Saturday, July 31, 2010

CHICKADEE Performance Today!!!

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

Wednesday, July 28, 2010

Cali Love

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.

Tuesday, July 27, 2010

Dinner with Josie's Dream Team

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

Monday, July 26, 2010

Back with Przemek

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

Sunday, July 25, 2010

Happy 9th Birthday Josie and Teresa

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

Wednesday, July 21, 2010

Flower Power

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

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.

Tuesday, July 20, 2010

Better Day today

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

Monday, July 19, 2010


Perplexed is about the only word to describe today's events. Back in April I signed Josie up for a summer school program here called Fast Reading that is for 3 weeks starting today. We have heard remarkable things about this program from friends and have had high hopes that it will be a method that will help Josie's reading. We had to get really organized in order to make it all work with swimming and therapy. Anyway, we went to the first day. She was thrilled to be there and was actually looking forward to beginning her new reading adventure (not her favorite to start with anyway). She did a good job, of course made everyone in the room feel comfortable and then we left to go to therapy. Just as we were about to arrive at therapy, Mrs. Duffy the head of summer school called me. This is what she said, "Hi Mrs Hull?" "Yes" "Your daughter, Josie, can't come to our Fast Reading program because she is handicapped. We will refund your money because she can't come she is handicapped." Dead silence...did she think I signed her up for the cross country running team?! After I picked my jaw up off the floor, I tried to find out why a child that couldn't walk wasn't allowed to learn to read in her program. She was at the same ability as the others in the class. I found out that her mental ability wasn't the issue it was her physical issue. I told her I would be with her so they didn't have to worry. Nope, she was handicapped I wasn't fingerprinted (which of course I would run out and do), she just wasn't allowed to be there. Wow. I respect that there are situations in life that we are not all privied to no matter if it is for race, religion, sex, abilities I get it, but I have to say I am really perplexed why a child with physical limitations can't sit in a chair and learn to read.

The saddest part of all this is that Josie heard the conversation. I have spent the rest of the day working through tears of complete failure. She absolutely fell apart at therapy (Does Mrs. Duffy want to pay the bill for the day? It is a lot more than her 3 weeks of reading class.) I had to convince her that all her hours of hard work are paying off and that she will achieve her goals. I had to try to explain that even grown ups don't know right from wrong and that we have to be forgiving. As she was going to bed tonight she looked up and said, "Mommy, if I had my motorized stander I could have gone in the classroom by myself and then I could have stayed." Yes my heart breaks tonight. My heart breaks for my hero that sees the world through rose colored glasses, that makes sure everyone around her is happy and comfortable in any given situation, and that always has a smile on her face no matter how hard something is.

So Mrs Duffy, you have taught me humility today. I thank you for that. You have also taught me to remain among people that will love and support us for who we are. Mrs. Duffy, I pray for you tonight that should you have the fortunate pleasure of meeting another child like Josie that has to fight so hard through life and is happier than anyone else who has every opportunity in the world and with a working body. I hope that you will learn from them because you were lucky to have been in their presence. Thank you Mrs. Duffy for renewing my faith in the great people around us. So to all of you reading this we love you and consider you all amazing blessings in our lives. We truly can't do it without all your love and support. Good night and God Bless you all because we are blessed by you. Jenny and Josie

Sunday, July 18, 2010

Michigan Summer Weekend

Just another wonderful weekend in Mayberry, I mean Grosse Pointe. Unfortunately, I don't have any pictures to post. We had a fairly quite weekend. We went to the Easter Market yesterday with Jeanie. It is like a huge farmers market. Great adventure and lots of delicious fruits and vegetables. Josie was thrilled to get so many Michigan corn. They are super sweet right now. We took a summer nap for a couple of hours, much needed after saying up until after 11 PM with the cousins. What a treat to be with them. My cousin Suzy we also here. She lost her beautiful 16 year old son, Tim, to cancer 3 weeks ago. I am in awe of her courage and strength. Her battle alongside her brave son is one of the greatest love stories ever. They both fought for 7 years. I am humbled by their story and faith. Suzy, we love you and are so proud of you.

After church today, we watched the end to a very inspiring British Open. What another remarkable story and life changing moment for Louie and South Africa. WOW and to do it on Nelson Mandela's birthday. Hollywood couldn't have scripted that any better. After that we were off to the village and then to the pool. We left the pool went to the store and on the way home got caught in a rain storm. Josie was tucked away all snug and dry in her bike trailer. I was weathering the storm, literally. We had to laugh the whole way home as it would pour and then stop and then repeat. I was a wet rat when we finally arrived but it was so funny to Josie it was worth every moment of getting soaked.

