Thursday, December 16, 2010

Much needed update

My sincerest apologies for waiting so long in between post. Like all other Americans, we have been busy enjoying the busiest time of year. I'm going to give a quick photo update since I am too tired to form normal sounding sentences. I will update with words later.

Last weekend we were invited by Josie's sweet school aide, Anna Galante to see her churches live Nativity scene. I took Josie, Luke and Carson. We drove through it twice because they liked it so much. Thanks Mrs. G!!

Slumber party at Luke's house.

We got 2 Christmas trees this year. A big one and a small "Josie's" tree. Josie only had an interest in decorating her own. Her are some pictures of her doing all by that phrase.

Every year since I was a little girl, we go to the annual Oakmont Country Club Christmas party that has the Bob Baker Marionette show come. It is fun to relive my childhood memories through the eyes of my beautiful daughter.

This might be as close as we ever get to Santa and the only picture she may ever have with Santa. If you look really hard you can see him in the background. At least this year she made a valid attempt to even be in the same room with him. Yikes.

Playing catch with their new stuffed animals with the other kids on the dance floor.

Luke taking her around. He loves to take her with him so they can play. Too cute!!

Josie with Great Grandma and Grandpa

School is wrapping up tomorrow for Christmas break. Feels like we just started and now a break. Well we always welcome a vacation. Thanks for checking in with us. Hope you are all enjoying the greatness of the season. Jenny and Josie

Thursday, December 9, 2010

New Adventure

First few moments in her dynamic stander

Had to try out opening and closing the door by herself

Busy at work the next night

It is amazing to think that you can find something in the back of a garage in a big box that could change a person's life. Better yet, if my brain was functioning on all cylinders I would have remembered that I put it there last June. So here it is...a dynamic stander by Rifton. Here is the background. Last June, 2 days before we left for Michigan, a local hospital called to offer me an almost brand new dynamic stander that they ordered in the rehab department for a kiddo and never used it. They wanted to give it to Josie or Mending Kids. Well since I was leaving 2 days later for 5 months and I was packing my house so the renters could move in, I just picked up this big box, never opened it and put it in the back of my parents garage. Fast forward to Monday night...I went into the garage to put some of the boxes that I shipped home from MI in there and noticed this great big box taking up a lot of room. You can imagine my shock when I opened it and realized what it was. The next day after school, I brought it in the house and set up the dynamic stander. Josie went crazy. She spent the next 2 hours STANDING and playing. She played with Luke and he pulled her where ever they wanted to play. She rolled herself all over. She LOVED it. It even had to stay in our room while she slept that night. The next morning the first thing she wanted to do was to get in it. I made her get dressed first so she could be ready for school. She even ate breakfast standing at the table while I was in the back of the house in the shower...that is how safe she is in it. We did make a rule that she always had to walk into the house with her canes and also to the stander if she got in it later. I can't let her get away with not using the canes. She is so good and sturdy on them she can't lose that. It is so exciting to see her joy with the new found independence. The stander is too small for her technically so I am ordering her bigger wheels so she doesn't have to bend over to make it go. I can't believe in 2 days how much more time she spent standing and weight bearing because of this thing. It is so good for her on so many accounts. Aw yet another new adventure in her life. PS. If you were at Costco yesterday and she took off your ankles while doing her fancy dancy spinning trick, I apologize!!

As for the rest of the week... the girls got to be at therapy together on Monday. They do love to be together. Josie rather play with Teresa the whole time so next week we will have to insist on some harder working during that time. Teresa is getting better with her standing in the spider inside the cage. I can't say she loves it but starting to tolerate it a bit more. Liz and Josie were happy to be back together. Liz was more excited to be together without a seizure adventure this time...sorry Liz, she must have been saving them all for you!!

Last night was the TACH fundraiser for Children's Hospital Los Angeles at Round table Pizza in La Canada. TACH stands for Teens for the Advancement of Children's Hospital. What it is is a student program that raises money and awareness for the adolescent Medicine program at CHLA. A group of teens started this a few years back and now it is a mini class at the high school. Anyway, Josie was helping the teens last night check in the volunteers who came. She loved doing this and the kids where cute to have her. We ened up taking our pizza up to Aunt Steph's to have a pizza party there with the boys.

