Fun in the Sun in December

Making puppets with Cousin Lexie

Puppet Show


Gingerbread house decorating with Aunt Carolyn

Swimming


We are currently out in La Quinta enjoying family and the sun. Josie has been cruising around this house like a champ. I don't know why but she always walks her best out here. Grams and Gramps (her great grandparents) were here with Steph and Luke until today. Josie and Luke had such a great time playing and swimming together. We had my dad's side of the family out Sunday for a belated Christmas celebration.

Today we just took it easy and played. Josie swam for about 2 hours. It is amazing to watch her swim the whole length of the pool. She is such a strong swimmer especially when I was told she would never swim...Ha! It was nice to finally have a day that didn't consist of a schedule. I think mom, Josie and I really needed the break. We are looking forward to getting back in the swing of things tomorrow when dad and the Yundts come.

Hope all is well with everyone. Jenny and Josie

Merry Christmas

The family


Lilly and Rita dressed for Christmas


4 generations


Cookies for Santa



WALKING in to the presents

Giving Trent a bottle

"God's sign is simplicity. God's sign is the baby. God's sign is that he makes himself small for us. This is how He reigns. He does not come with power and outward splendor. He comes as a baby- defenseless and in need of our help. He does not want to overwhelm us wit his strength. He takes away our fear of his greatness. He asks for our love: so he makes himself a child. He wants nothing from us other than our love, through which we spontaneously learn to enter into his feelings, his thoughts and his will - we learn to live with him and to practice with him that humility of renunciation that belongs to the very essence of love. God made himself small so we could understand him, welcome him and love him."
--Pope Benedict XVI, Midnight Mass, 2006

Wishing everyone a very Merry and blessed Christmas -Jenny and Josie


Walkng into the presents. Josie's gift to me

Holiday Cheer

I know I got carried away with the pictures!!















Notice the "candy cane" canes...corny, but I couldn't resist.

My apologies for the delay in posting the past few days. First it was a string of migraines and I couldn't form a sentence. Then it was all the fun that got in the way. Michele, Brian, Matt and baby Trent have been here the past few days. We have had so much fun with them. Josie is absolutely loving being able to hold Trent. She is so kind and gentle with him. Matt and Luke have been running around playing like little bear cubs. So cute together. My mom's side of the family was here for the weekend. Fun parties and celebrations with all of them. Josie has enjoyed the whole string of events. In a nutshell, we have been to Descanso Gardens, riding on trains, Travel town, making and decorating Christmas cookies, having dance parties led by 2 year olds, holding 2 week old babies, mostly enjoying those we get to be with.

Yesterday we spent the whole day at Childrens Hospital Los Angeles doing an EEG. An EEG monitors the brain waves and can pinpoint seizure activity and location of the particular activity. As you know from past posts, she is seizing anywhere from 10 times a day to 40. We get in there and they hook her up, which is quite a process, and in 8 hours she might have had 1 seizure. To top it off it occurred in the one minute I ran to the bathroom. You never wish seizures on your child, but if she is already having them during a video EEG would be a nice time for them to appear. I decided instead of seizure meds we will just wear the EEG machine everywhere..hehe. She was so disgusted with the wires all over her head that she kept telling everyone that she looked like Ursala, the sea witch from Little Mermaid. At least she has a sense of humor.

Today we picked up Jeff so the family is complete. We had a wonderful Christmas party with the Yundt family. So much fun to be with them. We are so lucky to have close friends and family to enjoy the season and whole year with. Will post tomorrow. Looking forward to the celebration of our Lord's birth. Good night. Jenny and Josie

Christmas Party day

Crafts at Mending Kids

Maria Jose - from Ecuador for open heart surgery and back surgery

Melaine our Christmas Miracle

Mending Kids-some board members and staff

Today turned into a Christmas party day. We started at Josie's class for that
celebration. Laura Campabasso, Ann Drummond and Lisa Dicks did a great job organizing and executing a fun party. They had the biggest pizza that I had ever seen brought in. The kids all had a great time doing crafts, decorating cookies and eating pizza.

