ready for one more week and then a week break in Palm Desert with the family. Hope everyone had a great weekend. Jenny and Josie

54

2010-09-30T18:20:00.001-07:00

You all know how much I love posting numbers in the title because that only means one thing...ANOTHER RECORD... of 54 seconds!!! For those of you just tuning in, Josie is working on independent standing. She needs to be consistently in the 30s and 40s to take independent steps. With her balance issues this has been a hard task to accomplish. We had 45 once, but ever since then we haven't been able to even get to 40. She is consistent with the 30s. Today, after quite a few tries, we asked her to just bear down and make it to 40 so we could move on to the next exercise. She put her game face on and was standing so solidly and quickly past 40 and went straight onto 54. It was so exciting. Sylwia made her a sign to celebrate as you can see in the picture above. In the car on the way home, I commented about how she must have felt so strong and that she was using her muscles so well. Her comment was, "I just really put my heart into it that time." Love her.

We did have a record, which is so exciting, but also she had a fabulous day all around. She walked so far and so fast. She went down the hall, past the kitchen, down the other hall to the parents waiting room and Przemek had to only catch her once the whole way. He even went in front of her for part of the way. She is loving walking...one year ago I would have told somebody they were crazy if they said she would think that one year later. She has her great attitude back and is loving the challenge of this again.

School is going really well too. She is really starting to put the reading thing together finally. It is so much fun to watch it all click. She is starting to enjoy it too. Thanks for checking in. Hoping to finish off the week with a bang tomorrow. Jenny and Josie

Another Breakthrough

2010-09-29T19:04:00.000-07:00

Cute Little Girl in the window

Coming Through

We had a fabulous day all around. It started with a great attitude about school and therapy from Josie this morning. She could hardly wait to go back to school. I think she has a little crush on the boy who works next to her in the room. Whatever motivates her to want to go to school at this point works for me. When I picked her up, she was excited to go to therapy. She was her happy, chipper self. She obviously feels so much better. Her first round of walking was so strong and sturdy. She walked slower but with great precision. She is walking further distances in shorter amounts of time. We do need to pick up speed. I forget how fast the other kids are and how fast the classroom moves. After walking she practiced standing up from the bench. This just really seemed to click today. During the last round, Przemek told her when she stands up to stay up as long as she could. Remember she doesn't have on her knee immobilizers in this exercise like she does when she practices her independent standing. I was hoping she could just hold it for 5 seconds and I think Przemek thought about the same. She bounces up and holds it for about 30 seconds. We couldn't believe it. She didn't understand why we were so excited. We made her do it again and although she didn't get to 30 she did pretty well. I have it on video below. She shocks us in her abilities in some places and then leaves us in awe of why she can't conquer things in other areas that we would think would be simple for her. She will always be a great mystery in many ways. It makes her who she is.

It was a gorgeous Michigan day with the weather at 70 degrees. I figure Mother Nature owes us one after the past few days we had. We went for a little walk with Jeanie, Roger and Theo before dinner. Josie is still walking herself all over the house and is getting quicker. I can tell she is proud of herself, she just won't admit it. She got to be on time tonight and hopefully a good nights rest will lead us right into another award winning day. Off to bed, so I can cheer her on again tomorrow. Night, Jenny and Josie

In this video she isn't touching the bench even though it looks like it on here.

Back in Action

2010-09-28T19:52:00.000-07:00

She had to wear her Tigers shirt to workout to show Przemek. Cute.

Josie returned to therapy yesterday, but not to school. She had a good day considering she had been so sick. She still had a pretty good cough, so I didn't want her back at school yet. She even stayed home today to get the rest she needed to really get well. I think she will return to school in the morning.

Today at therapy was really encouraging. She told Przemek yesterday that her personal goal was to really get around everywhere by herself with her canes. She wants to start to learn to walk without them, but most importantly right now to do her canes. It is nice to have her input since it is her life and ability. We will make her proficient with canes at the same time learning independent steps. Now everyone is happy. I missed the first round of walking today and as I pulled in they were at the back door looking out at me. It was adorable to pull up and see that darling face smile as she was standing on her canes. Apparently she was incredible with her walking to there. She did well at standing and tried hard during stepping. When we got home tonight, I told her that it is now her responsibility to get around the house on her own. She did and did so well. She walked into the den. From there to the kitchen for dinner and from the kitchen to the bedroom. That was pretty far for her especially after a big therapy day. She was so good and stable I walked in front of her. I didn't have to catch her once!! Yeah Josie. It is so much fun to walk along side of her and have a conversation at the same time.

I know I keep saying how incredibly nice the people are here in Grosse Pointe. Here is another great example and it couldn't have come at a better time. I, unfortunately, have been battling a migraine for the past 3 days (nothing new) but today I couldn't get rid of it even with medicine and when we pulled into the driveway the thought of having to make dinner and figure that all out sounded terrible. I carried our stuff into the house and as I was walking back to the car to get Josie out I hear our neighbor, Sandy Fisher, who we just go to know, calling my name in the garage. She had just stopped by to bring us some homemade chili, chicken and fresh baked cookies. This was all just to be nice. She was absolutely a gift from God. Josie gobbled up the chili and what a blessing that I didn't have to cook with such a headache. I am so touched by the kindness of people. I hope I can take lessons from them and apply it to my life. Why are we always in a rush?? Thanks Sandy and Walter Fisher for being so kind and generous. Everyone we have met in Grosse Pointe are just like this. We will be sad to leave you all in November. Signing out tonight. Enjoy the short video of walking today. (Liz- I have meant to post one for so long and now just got to it.) Enjoy, Jenny and Josie

It's Fall in MI

2010-09-26T19:49:00.000-07:00

Comerica Park Home of the Detroit Tigers

Fall has officially arrived in MI. It was 86 degrees on Friday and 55 today. What a swing in weather. Fun to watch the leaves start to change. Josie is almost well besides a little cough. We had a fairly mellow weekend. We did get to go to the Detroit Tigers game with Reggie and Janie which was so much fun.

Back to the swing of school and therapy tomorrow. Hope she does well at both seeing that we have been out so long. Thanks for checking in on us.

Continuing to Recooperate

2010-09-23T20:54:00.000-07:00

Josie had a fever all night and need Tylenol ever 4 hours. We went to the doctor today and good news, she doesn't have a chest infection just a viral infection. It just needs to run it's course at this point. She took a nice nap and then had another fever tonight at 10:30 PM. She was a tab bit perkier today. Looks like we will be laying low tomorrow.

