Friday, July 31, 2009
We are rounding third base and heading for home...literally. We are in the final stretch of this session. Josie had a good day at therapy not award winning. She actually did a lot more walking with the walker today and less cane work. It is hard to find the perfect focus by Friday so Sylvia decided to go for gaining more strength then having disappointment with the canes. She ended up walking about 6 rounds by herself with the walker. She is very proficient in this now. I think she was disappointed in herself for not doing better with the canes. She broke into tears when I walked in saying she didn't do well today. She is obviously putting a lot of pressure on herself. I don't want her to get discouraged for one moment. She is a champion. We worked on the positive spirit at the mall and out to dinner. She was thrilled to do something different tonight. I am so proud of her. She fell asleep tonight feeling good and happy.
She was hilarious with her new sunglasses. She was acting like a rock star and saying "Good night Detroit" like the Jonas Bros. She keeps me smiling. Good night to all, Jenny and Josie
PS. Check out the fashion accessories ie: sunglasses and head band. All picked out by the Diva herself.
Thursday, July 30, 2009
Today, Cousin Suzy Hull came to her mom's (Aunt Harriet). It was such a treat to catch up for a moment with her and to have her meet Josie. We are fortunate to be here to see the cousins that we would normally not see so often. Suzy's son Tim fought cancer for the past 3 years. It returned for a second time and he was fortunate enough to receive bone marrow from his older brother, JT. It worked and he is cancer free. What a journey that was for them.
Josie had another great day in therapy. She is moving forward everyday which is so impressive. Her therapists are happy with the pace in which she is improving. We got to hear about what Przemek's new goals are. When we return at the end of August he hopes to be using the canes as just practice and gaining strength as he is using the walker now. He anticipates by October to be moving to "next stage" that is independent steps. This is so far out but it is fun that it is even being discussed. Trust me, we haven't begun to master the canes but in Przemek's words we have turned a corner and a very large one.
During therapy today, mom and I ran out to the PGA Tour event that is here in Flint this weekend. We didn't get to stay but long enough for a quick hello to some of our friends. Josie and I will go back out this weekend to see the ones we know who make the cut. Fun to be back in that world for a moment. It seems like a life time ago...but a great one.
One last thing, Jeanie and I went this morning to enroll Josie with the school district here today to get a teacher to the house in the fall and also for first communion classes. It makes staying so official. Thanks Jeanie for going with me.
Hope all is well with everyone. Thanks for your support. Jenny and Josie
Wednesday, July 29, 2009
After therapy tonight we got to go to The Hill restaurant with Jeanie, Roger, Aunt Harriet, my mom, Josie and I. We had such a nice time visiting. Josie loved her new sweatshirt from Roger and Jeanie. It happens to be bright pink...I bet no one saw that coming! It was fun for her to realize that every ones last name at the table was Hull. Harriet is Josie's great, great aunt. We are now staying at Aunt Harriet's. Always a treat to be with her and at her lovely house. Harriet goes up to her cottage up north on Friday and Josie is sad she is leaving. We will get to see her again in the fall.
Thank you to all that are taking time to read this blog. We are grateful for your interest and support. Lots of Love, Jenny and Josie
Monday, July 27, 2009
We got to go at Aunt Harriet's for a wonderful dinner and visit tonight. Always a treat to be with her.
We are all really tired tonight so I am going to keep this short. Miss everyone and looking forward to coming home for a quick rest before returning. Love, Jenny, Josie and Grandma Carol (Thank goodness she is still here!!)
Sunday, July 26, 2009
Hope everyone had a good weekend. Love, Jenny and Josie
Saturday, July 25, 2009
I will put up the video of the big show (or just the Chickadee part). After the show we had a team dinner and everyone sang happy birthday to Josie. It was fun to have Roger, Jeanie, The Savages and my mom there to celebrate with us.
One funny thing...apparently Josie is feeling confident in her new strength and ability. As my mom and I were unpacking the car this morning we walked back out to get her out and she had taken off her seat belt and was standing up holding on the back of the headrest. I nearly fell over. I was both happy and scared. Later this evening I was inside the party and my mom was helping cut the birthday cake. Josie was outside with some of her friends and the Savages opening gifts. I walked out and she was standing at the table barefoot. When I commented on it Fay Savage said she was doing that earlier. OK new rules no standing without mom, grandma or a therapist there. I never thought that would be a rule and delighted it is.
