54

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

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

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

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

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

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....

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

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

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

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

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

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

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

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.