Brownies

Chef Tom teaching the girls




Happy Birthday Rowan!!

We had our Brownie meeting today. Our troop went to Jane's Cakes and learned the art of cake decorating. The girls got to decorate three cupcakes each...one flower, one bunny and one grass with eggs. They were excited to use the different decorating tips. Everyone did a great job and had fun too. Successful meeting.

Night, Jen and Jos

New Sports at school today

Smart Cole Drummond to sit at lunch with all these adorable girls!!

Emmie teaching Josie to really throw a Frisbee...so sweet

Today was filled with new activities for Josie. At the first recess, she decided she wanted to learn how to play handball...so she did. The kids were so patient and kind, as usual, and helped her learn to play. They hit the ball straight to her and she was able to return it a few times. She loved standing in line, waiting her turn. She feels so apart of everything that everyone else is doing.

At P.E. sweet Emmie Lew taught her how to really throw a Frisbee. (see pictures above) Emmie is so patient and kind with her. I purposely left her on her bike, so that I wasn't apart of what they were doing. Emmie is keenly aware of what is around them and what could possibly harm Josie and her head. It is amazing that some of these kids have a sense like that at such a young age. It is so much fun to be able to step back and watch the interaction without my interfering.

So Emmie summed up for me what I have been trying to achieve with Josie from day one. I strive to have her be able to do anything she wants. I never tell her she can't do something because of her circumstance. That would only reflect my sheer laziness. Today Emmie said, "wow Josie can do anything she wants." Yes she can and I love more than anything that she tries it all. The only thing that she hasn't tried yet on the play ground it tether ball. It will come in time. Good night, Jenny and Josie

The following videos are for Przemek and Sylwia's review. It looks like they are blank. Just press the play button on the screen. Looking forward to hearing your thoughts. We will be there in just over a month!!

The DD's in the Pasadena Marathon

At the finish line


Alethea and Roberto - CONRATS Roberto on your first marathon - You Rock!!



I never really mention what I am doing on these blog entries, but a few of my friends and I did something really fun today. We ran a relay in the Pasadena Marathon. The DD's (Dealing Divas that is the name of our card group) split up the 26.2 miles into 6 legs. I was the first leg which was a blast taking off with all the people. We got to run mostly through the residential area of Pasadena with some phenomenal homes. It was inspiring to see so many people taking off to run 1/2 and full marathons. Anytime I felt tired and wanted to walk, I just thought of Josie and how much she wants to run. That definitely kept me going. I was blessed with 2 working legs, it is my own fault that I don't push them to their potential.

After me was Orsi Crawford, then Emily Woods, onto Camilla Hartman, then Mary Perkins and finishing the last leg was Alethea Crespo. It was so great knowing that there was someone to high five as you ended your leg and that then someone else took off. We decided that next time we will pair up and each leg will be 6 miles. We all could have done that today. We had a nice lunch together after. Great moment with great friends. Thanks girls We finished in 4 hours and 32 minutes. Good for our first one. Now we have a time to beat for the next one. Thanks girls for bringing my crazy New Year's dream to life!

Josie had a nice day at home today with Grandma. She was certainly happy to have her all to herself to play with. Thanks mom.

Off to bed. Jenny and Josie

Adorable School Pics

Pictures taken by Audrey Raulli and Caroline Dicks

(Left) Lilly, Olivia, Emmie, Josie and Audrey playing Kickball

Rowan, Emmie, Lilly and Caroline

Girls at the kickball game

Cute Cole Drummond with his new braces

Some of the girls at recess

Stretching at P.E.

The boys riding the bike- They realized that it isn't as easy as it seems.

Cole pushing Luke Dickie

Caroline pushing Cole

David reading with Josie and Mrs. Besch.

This is a quick veiw of our day at PCY. What a treat to be apart of it even for a small moment. I will cherish this time being able to be with Josie and all her lovely friends. These kids are all heroic in the way that they include her and treat her like one of them. Talk about acceptance. These kids define it.

Swimming in February

There are certain days that make you appreciate California more than others. Today was one of them. After school, 3 hours of therapy we got to come to my parents house and jump in a warm pool. What a treat to take a warm night swim in February. Josie was in heaven and had to be drug out after an hour and a half. We are going to try and take advantage of swimming until the next rain hits on Saturday. Feels like spring already.

Josie did a great job with Liz today. Her walking is steadily improving. We are trying to increase the frequency at home, too. Our little buddy, Reggie from Michigan, is being treated by Sylwia right now. He calls the therapy center Josie's home. She probably would agree that she feels like she lives there half of the year!! Too cute. We wish we could be there with him. We miss all of you guys.
April 5th will be here before you know it...yikes, I really better pick up the pace!

On the way home from therapy, I received a call from Dr. Mitchell, Josie's neurologist. She was alarmed that even though we have almost cut the Carbitrol(seizure medicine) level in half her numbers were alarmingly too high. She was on this same dose last year and her levels were at 8. The same dose this year is at 15. She is even taller and heavier than last year which should make the same dose really low. We are quickly decreasing her again and running levels again next Wednesday. We will hold off on starting her on Topomax until we can figure out why her liver won't get rid of this med. I pray, pray, pray we haven't done anything to the liver. I couldn't stress enough to them that her unexplained, rapid weight gain was unusual. We will get to the bottom of it. Dr. Mitchell is shocked that she is functioning so well with numbers like that.