From there we headed to therapy. After a big morning I didn't know how well she would do for Liz today. Josie shocked me again and gave Liz one of her best days. Liz couldn't believe how good her steps were and how well she did her exercises. She has a lot more opportunity to walk in public now so she has fairly consistent so she won't fall. It is becoming more and more automatic everyday. She was a bit tipsy at school but I think it is a combo of so many kids walking around and tighter spots to get through. When she returns in January she should be far enough ahead that those things won't be such a problem.

Lastly, we went to the Mending Kids Christmas party that the City of Santa Clarita did for Robin's Nest. Robin's Nest is our own Hospitality House similar to the Ronald McDonald House. We bring Kids and a parent who are either long term kids or the most high risk kids. There are 8 bedrooms and it is full year round. Anyhow, it was a wonderful gathering for those in the house and those who threw the party. We are blessed everyday to witness the miracles that occur with the Mending Kids kids. One story to share is about Melanie. Melanie is an adorable 2 1/2 year old girl from Guatemala. Melanie's mom, Lorana, was the first care taker at Robin's Nest when it first originated. After a few years she returned to Guatemala. There she decided to adopt a baby after being so touched by the children at Mending Kids. She adopted Melanie and a year later learned that Melanie was deaf, but otherwise perfectly fine. She called our director who brought them both here immediately. That was
Dec 26th last year. After a year of treatment, Melanie sat by the Christmas tree tonight singing a Christmas song and talking. She is hearing with the assistance of cochlear implants. That, my folks, is what the Christmas miracle is all about and we were fortunate to witness it. Jenny and Josie

Visit to School

Josie and I got to visit her school today and her new classroom, class and teacher. It was so exciting for both of us to be back. Josie got to actually walk, and I mean literally, into the classroom. It was a glorious moment for me to see that we had really accomplished what we set out to do. The kids were so excited to see her and especially to see her walk. She was equally as excited to see them and know that they were all still there and supporting her. She got to be apart of holiday reading. We met with Mrs. Watt's while the children were at recess. It was so great to talk to she and Sherie and get set for the rest of the year. I am sure it is never easy to leave your child in the care of someone else. I find it really difficult when your child has special needs. I am getting more confident in the capability of the people she will be with. Most everything I do with her is almost second nature, so I have to really think about all the things that will keep her safe so they can learn it too. Honestly, I just hold my breath everyday and say a lot of prayers. I want her to be happy and independent but safe too.

We went touring the school with Miss Sherie going over the daily activities and how best to get her around. We ended up at the cafeteria area at the end and some of her friends who hadn't seen her yet came running over to hug her. They were all so excited to see her. It warms my heart that these kids are so incredibly welcoming, supportive and loving. I am thrilled that we live in a community that offers so much support to us. We are incredibly fortunate to have the friends we have and to be at the school we are at. Everyday I am reminded of these blessings and everyday I am more and more thankful for them.

After our fabulous school outing, we waged the shopping war. We got the few things we needed. It really put in perspective for me what I don't want Christmas to be about. I was angry, frustrated and judgemental. That is not what this amazing time of year is about. If you don't get a gift from me this year, I don't love you any less. In fact I love you more, because instead of anger I have appreciation for what is really important and that is the kindness that surrounds us all. We just have to find more of it and give more of it. Good night, Jenny and Josie

Hello

Hi all, After spending hours just trying to get those few videos up for Przemek and Sylwia, I have run out of energy. The day in a nutshell, Mending Kids board meeting this morning for 3 hours. Josie was a champ to sit through the whole thing. Off to 2 1/2 hours of therapy where she worked really hard for Liz and walked incredibly well. Will post tomorrow, Sweet dreams, Jenny and Josie

More video for Przemek and Sylwia

Hi Przemek and Sylwia, Here is the other video we talked about. Thanks for reviewing. Look forward to your comments. Jenny

The Nutcracker

Today we had the pleasure of seeing the Nutcracker. Josie's friend, Lele Caviezel was in the production out in Thousand Oaks. The Nutcracker puts you right into the Christmas spirit. Lele was adorable in it. You could see her big, beautiful smile as soon as she came on stage. She was the part of a cookie. Her part was towards the end. The entire 2nd act, Josie kept asking when the cookies were coming. We all got a chuckle out of her persistence. The man in front of us asked at the end if we had cookies. Josie would love to dance in the Nutcracker. Maybe someday.