On a different note for all of you in Los Angeles. Michael Murran is a junior at La Canada High School that was just diagnosed with Leukemia. He was playing soccer and making plans for Labor day weekend when he suddenly fell ill. He needs people to make blood and platelet donations at Childrens Hospital Los Angeles in his name. He is A positive. If you are able to spare an hour, please consider doing this for him and all the children who need it at CHLA. The number is (323) 361-2441 or www.blooddonor2@CHLA.usc.edu. You can check out his blog at caringbridge.org/visit/michaelmurran. Please keep he and his family in your prayers as they battle this horrible disease.

Night, Jenny and Josie

One Sick Little Girl

2010-09-22T20:43:00.000-07:00

This was about as chipper as I saw her all day.

Trying her hardest to keep the old fashion thermometer under her tongue

OK, so here is what Josie did today, lied in bed. Poor little thing is feeling awful. She did move onto the couch this afternoon for a bit and watched me do my workout video. I am convinced this made her sicker!! Besides that she only got out of bed to use the restroom. She spiked a fever tonight so we definitely won't go to school or therapy tomorrow. It is so unlike her to get sick and especially this sick. It is worrying her a bit.

I did learn something today and that is I need to stop panicking about what might not get accomplished in our short time left here this fall and focus on what we have done and be thankful of what still lies ahead of us. We are the fortunate ones that get to return home to one of the best therapists in this method, Liz. We also have our fabulous therapists, Susan and Jen, at Childrens Hospital Los Angeles. Most people who leave here don't even have a decent therapist trained in traditional therapy even close to them not to mention this method. It was good for me to take a step back on put things into perspective. Now back to my nursing duties. I have a sneaky suspicion that we are in for a long night. Please send up a quick prayer for fast healing for Josie. Thanks, Jenny and Josie

Juggling Act continued....

2010-09-22T07:48:00.000-07:00

Good morning. So, maybe I jumped the gun on her exhaustion level. She was up all night sick with a cold. She hardly ever gets sick and what bad timing. We will update later.

Juggling Act

2010-09-21T18:21:00.001-07:00

Since we have started school, it has been somewhat of a juggling act. It is finding the perfect balance to make ALL of this work in harmony, or at least work. The reason we are here is to walk. With the time, effort, small window left and money it is what has to be the most important. However, Josie needs to be reading, writing doing math as proficiently as possible. Again, I see why God has us learn things in the time that we are supposed to. Almost impossible to learn 2 MAJOR tasks at the same time. So, it is planning the perfect sleep schedule, the perfect nutrition to stay strong and focused, the perfect amount of homework to do, and still finding time to play and live life. Well it all caught up to us today at therapy. She just didn't have any more concentration left. The fight and determination diminished and she wasn't even into the challenge of it. So time to rework the balance wheel and realign. We will start with cutting back school to Mon, Wed. and Fri. I will have to bring home the work for Tuesdays and Thursdays and work extra hard on the weekends. After a good battle at therapy with her and some tears, which we haven't had since last year we got in the car and headed home. She feel asleep 5 minutes down the road, which she never does. She really was over the top exhausted. She woke up 50 minutes later as we pulled down the street announcing, "The old Josie is back" with a smile on her face. She told me she really wants to work hard with Przemek still but she is so tired sometimes that "my brain hurts." We will put our new plan into play and see if that brings back the excited to walk, competitive, fighting Josie. She still did all her exercises, but with little focus. We just can't afford to have anything get in the way of our mission right now.

After we got home, we did get to go for a nice walk by the lake with the Egers. It was 90 degrees here today with a warm breeze. Perfect weather. We also stopped by to see our cousin, Annie Hull, who is home with her parents, Roger and Jeanie. It was great to see her. Then off to home for dinner and bed. We did sneak a little homework in there just for word reinforcement. I am going to get us ready for tomorrow and then off to bed myself. Thanks for checking on us and will pray for a great day tomorrow. Jenny and Josie

We will miss you Gabriella

2010-09-20T17:50:00.000-07:00

Sweet Little Gabriella

We are sad to report that our sweet bunny, Gabriella, died last night. She was such a feisty little thing. We raised her from the moment she was born and was as tame and trained as a dog. She would come to us when we called her. She spent all day hopping around the yard and at night she would follow me over to her cage and jump in to eat. Last March she somehow paralyzed her hind end and then somehow managed to get around by running on her front 2 paws. We will miss you sweet Gabbie. Now Josie is worried that her other bunny is going to be very lonely and is insisting that we get him a friend...please no!! At least we can't deal with that until we get home.

On a very happy note, Josie did amazingly well again today at therapy. She started to learn quite a few new things. She worked hard and tried her best at each one of them. She has got her competitive game face on. She continued working at her independent step. She even got to start trying her one cane walking. It is funny to think that 2 canes are considered easy now. I am trying to get her plenty of sleep and good nutrition so we can give it our best these last few weeks...7 to be exact. It is all going too quickly. She is making such great progress but there is still a lot to do. We will be grateful for each moment we get here. Ciao, Jenny and Josie

Pizza Day

2010-09-19T19:37:00.000-07:00

Pizza Kids

Alex

We had a fun Saturday with the Krneta's. Alex and Josie go to therapy together and Anastazia is the new regional director for our company in Canada. Josie and Alex made their own pizzas for lunch. After lunch they had a good time playing together will Anastazia and I got some work done. Great to have them over.

We had a mellow Sunday. After church we went for a visit at Aunt Harriet's. We haven't been able to see her much with both of our travel schedules lately. We planned to go to Greenfield Village after that, but by the time we got home and had lunch Josie was content to stay home and play. We went to the Livingston's for dinner which is always a treat to be with them. Josie loves all 5 of their boys around to play with. She adores Reggie so much. She always says, "I love that little guy." Before bed I had to tell her her favorite bunny, Gabriella, is really sick. She just cried and cried. She feels so far away and wants everything in their places while she is gone. She just wanted to pray for her, which was so cute. Bless her and Gabriella.

Hope everyone had a lovely fall weekend. We are lucky the weather is holding here. Jenny and Josie

1 Step Closer

2010-09-17T19:43:00.001-07:00

Literally, we are 1 step closer to walking because SHE TOOK HER FIRST INDEPENDENT STEP!!! Przemek was just doing her standing exercises and all of a sudden he asked her to shift her weight onto her left leg and to step with her right....she did!! Now as excited as I was to see this, let me not blow it out of proportion. Almost as soon as she lifted her leg and set it back down she leaned back against the wall. The good part was that she could actually lift it and set it down without falling. It is a step in the right direction (no pun intended). There is still so much to do before real independent walking is achieved but I was excited for this one moment. She loved it too and now she doesn't want to practice standing only stepping.