Enjoy the pictures and videos. It captures the day better then my explanations.
Happy Birthday to our friends Hillary Raulli and CJ Crawford. We miss you!
Love, Jenny and Josie
Grandma Cris and Robyn- Without you we wouldn't be celebrating these wonderful girls. There aren't enough words to tell you how thankful we are for all you have done for the them.
To all the Doctors, nurses, therapists, teachers, friends and family, it is with your great dedication and support that we can sing a victorious birthday song today. You all have a part in keeping them healthy, striving and fill them with joy. Thank you a million for all you love and support.
Love, The Hulls, The Cajas and The Alvarezes
Friday, July 24, 2009
She did it!! She walked independently with 2 canes. This is how it happened...she was doing her walking and Przemek decided that she was ready to take a couple of steps, something he didn't expect to try until Friday or next week when she works again with his wife, Sylvia. She took 3 steps. I wasn't there to see it so when I arrived he asked Josie to show me just 2 steps. She agreed even though she was tired from her 3 hour workout. She ended up taking about 15 steps. We couldn't believe that she took so many on the first day she ever walked and especially at the end of her workout. Yeah Jos!!
I videoed the whole thing. Before you watch it let me explain a couple of things. First, don't be alarmed at Przemek's loud and stern voice. He has to do this so she cues fast enough not to fall. It helps the brain think and retrain faster. It took me a while to get over it a couple of years ago. Josie isn't bothered by it at all. She adores him and know that he is just helping her. In fact, what you don't see at the end of the video is them hugging after she walks. I was so excited that I let out a Wow in the middle and you can see him scold me. She can't break concentration because she could fall. Secondly, It looks like he his holding her and helping her but he doesn't ouch her until she begins to fall at the end. You can see him wiggle his hands to show that he isn't touching her. He has to stay close since she can easily fall.
After we left, I called Susan Knight, her PT at Childrens Hospital LA, to tell she and Jen and then I called the family. About half way through she says to me, "are you going to call everyone?" in a tone like it is not that big of deal, it is what is supposed to happen. I love her mindset. Not satisfied until she runs.
We also got to pick up Grandma at the airport last night. She is visiting for a week to see the therapy, the Chickadee performance and be her for her birthday. It is so nice to have her here.
Here is the video. Hope you enjoy it. I know I will for a long time. Love, Jenny and Josie
Wednesday, July 22, 2009
Please add our little 18 month old friend, Moriah Nelson, into your thoughts and prayers. She has had a really tough battle and is back at Childrens LA after being at Stanford for 8 months. You can read more about Moriah and her absolutely amazing family at www.momentswithmoriah.blogspot.com. She is another warrior in this world. We love you Moriah, Justin and Victoria. Keep fighting!!
Ciao until tomorrow, Jenny and Josie
Tuesday, July 21, 2009
This is the beginning part of the routine. The song is the part in Peter Pan where the croc is coming.
Monday, July 20, 2009
I want to give you a taste of how remarkable this center is. Everyone thinks that we came from so far away but really we are one of their closer patients. In the clinic currently are 2 Saudi Arabians, Egyptian, Argentinian, Mexican, Italian, 1 from New York and 1 from Arizona. I don't know everyone during the morning times, but that is amazing. 5 therapist from Columbia will be coming to be trained in this method next month and Izabella spends most of the year traveling internationally to train therapist in their countries. The US better catch on quickly (better yet insurance companies better get on board). You can rehab people in a quarter of the time with this method. It would end up saving money. Susan our PT at Childrens LA says this is the way therapy is moving to. I hope so. In saying that it is remarkably international they also come in herds. This poor little Saudi girl today who is fairly damaged had 8 people standing over her while she was trying to work out mom, dad, grandma, grandpa, 4 siblings. From my understanding this is typical of the Middle Eastern families. Poor Chris the therapist took it all in stride with everyone telling her what to do. That would motivate me to walk or run away. Actually she isn't even close to walking. The Egyptian girl only had 3 people with her today. Hopefully that even decreases. These kids are working so hard I hope the families can really appreciate that. Don't know why I decided to share all that unimportant information. I just find it, well, fascinating??!