Afterwards, we went to dinner with the Caveizel's and friends. Always fun to be together. Their kids are so great to Josie. They are all cute little buddies. We also celebrated Bo's 10th birthday. Hard to believe he is that old.

This morning before we went, I put on Josie's maryjane shoes which are just normal, non orthopedic shoes. I only let her wear them because she had her fancy party dress on. I had her try taking a few steps in them before we left and what do you know her right foot stepped better in them then in the ortho shoes. Przemek called just after that and he is confused by it too. I am going to tape her in both shoes tomorrow for him to see.

Speaking of Przemek, he reviewed the video I did for him and he thinks Josie is doing really well. He is pleased with her progress so far. He just had a few minor adjustments he wants us to make. I am glad he is statisfied at this moment. He keeps reminding me that he is NOT done yet! We are so lucky to have he and Sylwia on our team. With them, we might get her in the Nutcracker after all!! Night to all. Jenny and Josie

Singin in the Rain

Oh I'm singin in the rain, what a glorious feeling singin in the rain...and it rained all day!! Josie and Luke enjoyed a few moments outside in the rain together. Luke made his best attempt to hold his umbrella up for Josie. However, I think he liked getting wet better!! Josie was stuck because she had to hold onto her canes so she quickly got used to the rain and loved it too.

Keeping it short and sweet tonight. Hope you all are staying dry and warm. Pray that the hillsides hold here around the burn areas of Southern Cal. Love, Jenny and Josie

Drummond Speedway

So today the afterburners kicked in...well, Josie style afterburners that is. Josie and I went to Ann, Cole and Doug Drummond's today for a Mending Kids meeting. Josie was so excited to show them her new found walking skills. She walked in over the carpet which she can do now but has to be more careful. Then she hit the hardwood floors and for her, took off. Ann even asked me when she got so fast and it was literally 2 steps before she asked the question..."right now" I think was my answer. It probably helped having a very handsome 8 year old boy watching her walk and the need to show off a bit!! She even had adorable Charlie puppy jumping on her and she still stayed up. It still amazes me to watch this progress. All of a sudden the brain must make these important connections and something new happens. Remarkable. Keep them coming.

This morning we met with Josie's new aid for school, Sheri. The school hired her while we were in Michigan because they felt she was the best to meet Josie's needs. She is going to be fantastic for Josie. I am so hopeful that she will make school and learning fun and will be able to more her forward in the education area. I love her enthusiasm and creativity.

We met Luke and Steph for lunch at Chipotle. Josie walked in with her canes. As we approached the counter to order she looked in and said, "oh that is what is up there." It dawned on me at that moment that she had never seen the food on the counter because she was always in her stroller and couldn't see up there. She was so intrigued watching them make the food. Whole new world to see for her now.

Josie walked into her hair appointment today as well. They were all proud of her and astonished with the progress. I know I sound like an awful broken record and it is probably because I am still in shock myself. I will try to tone it down some. Happy rainy (in So. Cal) and snowy (in Michigan) night to all, Jenny and Josie