Mending Kids is putting on another cardiac mission for the next 2 weeks in Ethiopia. Our team over there is doing an amazing job saving the lives of so many children. I have attached the link to a news report that Dorothy Lucey did on FOX from over there. Dorothy is local morning news reporter in LA and is also on our Executive Board. There will be other segments as well and I will let you know so you can see them.

Also, Ann Drummond is doing a blog from there and you can find that on our MKI website at under the tab Blog. Unbelievable, lifesaving miracles that are happening there. Bless the children, families, surgeons and all on the mission team.

That is it for now. Off to the OC tomorrow and will return Saturday. Will post again then. Jenny and Josie

Sunday, December 5, 2010

Wonderful Weekend

The Sweet Sisters- they love each other so much

Wenceslao holding Teresa

Jorge modeling his new backpack. He starts school January 16th

Dora the Explorer - Monica

It is always hard to end a joyous weekend. We have had so much fun having everyone here for 4 days from Guatemala. What amazing and brave souls Lety and Wenceslao are. Their lives have been less than easy, yet they face each day with happiness and hope. It is comforting knowing that are sweet girls, Josie and Teresa come from such good people.

This weekend we mostly just played. Yesterday we did a bit of shopping for them and then back to the Cajas's house to just be together. Josie loves playing with Jorge (named after the neurosurgeon, Dr. Jorge Lazareff, who separated the girls and Monica. They are good little buddies. Today we had the pleasure of going to church with them. Werner Cajas is the pastor of their church. At the beginning of the service (which is all in spanish) Werner told the congregation about Josie and that she was the sister of Teresa and that I was her mom. He went on and on about the story and why we were all there together today. He also told them that we don't speak spanish so if the congregation could say welcome in english. They did and Josie and I answered back with, "Gracias". They whole place erupted in laughter with our spanish answer to their english. Werner, I did take spanish in high school and college..wish I would have listened closer to the teachers then!!

After church we went back to the house to be together before they had to leave tonight. Lety made homemade tortillas. What a treat. They don't even compare to the store bought kind. Lety was teaching us all the art of tortilla making. She is very good at it and yes it does take a bit of talent. We all had some good laughs when I was trying to learn. I couldn't get mine into a circle to save my life. She was doing them with her eyes piratically closed. Too much fun. Goodbyes are always tough. We do our best to keep our chins up until we can be together again. Josie and Teresa handle it really well and that is the most important.

We will attempt to start school again tomorrow. Josie is almost completely well. The best part it that her seizures have completely stopped for the the last 2 days. I think she is free of the clusters and actually seizures all together again...Yeah Omega!! Good night and sweet dreams, Jenny and Josie

PS. Przemek and Sylwia, Josie tried to call you guys today. Call her when you get a chance. She is really missing you guys.

Friday, December 3, 2010

Visit from Guatemala

Meeting in the lobby of Children's Hospital Los Angeles

Everyone from Guatemala is here to visit for the first time in over a year. With Josie and I travelling so much and Teresa going in and out of the hospital we never found time to bring the gang up from Guatemala. The first day together was an adventure. Teresa wasn't feeling well so we all met at Children's Hospital Los Angeles for her to be seen by the doctor. After being seen in the regular clinic they had her go to the ER because they were worried about her shunts. Long story short and thanks be to God, she is ok and was released without an overnight stay. So that took care of yesterday.

Today we just spent time together at the Cajas's house. I think Teresa was the most excited to have all the action happening around her. She is doing so well and is incredibly alert and responsive. So great to see. Josie loved playing with the kids, of course. She just talks like they have any clue what she is saying. They don't speak a lick of english and her spanish is spotty at best. Good times. Jenny and Josie

Wednesday, December 1, 2010

Getting Better

Josie felt a bit better today. She actually sat up and played this morning. I have seen less cluster seizures today which is a really good sign. She will stay out of school for the rest of the week. We don't want to push her with a compromised immune system. We have everyone coming from Guatemala tomorrow. We haven't seen them in over a year because we have been gone so much. It will be nice to be together. Josie is excited about spending 4 days with her sister. I hope she will be well enough to see them tomorrow. Keep your fingers crossed that the seizures keep going away. I did give her more Omega. Can't stand seizures. They turn too quickly and are so easy to lose control of. Keeping our prayers going. Jenny and Josie