I CAN WALK

The sweet sound I CAN WALK. How amazing the recognition I CAN WALK. How glorious the ability I CAN WALK.

For months, quite frankly years, have I been waiting to hear these 3 words I CAN WALK. Today, a very ordinary Saturday, I was having her walk to the car. She wasn't warmed up or stretched. She had just finished breakfast and we were going to go on a walk with Jeanie and Theo. Josie was walking on her canes about half way across the kitchen and all of a sudden she giggled a bit and said "I CAN WALK". It was almost as if she couldn't believe it herself. It just dawned on her. She then proceeded to walk all the way out of the house with a new spring in her step. She even told me that I didn't need to tell her what leg or cane to move next that she got it. It is amazing that she was the last to realize that for the past month she has been walking. It is only now that I am secure in the fact that she can do it. She now knows that she is doing it and that not someone else. AMAZING!!!!

I thought when her epiphany came like this after so many years of incredibly intense work that there would be fireworks, marching bands, etc instead it was a very peaceful epiphany. I'll take it.

So I decided to push it a little farther today. I had her walk in the toy store. This was a good test to see if she could really put her skills to work. It is one thing to walk in a quite gym with someone giving you commands for every move and it is another to walk in public with distractions, people and many things to see. You can't possibly rely on your concentration but your skill. She did better then I ever dreamed. She took those canes and walked right back to pick out the birthday gift for her friend Mayra. She even stood on them while the lady decorated the gift. I am in awe of her ability. She wasn't fast but she was able to do it. The speed will come over time. It is now more important to get the perfection of every step. I will continue at home to make cane walking functional.

I am going to bed now and dream of those 3 magic words...I CAN WALK. For all of you who support her these are for you too!! We can't do it without our "village". To that we are eternally grateful. Love, Jenny and Miss I CAN WALK

The moose is loose

OK, weird title and only has to do with the moose head in the picture above. We had dinner at Capital Grill and Josie kept commenting on a moose. It was behind me and I didn't see it until we were leaving. It shocked me when I turned around and she thought that was hilarious. She wanted her picture taken with the moose.

Fabulous therapy day. I can't say it enough. The cane walking was so smooth and controlled. Przemek was so happy with her progress and confident in her ability. We have 2 more weeks to sharpen it all up. He needs to pull out a couple more miracle days in that time. Actually, Josie has to pull out a couple more miracles and we definitely know she can do that. I wanted to run to the car and get the camera to tape her today. Przemek wouldn't let me leave or add anything to the routine today because he was afraid to jinx it.

Josie wants to say something..."I love everybody, and thanks a lot for looking at my blog. I had a good day at therapy."

Happy Friday to all. Jenny and Josie

PS. Mending Kids, we are so sorry we couldn't be home for the event tonight. I hope everyone had a great time.

I love canes

"I love canes" written on Przemek's window

As the old saying goes, the writing is on the wall...I love canes. I returned to this today and to great walking. Josie was so cooperative and strong with her walking today. The left side, especially her hand is getting stable enough to make the walking safer. I still wouldn't get a foot away from her just because she absolutely can't hit her head. Tonight when she practiced she was so smooth and stable she decided on her own to go farther then she needed to. She was proud at the ease of her walking.

One more "writing on the wall" incident...tonight Josie says to me,"hey mom, do you want to know about my seizures at therapy today?" She is helping me keep track because we are keeping count so the neurologist can see if the increase in meds is helping and I was at the dentist so I couldn't be there for all of therapy today. Of course I said yes please tell me. She says, "alright, so I would walk walk seizure, walk walk seizure, walk walk seizure." Need I say more?? The poor child is working her rear off and having to deal with seizures at the same time. Like I said, need I say more? I haven't been to med school, but I am going out on a limb and say that I don't think the current medication is effective any more. Ok neurologists, now what????

Before therapy today, Josie worked hard with Mrs. Bergman. She is doing well with her school work. Janey and Lory came over with Reggie. He is so adorable. This is a child the doctors told Janey would never talk. I think they should have said would never stop talking. He is amazing with incredible speech at 3 years old. He even has a sense of humor where he can joke and understand sarcasm. He is starting therapy at Pediatric Fitness in January. He should be running by this time next year. Anyway, he and Josie had a fun time army crawling around together. He would even hold her feet and say pull me Josie. Of course she loved this. To cute. Fun to have them over.

Two weeks from today Pibb comes and so does Grandma. We are so excited for this. I can't believe we are rounding third base and heading for home. Our 5 month adventure is coming to an end. What a ride...wow. We are going to finish strong. Good night and sweet dreams, Jenny and Josie

Clean bill of health from endocrinology

Well we went to Josie's endocrinology appointment today at University of Michigan. What a fabulous facility. The good news is that there is no problems with her thyroid, pituitary or anything else that can occur in brain surgery kids. This is a relief. Now to address the 15 to 20 foal seizures she is having a day. Obviously her current med isn't effective anymore. This one didn't even last a whole year. I will consult with her new neurologist here tomorrow and try to get ahold of her neurologist at home. Hopefully we can come up with a plan of action that is fairly seamless and very safe. It is always a bit worrisome when you start switching around the seizure meds. The good part is that she is still able to tell you when the seizures are coming on so I have some warning to help brace her. She is so strong.

After the doctor, we went to therapy. She definitely had a better day today then yesterday. However, she did her best walking with me tonight at home. It was the first time ever that I put the canes in front of her and she didn't put up a fight at first. She got on them. Walked half way across the kitchen floor and then started to take off her shirt. I couldn't understand why she was stripping in the middle of walking. Then it dawned on me...her favorite thing is the laundry shoot. Down went the shirt!!! I think she was sorry she didn't have more clothes on to strip off and through down. Now I will pack her with things to get her over there. She proceeded to walk the rest of the way to the bathroom for her bath. She did amazingly well and the best part it was without confrontation.

