J.J. and Josie


Going to bed after a long, but positive day. I just had to post that cute picture of J.J. and Josie from school today. It just shows the sweetness of her friends. Funny story about this moment too. J.J. likes to walk with Josie from recess back to the classroom. We go in the back door to put her bike away. Today J.J. said maybe he was going to go line up at the front door but then decided to wait with Josie. As we were going inside, we learned that one of the other kids had thrown up in line. Josie looks at J.J. and says, "Betcha glad you came with me today, huh?" Yes he was. Poor Mrs. Watts had a clean up to do in the hallway. Thank goodness it was outside. Never dull in 2nd grade.

No therapy today, just first communion class. Josie has first reconciliation on Saturday. Please keep her in your prayers. Night, Jenny and Josie

Lucky Us

We are so incredibly blessed to have wonderful people in our lives. I love taking Josie to school and seeing the great love and support she gets there from all the kids. When I was on the treadmill today watching the news (horribly depressing) I realized how lucky we are to be in a happy and healthy environment. I picked up Josie from therapy after that and realized how fortunate we are to have great therapists in our lives. I miss our CHLA ones so much and can't wait until we can get back there. On the way home I got to speak with a friend of mine who I haven't been in close contact with regarding Mending Kids stuff and was so pleased to to talk again. Tonight I got to go play cards at my sister's house with my cards group and I know how fortunate I am to have that group of friends. We love our family more than anything. I could go on and on and on, but I will stop with the mushy part now.

Josie is moving ahead in her life. She is getting the hang of the school thing. I can't believe how well she is adapting to the rigorous schedule with school and therapy. I will try to post video of her walking in the next few days. I shot some today, but it was after 3 hours of therapy and her legs could barely hold herself up they were so fatigued.

One cute story that happened this morning in class. Mrs. Watts asked the kids what they wanted to be when they grew up. Josie of course answered that she wants to be a veterinarian. She said that she has a dog, 3 bunnies, 2 frogs, and a fish. Mrs. Watts said that that must help her with her decision to be a vet. Josie's response to that was, "Yes it really inspires me." That comment stopped Mrs. Watts and I in our tracks. I love the word inspires in that phrase. She never stops to amaze me in her thought process.

Good night to all. You all truly inspire us. Jenny and Josie

PS. Congrats Dolly on the big win tonight!!

Me and My Shadow

We have been out in the desert this weekend. Josie was walking outside she realized that she could see her shadow while she was walking. She has never been ever able to move her own shadow. She was so excited. It is fun to see the stuff that we all take for granted.

We had a fun weekend. Josie got to swim with Natalie Walklett on Saturday. We really just took it easy by swimming, playing, go on golf cart rides. It was nice to be out in the warm sun. Josie did have to work a little hard with walking. She lost some of her strength after being sick last week. It is amazing how quickly it disappears. We go back to Liz tomorrow so hopefully with her help she will regain the bit she lost.

We are getting ready to start our week. I am hoping that we will get closer to finding an aid for school. I love being there but it isn't the right thing for either of us. Keep your fingers crossed. Our best, Jenny and Josie

2nd Grade Singing Concert

Josie's 2nd Grade Singing Concert

Josie and Dr. Kay showing him how she walks

Josie and Teresa in the recovery room. Poor Teresa had to have her head shaved again just when the hair was growing back from the last time. She is such a sweet angel.


What an adorable concert the 2nd graders put on today. Mrs. Roberts, their singing teacher, does such an amazing job with them. The kids love it and the songs are fun. Josie was very proud to stand up there with her canes. She didn't want me to be up there with her, but I don't trust her standing on her own yet. She sang her heart out and stood the whole time.

She is doing better in school and picking it up at a rapid pace. Her writing is getting to be more proficient and she is able to write quicker. Not up to the rest of the class but she is working very hard. She sure loves her friends and they her. Very cute.

After school, we went to Childrens Hospital for her orthopedic check up. She was delighted to walk into see them with her canes. The nurses were so excited to see her first. Of course Josie acted like it was not big deal. She expects herself to walk so she can't understand what all the fuss is about. They took hip, spine and neck xrays. Everything seems to be great. I have had some concern about why the feet are going numb when she sits on the carpet at school. Thankfully Dr. Kay isn't seeing anything unusual. She just might have a bony bottom that is causing her feet to fall asleep. We might try sitting her on a little pillow. Dr. Kay was happy to see that she is truly out of braces and that there was so much success in strengthening her feet and ankles in order to walk. He was impressed by the results from Michigan. He wrote a new prescription for us to continue with Liz here and completely supports our decision to continue with Michigan. He feels strongly that it does have to happen now. Now or never is the motto.

Just as we were finished with orthopedics Teresa was in the recovery room after having her shunts externalized. We begged them to let Josie come up to see her. They aren't allowing anyone under 16 to visit and they hardly ever let people visit in the recovery room. They were kind enough to allow Josie up there for a few minutes. As soon as Josie started talking to Teresa she opened her eyes. Josie was so sweet talking to her telling her how brave she was and how sweet she is. Teresa would keep opening her eyes to see her even though she was so tired from the anesthesia. Josie was telling Teresa that she was leaving and Teresa opened her eyes and just watched her kind of like no don't leave me here. I hope she gets out of ICU sooon and onto the floor so Josie can go visit again soon. They need each other especially when Teresa is trying to recover. It makes me want to cry they are so sweet to each other. What a bond that none of us will ever be able to understand. God is good to them.