It has been a fun and fast week here. It has been so busy with adding school to the mix. We will see how we can make it all work. Josie did get a bit whiny at therapy which is unusual so I will increase her sleep schedule. I need her to read and walk. Thanks for checking in. I will be more diligent about the posts. Maybe I need to increase the sleep too since I have fallen asleep the past 2 nights before posting on the blog. Jenny and Josie

Too Cool at School

2010-09-14T20:03:00.001-07:00

Mrs. W and Josie (funny face Josie is making)

It was a big school day for Josie today. Yesterday, we had an IEP at the local elementary school. It was decided by myself and the staff from school that it was in Josie's best educational interest that she attends school for one hour and forty five minutes a day instead of receiving homebound services. This is an exciting decision because it means that she has matured, grown and can handle more than just therapy everyday. It is also bittersweet because we LOVE Mrs. Bergman and will be sad not to have her at the house. I think this new learning environment with the resource teacher, Mrs. W., will be positive for Josie. She has a lot of intensive programs going on right now. I see why God allows us to learn one big milestone at a time in life. It is hard to learn to walk and to read and learn at the same time. Josie is handling it with grace and maturity.

Since we are on the topic of school, there is a great quote on my Philosophy shampoo bottle..I know crazy place to get an inspirational quote, but appropriate for the philosophy to life...Here is goes

AMAZING GRACE Philosophy:Life is a classroom. we are both student and teacher. each day is a test. and each day we receive a passing or failing grade in one particular subject: Grace. grace is compassion, gratitude, surrender, faith, forgiveness, good manners, reverence, and the list goes on. it's something money can not buy and credentials rarely produce. being the smartest, the prettiest, the most talented, the richest, or even the poorest can't help. being a humble person can and being a helpful person can guide you through your days with grace and gratitude.

Happy school days to all of us, Jenny and Josie

PS. I forgot about therapy. Josie had a great season today. She is back with Przemek, but misses Slywia. She stood up for the first time from sitting on a bench. I taped it.

Home in CA

2010-09-07T22:44:00.000-07:00

Josie's "Dream Team" all together...What a glorious sight!!!

Teresa and Josie with the Cajas's, Tokaskis and Liz

Liz told Josie to look at the camera...guess what???

She didn't so look who is wearing frosting on their nose?

Teresa swimming. She absolutely loved the water. She smiled the whole time

More swimming

Josie playing a game with Teresa. She would go around the pole and kiss her. Teresa thought this was really funny. She kept trying to kiss Josie back.

Mike showing the kids backstage at Let's Make a Deal.

At Mike's producers area at the show

The Tokaskis at Manhattan Beach

Josie and Maks on the plane. They entertained themselves the entire flight. Good travelling kids.

After a whirlwind weekend at home, I am finally getting a chance to update. We came home on Friday with Przemek, Sylwia and their son Maks. We were so delighted to have them for a quick vacation in Los Angeles. We get to see them for dinner once in a while in Michigan, but never for any length of time. It was a treat to be together and just play. We went to Manhattan Beach after we landed on Friday. It was gorgeous out and we took a walk down the pier, the strand and then up into town for dinner at Rock-n-Fish. I do miss living there, especially on days like that. The next couple of days we did the tourist thing. Maks loved seeing Hollywood and all the tourist sights. We went to see Mike (my brother-in-law) on his set of Let's Make a Deal. It was neat for them to see how a game show is filmed. We even found a Catholic Church that does Mass in Polish. Unfortunately, we were having too much fun at Mike's work and totally missed Mass. We even got to spend some time with Liz and her family for dinner at their pool on Sunday. She has 3 boys around Maks's age. They had a ball playing. Teresa and family met us there as well. It was so great to see them. Teresa is doing really well right now. I took her swimming as you can see in the pictures above and she loved it. When we got her out she kept starring at the pool and when we asked her if she wanted to go back in she just kept starring at the pool. I took her back in and she was laughing and smiling. She is just like her sister, they love the water. Sadly, we had to drop Przemek, Sylwia and Maks off at the airport Monday morning. Przemek was surprising them with a trip to Aruba the next day to celebrate their 15th anniversary and Sylwia's birthday. They don't get much time off, so it will be great to be far way and really get a much deserved and needed break.

Josie and I will be home until next Sunday. We look forward to seeing family and friends while we are home. It will be nice to take a break as well. We need to gear up for the next 2 1/2 months of therapy. It is the last big push for this 5 month session. Przemek has big plans for this next time. He will have her for the remainder of our time. Be prepared to be amazed...not that we aren't already. She has been walking all over the house yesterday and today and it doing great. She is picking up speed and is so steady. We got laughing so hard on Monday morning. We were sitting at breakfast and I commented on the fact that they had been with us for 3 days and we were even with Liz, her LA therapist, for some of that time and not once did we get out the canes and walk her. I don't mean doing therapy, I mean just simply letting her walk like we are supposed too. She lucked out with her time off, now back at it kid!!! The Tokaskis might have headed to Aruba, but no rest for the weary here in LA!

On a personal note, please keep Doug Drummond in your prayers. He is currently in the hospital battling an unexpected case of Pancreatitis. Hopefully they can get him comfortable, well and home soon. Doug - we love you and know we are thinking about you.

Thanks for checking in on us. Jenny and Josie

Jonas Bros - Camp Rock Tour

2010-09-01T22:11:00.000-07:00

Madison and Sara at sound check

Jonas Bros at sound check

Our darling girls

Girls meeting Demi Lovato

Girls with Kevin Jonas

Girls backstage. Taking a picture onto stage

Josie dancing

Josie screaming

Jonas Bros

We got to go to the Jonas Bros concert tonight thanks to Scot Finck. You Rock Scotty!!! Lory Eger and I took Josie, May, Melissa, Madison and Sara Schulte. It was Madison's 16th birthday today too. Happy Birthday Madison!! We had such a good time. We got there early to go to sound check. This was a treat to see them is a smaller crowd. After, we went to meet and greet with Demi Lovato. They took us down first, so the girls were the only ones with her. At the very start of the show, we got to go back stage. The girls got to meet Kevin and Joe, talk to them and take pictures. What a treat to watch how happy they all were. The concert was really good and all those kids work so hard. We were incredibly lucky to be apart of it. Thanks Eger's for going. More pics tomorrow when I get them from Lory's camera

We did get to our therapy session today before the concert. Josie worked hard even though she was so excited to go. I can't promise she will do the same tomorrow after getting to sleep so late and having a big day today. We will try anyway. Night all from a very tired concert going mommy, jenny, and josie, a sound asleep concert going daughter that is very happy.

Obstacles

2010-08-31T21:45:00.001-07:00

Truly obstacles, but good ones. Josie started learning today how to walk over obstacles with her canes. She loved the new challenge and did fairly well her first time attempting this. Sylwia set up a mini obstacle course in the gym.