We are off to bed and up for Chickadee practice in the morning. The big show is this Saturday on her birthday. Lots of practicing to do before then!! She got to use a nose plug for the first time today and loved it. So funny looking but effective. I will try to get some pictures tomorrow. They want them to wear their hair in 2 pony tails for the show. Hard to get half a head of hair and half a head of wig into 2 pony tails. I will have to get very creative with this...yikes. On that odd note, goodnight and God bless, Jenny and Josie
We are about to leave for therapy. It is raining so hard again we need a boat to get there. Cross you fingers for a good walking week. We really need it. Will post about the days activities tonight. Love to all, Jenny and Josie
Saturday, July 18, 2009
Wednesday, July 15, 2009
After therapy tonight we went to Samantha Savage's 8th birthday at The Little Club. Darling club on the lake. It was Splash Bash so it was a big swim party. Josie was so happy to be included. She swam with the kids and I didn't even have to get in the water...of course I didn't take my eyes off of her and I think we made the lifeguard a tad nervous!!! She was proud to be so independent. There was a DJ that had the kids dancing on the deck which of course she had to participate in. They even put live goldfish in the kiddie pool and you had to catch one with your cup to keep it. We will be lucky if our makes it until tomorrow morning. Very cute activity and all the kids were delighted to take a fish home. Thanks Savages for having us!!
While we were at the party I got to meet an amazing family, the Egers. They have 3 home grown kids and 2 heart grown, one 6 year old girl from Guatemala and one 6 year old girl from Haiti. Melissa from Haiti was brought here to Michigan by Healing the Children. That is the same organization that brought Josie and Teresa. We used to be Healing the Children and we split from them 3 years ago and became Mending Kids International. Melissa can't walk either but is as mentally sharp as Josie. It was beyond amazing to meet another mother that is going through virtually the same thing I am. I can't wait to spend more time with them. What a great family.
To who ever is reading this, thanks. We love the support.
Sorry family that we are missing Matt's 2nd birthday in Newport today. Our hearts are with you all. Jenny and Josie
Tuesday, July 14, 2009
Monday, July 13, 2009
In a nut shell, the purpose of all the daily repetition is to retrain and reparteeing the brain. Basically the signals are not connecting properly from the brain to the muscles causing an increase of tone. There is a great possibility to retraining the muscles and brain pattern. They have to strengthen the weak parts to overcome the brain's signals. There is also a window of opportunity in which this needs to be done for it to be the most effective, It is hard to break habits so correct training needs to happen from the beginning. That is a very rough explanation and when Susan Knight(her CHLA PT) returns from Italy I will get you a better explanation.
Josie also had Chickadee practice today. She and all the girls are actually getting better at the synchronized swimming routine. So cute. I will try to get some video of them at Wednesday's practice.
I want to let the Donahue family that our prayers are with them. I am so sorry for your loss of Terry's father, Doc. What a wonderful Man, Father, and Grandfather. My love to you all during this difficult time and always!
Love to all, Jenny and Josie
Saturday, July 11, 2009
Friday, July 10, 2009
I have received some really supportive emails lately and I can't tell you how grateful I am for those. The support is wonderful. My friend, Moinca Fitzhugh, summed up Josie really well today. She said "Josie has the strength of a giant, courage of a warrior and the spirit of an angel." Mono I can't agree more. (Don't be surprised when I put that at the top of her blog!!)
My best to all. Good night and God Bless. Jenny and Josie
Thursday, July 9, 2009
Wednesday, July 8, 2009
After swimming and a big breakfast, Josie took a hour nap before her therapy. I can't have her too tired to workout or her synchronized swimming will have to give. The swimming actually helped loosen her up for her workout. Brilliant.
