Happy Memorial Day

Hope everyone had a safe and fun Memorial Day. Every year La Canada has a fun run in the morning followed by a parade down Foothill Blvd. Since my dad's office is in the middle of the parade route, he always has a party there. The kids love coming by for a donut. It is a cute home town parade with the schools, cub scouts, girl scouts and just about every club, group etc. in La Canada. More people may be in the parade then watch it!! Great to see a bunch of our friends every year.

Yesterday we spent the day at Great Grandma and Grandpa's house with our cousins from San Francisco Brandon, Amanda, Devon and baby Fiona. We had such a great time visiting and swimming for hours. It is always a treat to be together. Thanks you guys for making the trip down south.

We are getting ready to check into Childrens Hospital Los Angeles tomorrow for Josie's video EEG. It is amazing that everyday I pray that she doesn't have any seizures and now the prayers will change to please let her seize. The more she seizes the faster we get to leave. Don't ask me what we are going to do after we leave about the seizures but hopefully there will be somewhat of a plan by then. Always an adventure. As I always say, it is never dull.

We want to thank all the men and women, past and present, who have served and are serving in the armed forces. We will never be able to comprehend the magnitude of what they go through in order to keep us free and safe. Thank you doesn't even do it justice but those are the words that we should be saying to them constantly. May God bless you all and keep you safe, with sincere gratitude, Jenny and Josie

Balboa Island

Josie and Ryan Palmer

I had a meeting in Irvine this morning and Josie came with me. I promised her we would go to Balboa Island after the meeting to do some (window) shopping and to dig in the sand. A nice man gave Josie and $20 bill at dinner the other night, so she deiced she needed a wallet for her money. She bought herself a cute Roxy one at Even Sisters on the island. After walking around for about an hour we went to see if any of Brian (my brother) in-laws were around. We ran into Jen, Jimmy, Ryan and Yaya(Andrea). They were off for a boat ride so we jumped on with them. What a gorgeous afternoon on the water. We had a great time especially catching up with them. Their little Ryan is such an adorable and sweet little boy.

We stayed for dinner and headed home after. It has been a great beginning of summer day. I love it down there. Maybe someday I will be fortunate to have a home there.

Jenny and Josie

Best laid plans...

Juggling the past week's activities has been some what of a challenge. Of course a good challenge to have, but none the less a challenge. Grandma has been working overtime and Josie loves that. Last night was Open House at school. Grams, Gramps, Steph, Luke and I went to see all the amazing things Josie has been up to at school. She was very proud to show off her classroom and we were equally as proud to see it. I will never get over the appreciation I have that she is even capable of being there. Special people like her teacher, Pam Watts and our principal, Donna Robinson, are the angels that make it happen. For this I am eternally grateful.

Josie had a rough night sleeping last night. She either had allergies or is getting a cold. She was very congested that lead to a lot of choking in which I had to keep helping her clear her throat and get her breath. I tried propping her up even higher then she already has to be for her head. I turned her to every position I could think of, but nothing worked really well. She also announces the onset of 2 seizures during the night. The only seizure that I have ever seen at night was one of her first grand mals 2 1/2 years ago. I don't like the increase and intensity in which the seizures are coming right now. Good thing we will be in patient next week to monitor and map them.

Plans today were supposed to be the snake walk around all the classrooms at school and lunch with your kid day. I was supposed to be at a meeting in Orange County so I lined up Grams and Gramps to be the have lunch with your kid day volunteers. Josie was more than thrilled that they were coming so it was disappointing when we had to cancel. Next time. I wasn't comfortable leaving her with anyone else today with the seizures. She did have quite a few longer and more intense ones today, but thankfully no grand mals. So my great plans changed and there you have it.

We did get a chance to practice our walking more today. I need to step up (no pun intended) the program. I have let other things take precedent over walking and I absolutely can't do that. She is starting to find her balance herself a bit more now. She was dancing tonight and instead of bending back to the point of me completely holding her up she seemed to stop herself and bring her own body up without my help. We practiced doing a lot of short walks. 8 feet or so and then start again. This way I could get her to work longer because she wasn't dreading the length. Thin of these a wind sprints.