We also dodged another big obstacle here today. To make a long story short, our housing for the next month starting on Friday wasn't solidified. In fact, every place that we looked into fell through. One of the house unexpectedly sold on Monday of this week. This morning I was quite worried about what we were going to do. Just before I was about to pick up the phone and call the Ronald McDonald house in downtown Detroit, I called Mrs. Whitman (whose house we are currently in) to let her know we would be gone by Friday. Unfortunately, for Mrs. Whitman, she has hurt her back and neck and needs to stay up north for treatment. She so graciously insisted that we stayed at her house. She isn't sure when she can even come home here. What a blessing for us that she was so kind to let us stay. We will have a bit more time to figure our housing situation out. Please pray for Mrs. Whitman. She is such a dear lady and I don't want her to have to be in so much pain.

We are going to the Camprock/Jonas Bros concert tomorrow night. Josie and her friends are so excited. Will post pictures tomorrow. Jenny and Josie

Dairy Queen

2010-08-27T21:19:00.000-07:00

Walking

Ordering

Did it!!

Yes, I am blogging about Dairy Queen. It is because Josie got to walk up and order from there today. She was so excited. We have decided at therapy that she has conquered the cane walking in the controlled gym environment. Now she needs to use her skills in real life. Today she walked down the walk way by therapy, we drove up the hill and parked in front of DQ. From the car she walked up to the window and ordered. She was so cute and Sylwia was brave to do it. Next week we will hit Subway, Rite Aid, grocery store, etc so we can perfect this cane thing. As soon as we do, Przemek will probably pull the canes and we begin a new journey again. Exciting stuff. Jenny and Josie

Me and My Shadow

2010-08-26T20:12:00.000-07:00

At therapy today, Sylwia decided that Josie was ready to learn to walk outside with uneven surfaces and different obstacles. Apparently, (I wasn't there to witness this moment) Josie was terrified to go out. She kept telling Sylwia to lock the door and that she wouldn't go. This behavior is not typical of Josie right now. She was even telling Sylwia that she was so scared. Somehow Sylwia got her outside. Guess what...she walked just as well outside as she did in. She was so proud that she overcame her fear and that she could actually do it. She even went down a small step. When I was taking pictures she started chasing her own shadow. She kept saying, "Look I am going to get my shadow." She was so mesmerized by her shadow. It is amazing to see the things that she sees for the first time. We take for granted the simple things in life like our shadows. None of us probably even noticed ours today. It is certainly exciting to see the remarkable progress she is making right now. Jenny and Josie

"Amazing, Beautiful" says Sylwia

2010-08-25T20:17:00.000-07:00

As Josie finished her one hour of continuous walking today, Sylwia kept saying amazing...beautiful. During the hour, Sylwia rarely had to catch her. Her balance is so much more stable. They walked all over the whole gym. It is such a treat to see her walk so well. It is almost surreal. She is almost ready to take the next big move with her walking.

Tonight, we went to the country club with the Livingston's to celebrate Reggie's 4th birthday. We had such a great time sitting out on the patio. It was a beautiful summer evening. Josie loved being with the kids. After Reggie opened a present he said, "This was a good idea." He is so funny and has such a great sense of humor. Thanks Janie for having us. Night, Jenny and Josie

Barefeet

2010-08-24T22:11:00.000-07:00

During the car ride home from therapy today, Josie took off her shoes. I wanted her to keep them on because I wanted her to walk inside the house. (I so stupidly forgot to bring the canes to therapy today. We used them last night at the Eger's and I put them in the back of the bike and forgot to take them out. When you go to walking therapy it is always a good idea to bring the "walking" items. Somehow this could be a new blonde joke.) Back to the point...instead of putting her shoes back on, I decided to see if she could walk barefooted. Guess what? She can!!! She grabbed her canes and walked right down the hallway. She bent her knees slightly, but everything else was great. I didn't have to support her at all. Cute little flippers marching down the hall.

We went for a bike ride tonight and ended up at the Livingstons. Reggie gave us a quick outdoor drum concert. He got drums for his birthday. What a smile he had!! Josie enjoyed playing them too. We went for a walk and then rode home. I love summer and especially warm summer nights.

As for therapy, Josie did a good job for Sylwia. Her standing was remarkably better today than yesterday. She was so consistent with 30s. She is really conquering this skill quickly. Until tomorrow, Jenny and Josie

PS. I almost forgot that she walked all over Village Toys today. She was fairly quick and very stable. I am trying to do more walking outtings she gets used to real life with her walking.

Back with Sylwia

2010-08-23T19:58:00.000-07:00

Josie returned to therapy today with Sylwia. She was delighted to be back and thanfully didn't lose anything during our time off. She is so proficient with her canes and worked at them while we were away.

Tonight she got to swim with Melissa. She was excited to actually walk into there house with her canes. It is important that she begins to use them in her everyday life so they will become more automatic. Not much more to report today. Will update again tomorrow. Ciao, Jenny and Josie

PS. If you haven't checked out the Mending Kids blog about our Cardiac Mission in Ecuador you should. It is amazing the young lives they will save this week. The children getting treated will forever be fixed and their families can lead new and healthy lives with them. www.mendingkidsinternational.blogspot.com. For all of you from La Canada you will be happy to know that Ann Drummond is on the mission and is in charge of the media that went with them. Thanks Ann and all who selflessly give there time to save others children. God Bless

Summer Fun

2010-08-22T18:49:00.000-07:00

The Noonan Clan (or almost all of them)

Josie and Luke dancing at Gram's 85th birthday party

"Dude" Carson

Michele, Trent, Steph and Carson

Tubing

Some of the fam at dinner

Uncle Jeff and Josie taking a dive off the back of the boat

Dad barefooting at 61 yrs old!! He is definitely well. Thanks Huntington Hospital for getting him well fast enough to do this. He loves it!!

Uncle Mike catching some sweet air

Baby Mayhem with Grandma Carol and Nana (Aunt Justine)

We just returned from a wonderful week in California. We were at Jon and Katie's wedding in beautiful Santa Barbara. I used to spend so much time there that it was great to be back even for a short moment. From there we headed up north for our annual ski trip. What a treat to be with the family. Of course the whole thing went way to quickly as is summer. I wish we could extend it just a little longer.

We got to celebrate Grandma Ellie's 85th birthday there. She is such a remarkable woman and no one would ever believe she is 85. It was nice for her to have almost her whole family there together. She and Gramps are shining examples of love and happiness for all. We love you guys.