Dr. Kreiger's

OK, so Josie is never dull and is certainly never at a loss for words as most of you know. We had our appointment with Dr. Kreiger, her neurosurgeon at Childrens Hospital Los Angeles, today. I'll get to the actual medical part of it in a minute but I will give you the very funny Josie part first. After her exam and review of the MRI he asks her to show him her walking from Michigan. So she gets on her canes and walks across the exam room towards the door. He could hardly believe his eyes. She reached the door and turned around to see him just as he begins to dictate his notes to her 5 other doctors at CHLA. Josie begins to walk back to him and he says into the recorder, "Josie is walking to me with crutches" and of course Josie quickly corrects him and makes him say they are canes. She keeps walking, he keeps recording and all through the dictation he will pause and say, "Josie is walking with canes". He said it 4 times including the crutches correction. It was like total disbelief and pure excitement that she could do this. It was great to get his reaction seeing he knows more about the brain and the reconnection in order to function than most people. It will be funny for the other doctors to receive these notes.

As for the medical part, he is thrilled with how the brain looks. He feels the size has stopped growing and we are safe in that regard to add on her skull when Mark Urata is ready. It will be at least a year and a half from now because she needs to complete this intense walking journey before we set her back with major surgery. When I asked about the shunt he said it all looked great. I have had my doubts about it even working. He had a great response saying it is either not working and since there is no fluid build up she is draining on her own or that it is working perfectly. Either way she is perfect. We will MRI in a year unless something arises unexpectedly.

Before Dr. Kreiger's, we got to go see the PCY 6th grade school performance of Charlie and the Chocolate Factory. Josie was excited to see some of her friends. She was most excited to see her friend Ben Dickie play the role of Mike. She thought he was hilarious. Good job Ben, we loved watching you!!

That's it for now. Tomorrow we get to do some training with her new school aide, Sharie. Josie can't wait so she can go back to school in January. Good night, Jenny and Josie

Przemek and Sylwia video to review

This isn't tonight's post it is just a clip for Przemek and Sylwia to review and critique. We need them to analyse her walking every couple of weeks so we know that we are doing it correctly. It has to be so technical in order for the next stage to work. If we were satisfied just being on canes forever then it wouldn't matter so much. Thanks Przemek and Sylwia for continuing to help. We miss you guys a ton.

Welcome Trent Michael Hull

Girls at therapy together

Miss Cindy and Miss Liz with Teresa and Josie

Steph, Grandma, Mom and I

Joellen and Mom


Trent Michael Hull made his grand debut on Saturday at 2 AM. We have only seen pictures which are adorable, but can't wait to hold him in a couple of weeks. Congrats Brian, Michele and Matt. Matt- we know you will be a great big brother to Trent.

Josie has been doing really well in therapy here with Liz and Liz has done a great job with Josie. Liz has been trained by Izabella in Michigan so she can train Josie is this specific method that has proven to work miracles for Josie. Josie's walking seems to improve daily. Again, it is a slow precess but is sped up with this method. Teresa and Josie got to do therapy in the same room together on Monday. Teresa is working with Cindy for the first hour of Josie's therapy with Liz. Both girls were overjoyed to be together. After Teresa was finished, she Florie and I watched Josie practice her walking with Liz. When Josie started to walk Teresa started to giggle and try to talk to her. It was like she was so proud to see her sister walk. At one point I looked over at Teresa and said hi and she looked right at me and said, "hi". It was the first time I have ever heard her say it. The Cajas's kept telling me that she would say a couple of words but I hadn't heard them before. That was a treat. I know she is in there and must be so frustrated not to be able to communicate everything.

Today we had my mom and Joellen Yundt (my mom's best friend of 50 years) 60th birthday tea. We had 40 of their friends to the Scarlett Tea Room in Pasadena. It was so wonderful to have all their friends there to celebrate. My mom and Joellen's birthday is Dec 10th and they have celebrated every year together since they were 10 years old. They went all through school together and were even college roommates. Julia Yundt, Steph and I were thrilled to be able to do this for our wonderful moms. We love you both.

After the party, I stayed there and had our Brownie troop there for our Christmas party. Last year we did a meeting on etiquette. I got each girl their own tea cup and taught them how to set a proper table, serve the meal, and use proper etiquette at the table. They had so much fun they kept asking if they could go to tea sometime and try it out so we did. They are such a nice group of girls that have been together since kindergarten.