Hope everyone has a happy and safe Memorial Day weekend. We plan on spending time digging at the beach and swimming in Grams and Gramp's pool. Jenny and Josie

Flying past

Time seems to be flying past us right now. In fact, when we walked to school yesterday, we literally stopped to smell the roses in a garden by our house. Josie kept saying that she was going to be late for school. I finally said it didn't matter until we figured out which color rose smelled the best. She and I need to remind ourselves more often to check the roses out or we will miss their time in bloom.

Speaking of time, Josie and I have been a family for 7 years last Sunday. What another remarkable milestone. I am the luckiest person in the world that she chose me to be her mom. I will never forget the day Robyn called to say the girls were sick and we needed to go get them. It was an honor and privilege to pick them up from Guatemala. The rest is history. My heroes are Wenceslau and Lety who so selflessly allowed their girls to go so they could live. I hope we are making you both very proud of your brave decision. We love you very much and always will.

Josie has officially started orthodontic treatment. She got her spacers put in today so she can get her expanders put in next week (if we aren't inpatient at Childrens Hospital for a video EEG). She was big and brave. They don't seem to be causing too much pain. She isn't even complaining about them. She knows pain like hopefully we will never know. This must be nothing to her. Brave girl.

Robyn Gibson hosted a garden luncheon today in Malibu to benefit Mending Kids. It was a lovely event and I was happy to attend. I had to leave early to get Josie and Cole from school, but had the pleasure of seeing some old friends first.

Brownies was this afternoon. I love our little troop. They are all so adorable together. I am excited that we are going to stay together next year.

Tomorrow I had a work party at my house that I am very excited about. It is so exciting to be with this great company with fabulous products. I am lucky that Anne Marie found such a great fit for our lives. There are no accidents as Caren always says.

Please continue to pray for the Mending Kids medical team that is still in Ecuador doing 40 - 50 open heart surgeries this week. We are thankful for the many lives of these precious children that will have a chance at life. And for the families that will be whole because their children will not die from heart failure. Blessed are those that donate their time and effort into making this happen. This is truly doing the Lord's work.

Thanks for checking in. Jenny and Josie

Sewing Project with Great Grams and Gramps

The sweet friends from PCY who had their first communion. We took a picture together yesterday because we couldn't do it after Josie fell. So glad we did it.



Dr. Mitchell and the Girls



How cute is it that Grams did the quilt sewing project at school with Josie's class. Gramps came for moral support. They came over for dinner last night so we could make sure my machine was working properly before today. They got to the class before us because we were stuck at Josie's neurology appointment at Childrens Hospital LA (more on that later). It is so remarkable that Josie has such young great grand parents and she can really have them participate in her everyday life. Thanks G and G!! We love you so much.

Onto the beginning of the day. It started at 7:45 with her annual IEP. Always an interesting meeting especially we you are trying to decipher the likes of Josie. Challenging at best. It was the overall consensus that she is learning despite the many distractions like missing half the year and more time hen that for appointments,etc, being put on yet another nasty seizure med and trying to find out how to get through the side effects that aren't actually listed as possible side effects, dealing with a body that doesn't want to do what the mind does, trying and achieving social butterfly status (yes she has mastered the social skills category as you all well know). How about the fact that she is missing 10% of her brain and has had more surgeries than all the lost teeth in her class to date. Well, I have to say we doing ok. Grade level appropriate? no, but thriving, YES! IEP complete. Thanks to the wonderful people that help her at PCY. We are the luckiest family to know them.