She worked really hard again today. The first 2 rounds of walking Przemek didn't touch her or the walker. She independently walked with the walker. Let me clarify something for those of you who know she walks in her walker at home. The home walker has a support around her waist so she can't fall and hit her head. It also doesn't require her to properly use her legs. She can get more on top of her arms and "pedal" her feet. This Polish walker that she is using here has no support and she has to properly weight shift and maintain balance in order to make it move and without falling. It is like going from a tricycle to a 2 wheel bike. In her case it might feel like a unicycle. I will add some video to show you the walking with the walker. She also is using the parallel bars to walk. This is great preparation for cane walking. It requires the same rhythm that she will use when she gets to her canes. She will need sometime on here to train her left hand and arm. The right it great already but that arm doesn't have the muscle damage either. She even started a new balance exercise today. It was the end of the session and she was beginning to fall apart so they will have to resume again tomorrow. She is very scared of balancing. She is old enough to know that she can not fall therefore scared to be out of control. Przemek will increase the confidence and quickly. He will have to work on me too. I even asked one time today during walking if he could get her if she went over.(he felt so far away) He assured me that he could and also that she is strong enough to maintain and correct her posture. This therapy moves so fast and she gets better so fast it always catches me off guard. I have to move my thinking as fast as she is accomplishing.
My love to all and to all that endure my long winded posts. It is so technical that I could write forever the details. Will just try to keep it to the main points. Ciao for now...Jenny and Josie
Monday, July 6, 2009
After therapy today we meet the cousins for a dinner at the Rotary meeting. We meet some lovely people. One lady asked if she could give Josie a grandma hug and Josie said yes because she misses her hugs from Grandma Carol and Grandma Ellie. Sweet. She of course entertained anyone who would listen. A great thing happened there. I was feeling so badly for missing my Mending Kids board meeting today. Low and behold we sat at the table with the divisional chairperson for Rotary International and also the people in charge of the Grosse Pointe chapter and they asked Josie and I to speak about her story and Mending Kids. So everyone at MKI I hope that makes up for my absence today at the meeting!!! I miss you all and am proud to share about the children from all over the world that we are so blessed to help. We are lucky to be in their lives. Thank you to my cousins Roger and Jeannie for helping facilitate.
Love to hear about how and what everyone else is doing. I feel so out of touch and self centered on our endeavors at the moment. If you have time, please drop a quick email or comment at the end of the blog. It makes it feel not so far away. (Josie really does like reading them) Happy summer days to all. Jenny and Josie
Video of Josie walking with Sylvia - Day 3
Sunday, July 5, 2009
Happy 4th of July to all. We had a wonderful weekend. Yesterday we had lunch on the patio with Jeanie at her house. We had a good time with their dog Theo. Congrats to Roger for his second hole in one!! Impressive. We also swam yesterday despite the fact that the sun really never came out. Today we went to church in the morning. It is a beautiful church on the lake. It is actually the same one that my Grandfather Fletcher Hull grew up in. Neat to go to his same parish. We got to go to the Country Club of Detroit with Jeanie and Roger to swim. We also saw their good friends, Nancy and John Donnelly which is always a treat. It is always a amazing to visit their club. It truly defines the old meaning of country club. We also got to return to it tonight for a wonderful dinner on the patio with Aunt Harriet, Roger and Jeanie. It was the perfect temperature outside and the food and company were wonderful.
Josie is fast asleep hopefully preparing for her week ahead. It will be intense, but I'm sure rewarding. Now is the time it gets more exciting to see the progress. She it a candle after church today under the statue of Mary. When I asked her what she lit it for she said "of course my sister but also that Mary will help me walk." I can't think of a better mother to ask that of. Please Mary hear her prayer. By the way, every time she lights a candle in church it is always for her sister. We miss you Teresa. Stay strong and healthy. Miss Silvia misses you too and hopes to get to California to see you.
We miss you all. Lots of love, Jenny and Josie
Friday, July 3, 2009
Now in Jenny's words...What can I say after that. Just when I think she doesn't get it she has this great outpouring of gratitude. She finished her first week. I can't tell you how impressed I am with her. I can't even describe what she is really going through not to mention with determination, cooperation and strength. We have already seen great progress and it has been 5 days. During her walking time today, Przemek pronounced Shemag (her trainer for the next 3 weeks) came in to see what level she was at. He will be prepared for what to do next week. I will not lie, the next 3 weeks will be gruelling. Sylvia works her incredibly hard but there is a tad more tollerance to talking. Przemek will need to really get to the grunt work to make even more progress requiring all her attention and focus. This is the challenging part for Josie because as we all know she likes to talk.
