Sunday, February 28, 2010

Fun, full weekend


Audrey and Lilly

Audrey

Josie, Lilly and Audrey

Dawn and Josie

Mending Kids Gang at Dawn's wedding

Josie taking Hopa for a walk. Hopa was so patient with Josie's speed.

Hi All, As we jump into bed tonight we are happy to recall the fun times we had this weekend. Friday after school Josie, Lilly, Audrey and I went to tea and then home to play. They all had a good time together. Saturday Josie and I went to Irvine for Dawn Head's wedding. It was a wonderful wedding with a beautiful bride. Thanks Dawn for having us. It was nice to be out with some of the Mending Kids folks instead of always just working together. We had some good laughs. The rest of the time we spent with the Amigleos. Josie loves being with their 4 kids. Anne Marie and I have just started in this exciting, new business opportunity together so while the kids played we got some of that done. Back in time for church tonight, grocery store, bath and bed. All around nice weekend. I hope everyone reading this is doing well. We appreciate you taking the time to check in. Love, Jenny and Josie

Wednesday, February 24, 2010

Meds

Josie went for a blood draw today and we got her numbers back tonight. She is still on the high side of the normal range but out of the toxic levels. My question remains (and I can't seem to get an answer on it), is if she is still high on a low dose don't you think that still remains toxic?? I am not having her go through major liver trouble over this. Time for some concrete answers or will go out again to find someone who does know. You can never get complacent or comfortable with these situations. It will lead to great trouble.

These is my rant on meds. Frustrating!! Just go away seizures.

Besides this all is well. Will update tomorrow with some positive news!! Happy night, Jenny and Josie

Tuesday, February 23, 2010

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

Monday, February 22, 2010

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!!
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Sunday, February 21, 2010

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

Friday, February 19, 2010

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.

Tuesday, February 16, 2010

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

Monday, February 15, 2010

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)

Thursday, February 11, 2010

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

Wednesday, February 10, 2010

Teasing Teresa

Today after school we got to go visit Teresa at Childrens Hospital Los Angeles. She is still in for her shunts. They are still externalized and will hopefully be put back in her next week as long as the fungal infection clears up. She is strong and the rest of her vitals are staying normal. The GI doctor will go in tomorrow (if they have an operating room available) and replace her G tube to a GJ feeding tube. They aren't letting her take in anything by mouth which is unfortunate because we worry that she will start to loss strength in her ability to eat. She was making great gains in this area.

As we were getting ready to leave the hospital, I saw that Teresa was fake sleeping. She does this a lot. I got right up to her and told her that I knew she was faking and that she was really awake...no reaction. Then I leaned forward again and said goodbye and she answered with a hmm. So I did it again and so did she...hmm. I told her I knew she was faking and she just smiled like a Cheshire cat!! This went on for about 15 times back and forth. If I said bye whe would answer back with her hmm sound. If I said anything else then she wouldn't talk. She was purposefully teasing me. I love it!! She is so there and nobody seems to realize it. This was her exact personality before separation. She was funny and a jokester at one years old. I think it is that great fiestyness(sp?) that keeps her going. I can't wait until we go back on Monday to play with her. By the way, Josie was loving being with her today, too. She spent most of the time talking to her and holding her hand.

I saw some more progress with the walking today. She is taking better steps that seem to have more control. We didn't have many opportunities to walk at school today, but she did a lot at home. I just need to work on her speed. We see Liz tomorrow she I will get ideas from her on how to approach this.

School was good today. One alarming thing happened. A little bit before we were going to leave she had a seizure that was a little bit harder and a little bit longer but still not in the grand mal category. She was walking with my assistance back to her seat from the carpet. All of a sudden she wasn't moving her feet. I told her to move and she didn't answer. I then realized that she couldn't answer that she was seizing. So it past like normal and off we went to her seat. Here is the alarming part, she had to write her name on her paper. She started and she put SOJ with the J backwards. I erased it, thought she was goofing off. I told her to write her name properly. It was eisoj with the e upside down and the j backwards. Even when she was learning to write her name in kindergarten she never ever put it backwards. A bit freaked out, I went to show it to Mrs. Watts. An you can bet your bottom dollar that the neurologist will be seeing this on Monday at her appointment. Freaky!! 2 minutes later she did all her work. Wrote in the correct order including her name. Some wire must have crossed during that seizure that enabled her from writing forwards. The brain, especially hers, is a mysterious thing.

