Tuesday, August 31, 2010

Obstacles



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
video

Friday, August 27, 2010

Dairy Queen


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

Thursday, August 26, 2010

Me and My Shadow





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

Wednesday, August 25, 2010

"Amazing, Beautiful" says Sylwia




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

Tuesday, August 24, 2010

Barefeet






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.

Monday, August 23, 2010

Back with Sylwia

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

Sunday, August 22, 2010

Summer Fun


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





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.

Thursday, August 19, 2010

Vacation Time


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

Wednesday, August 11, 2010

45

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

Tuesday, August 10, 2010

35

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

Monday, August 9, 2010

The Race Is On...again


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.
video

Sunday, August 8, 2010

Summer Weekend


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

Saturday, August 7, 2010

Confidently Walking


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

video
video
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.

Thursday, August 5, 2010

8 Years since separation

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

Tuesday, August 3, 2010

Walking Buddies


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
video
The meeting in the middle
video

Monday, August 2, 2010

Ponytail Power


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
video
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.
video

Sunday, August 1, 2010

Beautiful Sunday in Grosse Pointe


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.