Josie had an absolute ball with everyone. There are 12 boys (great grand children) and just she and Fiona (1 1/2 yrs old) as the reigning queens. Devon is 11 but the rest of the boys are under 4. It was fabulous mayhem and Josie loved it. She also had a ball on the jet ski. She truly has the need for speed. We spent hours riding that thing. She is great in the boat as well. Good thing because we spent a lot of time skiing. It is always hard to leave the excitement there and to know that school is almost here.

We start tomorrow with Sylwia for 2 weeks. Josie did an excellent job walking all last week. I made sure she walked a lot in the cabin so she could keep up her strength and skill. One night she go to walk for some of the family. She did and excellent job having so many people in the room and was sooo proud. It was the moment that she had been working so hard for. She did it and told me so when we went to bed that night. She also did her standing there. She made it to 31 which is great under the conditions we had to work with. I am excited for her to get back to work tomorrow. She needs to continue this great journey. Love to all, Jenny and Josie

Emma and Taylor Bailey

2010-08-22T18:19:00.000-07:00

It is with a very heavy heart that I am posting about the passing of 2 incredibly special little girls, Emma and Taylor Bailey. The returned to our Lord last week. These special girls were born conjoined at the chest and had one heart. They defied all odds and were a great blessing to all that knew them. Josie and I had the fortunate pleasure of staying in their home in February during their fundraising event called 2 Sisters One Heart. You may remember me posting about it then. We also met them at Legoland in late Spring. The entire Bailey family is just remarkable. The love and happiness they share as a family should be an example for the world. My heart aches for them and will send continued prayers during this difficult time. I thank God for the special time we had with the girls. We look forward to the moments we will be with the Bailey family again. Please keep them in your prayers.

Vacation Time

2010-08-19T23:21:00.000-07:00

It doesn't get much better than this!!

I am going to keep this short and sweet. We have been in California since Thursday night. There is a ton to update and I will do that on Sunday night when we return to Michigan. In a nut shell, we were in Santa Barbara for John and Katie Yundt's wedding...gorgeous and so much fun. From there we went up to Sacramento for our annual family ski week. We are having so much fun here and are sad there are only 2 days left. Can't get Josie off the jet ski or out of the water. She loves being on or in the water at all times. Josie, of course, thinks this is what living should be like... Non stop fun and vacation. She has been walking all over the cabin with her canes and doing incredibly well. She got to walk for most of the family a couple of nights ago and she and they were so proud. She was just giddy with herself as she should be. That was the moment that she worked so hard to get too. Great accomplishment Jos!!

Off to bed so we can enjoy another big, fun day tomorrow. Hope everyone is enjoying the end of summer. Why does it always go so quickly?? Jen and Jos

45

2010-08-11T18:02:00.000-07:00

I love posting numbers because that means she is making new records!!! Today she stood so well it was amazing. She was balanced and steady and really into what she was trying to do. Obviously she made it to 45 which was so cool. She actually didn't even fall at 45 she just decided to lean back on the mat. I would have loved to have seen how many she would have got to if she didn't just stop. I'll take 45 though. Not only were Przemek and I ecstatic about 45 but more importantly the amount of 30s and 20s she consistently hit today. She will begin (and it will be a process not to be completed over night) the independent stepping. It is just so miraculous to think that we are starting the final stage of this incredibly long journey that most people never even believed to be possible. What she has already accomplished is past what people thought she was capable of. I love beating the odds.

Today Przemek decided to appease her and do something he knows she would love. It was movie making day starring Josie Hull. Fitting since Miley Cyrus is filming down the street from us in Grosse Pointe at the high school today. She thought she was like Miley today. I got to be the camera man and of course Przemek was the director and supporting actor. She performed beautifully for the camera of course. I think we will continue making the movie. Maybe Sylwia will be supporting actress when we return from vacation. I am going to get Oscar awards for them when it is finished.

We leave after therapy tomorrow to go back to California. We have a wedding in Santa Barbara this weekend and then straight up to the Delta for our water ski trip with the family. We won't be in LA to see anyone, but will get to do that in September because Przemek and Sylwia have the week off so we do too.

I will try to post tomorrow night if I have enough energy after our long travel day. We are supposed to take a field trip at therapy tomorrow with Melissa and Alex. Everyone is going to walk to Dairy Queen for ice cream. It is a long walk outside for all of them. It will be good practice to be in an uncontrolled environment. We wanted to go today but it started raining. Hopefully tomorrow. Good night now, Jenny and Josie

35

2010-08-10T18:15:00.000-07:00

Josie hit a new magic number today standing. 35 seconds with consistent 20s all day. She wasn't in her most cooperative mood today. I had to throw off the routine today. I had a doctors appointment so she got to go to the Eger's before therapy. She had a blast of course. She just used too much energy. I have this routine down to a science from the amount of sleep she needs to the perfect diet to keep her fueled correctly to the amount of external stimulation (TV, games, etc) that she can have during the week just to get the optimal benefits from being here. She just has a hard time when that is tweaked at all. Oh well, can't win them all everyday. She still did get her record though. 5 more seconds and she can begin to learn to take independent steps. Przemek needs her to consistently be at 40 seconds to do this. We finish up with Przemek this week. Take next week off and return to 2 weeks of Sylwia. It is a nice schedule for Josie.

We got to have a lovely dinner at Roger and Jeanie's with Aunt Harriet tonight. Jeanie and I wanted chicken piccata at the club on Sunday, so instead Jeanie made it tonight. Delicious! What a treat. Theo helped me finish it off. OK, off to bed. Exhausted after a big day. Jenny and Josie

The Race Is On...again

2010-08-09T18:10:00.001-07:00

The runners taking their marks...if one could stop laughing the race could officially start!!

The horn has been blown and they are off. First lap is inside the gym. They are going like gang busters. Ponytail power is definitely ahead during the first lap.
They round the first turn heading for the hallway. Ponytail power has a slight advantage on the turn...then she stopped to pose for this picture. Loves the camera. She starts her motor again and she is off like a bullet.

Her opponent is falling behind and needs a short break. He watches Ponytail Power with amazement. She is definitely picking up speed at this point. He must come up with a strategy to beat her.

It's no use Ponytail Power wins again!!! The crowd goes wild, her opponent graciously shakes her hand and congratulates her on a fabulous win. Now the only thing getting in Ponytail Power's way is her canes. She can't move them fast enough for how fast her feet want to go. YEAH PONYTAIL POWER!! We all are so proud of you. You not only beat your opponent today, you are beating all the odds in your life. We look forward to the next race. Tune in tomorrow race fans for another edition of Racing with Ponytail Power. Until then, Jenny and Ponytail Power Josie

Oh, one more funny thing. When all the celebrating was happening, I was singing to them "We are the Champions" and low and behold it started playing on the radio. Then we really started singing it. Thanks radio Gods. That was perfect timing.