We got to do a bit of shopping after her work out and dinner at PF Changs. It is a treat to change up the routine a bit. We are hoping we get to see the sun tomorrow. It has been a cool week. We will spend most of the day at the pool and will go to the lake to see the fireworks at night. Our house is only a block up from the lake so it is really convenient. We will check in tomorrow. Have a happy and safe 4th of July. Grams and Gramps, I can't believe we aren't with you tomorrow. Gramps, we will have to save some fireworks for the Delta. Best to all. Jenny
Josie had her first synchro swim practice yesterday. Her group is called the Chickadees because they are the youngest group. The night before practice she woke up 4 times asking if we could go yet. I can't tell you how excited she is to part of the team. We watched for a while when we got there to learn the routine. I was so correct in saying that they are flailing in the water...so cute. I just giggled the whole time. The girls coaching are so sweet and make Josie feel so welcome. Josie then got in the water and did it with them. They have been practicing for 2 weeks already and she will learn this by the end of the weekend. So cute. I am more delighted in watching her feel so included and apart of a team. Miss Colleen is going to practice with her privately. I will post video and pictures.
She had a good day 4 at therapy. The muscles where a bit fatigued yesterday from so many days in a row, but she pushed through it and got everything accomplished. Amazing girl. Sylvia was telling me that the most important area for her walking is her pelvis and glut strength. They will concentrate really hard on strengthening those areas. I was also asking about her balance issue. I am worried that no matter how hard we work on strengthening her she has this balance issue that could still prevent her from independently walking. Silvia was telling me that they can retrain and overcome the balance problem that is coming from the brain. They will work a ton on the balance board and retrain the brain to compensate for the brain damage .
We better get ready to go to therapy. Will update tonight. I can't believe we are almost done with 1 week. She deserves and needs a good break this weekend. She starts with Shemag (Sylvia's husband) as her trainer next week for 3 weeks...good luck, he is sooooo tough. She does love him and know that he can really help her. I would cry! She is way tougher then I am. Ciao, Jenny
Wednesday, July 1, 2009
They are really working on the mobility of her left hand and arm. As most of you know she has very limited use and control of this hand. We are assuming that it was damaged by a stroke during separation surgery or damaged at least during that time. I will have to ask Dr. Lazareff if he knows. Anyhow, it will be great to get some more use from it. Jen Loiselle, her Occupational therapist extraordinaire at CHLA will be jumping with joy from that!
It is pouring down rain her tonight so we didn't get to swim. As a result it took her forever to fall asleep. She needs that extra movement in the pool to relax those muscles. She is so excited (beyond excited) to start her synchronized swimming class tomorrow. My mom and I are getting such a good chuckle over this. The good part is that all the little girls will be flailing around the pool with the appearance of drowning so this might be the one place we look like we belong!! The performance is on her birthday, July 25 and I promise to take video and post it. I'm sure with tech support and 3 weeks to learn how to do that I will be able to!
I have to send a special thanks to our amazing therapists at home. Susan Knight (who happens to be in Italy right now, lucky girl), Jen Loiselle both from CHLA and Liz Bunkell in Santa Clarita for all their incredible work they did with Josie this year. Without them we won't be as strong or in such a great mindset to be able to tackle this. You guys are the best with her. Thank you a million times. We miss you a lot. ( I can guarantee the halls of the 4th floor Orthopedics at CHLA will be a lot quieter for 6 weeks. Rosalia might get some work done in peace!!)
We miss all of you and it is hard to be gone so long, but I know this is the right thing for Josie. Our window of opportunity is closing so we have to strike when the iron is still hot. We are both ready to fight the good fight. Thank goodness for our relatives here in Grosse Point, Jeanie, Roger and Aunt Harriet. It is reasurring to have them right around the corner. My love to all. Good night. Jenny