Jeanie and Theo (the dog)came for dinner. It is fun having them so close. Theo gets to come over in the morning while Jeanie goes to work. Josie absolutely loves waking up and having Theo looking at her from the chair in the room. It brightens her morning. Off to bed. It has been a long day, but a good one...no migraine for the first time in 4 days hurray!! Best to all, Jenny and Josie

Tuesdays and Fridays??!!

What is it with the inconsistency of Tuesdays and Fridays for Josie at therapy? I can't understand why these are days she struggles the most. Friday I get more then Tuesday. Fridays her legs are so fatigued and her mind must be like mush from the sheer concentration that is required of her all week at therapy and with tutoring. But Tuesdays...why?? So basically you get the gist of today. Even through these days that aren't award winning she gains so much. We got there and both Josie and I got massaged. I have had a migraine for 4 days now so Bella worked on me and Holly started with Josie. Maybe Josie was worried about me or something because she was off from the beginning. Finally at 5 o'clock Przemek told her she was done even though she really had another half and hour. He told her she could go but she had to walk to the car with her canes. She was so excited to go early that she actually cooperated. The little pistol walked herself with Przemek out to the car. It took her 25 minutes to do so but she did it. Now she is ready for her good Wednesday.

She will have a slight disadvantage tomorrow because we are going to University of Michigan Medical Center to see the endocrinologist before therapy. She has to have blood work done as soon as we get there and can't eat before that. We will do our best. It is something that has to be done.

She has been doing really well with her studies. It is fun to watch her make progress. It is a miracle that she even has the ability to learn. I will be mindful of the greatness of what she can achieve and not compare her studies to others. She doesn't need that added pressure.

I hope you all had a wonderful Tuesday. Even though we have these moments in therapy we remember that they are just moments. They will pass and will be small in the big picture. Cheers, Jenny and Josie

"You are not is Kansas anymore"

Sweet Izabella keeps reminding us that we aren't in Kansas anymore and need to get with the winter program. More layers of clothing!! I put them on and we walk in somewhere and we are striping everything off because it is so hot from the heater. You would think Josie and I were having hot flashes at 8 and 38. Yikes!! Izabella knitted Josie the most lovely hats this weekend. She doesn't want her cute little head to get cold. They are so beautiful and more beautiful that she would do this for her. Thanks Bella! You have taken such great care of both of us for the past 3 years. The Pediatric Fitness Center crew is like our family. We are so grateful for all of you.

Speaking of family, sweet Aunt Harriet went to Florida today(smart woman it is 85 down there). After Josie heard the garage door close this morning she burst into tears saying how much she didn't want her to go and that she would miss her. We have been so blessed to have the time here with her. If it wasn't for her generous hospitality and letting us stay in her home this summer and fall we would not have been able to stay. Josie has achieved so much in this time. Thanks Aunt Harriet. We love you and will miss you. Can't wait to see you soon.

And for therapy today...IT WAS AWESOME! You should have see my hero walk on those canes. It is getting to be so methodical. She walked so far with so much independence. The achieved something great today. Przemek has been persistently working on reconnecting the brain patterns so she can actually learn or achieve the ability to have falling reflexes. Well today when she was starting to fall backwards the automatic response kicked in and she was able to catch herself and pull her body up. Unbelievable. This is the most important response because it will save her from hitting her head. She didn't do it just once but about 6 times. He even started, and let me reiterated started, the process towards independent steps. This process could take a year to complete. Exciting that it has officially begun. You can see in the video that he has her walking with one parallel bar. It is her first attempt at this and she does fairly well. My battery died so you don't get to see the next part where she has to let go and hold herself up for 6 seconds. She even made it to 9 seconds one time. We just need 3 more weeks of this. so exciting.

Sadly, today we got word that sweet Rachel MacLeod's father, Rob, passed away yesterday after a very courageous and long battle with cancer. Our prayers and love go out to the MacLeod Family. Rob was taken to heaven on All Saint's Day which has to be the biggest celebration in heaven. No doubt he made the celebration more fun. Today would have been Rob's 55th birthday. Peace and love MacLeod Family.

Before going to bed we got an email from Judy Kelly that had a video of the Hoyt father son team that do all the races together. The son has severe cerebral palsy and yet they do marathons, triathlons and the Ironman together. Son Rick and walk or speak but he can do race. Dick, thae father is the body, Rick, the son, is the heart. If you want to see real inspiration check them out on Youtube. They are definitely my inspiration. Good night, Jenny and Josie

All Saints

Happy All Saints Day! As we went to church today we were reminded of the saints that went before us and the exemplary lives they lived. Here is a picture of Josie saying her prayers to Mary. I think it is so sweet that she lights a candle and prays to Mary every week that I thought it was appropriate to get her picture today.

We took it easy today. This evening she was really complaining of a stomach ache. We even had to miss Jeanie and Roger's dinner at their house. I was sad to miss but thought it was most important to get her feeling better. We can't afford to miss a single day of therapy at this point. She did perk up and went to bed feeling pretty well. Thanks Jeanie for sending the plate home. Dinner was fabulous.

Josie is having an increase in her focal seizures again. The doctors here increased her seizure meds and the higher we go in dose the more she seizes. I am afraid she has already developed a resistance to this particular med like she did the last one. We will keep exploring the situation. We see endocrinology at University of Michigan on Thursday so hopefully they can be of some assistance too. She is having an increase of weight viscerally which is unexplainable. So we are checking it out.

Over all she is happy and thriving. We look forward to the short 3 weeks we have left here. We are going to try to get everything possible out of it. Our love to all. Jenny and Josie