As for wonderful Teresa, she had her shunt put back in today. She did really great in surgery and after and if all goes well neurosurgery will release her to go home in 2 days. If the antibiotics are finished by then, then she will be free. She will be so happy to go home as will her parents. They have done another remarkable job being in there the past month.

Tonight I especially want to wish my grandparents Happy 65th anniversary. They are truly the definition of love and happiness. Their love and commitment to each other shines so bright. We are the luckiest people to have them around us all the time and to witness their great love. Love you guys!!

Best to all. Jenny and Josie

Two Sisters, One Heart

The Hot Chili Steppers finishing the race(that is our team name in all the runs we do)

Josie and the event t-shirt

Mandy Bailey and her sweet little girls, Taylor (left) and Emma(rt)

Josie and her crown. The purple one is for Teresa

At the run with some of the Baileys and Marjorie and Erik Infiesto. The Infiestos had conjoined twin girls born a year and a half ago. They got to spend 6 weeks with them before they returned to heaven. Great family. What a pleasure to meet them too and hear their incredibly brave and touching story.

Memory Banners for the conjoined twins that have past

Josie doing crafts with the girls

Josie and the boys playing Wii

The girls trying to use Josie's canes

Josie walking herself onto the scale at the neurologist today

Josie and I with our 2 Sisters, 1 Heart bracelets

Josie and I had the incredible pleasure of going to Phoenix, Arizona this past weekend to stay with the Bailey Family. The Bailey's have 6 beautiful and amazing kids. Their twin girls, Emma and Taylor, are 3 1/2 and are conjoined at the chest. They have absolutely defied the odds. They were born, which is a miracle in itself that they survived the pregnancy, with one 7 chamber heart. Their story is truly remarkable as are their personalities. The Baileys put on a fundraiser for their foundation, 2 Sisters, 1 Heart. They had a 5K, 10K and a one mile fun run. Josie and I ran in the 5K and walked the fun run with the Baileys. After the run there was a carnival. Josie had so much fun. In addition to the girls, there is Paige, 11, Drew, 9, Cole, 7, and Blake, almost 2. It was a delight to be with their family and get to know such incredible people. Josie had a ball with all the kids especially the boys who are closest to her age. It was a great privilege to be with them all. Thank You Baileys!!

Cute story...Josie and the twins got crowns at the event. Josie only took hers off to go to bed and when that happened she was very careful to put it next to her bed. She wore that thing every waking moment. On our way home on the plane, she took the crown off and I put it in the bag. When we landed, I went to get it for her because of course she wanted to wear it and it was no where to be found. Josie was devastated. I told her I would get her a new one, but of course that wasn't really the point. As we got of the plane she kept saying in the saddest voice, "I am now just a Josie. I am now just a Josie" Just a Josie...never. I tried to convince her that princesses were still princesses even when they weren't wearing their crowns. PS. Luckily they had a Party City right down the street from the airport and she was recrowned.

Today we went to see Dr. Mitchell, Josie's neurologist. She didn't say a whole lot about her writing her name backwards after a seizure. Probably because she can't even explain it. She was a bit alarmed about how sensitive her head is to movement, but she can't explain that either. No one can. Finally, she doesn't like that she is having seizures even if they are only focal ones. She is worried that they will increase and also that they can affect her mobility. We are going to put her on Topomax and if it works we can ween her off Carbitrol which obviously doesn't work. I am a tad hesitant about using Topomax because it can have a sedating effect. We will start her off really slow to see if we can avoid that side effect.

After neurology and a blood draw, we got to go upstairs to visit Teresa. She is doing really well and will have her shunts put back in tomorrow. The fungal infection responded to the medicine and she is cleared for surgery. We actually saw her neurosurgeon and he was pleased with how she is doing. He is going to try to do one shunt and see if that holds. If not, he will go back in and put in another one. Josie sure doesn't like seeing her in the hospital. She is worried that she isn't going to be OK. She kept telling Teresa don't worry you get to go home soon. Teresa just smiles at Josie. You can tell she is very glad to see her. Please keep Teresa in your prayers tomorrow morning as she has to endure yet another surgery. Thanks, Jenny and Princess Josie (not just a Josie)

Valentine's Day at school

Look at how sweet these pictures are. Even though Josie is on her bike, it is like she is a regular 2nd grade girl, holding hands with her friends on the way back to class. Adorable.


Everyone in the class was very excited for the 4 day weekend, Valentine's day and Mrs. Watt's birthday. We sung to her this morning and the children had donuts. They all made her a card which was so cute. I think everyone was really excited for the long weekend.

Josie did a good job in therapy. We only went part time today because Liz had somewhere to go. She is doing better in her walking. I am so proud of her.

Going to keep this short. Really tired, need to go to bed and get up to pack for Arizona in the morning. Night, Jenny and Josie