Happy day

Receiving the news that her sister was out of surgery and doing well. What a huge relief


We had a happy day all around. Therapy was successful again today. She is starting to get the hang of the canes. They are becoming more automatic instead of being so forced requiring so much concentration for every movement. I ended up staying the whole session today which is very unusual. I am usually only there for the walking part. Josie woke up sort of off. It could very well have been that her sister was going into surgery or that she just needed mom today.

As for Teresa, she did have her surgery. It was longer and tougher than anticipated but she did really well. Werner sent texts and pictures as soon as she was out. She looks great. She was awake and alert right away. Her eyes seem to be tracking better then when the shunts were externalized. He even sent a short video and she looks like herself again. She just needs to get through the next few days infection free. Then she can go home!! Just at the moment Josie finished therapy we got the text saying that she was out and fine and included a picture. Above is the picture of Josie when she saw the picture. She was squealing with happiness. We called Teresa on our way home and the nurse in the PICU held the phone to her ear. She said when Teresa heard Josie's voice her eyes got bigger, she started to talk and smiled a bit. True sisterly love. Keep fighting the good fight Teresa. We love you so much.

And finally for the other happy news today...Mike and Steph are having another BOY!!! Luke is going to be a big brother. We are going to have 4 male cubs and one reigning queen. Matt and Luke will both be great brothers. We are thrilled. Congrats Richards family. Let the name game begin.

I hope everyone had a happy day. We are so thankful for all our blessings. Jenny and Josie

18 and Princess Pig

Princess Pig side view with coat on

front view with coat on

Crown

without coat- notice the boats on the feet because it is so cold here.

What do 18 and Princess Pig have to do with each other you ask?? NOTHING! 18 - that is the number of steps that Josie took tonight on her canes, Rita and Lilly, in the kitchen without any help!!! You have no idea how great this is and how quickly her confidence has come back. I don't want to completely count my chickens before they hatch but this is huge progress. Last week I thought that maybe I had maxed her out and we should call it a good run for now. Today I wish they didn't get snow here and we could go all year. One day, one hour, one minute at a time. I am newly encouraged and I think she feels the same. There was no argument or fight tonight to walk. Just doing it. She even walked twice. Over to the stove, helped me cook her soup and then back to the table. Then she walked 18 steps across the kitchen floor, started to fall I caught her and she kept going to her bedroom. Wow.

Przemek also decided that he would go back to the basics of walking like with the parallel bars, walker, etc to build her confidence and break her fear. He was gentle, patient and kind today. He really liked meeting Rita and Lilly and used the same names and method which proved to be highly successful.

She was so tired tonight she didn't even want me to read to her. She is trying so hard. I am looking forward to seeing the progress tomorrow.

As far as Teresa goes, they postponed her until tomorrow. All levels are normal and she is doing very well physically. They will take her into the OR in the morning if all stays ok. She is so depressed that they need to get those shunts back in there, wait the 5 days in hospital for observation and then get home. She will perk up when she leaves. Florie and Werner need to get home too. It has been so stressful for them with her in for a month and the ups and downs she has been through. So, she needs your prayers again tomorrow.

And finally, Princess Pig. I heard from many of you how disappointed you were that there weren't pictures of the pig costume...here they are! Best to all, Jenny and Josie, Rita, Lilly and Princess Pig

Tea at the Ford house- Dinner at the Hull House

Blue Ribbons for Moriah



Josie and Piggy having tea at the Ford house



Hi All - We had a nice, cool Sunday. After church, Josie and I went to the Edsel and Eleanore Ford house on the lake. Unfortunately, they were booked for the house tour so we had lunch in the tea room. It was a fun treat to be there. We will definitely go back for the tour.

After lunch, Josie decided we needed to make Piggy (her stuffed animal that goes everywhere with us)a Halloween costume. Off to JoAnn's for the much needed supplies. We came back and assembled the princess costume. She looks quite cute and with the help of iron on Velcro her costume will stay together!

We did some more cane walking with Lilly and Rita (her new names for her Left and Right canes). I have to say this naming the canes thing is really working. She walked so well with them today. She went across the kitchen with them. You can't believe how painstakingly slow it is to accomplish each task. It is remarkable that she is even able to do it at all. We will get there.

The picture of Josie with the blue ribbons on her hands and canes are for Moriah Nelson. This is our sweet little friend who has been through sooo much in her 20 months of life and keeps fighting and pulling out miracles right and left. She is doing really well right now. People are wearing blue ribbons for her and Josie wanted to send her a picture and video. I have attached the video at the end. It is hard to stand with canes and try to think of a video message at the same time. This was good practice. We love you Moriah. Keep going strong Girl!! You can see the Nelsons and Moriah's amazing journey at www.momentswithmoriah.blogspot.com.

Tonight we had a fabulous french dinner prepared by Julia Childs, or at least the recipe by Julia Childs but Jeanie Hull might as well be. We are so lucky to get to go to their house for dinner. It is fun to be with Jeanie and Roger and Jeanie is such a good cook. I need to take lessons.

I am looking forward to starting this week. I hope and pray it is a successful one. We only have 6 more weeks left of this session. Even though that sounds like a lot it is not. We need to make every minute count. I will work more with her at home so we can hopefully achieve the goals set for this session.