After a long, but great day, I am even off to bed. Jenny and Josie

Happy Birthday Grandpa!!

OK, I know you are all sick of seeing the "jump roping pictures, but look how well she is doing by herself. I am not even holding her. She is balancing while turning the rope. You have got to see it and fell it to believe me. I will stop with the jump rope pics...for at least today!

Today is my dad's birthday. We had a fun birthday dinner for him. Josie and Luke were busy this afternoon making cards and wrapping gifts. We had to re wrap a few because Luke really enjoyed opening them!

Josie went back to school today. She didn't have all her energy back but boy does that kid have tenacity. She played jump rope as you can see from the picture above. Just before the bell rang to go in she actually asked to sit on her bike. She got a bit tired.

A sad moment happened for her today. At PE the kids run 2 laps around the field. Today when the teacher told them to run, Josie burst into tears. She just kept saying, "I want to run with them. I want to run." I tried to reinforce what great progress she is making and that one day soon she will be able to run with them. She has never had a moment like this where the reality really hit that she just couldn't do it. I try to let her do everything to the best of our capability that the rest of the kids are doing. We even ran relay races together last week. It just broke my heart to her the words I just want to run. Someday soon my love. Keep working hard and you too will run. (Przemek - I hope you are listening..hehe..she wants to run, not just walk. We need you, Sylwia and Liz to work your magic!)

After school we had our Brownie meeting. I am so lucky to have the nicest group of girls. They were all in kindergarten together and we have stayed together as a troop since then. We are selling cookies if anyone is just dying for some Girl Scout cookies. It is such a treat to be the leader. It is so laid back, but we all have a good time. Thank you Katie Budde for letting us use your room!!

Please keep our friends, The Breedens, in your prayers. Their new baby boy, Makoa, is having a hard time. They aren't receiving great medical news but he was born into the most wonderful family that will give him the best of what he needs and fight for him. This is actually Tracy's (Josie's aid from last year) sister.

We get to go see Teresa in the hospital tomorrow. Will update tomorrow night.
Our best, Jenny and Josie

Happy Half Birthday Josie and Teresa

Modeling her new pajamas that she wouldn't get out of all day!!

Walking to do her homework in her PJs

Got there!!! Such a Champ in her new PJs.

Josie and Teresa are officially 8 and a HALF today. Josie has been trying to say she was 8 1/2 since she turned 8. Now she finally can. She is also much better on her half birthday. I kept her home from school and therapy and she seems to be full recovered now. She can go back to school tomorrow and to her Brownie meeting after that. She did a good job writing her book report today. Writing isn't her favorite past time, but she is getting more proficient in it. That fine motor task of writing seems to be challenging. She also did a fair amount of walking today. She has begun to really pick up her knees more when she steps and doesn't drag her toes quite as much.

We get to go see her orthopedic surgeons on Wednesday. No one in the clinic has seen her walk yet not to mention to see her without her braces on her feet. I can't wait to show them the progress. They are going to be truly shocked. I hope now we can do a motion gait study on her and see what we find compared to what she was doing before we left. Before we left, they just need her to be a bit more proficient in her walker. She graduated out of that walker where she was strapped in, graduated out of the push walker with nothing holding her to just canes. That is huge for 5 months. That would be huge for a 3 year span. I love looking back on what she has accomplished. Better yet, she is with canes and doesn't even have to be cued. She wasn't even doing that when we left Michigan. I never tell her what foot or cane to move next. OK, enough of the reminiscing...

As for Teresa, I just got off the phone with Werner. They have found a very rare fungus infection in one of the shunts. No one has any idea how this has happened. They are confident that it is treatable. Unfortunately, they are going to have to externalize the shunt again, run a course of anti fungal treatment and then put the shunt back in the head. This is always risky because a shunt that is coming out of a head is a direct path for infection to go straight into the brain. They will monitor her very closely. Over all she is in good spirits being her feisty old self. Josie will get to visit her after her doctors appointment there on Wednesday. Will keep you posted as we get more information.

Off to organize the Brownie meeting for tomorrow. Our troop is so adorable and they have so much fun together. I am lucky to be their leader. Ciao, Jenny and Josie

The Fever is Back

Bummer, the fever returned tonight. Not high thank goodness. She seemed to be fairly good today. We went to church and then to Whole Foods. I guess I pushed it too much. She just seemed to be well. Tonight after walking from the family room back to her room she complained of a headache. I check her temp and it was 100. I guess school and therapy are out tomorrow. I can't stand missing either. She needs to be at both so badly. On the other hand, I don't want her to get sicker.

As for Teresa, she is still in the hospital. Her head is now swollen. They are trying to see if her shunt stopped working again or if she has an infection in it. Poor baby, she needs to get well and go home. She never really recovered from the last round in the hospital in October. Please keep praying for her.

Sorry for the boring blog tonight. I hope we will be in better spirits with happier things to report tomorrow. Thanks to all of you who have emailed, texted and called. We appreciate the support. Night, Jenny and Josie