PS. For instant replay of the race, tune into the bottom video screen. Just kidding. The actual race video won't load, but this one will. It isn't the shining example of how great the race was today, but it offers awesome commentary by Josie. She is hysterical in it and Przemek is even funnier. You have to hear his responses to her. They are like an Mutt and Jeff.

Summer Weekend

2010-08-08T20:55:00.000-07:00

Swimming at the Little Club. The little guy standing on the deck is Luc from Haiti. Even though he looks and weighs what a 5 month old does he is 18 months old. Cute a a button!! He is here through Healing the Children for a very complicated heart surgery on Aug. 19th. Please keep him in your prayers.

Kids jumping into the pool. Josie is already under water!!

Grant and his boys

Another beautiful summer weekend. Not a whole lot to report. Lots of swimming. Perfect weather. Last night Josie and I went to dinner and to see Ramona and Beezus at Partridge Creek Mall. We had a lovely dinner with the Michigan Hulls at the country club tonight...always a treat. We are gearing up for one more week before we take a week vacation. I think it will be perfect timing for Josie. I know she has it in her to do one more hard week mentally and physically and then we will give her a mind break for a week. We will definitely keep practicing the walking while away so that she continues to gain speed. Hope you all had a wonderful weekend. Jenny and Josie

Confidently Walking

2010-08-07T06:51:00.000-07:00

Walking to the mirror and hugging herself

Walking to Melissa and Sylwia

We ended an incredible week of therapy with another "mind" breakthrough from Josie. She is trying to walk without anyone around her. We started on Thursday by having her walk about eight feet between Przemek and I. When she did it the first time she was kind of nervous which made her bend her knees and wobble a bit. We did it 2 more times and the other 2 were with ease and confidence. So today she actually told Przemek to stay were he was she was going to walk to me on her own. Przemek said that he can now confidently say she is independently walking with her canes. We all are so excited. I happiest that she is the one who wants to do this and it's not me coaxing her along. She is having so much fun with therapy and with her walking. We will continue to work on speed and perfect her balance so she can really get around the house, classroom, etc independently. The only glitch now is the missing skull. She absolutely can't fall so she can't really ever walk totally by herself until we place a skull in. It's always something. Przemek will begin the next stage towards independent steps without canes. This could be a 6 month to year process. We are happy to start it. As we gratefully end this great week, we thank you for checking in on us. Jenny and Josie

You can hear her in this one telling Przemek to let her go on her own. Sorry about my chatting in the background I was on a conference call.

8 Years since separation

2010-08-05T20:12:00.000-07:00

It is with great pleasure that we celebrate the girls 8 years of separation. Wow. When they wheeled them into the operating room 8 years ago this morning they were in for the fight of their lives and we didn't know what the outcome would be. The only words to describe it is, you fought and you won!! We also won the opportunity to have 2 angels remain here on earth with us.

It has been a journey that has included so many people from day one. Our dream one day is to meet and hug the nurses that took such great care of the girls during their first 9 months of life in Guatemala City. They taught them to love and to bond. We can't thank enough the courageous medical team at UCLA Medical Center lead by Dr. Jorge Lazareff and Dr. Henry Kawamoto for saying yes and then pouring there hearts, souls and medical expertise into saving these girls. To Barbara and Swati, their lead anathesioloists who not only did a great job, but have continued to love them and remain in their lives. Thank you to Childrens Hospital Los Angeles lead by Dr. Mark Urata, who had them at UCLA and then continued their care at Childrens Hospital Los Angeles(CHLA). Mark and Michelle Urata- you may be our doctors but more importantly you are our dear friends. To the clinics at CHLA that continue their care...Cranial Facial, Orthopedics, Neurology, Neuro Surgery, the Rehad unit especially Susan Knight and Jen Loiselle. Noreen Clarke whom we could not navigate CHLA so well without and for her continual love and support. We have had a lot of surprises that CHLA have dealt with so kindly and beautifully. To our communities and churches that have embraced us and welcomed the girls with open arms. To our friends who we turn to for continued support and to give us the normalcy of life in our social settings. To our therapists and teachers who continue to strengthen them everyday. To Liz Bunkell for saying yes to both girls and bettering them everyday. To our Michigan therapy team, Przemek and Sylwia who are making dreams come true right in front of our eyes.

To our families who we absolutely could not survive a day without. What you do for us and the girls is miraculous. We might have said yes initially to taking these girls, but you also jumped in to make it the best possible. To Mending Kids International that really rolled the dice on a case way out of anyones league and took it on like champions. To Robyn and Grandma Cris for more then anyone can ever imagine. There aren't enough words to say to extend our gratitude. To Lori Jo who died 20 years to the day of the separation of the girls. Because of the death of this dear 9 month old baby, Cris Embleton vowed never to let a child die in front of her that given medical treatment would live. Josie and Teresa luckily crossed her path and she indeed did what it took to save their lives. You can't imagine a more heroic lady than Cris. We are proud to call you Grandma. And to Wenceslao and Lety for being the bravest humans I know to selflessly allow the girls to be where they can safely live out their lives near the best medical personal we can assemble. You are our heroes. Most of all, to our gracious Lord and our mother, Mary, who has chosen and guided the path of these girls. We all are eternally grateful that you picked us to be amongst these special souls to teach us the real meaning of life and love.

Tonight we squeeze these girls a little tighter and rejoice in the past 8 years of this miracle. They have taught us so much about strength, love, courage and pure joy. Maria Teresa (Teresa) and Maria de Jesus (Josie) we love you and honor you tonight and always.

Lovingly, The Hulls and The Cajas

Walking Buddies

2010-08-03T17:48:00.000-07:00

Josie

Melissa

Closer...

Almost there...

Josie almost took Melissa down she was so excited. Notice how hard Przemek is having to hold onto her!

Today at therapy, Josie and Melissa got to walk down the hall to each other. Josie thought this was just a kick and could barely contain herself. It was good to see what she would do with little concentration. She actually did really well. It is one thing to walk in a perfectly controlled environment like Przemek's gym and it is another thing for her when you add distractions. Melissa did incredibly well, too. She is learning to walk with one cane and it takes sooo much concentration especially because it is so new. She is handling it like a champ. No one can believe how hard these girls work. I am posting 2 minute videos that show the goodness and fun of the day, not the sweat and work that goes into the other 2 hours and 58 minutes that it takes to get to these glorious moments. Good work girls!!