From the IEP we went straight to Childrens Hospital Los Angeles for her neurology appointment with Dr. Wendy Mitchell. Funny thing there, when we got put in a room, I went up to the front desk to bring them our paperwork and there in the waiting room was her sister, Teresa with Florie and Vivian. We didn't communicate very well on that one. The good news is that the girls got to spend the next hour together waiting for the doctor. Teresa was "talking" and smiling at Josie. Josie loved that she was there and was really playing with her. Always a treat to spend time with sister. Just a quick update on neurology, she was put on Topomax about 3 months ago. It has never gotten rid of the seizure activity or even decrease it. As soon as she was on it, she couldn't recall words or concepts like she could before. There has been a huge breakdown in word recall and even in tasks like math facts and letter recognition since this time. We have all been stumped and hoped it wasn't a regression. Not regression just seizure medicine. Needless to say, she is being weened this very minute. The bad news is that there isn't much more we can put her on. In about a week we will do a 4 day inpatient video EEG to try to determine the frequency, length and area of the seizure activity. From there we will be presented with options such as the Keto diet first and onto brain mapping which if they are localized could lead us into removing the part of the brain where the activity is taking place. This would only occur after extensive testing and if it won't cause more brain damage. Darn seizures. I haven't told her about her inpatient stay yet. It will be hard to keep her down that long when she feels fine. Lots of games, toys and books. Visitors are welcome. At least there is a great explanation for the lack of word recall and memory loss. I can't wait to have that back.

She sure did great at therapy today after a very long day. She is a champion. Liz does such a great job with her. Liz changed her stepping order and it seems to be really working. We are trying to get it to be a habit before we return to Michigan so they can keep it going. We are so fortunate to have such a great team.

Please pray for our Mending Kids International medical mission to Ecuador. They will preform 40 - 50 open heart surgeries in 10 days. Remarkable to say the least. I will find out what the blog is so you all can follow this incredible heart mission.

Thanks for checking in with us. Night, Jenny and Josie

Magical

Today Josie officially made her first communion and the best word to describe it is magical. Every moment, everyone and every event of today was just magical. When the whole thing is centered around a true angelic spirit on earth it is hard to imagine it to be anything less than magical (ok I have used that word enough).

**Warning to all of you that tell me you get your cup of coffee and sit down to read the blog...you will need a pot for this one it is going to be long.**

Josie was invited to make her 1st communion at the 11:00 am mass this morning. When she processed in with the priests, etc, she had the biggest smile on her face ever. My mom said she has never seen her filled with more joy than that moment. Father Kevin said Mass today and centered the homily all around Josie. There were divine things that happened today like the Caviezels were around and able to come all the way down for it. Holly Heydorff (my sweet angel Kalee's mom) came randomly to the 11 o'clock mass. We got Margaret Mortimore home in time from Haiti from working on a mission trip there for today. Mike, Steph and kids were able to come and my parents. Regretfully, the rest of the family was unable to make it hence the reason for this lengthy post.

This picture is of us bringing the gifts of the bread and wine down the isle during mass. Kerri Caviezel and Margaret Mortimore actually carried them while Josie and her friends walked with them. There was Audrey Raulli, Lilly Dunbar, Erin Buchanon, Lele and Bo Caviezel. Very sweet to have her dear friends there at that moment.

Close up of the procession. Look at Josie's complete joy

Josie receiving the Body of Christ Amen! (Sorry for the turtle position I am in. I was so scared she was going to bite it and it would fall out of her mouth.)

Receiving the Blood of Christ, Amen.

Fr. Kevin announcing Josie at the end of church. She loves an audience.

Procession out of the church. Josie was almost running down the isle. I had to ask her to slow down a bit at one point because I kept tripping over her feet and it would have been so embarrassing to fall flat on the floor with her.

Luke congratulating Josie after church. Funny story about Luke during the gospel reading. The Deacon doing the reading said, "the gospel according to Luke." Our Luke said in a rather loud voice, "That is me, that is my name" a few times. He was proud that they were going to talk about him for a moment.

Very special picture of the gang who was there for Josie today. We are incredibly blessed by the friendships we have with all there wonderful people. These blessings continue daily for us in the people the Lord chooses to put in our path starting with the best and most loving family on earth.

Josie and Fr. Kevin. He was standing there when she fell the fist time 2 weeks ago. As you can see he is slightly nervous to have her there by herself!! Fr. Kevin, you did a remarkable job and are so wonderfully caring to Josie. Thank you.

