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

Tuesday, November 30, 2010

"Welcome Back Josie"

Adorable sign made by Audrey Raulli

One round of hugging...lots of that happening today

In her new classroom. They swtched sits right after this and she now sits in the front.

Coloring at recess

Josie returned to school on Monday. She was so excited to be back and see her friends. The girls were so cute. They would talk a bit and then all hug each other and then talk again and hug over and over. Even the boys were running over to welcome her back. We are lucky to have such great kids support her here. I stayed the whole day so we could meet with the appropriate people about her current needs, new developments in her physical ability and her education ability. I was so excited to share how much progress she has made while we were away.

We left school after lunch in order to get to Liz's for her first day back to therapy. Let me back up a bit. On Sunday night she acted like she was coming down with a cold. She was so anxious to get back to school I decided she must be well enough to go and I would be with her if she needed to leave. Ok fast forward to Monday afternoon. We arrived at Liz's and when we walked in the door, Liz came over to hug Josie and talk to her. Josie wasn't responding back, which Liz commented on and is not like her at all!! I noticed in the car as we were pulling in that she had a seizure, which she hasn't been having. Thought nothing of it and kept going. Liz went to the room to get it set up while Josie walked down the hall with one cane. Her steps were so off and I was actually getting mad at her for not walking correctly, especially after her progress in Michigan. As we walked down the hall she had about 4 more seizures in 3 minutes. Odd, but we kept going. At this point I was more concerned about the walking. I put her up on the bed and Liz began to stretch her feet. She began to seize one seizure after the next. When we got to 10 I ran to the car to get my phone to call Dr. Mitchell. The seizures continued and I couldn't get through to neurology. Finally she wasn't responding very fast so Liz and I put her in the car and headed to the local emergency room. As we drove over, I was able to get the resident on call paged. At first he wanted to go over her complete medical history before he went to talk to Dr. Mitchell. I told his with all due respect we would be on the phone for 3 weeks just to cover the history and to please just go get Dr. Mitchell, she has the history. He went and got ahold of Dr. Mitchell. A half hour later, while sitting in the parking lot of Henry Mayo Hospital, the seizures stopped. We decided to drive home...there is always 911 on the way if we needed it. As we were pulling up the resident called back. He thought the onset of the seizures were because of the cold. I always try to keep her away from anyone sick when possible because I knew there was a possibility of the seizures increasing with sickness. Luckily she has never had this happen when she has been sick in the past. The resident thought that the seizures would stop when she got well. He doesn't want her going anywhere until she is completely well because if she gets sicker she will seize more and they could escalate into grand mals. He thought I should keep her home for the week so she can completely heal and not compromise her immune system anymore. Joy, her PE PT, said that all her seizure kids are sick with this cold and are experiencing an increase in their seizures. One of her little guys is in the ICU because of it. Award winning start to school. Calling in sick the second day was extremely embarrassing. I try so hard to make her fit in like a normal child and this definitely doesn't help my cause. Well, doing the best we can. Today she felt so bad the only thing she did was go from the bed to the couch back to bed for a 3 hour nap out to the table for soup at dinner and back to bed. She feels awful. Hopefully tomorrow she will turn the corner. She had a few runs today with cluster seizures. An episode of 6, 10 and 8 in a row. I haven't seen any clusters tonight. I will up the Omega again tonight to help offer more brain support. She seems to do better with this. Wish I had a more positive and cheerful post, but on the bright side, glad not to be in the hospital. Jenny and Josie

Sunday, November 28, 2010

Stair Stepper

Quick update tonight since we just got home from the desert and have to start school tomorrow. I am so excited to post this video though, so I had to post tonight. We went to the park in La Quinta and there was a great play structure. Josie, of course, wanted to climb up it. She even want to climb the steps by herself even thought she has never been able to do it on her own before. I stood right there and sure enough she climbed all the way up...and then did it again and again and again, etc. She was so incredibly proud of herself. As we were leaving the park she asked if I would go get the camera and video her climbing. I think she was so excited that she has accomplished a huge task that she wanted to see herself do it. I know this will make Przemek and Sylwia happy. I think the person who will appreciate this the most will be Susan Knight, her PT from Childrens Hospital LA. She worked tireless hours trying to get Josie to climb the stairs...Here's for you Susan!! Night. Jenny and Josie

Thursday, November 25, 2010


T - The Family

There is so much for us to be grateful for, but most importantly
family. We were so fortunate to be with the family today

H - Home

We have actually had 2 homes the past 2 years. We are thankful for our family and friends in Michigan who made it like home for us. Of course, we are incredibly grateful for our California family. We are excited to be home for a while.

A - Amen

Josie said the cutest prayer for us at dinner tonight. It was so sweet to hear how thankful she is for her family and her life. Here is the picture of she and Luke saying Amen at the end of the prayer

N - Nice Dinner

We had a nice "feast" as Luke would say. Always a treat to be together.

K - Kids

I can't begin to say how grateful and thankful I am to be Josie's mom. What a blessing that God picked me. We are so thankful for all the kids who bring so much light to the world.

S - Sun and Swimming

Swimming in the Sun at the end of Novemeber...thankful

G - Grams and Gramps

My adorable 85 year old grandparents. Angels on earth!!

I - Iannis and In-laws

Our family has been incredibly blessed with amazing in-laws. I can't tell you how lucky we are and how much we like to be together. Michele's family came over after dinner for pie. We always have a good time and lots of laughs with the Iannis and Donahues

V - View

God painted a nice picture in the sky today.

I - Inspiring

These pies were inspired by my Great Grandmother, Grandma Helen's, recipes. We are also inspired everyday by my grandparents and their love.

N - Nephews

Aw the bear cubs. 4 silly little boys that love to laugh. They are a treat and Josie adores them.

G - God
Without our gracious God, we wouldn't be able to be so thankful for all our blessings. We are thankful to him for the family and friends that he has given us in our life. Happy Thanksgiving to you and the ones you love. Jenny and Josie