Sunday, March 28, 2010
Josie, Blake, Taylor and Emma at the end of a fun day at Legoland
Josie and I feel so fortunate to celebrate this day of Palm Sunday. It was a beautiful service at church this morning. Josie very proudly carried her palm leaf while walking (with my assistance) down the isle. It is a solemn time as we go into this very holy week. This is my favorite week in the year.
Yesterday, we had the great pleasure of meeting our dear friends from Arizona at Legoland. It was incredibly special to spend time with them again. The Baileys are such a loving and caring family. We had fun going on the rides. At one point Mandy and I had Josie, the twins and Blake (2 years old) and we were trying to get on the boat ride. I am sure we entertained everyone in line as we were somehow hauling kids onto the boat. We were extremely disappointed at the supervisor who decided that Emma and Taylor, who are conjoined still at the chest, counted in a ride as 2 people. He would not allow us to take the girls on rides for 2 people. We were astounded at his decision. Here the Bailey family gets up at 4 in the morning to get there and he does this. They were just there on New Year's Day and didn't have a problem. We decided from here on out we are only Disneyland supporters!! Even with that unfortunate fiasco we had a good time.
We got to stay at the Amigleo's on Friday night. Anne Marie and I had a meeting in Orange County Friday afternoon and had some work to do together. Josie just adores that family and was thrilled we were there. Anne Marie and I had an event to go to on Saturday night so nice Heather Behle watched all 5 kids (Josie and the 4 Amigleos)for us. It was great to know Josie was in such good hands. Thank Heather!! Josie felt like such a big kid getting to go to the neighbors for movie night. These are the little things that she never gets to experience.
We are getting ready for a big week and then off to Michigan a week from tomorrow. Wow, did that time home go quickly. It is amazing that we are about to go back. Just for 3 weeks this time. We are looking forward to seeing our friends and family back there. Night to all, Jenny and Josie
Wednesday, March 24, 2010
After school and Religious Ed class, we got to go spend time with Carson. Josie and I were so excited to finally get to hold the sweet, little guy. Josie is so incredible with the babies. She loves to hold them and talk to them. They seem to be so comfortable in her arms. Luke is so cute being a big brother. He looks so grown up.
I officially started Josie on her new seizure med. She is being put on Topomax. While I am adding the new med, she still has to take her old one, Carbitrol. It is a slow process to get her to the right saturation levels so we can remove the old one. She doesn't have the sleepiness side effect that this new drug is so famous for having. Yet, I am seeing a huge disconnect in certain areas of her learning. We definitely don't need any further disconnect in this area. She is also delayed in speech slightly where she is taking a lot longer to recall her words when speaking. I hope these side effects subside in the next 2 weeks before we get to Michigan.
Despite the med change, Josie is her happy, sweet self. We are grateful for that. Happy night, Jenny and Josie
Tuesday, March 23, 2010
Today was another great day. School went well. The kids had the opportunity to play chess at lunch recess. This seemed to be a big hit. The last chess club of the year is forming so they are recruiting kids to join.
After school was our monthly Brownie meeting. We did our planting badge today. I bought a few flats of impatiens and geraniums. They planted them in the flower boxes outside of Mrs. Slattery/MuCullough's room as well as outside of the Principal's office window. They had such a good time doing this. Then each girl wrote a letter to the teachers and principal. It was very sweet.
Speaking of the principal, we got very sad news that Mrs. Robinson is retiring July 1st. She is a wonderful fixture at school. She is a great advocate for her teachers, students and parents. She will be missed greatly by all. She has been a great source of strength for me during Josie's years at PCY. I hope we get the same support from the next principal. Thank you Mrs. Robinson for all you have done to better our children's lives.
Good night, Jenny and Josie
Saturday, March 20, 2010
Some of the Mending Kids and I
Anna Margaret and the kids
Josie and the MKI Girls
Anna Margaret and Jhamalet
This weekend is the American Girl Fashion show and tea put on by the Flintridge Guild of Childrens Hospital in which I have the great honor of being apart of. The guild raises money for Childrens Hospital Los Angeles. I only play a small role in the actual running of the event. I did however get to bring the guest speakers from the hospital to share their experience at CHLA with the parties. As I was driving to the event this morning I received a call from our first speaker at the 10 am show telling me that she and her girls were all sick and could not come to the show. Thank goodness I have Josie because my mom was able to quickly get her ready and come down so we could speak about her experience. Phew. The next 2 shows that day I had already lined up some of the children from Mending Kids International to come and one of our care coordinators was going to speak about them. A half hour before they were to arrive, I found out that the kids were on their way but the person speaking had a horrible migraine(with which I am way to familiar with) and so I told her I would speak for her. All 3 shows went really well and I was so blessed to be able to share the stories of all these amazingly strong kids that in their short little lives have been through so much. I am humbled by their strength and strong spirits.
The kid's highlight was to meet Anna Margaret and to hear her sing. She was incredible with the children. Very talented at the young age of 13 but better yet is her sweet and kind soul. Keep that light shining, Anna. Amy - you are doing an amazing job and it was a great pleasure to meet you and your daughter.
Back to speaking about Josie...so as Savonia approached us with the microphone, Josie quickly took hold of it and began to speak. This wasn't planned, yet she was amazing. She thanked everyone for coming and explained that she and her sister were conjoined twins. She also told everyone that she is treated at CHLA and how much she loves her doctors and nurses. Adorable. She will get to do it all again tomorrow morning. I will try to tape it tomorrow. Too cute. She is so strong and brave to do that in front of 250 people. I hope more than anything she will be walking the runway as a model next year.