Josie and I. The only picture she and I got just the 2 of us. We might be a small party of 2 but our love is worth a lot more.

Would you look at those sweet, loving faces. From left, Hilary Raulli, Erin Buchanon, Lilly Dunbar, Josie, Audrey Raulli, Lele Caviezel in front Luke and Bo Caviezel.

From Left, Erin Buchanon, Lilly Dunbar, Josie and Audrey Raulli. There are some of Josie's school friends. Sweet Erin made her fist communion the same day Josie was supposed to. She came today to support Josie. Thanks Erin and Laura for making it work today. I know that it was a busy day and we appreciate so much that you were there.

Josie, Lele and Bo. The story behind this amazing group of kids would bring everyone to tears. It would also take a lot more space than I have here. Short story. Dr. Lazareff, the neurosurgeon that separated Josie and Teresa,goes on quite a few medical missions and some take him to China. Bo was born with a fatty tumor on his head and at age 2 1/2 he was brought to Dr. Lazareff to be seen while Dr. L was in China. Dr. L feel in love with this incredibly special little boy. For the next couple of years Bo kept appearing when Dr. L was in China. Finally, he brought his case to us at Mending Kids and requested that we bring this sweet little orphan boy to LA so he could operate. We did but before we brought him we knew he needed a loving home. Through the grace of God the Caviezels not only entertained the thought, but said yes. The shortest version would be to say the rest is history, but I warned you about getting your pot of coffee ready...Anyhow, Bo came, the family was complete and Dr. Lazareff was able to operate on Bo. He has since gone on to be treated by Mark Urata as well as Lele. They are perfectly healed and we are blessed that they are our dear friends. It is amazing to think because of Josie and Teresa, so many others like Bo and Lele were helped in so many ways.

Josie and Lele have such a great little friendship. They can relate to each other at a level that I don't think we all really understand. They are so cute together.

Our dear and wonderful Margaret. Margaret was Josie's first Physical therapists. The Sunday after I brought Josie home we went to church at St. Bedes. Looking back now, I was so out of my league with this child it is a good thing I didn't know it then. After church Margaret approached me to ask who her therapist was. I said I didn't think she needed one that she was emotionally adjusting really well....duh, she meant physical therapist not psychological. Margaret offered to treat Josie. Thank goodness that Margaret came up to me. I don't know how long it would have been before we would have figured our that we needed PT not to mention where to receive it. Margaret is the one to fully credit for us getting to Childrens Hospital Los Angeles. We are eternally grateful for this and her love and friendship. Margaret has been there for the most important moments in the girls lives. Thank you kind Margaret!!

What a sweet picture!

Magical!!

Josie and Holly Heydorff - Kalee, Holly's daughter was in my confirmation class that I taught at St. Bedes years ago. She has always been very special to me and to Josie so is her loving family. Kalee was Josie's first babysitter. What a great surprise to have Holly there today.

Josie and her dear friend, Lilly Dunbar. Lilly is so incredibly kind to Josie and treats her so normally. They have turned out to be great little buddies.

Josie and Audrey Rauli. Audrey is Josie's oldest friend. She have gone from Mommy and Me class up to know in school. Audrey could handle Josie's seizures at 5 years old in kindergarten. As babies, she used to try to straighten Josie's head. Adorable. We are lucky that the whole Raulli family are our good friends. Thanks Peter for taking one for the team today and bringing the girls. It made Josie's day.

The cousins, Josie, Baby Carson and Luke. We missed you Trent and Matt. We were thinking of you and can't wait until we are all together. Luke and Carson did really well in church and Luke kept commenting on the "nice stories" they were telling.

Josie and sweet baby Carson - 6 weeks old.

The best family Josie and I could ever ask for. We were missing the other half and Grams and Gramps. We know they were missing it too. Thanks all of you for your unending love and support. You know for sure that I couldn't do any of this without all of you. Mike and Michele, like I always say, we are batting 1000% for in laws!! Love you all!! Thanks for bringing that joy to Josie always.