Ok, off to put the final touches on the Valentine bags for tomorrow then to bed. Looking forward to a 4 day weekend. We are going to Arizona. More on that adventure later. Jenny and Josie

Monday, February 8, 2010

Better Walking

Today I definitely started to see the walking improve. I felt like we were getting a bit stagnant and it was worrying me. Today at therapy, she began to take very controlled steps especially with her right foot. She is beginning to control muscles that she hasn't ever been able to do in her feet. I will continue to pick up the frequency of walking at home. I let life take over a bit and I need to settle it back down and focus in on the importance of giving her every opportunity to walk. Liz is great at getting her back on track. Josie is enjoying having Bree, Liz's PT student, work with them as well. It is another person for Josie to entertain.

This morning I had to attend our Mending Kids board meeting. Unfortunately for Josie, she only got to go to the first hour of school because there wasn't anyone to stay with her the rest of the day. I hope they find her the right aid soon. I can't continue to put off life much longer and not get my work done to help support us. On the flip side, I can't afford to have them put the wrong person with her just to have someone there. We did have a very productive meeting which is always helpful. The video below is for Przemek and Slywia's review. We are trying to work on picking up the pace of her walking so she can begin to keep up with others. Thanks to all of you who are reading this. We appreciate the support. Jenny and Josie
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Sunday, February 7, 2010

Baby Shower for Baby Richards






My grandparents had the nicest baby shower for Steph and Mike tonight. It was fun to all be together to celebrate Baby Richards who is due March 22nd. Steph looks and feels great. Luke is very excited to be a big brother. Tonight he was just excited to play with cousin Matt. Brian, Michele, Matt and Trent were down for the party. Josie, of course, loves having all the cousins around. Since we still aren't in our house it is like on big slumber party at grandma and grandpa's house.

We got to go to the Hartman's for the first half of the game today. Always great to be with those friends. Josie had fun playing with the kids and the new guinea pigs.

Thankfully we are all ok from the mud slides. Thanks for all the calls from those who live out of state to check on us. Steph and Mike couldn't get out of their street yesterday because there was a slide across the main road. It was cleared up within a few hours. We pray for those who did have damage to their homes. Hopefully the hillsides will have time to dry up a bit before the rains come again. Good night, Jenny and Josie

Saturday, February 6, 2010

First Reconciliation

This morning was Josie's first reconciliation. What a special event. There were 90 children receiving the sacrament of confession for the first time today. I could tell some were fairly nervous. Josie was so calm about the whole process. We have a very caring and supportive priest at our church that I knew would handle the situation perfectly. After the group service the children lined up for individual confessions. Josie was first in line and was so excited to get her own moment with Fr. Jim. I couldn't hear what she said but she was excited to go through it. I was so proud of her.

After reconciliation, I went down to Irvine for a training for a new company I am going to rep called Amerisciences. I am so excited about this company and the opportunity it has. It is a pharmaceutical grade wellness company that predominately sells to physicians. They are teamed with NASA to develop the purest products with the most bioavailability (absorption rate)on the market today. A great majority of the people who where there were doctors. A few of them practice at USC as well as teach there. I will post more on this company as I learn about it. I am so excited about the products they have. I am ordering samples so some of you might be lucky enough to try them and give me your personal feedback. My friend, Anne-Marie loves the energy and the AS 10 super food drink. Can't wait to get my hands on this stuff. Stay tune, more to come...

Off to bed. My head is spinning with so much to digest from a great day. Our best, Jenny and Josie

Thursday, February 4, 2010

Kick Ball






So the new game of choice at recess is kick ball. She decided that since the ball is rolled on the ground this would be the perfect ball activity for her. When it was her turn to kick the first time, I let her start running and I just balanced her. All of a sudden her competitive side kicked in and she told me to hold her and RUN!! Just remember: don't tell her she is handicap because she still doesn't see it!! By the second recess the game had picked up popularity and we had 15 on each team. She kept telling me that she just has to kick and run. She forgets that her horse (me) isn't as quick as she would like. So cute.

This morning it was readers workshop in class the kids get to pick a book and sit anywhere in the classroom to read. Today Mrs. Watts was reading with Josie in the classroom library area. Cole thought they looked so comfortable that he just laid down next to them and read his book. See the picture above. Darling!

Today was parachute day at P.E. Nothing more fun! See pic above

We have to pick up the frequency of her walking again. I feel like we lost a bit from being sick last week. I can't afford her to go backwards at all. I have to remember not to let life get in the way of her progress. It is so easy to regress because it is so much effort to maintain and even more to advance. Don't get me wrong, she hasn't really lost anything she just hasn't moved forward this past week. (Przemek and Sylwia don't freak out. I just want to see more forward movement) I have my work cut out from me this weekend.

Off to bed. 2nd grade will come fast tomorrow. I sure hope they find an aid. We are finishing up week 5. Night, Jenny