Tonight we watched The Blind Side. It was the first time we had seen it. Inspiring. Can I adopt everyone from the projects of Detroit?? Josie loved it too. During the movie she would just spontaneously reach over an hug me. She is such a sweet, sensitive soul. Off to bed to get ready for a big week. Josie has Chickadees and also starts the Fast Reading program at the local elementary school tomorrow. It is important to get her proficiently reading. I hope this program will accomplish that. Night, Jenny and Josie

Friday, July 16, 2010

Possibly Some Independence???

Look at how straight she is in this.

What a very interesting day. To give you a little background first. As most of you know, I refuse to succumb to a wheelchair for Josie yet. I know that it is almost a fact that the moment children get into wheelchairs it is almost impossible to get them to walk. It is hard work to help these children accomplish any kind of mobility. I have been lucky that I have had people working with Josie who support this no wheelchair yet notion. The one thing I don't want to deny her is some kind of independence especially as she is getting older now that doesn't hinder her walking progress. I got a call from Joy (her P.E. therapist from home in CA) who is always onto of the latest and greatest in the physical therapy world(she is the reason we are even in Michigan). She told me that she has found an electric stander. The bad news is that there isn't a vendor in California so there isn't a demo there, but the good news is that the company is based in dog we are here. I got ahold of the company on Wednesday and Todd came today with the Standing Dani. I can't even begin to tell you the greatness of this machine. She is standing in perfect alignment so the health benefits alone are so remarkable you can't believe it. The demo had more accessories on it that she doesn't require which is great. Also the wheels on the demo are wheelchair wheels, she will be getting 12 inch wheels. Todd and I put her in it and he turned around to get something. As he turned he was saying that he would teach her how to work the joy stick so she could make it go. Too late, she was already halfway out the door and then headed down the hallway by herself on the way to Przemek's room to show him while calling out, "see you later Mom". The greatest words ever to hear from her. She spent the next hour and a half using this. She went all over the gym, outside, down the hallways by herself. We had to drag her off of it after that time. She went to bed dreaming of getting her own. Freedom!! I am thrilled and now will start the process of getting insurance to cover it so we can get it for her. They are really expensive.

What a glorious day. Tonight we got to spend time with some of the Hull cousins that came into town. What a treat to see all of them. Josie was thrilled to have the younger cousins here to play with. Off to bed after a big exciting day. Sweet dreams, Jenny and Josie

Thursday, July 15, 2010

23 seconds, no wait it was...

So let me set the scene for you..I walked in towards the end of therapy to see the standing exercises. Josie and Sylwia were so excited to show me the 23 seconds sign!! She had gone from 18 to 23 in a day. They were so delighted. Sylwia told Josie that if she did it again for me she could go home. 3 times later she made it to 28... yes 28, 28, 28 I am still dancing. We are almost half way there until she can learn independent stepping. She went from 18 to 28 in a day. The best part is that I got it on video(see below). We all are so pleased with her determination. She wants this so much and she can see it working. So proud with her 28 seconds sign. Look at how amazing she looks standing there. The wall is supporting her, but she is so straight and strong Celebrating together. They work hard together. Hey guys this picture is old news! I think the number is 28 Here is our new bike and trailer and Josie in it ready to go to her morning Chickadee practice. The Diva Swim Chick We had such a nice evening at the Little Club last night with the Egers. We are so happy that we were afforded the opportunity to join there as out of town members. Josie and I rode on the bike and trailer down there. It was a beautiful evening out. Every time we get on the bike she tells me that this is living! She has heard that a few times before I think. We rode home after dinner in the dark with our lights on. A new adventure in our world.

Now onto today, after we arrived home after therapy today, Josie walked with her canes inside the house and was headed for the kitchen. There is a slight slant in the first hallway and in 2 years she has never been able to compensate with her weight shifting to stay up by herself down all the way down the hallway. Tonight she conquered it. She was staying up and adjusted so well. She and I were so pleased with her walking. Right when we got to the door to our bedroom and bathroom she announced that she needed to use the bathroom. I told her to leave her canes and we would come right back to them. She told me no. I thought she meant no she didn't want to keep doing them. I told her that Sylwia really wanted more practice at home tonight. She told me no, I don't want to stop for the bathroom I am walking so well I don't want it to stop...Love Her! She has the bug to do this. She marched herself all the way to the kitchen table, let go of her right cane and held the table and got to the chair. I put her up in it, she exclaimed, "I did it" and then we went running and laughing to the bathroom. Thanks for checking in. See that the Internet holds up tomorrow, I will post again. The internet has been so spotty here that I have had a harder time posting and the emails are totally backing up. Oh well, long live summer!! Jenny and Josie

This one is Josie standing for 28 seconds

This is her celebrating