After a quick lunch at Dona Maria's (Josie picked of course) we had the great opportunity of going with Kerri and the kids to the Pregnancy Counseling Center where Kerri is a board member and an incredibly active volunteer and speaker. It was fabulous to see the center and what they offer to mothers. They just put in an ultra sound machine so that mothers can actually see the baby before making any decisions. The love and support they offer to families is just remarkable. It gives the women and families hope for their unborn child. It was a pleasure to meet the lovely people that give so much of themselves to others. Thanks Keei for all you do. You inspire many.

2 more quick events. Yesterday was the Faire at Josie's school. We ran in the 5K and 1 mile run. This is a picture of Josie and some of her friends cheering for their class mates as they finished their races. Cute.

On Thursday, some of our friends got together to do our version of the Revlon walk in La Canada. We did it in memory of Janet Banz, Jenny Banz Sullivan's mom, who lost her life to breast cancer. Jenny and I do the run every year at the Colluseum, but were both tied up this year. We still wanted to do something so this is it. It was a nice morning to take a stroll with friends.

Thank you all for the blessings you are in our lives. As we celebrate today Josie's first communion and the Jesus's Accension into heaven, I count my blessings for all that we have. As Fr. Kevin challenged us all today to do which is instead of looking up to heaven and waiting for something to happen, we should all go out and make something happen on earth while heaven is watching. With great joy, good night and God Bless. Jenny and Josie

Back from the Desert

Sorry we have been MIA for a few days. We were lucky enough to spend the last few days in the desert with most of the family. It was very warm which meant a lot of pool time. The kids had a ball of course. Matt is really swimming now. Josie is our resident fish. If she could just swim through the world, she would be so happy. We did practice her walking. She is getting better with the new canes. (Przemek- can't get the computer to upload the video. I will try again tomorrow).

Happy Belated Mother's Day to all the wonderful moms I know out there. What an honor and privilege to personally have such a fabulous mother and grandmother. I am fortunate enough to have an incredible daughter that brings so much joy to my life.

Happy Birthday dear Orsi. You are definitely 40 and fabulous! Jenny and Josie

200th Post

Wow, we hit the 200th blog post. Looking back, it is remarkable to see what we have accomplished over these 200 posts. 200 more to go and she should be walking!! Yeah. Thanks to all of you who are taking this blog adventure with us. I will have to step it up a bit more in the next 200.

Happy Cinco de Mayo to all of you. We had a great dinner with Josie's preschool teacher and our dear friend, Miss Monica and her absolutely adorable Ben. I could eat those cheeks of his. I wasn't thinking (not unusual) and picked to go to dinner at Dona Rosa. Luckily, not all of Pasadena decided to join us there. We got lucky to get a table. It was a pleasure to be with them and catch up.

Josie is doing really well with Mrs. G at school and visa versa. Tomorrow will be my first day to leave all day. Nervous and excited all at once. I am a little skittish just because of the recent fall, but I know with Mrs. Watts and Mrs. G she is in excellent hands. I can't keep her in a padded room for the rest of her life not matter how much I would like to.

So, I haven't posted in a few days mainly because I am too tired when I should be doing it. SO quick update here. Josie went to therapy with my mom yesterday. The report was that she did a great job and walked well for Liz. I had a meeting so my nice mother took Josie. In the morning yesterday, I went out to let the bunnies out of their cage only to find Gabrielle's foot stuck in the grate. It had swelled up and it was impossible for me to pull it back out. Of course I tried and during the unsuccessful attempts, the bunny bit me hard on my finger. It drew blood and really hurt. The bunny has been sick for a few weeks which freaked me out. I had to call Al at my dad's office to bring wire cutters over and help cut the cage to free the leg. Thanks to Al we got her out. From there I had to go up to school to meet Josie and thank goodness I ran into Michelle Urata (Dr. Mark Urata's wife who is also a doctor). She said I definitely needed a Tetanus shot. She was the greatest to call Mark and had him bring one home that night. So this morning I ran by their house to get my shot. What luck we are having. Thanks Urata's for taking care of us once again!! Love that I talked you into moving to La Canada 7 years ago!