Please keep Teresa in your prayers tomorrow. They are going to try again to take her into surgery and put the shunts back in. They think they have figured out the coagulation problem. There was talk about needed to give her a transfusion do to some anemia she is having but they were pumping her with vitamin K first. She has been in the hospital a month and really needs to get out. She is so bored and depressed that she won't smile or "talk" at all. My best to you all on this Sunday night. Love, Jenny and Josie

Lilly and Rita/ Greenfield Village

Josie and the steam engine...Luke will like this

Josie trying to stay warm on the train

Josie and a 1914 Model T Ford



Happy Saturday to all. You are probably wondering who Lilly and Rita are? Well in the great effort to get Josie to like her canes I decided to join her imaginary world. As most of you know she has a great imagination that takes her (and who ever happens to be in ear shot) to a magical world. I decided that her new best friends should be there too...introducing Rita (her Right cane) and Lilly (her Left cane). Yes, Lilly Dunbar she is named after you. You are now apart of her magical adventure and you didn't even know it. As far as Rita goes, she was originally Rachel after Rachel MacLeod. Once we used the name with an L in it she always thought it was Lilly so we switched to Rita. We still love you lots Raych. Now that Josie has her new friends you should have seen her with them tonight. It was like a new light went off in that brain or at least the neuro pathways were firing in the right direction(most liking this one). She was using them better then I have ever seen. We hope this team work, best friend approach with be the ticket we have been looking for. Poor Przemek. He might have my head when he has to use these names. At this point he would do a jig if that helped.

Before we got wild and crazy with Lilly and Rita we spent the day at Greenfield Village. This is a village where they have recreated and also restored Henry Ford's childhood home and other things throughout his life. It was an amazing place that helped with our history portion of her home schooling. Josie was very intrigued by Noah Webster's home and all his publications. It was so neat to see a small sample of how life was lived in the early 1900's. We rode the old carousel that had all hand carved animals. We rode on the steam engine and took a lot of pictures to send to Luke. We know he would love this. We were so bundled up to stay warm that I had to keep checking if she could see out of her hood. It was freezing cold but a great adventure for the day. Hope everyone had a great Saturday. Love, Jenny and Josie, Lilly and Rita, too!!

TGIF

Wow, quite a trying week. Struggling to get back in this gruelling workout routine. We are going to take a nice weekend off, try to stay warm and start again next week. She has been at this intense pace since the end of June, so I understand that some moments are going to be tougher. I just have to remember patience. Besides the cane walking, she is healthy and happy. That is the most important. Looking forward to having a few light adventures this weekend. Will update tomorrow. Jenny and Josie

Really back in auction now

Josie has had a hard time coming back to work. She had so much fun at home and thinks the whole family is still together with out her. Her workouts have been mediocre at best. The law was laid down last night and bribes were offered. Well it worked. She had such a great attitude today and worked her canes and walking really well. She also talked to Grandma and she told her with all the new babies coming in our family she needed her help. Grandma can't carry Josie and the babies. Josie loved the idea of helping and was going to walk all over getting diapers, clothes, etc for Grandma. Motivation is great. When we were in the car driving home, Josie called Grandma how well she did. She told her that at first she thought she couldn't do it then she said, "I switched my brain and said Grandma needs my help I can do this, I can do this." and I did do it. Thanks to the Flintridge Guild of Childrens Hospital members for all signing a copy of The Lttle Engine that Could for helping us find a new mindset. By rereading this book it has helped her remember that it isn't always easy but if you try you can do it. Thanks FGCH!!

A quick Teresa update, she was suppose to have her shunts put back in. They cancelled her surgery at the last minute because her lab work showed that she was having a slight problem coagulating. Hemotogoly is looking at the reason and hopefully they will be able to proceed with the surgery with in the next couple days. Will update as things happen. My best, Jenny and Josie

Back in action

This should have been the title to last nights post, but yesterday ended up being topsy turvy. We were half way to therapy yesterday when I received a call from Przemek (her trainer) asking is we were ok because we were 2 1/2 hours late!!! Most of you know that I am not the most punctual, but not like this. The time got changed but I wasn't informed. I am happy about the new time just wish I knew after beat feeting in back from CA. The good part is that we got to spend time with Roger, Jeanie and Aunt Harriet as well as play with the Egers for a little while. It was nice to catch up with everyone. Cute Melissa Eger is making a charge with her new canes. What a complete joy to see her progress. Lory and I were texting back and forth about possible weekend plans and apple picking is one of them. She said that would be great if it didn't snow. SNOW??!! Josie and I laughed when we got that text. Please don't say the S word yet.

Today Josie was back at it. Great day except for rebellion with the canes. We had a nice "goal" setting session at home tonight. Now I know the rebellion is fear. We will work through this.

After her tutor tonight, we got to walk Theo back to his house. We borrowed the bike from therapy and she rode Theo home. She was flying on it. I had to run to catch her. She is definitely so much stronger. I was at a slow walk with her on her bike at home at the end of June. Go Josie girl!!

One funny, dumb blonde from California thing today. I was at the market before I picked Josie up. I was getting a few meat items, so thinking about how not to have them spoil on our hour and a half journey home I asked the lady for a bag of ice. She looked at me funny and I assumed I was putting her out by having her get this for me. As I was checking out I told the checker that I has a bag of ice for a few of my cold items and could she put them together in a separate bag. Again, from someone else I received another funny look. Couldn't figure out why they had such a problem with my bag of ice. Finally it dawned on me...only a silly blonde girl from CA would need a bag of ice in 45 degree Michigan weather to keep a couple pieces of meat cold. The lady and I got laughing so hard. I told her at least I would bring a smile to her face all day because now she had something to talk about!! She said, "Yes I do!" At least I made many people laugh in her check out line today...got to do something to keep warm in 45 degrees on Oct. 13th. Night to all. Hopefully your day was filled with laughter too!!Jenny and Josie