Thank you to all the wonderful guild members that lend a hand to putting on this great event. It is such a special time for all. Good night, Jenny and Josie
Friday, March 19, 2010
His middle name is John after Great Grandpa John- what an amazing man to be named after!!
Carson John Richards made his grand appearance into the world this morning at 8:56AM. My sister, Stephanie, did an amazing job with Mike by her side the whole way. They make such a great team. Carson is as cute as can be. Mom and baby are both doing really well. We got to sneak Josie into the viewing area of the nursery to take a peek at her 4th baby boy cousin. She was so excited to see him. What a special edition he makes to ours and the Richard's families. Luke will be such a great big brother.
Wednesday, March 17, 2010
Monday, March 15, 2010
Hi All- Short post for tonight. School was great today. Josie is loving to learn thanks to Mrs. Watts. She is so talented at engaging the kids and keeping them interested in what they are learning. Music class was today, which as all of you know, is Josie's favorite past time. Therapy was really good. Good attitude and great strength makes it successful. I have gotten back in the rhythm of making her walk all over the house. I have to admit I got a bit lazy about it but have found the strength to get back there. It is a lot of work, but the benefits are so great. Hope you all are doing well. Thanks for checking in on us. Jenny and Josie
Sunday, March 14, 2010
Tug-a-War at P.E.
Happy Birthday to two of my dear friends, Dolly Dickie and Ann Drummond. Hope you both had happy days and more to come!!
Josie and I have had a much needed restful weekend. We have been going at such a high pace that it was nice to slow it down. We started out Friday thinking that Steph was in labor but the contractions stopped. That baby is very cozy in there, but we are very excited to meet him. My brother Jeff is hoping he will be born on his birthday, March 18th. We will see.
Josie had fun at school on Friday. They played tug-a-war during P.E. as you can see from the pictures above. She loves any team sport she can play. I wish there was more of them for her.
We got some exciting news with a video tonight. Josie's good friend from Michigan, Melissa, who was originally from Haiti, started walking yesterday. She has worked so hard like Josie and want a wonderful reward and accomplishment. We are so incredibly proud of her. Josie watched the video about 15 times. It is inspiring to her to see that it can be done. YEAH MELISSA!! We are so proud of you and can't wait to see it in person n 3 weeks!!
Hope you all had a great weekend. Love, Jenny and Josie
Tuesday, March 9, 2010
The turtle playground that Josie made for the resource class room
Cleaning her rock collection
So a lot happened in Josie world today. First of all she decided that the sport to learn this week was tether ball which she loved. She did finally recognize that there was a line to play behind her because her sweet and adorable friends do what activity she decides on for the most part. At P.E. their group got to play t-ball which was a huge hit (no pun intended).
Josie made a turtle playground for the turtles in the resource room. She was so proud to let the turtles try it out today. She is really an animal lover.
In science, the class is studying fossils and rocks. They got to go rock collecting at school today followed by sorting them. This was really exciting to Josie. She loves to explore. She learned how to excavate them with her shovel. It also carried over to home where we went on another rock hunt and then sorting adventure. I love watching that little brain take in the world. What a treat.
Therapy was cancelled today because Liz is sick so we really worked at home. She had to walk with her canes on her rock hunt. Her legs were so fatigued after the hunt and then standing at the sink cleaning her rocks that she finally asked to sit down. I only have three weeks until we return to Michigan so she has to gain more endurance before we go. She does a great job with Liz. I just have to do it outside of there.
So the head situation has seem to calm down ever so slightly, thank goodness. I have been diligently making sure she is propped on two pillows at night so her head is elevated more. Then in the morning I spend 15 to 20 minutes adding pillows and slowly raising her head. My very lay explanation to this is that maybe the shunt was pulling fluid down too fast when she sat up causing the extreme pain. No one really knows. Just keep working on it.
Good night, Jenny and Josie
Sunday, March 7, 2010
Hope you all had a happy and healthy weekend. Josie and I went shopping for her first communion dress today after church. She was so excited to find what she thinks is the perfect dress. She was so cute modeling it in the dressing room. Anyway, after that she got a kids makeup kit. Tonight she did my makeup in Beauty Salon de la Josie. After I was given the prettiest HOT pink lips, bright pink blush, one eye pink and the other eye green her eyes got so big and she said "Mom, you are scaring me." What in the heck, I am scaring her and she was the one to make me look like that!! Needless to say I was ordered straight to the bathroom to remove the frightening look she gave me. I think it is safe to say that she will at least stay away from the green eye shadow. I was really scary looking.
Last night the Amigleo kids came up for movie night. Everyone was in their pj's and made a camp out in the family room. They watched Troop Beverly Hills from the 1980's and laughed so hard at it. Josie just adores those kids and was so happy they came up to visit.
Happy Sunday night. Jenny and Josie
Tuesday, March 2, 2010
Today the 2nd grade celebrated Dr. Seuss's birthday by having family members come and read with them. It was adorable to see everyone with their blankets and chairs reading with one another. Grandma got to come be with Josie and she was thrilled. The children all made hats as you can see from the above pictures. Mrs. Watts has had the class really studying the life and works of Dr. Seuss for the past week. So cute.
Josie did an adorable board for her "all about me" week. I will post a picture of it up above. We even put in a picture of the girls conjoined expecting there to be some discussion about it. The only question was was that when you were conjoined. Josie replied yes and he said oh. That was it. They are so accepting at this age.
On the medical front, Josie's head is having a really hard time acclimating when she gets up in the morning. It has hurt so badly the past couple days that it is invoking a gag response. Yesterday, she never even made it to school. Today she was a bit late and we had to move very gingerly at that. I need to get someone to really address this. It is getting bad quickly.
Night to all, Jenny and Josie