On a fun note, my friends, Camilla, Dolly and Ann Drummond stopped by for a very impromptu lunch. It has been so long since I have been able to visit with any of my LC friends. What a treat.

Josie is doing much better today. I think she has made a full recovery now. Thanks be to God that she is ok. Mark Urata and I sort of decided that after the new year would probably be a good time to start putting some kind of skull on. We will start looking at that now. Freaks me out to do it and freaks me out not to have it. I am thankful we are in good hands.

Przemek- I took video the day I spoke to you but it was so bad, I am going to re shoot it when we are at Liz's tomorrow. I will tape her with her new canes and her red. If you don't mind, can you look at it on Friday? Sorry to hold you up about this.

Con Mucho Amor, Jenny and Josie

Update

Hi All- thanks for all the supportive calls and emails. We appreciate the concern. Josie did fairly well last night. When she woke up this morning her stomach was still fairly upset and her head and neck still ached. Obviously, she wasn't up to going to first communion today either. I let her stay in bed playing and resting. We got her out for a little stroll around the block this lat afternoon. The fall definitely took a toll on her body. Fortunately, she is fine and her body is recovering quickly. We were so incredibly lucky. Off to bed for me. I am exhausted so off to bed I go too. Jenny and Josie

so...

Were to begin about today? Josie was so excited this morning (as you can see from the pictures) to get all dressed up and go to her first communion. She took the class picture and then we were heading back in the room.

Ciana, Josie and Sophia


Yes, you are seeing this right, we are in the hospital.

I went to fix the strap on her cart while she was talking to Fr. Kevin and she fell out right on her head. It was horrific to be that close to her and not be able to grab her. I quickly picked her up to realize that she was knocked out and non responsive. I yelled for someone to call the paramedics and took her to the bench. Amazingly enough one of the only people standing there was a pediatric surgeon from Childrens Hospital Los Angeles (I thought I knew all of them?! I do now). Dr. Wang immediately started helping Josie and I. He made sure she was stable while we waited for the paramedics. She started to come to after about 4 minutes but obviously dazed. She kept asking me to hold her hand and my mom and I already were. She couldn't feel her arms. Another miracle, Noreen Clark, from Childrens, was also there and was able to get Dr. Mark Urata on the phone. Long story needing to shorten up...the paramedics transported her to the hospital where they very quickly CTScaned her. Everything looked great. At this point, she was totally acting herself and announcing that she had to go home because she was having a party. She got her wish, they discharged her at the start of her party.

We had such a wonderful (now pre communion) party. It was remarkable to have such amazing people in our lives. The neurosurgeon, 2 anesthesiologist, nurse, and plastic surgeon who separated the girls were all there. Also her therapists, friends and family. We are truly blessed by all of you. It turned out to be a special day. It brings to light how fragile life is and to be thankful for every moment we are given.



Luke and Josie

Our dear friends, Pam and Scot Finck. The fincks were the first ones to babysit Josie right after she got out of the hospital. Hey, You guys still available??


Josie and Friends and her wonderful Great Gramps.



The important people in the girls life that separated them and their amazing therapists that treat them. Wow, what a picture. It is for these moments that we are eternally grateful for what these wonderful people do for others. There aren't enough words of gratitude.

Susan and Jen, the girls fabulous PT and OT from Childrens Hospital Los Angeles

Josie and Teresa

Josie and Dr. Mark Urata

She was feeling a bit rough in the head and stomach tonight, but she has been through a lot. I will watch her like a hawk tonight and hopefully she will be great when she wakes up. We were going to try to take her to the 9 am mass for her 1st communion, but I think we won't push it and we an do it when she feels up to it. She was so ready to walk today. I still want that to be very successful for her and with a headache it might be too hard.

Please keep her in your prayers tonight. She needs the strength. Thank you, Jenny and Josie