As for the rest of therapy, she had another incredible day. Her attitude is astounding. She is so excited to go everyday and have this walking competition with Przemek. She has such a competitive side to her and there are very few applications to be competitive. She contributes her wins to her ponytails. Przemek kept asking her today if she wanted to take them out so he could beat her in their race. She would just giggle away. Then he would rub one ponytail on his face telling her it was going to give him power...again, more giggles. It is fun and a relief to see her really enjoy what she is doing and appreciate that she can do it. My mom and dad were calling her Speedy Gonzalez which she thinks is funny. I won't blow this up to something it is not, she is fast for her, but not yet up to even slow walking pace. We will get there one good race at a time. So as Speedy would say, Arriba, Arriba. Jenny and Josie

The hall walking begins

The meeting in the middle

Ponytail Power

2010-08-02T18:31:00.000-07:00

Ponytail Power in full force

Speed demon
She is off to the races with Przemek

...and she officially wore Przemek out!!!

OK, so we don't know what to contribute the greatness that took place today in Przemek's gym except the magic of the ponytails. Josie has insisted on wearing her ponytails ever since her Chickadee performance. She loves the way they bounce and look. Today she came leaping into the gym to show Przemek and Sylwia. She was in such a great mood. She worked really hard during her weights. As soon as Przemek put her on her canes she just clicked with it. Holly always says that you can never count anything out with this method because you just never know when it is going to click. Today it clicked. From the moment she got on her canes it just all worked. She was so balanced, she hardly ever fell to the point that she couldn't recover it herself and her legs were so strong. I will post video on the bottom. Her red canes that we are back to really seem to help. Przemek and Sylwia's hard work is finally bearing fruit. Josie was so pleased with herself she wanted to keep walking. It must have felt great to her as well. She also did incredible standing. Consistently in the 20's and a few in the 30's. She is making serious strides in this department as well. Grandma got to see all of this today. Josie was proud to show off.

Sadly, we had to take Grandma and Grandpa to the airport tonight. We loved having them here and will miss them. We get to see them in 2 weeks. We have officially made it through the longest stretch without seeing of CA family. I'll tell you time has just flown by. We need all the time we can get here working so hopefully it will slow down a bit. Night, Jenny and Josie

I wish you could all see her smile on her face the whole time she was walking. Amazing to see her glow. The first video is more of her warm up. The second one is where she really picks up speed.

Beautiful Sunday in Grosse Pointe

2010-08-01T18:45:00.000-07:00

Gorgeous day here and lots of fun to spend with family. We went to church this morning with my parents, Susy, Juliet, Harriet and Jeanie Hull. After that we did a couple errands in the village. Josie was so excited to take Grandma and Grandpa to the Little Club to swim. Quickly back home after that for much needed summer naps. Back to the Little Club for a wonderful dinner by the lake. It was so nice to be together. We are now getting ready for another big week of therapy ahead. Josie made so much progress last week, I am excited to see what she does this week. Happy summer evening, Jenny and Josie

PS. Liz- we switched back to the red canes last week and they made all the difference with speed, left arm and balance. I will post video this week so you can see it.

CHICKADEE Performance Today!!!

2010-07-31T18:55:00.000-07:00

Today is the day Josie has been waiting for for 364 days...her synchronized swim performance. She is in the youngest group called the Chickadees. Absolutely adorable. She finds great enjoyment in being in a team sport. I wish we could start a team back in California. The team has been so sweet to her and the coaches were amazing, especially Colleen who has helped Josie specifically for the past 2 years. I will let the video tell the story and the smile and her face in the pictures will tell the rest. It is just a miracle that she can even attempt to do this and just 7 years since separation.

Peyton, Josie and Cambelle

Chickadee Team

Waiting for the show to start

Colleen and Josie

Mrs. Bergman (Josie's teacher in Michigan) came to the show and brought Josie beautiful white roses. Thanks Mrs. Bergman!!

My Little Chickadee... I am so proud of you and all your hard work, but especailly for the big smile you always have.

Paper Plate Awards...the coaches give each girl a paper plate with a cute name on it. Josie was given the mermaid award because all she wants to do is swim.

Josie and her coaches
Today is the day Josie has been waiting for for 364 days...her synchronized swim performance. She is in the youngest group called the Chickadees. Absolutely adorable. She finds great enjoyment in being in a team sport. I wish we could start a team back in California. The team has been so sweet to her and the coaches were amazing, especially Colleen who has helped Josie specifically for the past 2 years. I will let the video tell the story and the smile and her face in the pictures will tell the rest. It is just a miracle that she can even attempt to do this and just 7 years since separation.

We are so happy to have Grandma and Grandpa here for a few days. They got to come see the perfomance. We went on the Eger's boat last night with the Livingstons. We had the most lovely evening. It was fun to have 5 Healing the Children on board...4 of which have been adopted the other here for open heart surgery. What great friends we have. Thank you all for taking such great care of us while we live in Michigan.

Chickadee Swim Video

Cali Love

2010-07-28T19:01:00.000-07:00

Josie's new shirt that I couldn't resist buying her (even though it is a rough looking green color) says Cali Love on it. This definitely represents my California girl. These 2 years we are really bi coastal girls...Pacific Coast to Lake St. Claire Coast split 6 months and 6 months.

Chickadees was so cute this morning. They actually really have the routine down. I tried taking away Josie's goggles today because she isn't supposed to wear them in the show. She did a good job without them and didn't ask for them back. After practice, she was staying in to swim with a few of her friends. I went and got the goggles so she could wear them. All of a sudden Colleen (her coach) and I realized that she had so much more spacial awareness and could stand on her own just because she could see. So...there will definitely be goggles worn at the performance on Saturday. Wow, what a difference. Her sight must dramatically affect her balance.

Therapy was interesting today. She thought someone said something negative about her this morning to me like she wasn't working hard. This was entirely untrue. The person came into the room where I was to get a patient file and didn't say anything about Josie. Josie burst into tears and had a hard time pulling it together and it was only during massage time. I thought we were doomed for the day. I decided to stay the whole time in the room because I could see we needed a little "mommy" guidance today. She ended up pulling it together and did a remarkable job with everything. She was so focused and faster on her canes. Her balance responses kicked in better during standing. Przemek and I were pleased that we got as much out of her as we did. It sure wasn't looking good in the beginning.

Josie got a Cuisinart Soft Serve ice cream maker for her birthday. Tonight we made the vanilla ice cream mixture for it. It has to refrigerate all night so we will make it with Grandma and Grandpa tomorrow. She can hardly wait for ice cream but especially for them to come. We are hoping my dad is ok to travel so far. We will keep him mellow here. She just really wants him to come to her swim performance. Ciao, Jenny and Josie

This is the funniest video. It is Sylwia teaching a Haitian and Guatemalan to count in Polish. Caught my funny bone since they can't speak a word of their own native languages.

