3 more therapy days

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

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

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

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

Last full weekend in MI.

We are blessed to be surrounds by angels.

All the kids

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

May, Madison and Josie

Josie and Maks

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

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

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

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

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

Snow flurries

Catching snow flakes on her tongue

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

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

The Count Down Begins

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

Good buddies. Break before the walking.

Przemek with the Trick-or-treat bag

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

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

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

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

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

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

Halloween

Craving pumpkins. Josie gave hers chickenpox

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

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

Standing by the pumpkins



Out front with Aunt Harriet

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

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


Reggie with his fan club or harem

Sorting the loot

The cutest slice of pizza in town and darling Madison

Josie and Janie passing out candy

Josie passing out candy

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

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

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

Better Day

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

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

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

The Good, The Bad and well just life

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


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

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

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

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