Off to bed we go to get ready for another adventurous day tomorrow to the neurosurgeon at Childrens Hospital Los Angeles. We get the results of the MRI tomorrow and we have a few head questions for him. Will update tomorrow. Love to all, Jenny and Josie

1st real week home

We have survived the many appointments and 1st week of therapy here...phew. Josie has done really well with Liz at therapy this week. Liz said that she already sees her walking speed pick up in 4 days. Josie is starting to move her right cane before her right foot has even completed the whole step. This is encouraging because this means that she isn't leaning all her weight on the cane to take a step but rather using her leg and glut muscles. This is required to be able to take away the canes. Exciting times to see the forward progress. We just have to keep it going in that direction.

Last night Josie got to come to my cards group with me. Camilla did an amazing job hosting. Great fun to be with my CA friends. I didn't end up winning but it was to show my friends her walking and her progress. They have all been a great support to us and have known Josie since she was 20 months old. They have really been through it all with us. Alethea, who was one of Josie's first therapist is in our group so I was really excited for her to she what she can do. Thank you DD's.

Michele, my amazing sister-in-law, is in labor right now. Please keep she and Brian in your thoughts and prayers tonight. We will hopefully have a new nephew/cousin/grandson by morning. Can't wait to see him and hear his name. Love, Jenny and Josie

MRI

Apparently I have freaked Josie out about NOT getting sick. She asked for a mask today at the hospital so she wouldn't get sick!


Tea Party under the table with Grandpa

Today Josie had an MRI. It was the first one that she has done awake. She was trying to be so brave about the whole thing even though I could tell she was nervous about it. I kept telling her that she could stay awake and that they had this video in it that she could just watch her movie. She was delighted about that part. When we got in there I found out that it was with and without contrast which meant an IV. Oh let's just say that didn't go over very well. She burst into tears and wasn't going to let the nurse put it in. I think the other nurses were wondering why a child that has had more blood test, pic lines etc then they have ever even preformed was freaking out. Well, she is older and with the ability to remember those moments. After the initial shock she calmed down and did a great job. I got to stay in for the whole scan and hold her hand...I was half way in the tube with her but I promised I wouldn't let go. Let's just pray know that the scan comes out clean which I am almost sure it will.

Before her MRI, I went with Camilla, Dolly and Josie to my friends house to hear a wonderful speaker, Dr. Cindi Peterson. She has an amazing life story filled with happiness and sorrow but overcoming the sorrow with dignity and grace. It was a treat to be with Camilla and Dolly since it had been so long. It also is amazing and inspiring to listen to someone like that at the start of our busiest time of year. It puts life into perspective and I hope to slow down this holiday season to enjoy what is really important to me. Happy beginning of Advent to all. Jenny and Josie

Regrouping

After much consideration, I have decided to take the next couple of weeks a little slower than anticipated. Josie is doing really well physically, but needs more time to regroup and recharge after the intense 5 months she just had. I was planning on putting her back in school next Monday. She isn't ready to start up yet. She needs to let down a bit and regroup. Her mind and body have gone through a sort of boot camp and she needs some time to unwind and digest it all. She needs to really put to use what she has learned and iron out the kinks. She is walking so well and mostly without cuing. I spoke with her principal today and she actually totally agreed. It is so nice to have her support and help. I can't tell you how fortunate we are be at Paradise Canyon.

Josie had Liz today for her first 3 hour workout with her. I dropped her off and ran up to Mending Kids for part of her workout. When I returned, Josie was walking with Liz and her legs looked like a baby giraffe just after birth. They were so fatigued that she was buckling!! I have great confidence that Liz will propel her forward.

I think I need the regrouping and unwinding as well. We hit the ground running...exactly what I didn't want to happen. Life gets so busy and I need to be better at slowing down. It doesn't do either of us any good to keep up a frantic pace. So on that note, good night. Jenny and Josie