Dinner with Josie's Dream Team

2010-07-27T18:52:00.000-07:00

Josie's is the luckiest person to have a month long birthday celebration. Tonight we had the great pleasure of celebrating with Przemek, Slywia, Maks and Holly. We went to the Red Lobster which she thought was a wonderful treat. She and Maks were both a bit scared of the lobster when the waitress showed it to them. Too cute. Holly brought Josie the nicest cake and the Tokarskis gave her an adorable pink dress that looks just like her. Przemek, Sylwia and Holly - we are so glad that you all are not just her therapists but our great friends. Good to be away from the gym and all have a good laugh.

This morning at Chickadees it was picture day. The girls practiced first and then took the picture Except for the standing part, Josie can do the routine independently. She is thrilled with her progress and ability. She loves being part of the team. The big show is on Saturday. I will film it and post it.

Josie worked really hard again at therapy. She is making improvements everyday. She worked with the new adaption to the parallel bars. It is the beginning, but she will get it. Her standing is getting better, too. She is really starting to make the necessary corrections to stand longer independently. She is bone tired at the end everyday. Przemek is doing a ton of strength training before she does her standing and walking. Her legs are like Jello at the end of the session. She will get stronger faster this way.

Off to get ready for another day tomorrow. Night, Jenny and Josie

Back with Przemek

2010-07-26T19:06:00.000-07:00

Josie is officially back with Przemek today. She is so lucky to get to work with both he and Sylwia. The lucky part of the next 3 weeks is that her buddy Melissa is working with Sylwia while she is with Przemek. It is great to be there with the Egers. What a treat for both Josie and I. We just need Janie and Reggie there and the gang would be complete. Some day!!

It was a mixed up day today for therapy. Yesterday when we returned to the airport from Houston, I noticed that my car looked really low in the back. I tried to drive it anyway, but I got flashing signs to pull over. I turned around and went to Enterprise and rented a car and parked mine in the outdoor long term lot at the airport. Today I had to go back and deal with it all. Very lucky for me is that Lory was at therapy today. She was able to bring Josie home for me while I was with the tow truck and car. I dropped Josie with Przemek and went back to the airport. It was quite an experience, but thankful it went OK.

Meanwhile, little miss Thing was doing her thing. Przemek called 5 minutes after the workout was complete to give me an update. He was so pleased to report that she stood 25 seconds for him, but the good news is that she consistently had 22's and
23's. Usually if she hits a record it is once. This time it was consistent. He held down her left foot one time and she went to 36. She is definitely improving. He is going to continue the standing and also increase the walking with canes. The ultimate goal is to get independent steps. However the imminent goal is to get her practically running like Melissa on her canes. We want her to be so proficient that she can access her community on them especially the classroom at school.

Thanks for checking in. We are ready for more fun to happen with Przemek and will be pleased t share the progress with all of you. Jenny and Josie

Happy 9th Birthday Josie and Teresa

2010-07-25T20:35:00.000-07:00

The girls are officially nine years old today. In our world the birthday song is a victory song and you guys completed another victory lap today. We love you both so much and are so proud of the wonderful little girls you have become. Our true angels on earth.

Josie and I arrived back to Detroit from Houston tonight. I was there on business at a wonderful conference. Josie was such a trooper the whole time. She did get a bit of swimming and fun in. Everyone is so loving and engaging with her we are blessed.

We came home to a wonderful surprise party for her at the Egers. We were surprised to have the Livingstons and the Malleys there too. Thanks you guys for making Josie feel so special and being great friends to us here in MI. Josie even got to blow out her candles while in the Jacuzzi. I can't think of a better place for her to be. She is half fish.

We start a big week of therapy by moving back over to Przemek's gym. He has some big surprise up his sleeve for her walking. He won't even tell Sylwia. Melissa gets to start with Sylwia tomorrow at the same time Josie is with Przemek. The girls are happy to be going at the same time and I am beyond thrilled that Lory will be there too. It will be fun to carpool. It is good motivation for Josie to have Melissa there.

Thanks to all for the happy birthday wishes. Josie loved getting them. It is her 4th year to celebrate in MI. Good night, Jenny and Josie

Flower Power

2010-07-21T18:07:00.000-07:00

Diva Flower Power

Look at that adorable, diva looking flower that sits over Josie's head at therapy. Josie decided it needed to wear her sunglasses today. Great day at therapy. Her standing was pretty good and her weight training was excellent. She is getting so strong. Przemek gets her next week and he has some trick up his sleeve to do with her. He is taunting all of us and won't tell us his new brilliant plan. OK we will wait until Monday. Sylwia has done an incredible job with her. Now the next few weeks she is with Przemek. You guys are the best and we are so lucky to be here working with you.

This morning was Chickadee practice. She was able to do most of the routine without me touching her. The hardest part isn't the movesit is when they stand back up. She is getting better. I don't know if she is fast enough to do this during the show without assistance. Oh well, she LOVES being a part of it. Thank goodness Colleen will be in the water with her during the show. Someone has to be no matter what because the seizures are so frequent. She must have 10 every morning during practice. They seem to pick up frequency in the morning. We did start her new Limictal today. Crossing our fingers that it works. It just takes a long time to get up to the right dosage.

We packed for Houston tonight and will leave straight from therapy tomorrow to the airport. We will do the morning therapy time tomorrow so we can make our flight. Josie is thrilled to be going to a hotel. She loves them. We will be returning to Michigan on Sunday evening which is she and Teresa's birthday. I can't believe they will be 9 years old. Thanks be to God!! Their separation date is just 10 days after their birthday. 8 years for that...wow.

I must get to bed. Fighting a cold and a migraine and don't want either for the trip. Night, Jenny and Josie

Walking with a message to Luke and Matt. Her walking looks a bit slower because the new cane placement. She is being forced to us almost all legs instead of hanging on her canes like she got so good at. Always switching it up to make it better. PS. Liz, I look forward to hearing you input on this. Can't wait to show you in person in September.

Better Day today

2010-07-20T19:38:00.000-07:00

After 12 hours of sleep last night, Josie woke up happy, positive self. Sorry that the post last night was harsh, it was just that kind of day. Today she went to Chickadees which is her favorite activity. Had a ball there. She worked so hard and proficiently for Sylwia today. I took video of her walking which I will post tomorrow. She played in the water at the sink tonight for another hour which meant she was on her feet for about 4 hours today...getting strong. We started to pack for our trip to Houston that we leave for on Thursday. All in all a good day. There was quite a bit of back pedaling on the part of the school. We will not be returning to the summer school program, but I think this situation has bettered our situation here for the fall. More on that as it takes shape. Sue Banner has been a dream to work with from day one last year and continues to do so now. She has the best interest of the students and will get them what they need and deserve. Thank you Sue, I knew you would save the day.

Off to bed. Jenny and Josie