Wednesday, June 30, 2010

UCONN Dairy Farm and Bar

Today was a fun day in Connecticut. Josie had 3 hours of therapy. We were supposed to have had a 2 hour break and back for one more, but her head was hurting so much she needed the rest of the day off. I think the main problem is that she is laying on a hard pillow. As most of you know, she has the hardest time with laying down and especially on hard pillows. I will bring one of ours tomorrow and see if that helps.

After therapy, we heard of the Dairy Bar that is part of the Dairy farm on campus. They make there ice cream fresh everyday with the milk of the cows up on the pasture. What an amazing place and the ice cream was incredible. After we had our ice cream we went to see the dairy cows. It was hysterical to watch her freak out when the cows tried to come see her. Of course they were behind bars, but she couldn't get past the fact that they couldn't get out. She then realized where beef came from. I may have turned her into a vegetarian today, because she doesn't want to have to kill Violet, Sunset, Bacardi or any of the other named cows at the dairy. Cute, sensitive little soul.

We swam tonight and had dinner in bed (there isn't a table in the room). She thinks this is great fun living in a hotel. Challenging at best to get good food in her without ordering out every meal. I will be glad to get to a real kitchen again.

We are appreciating the therapy and people here. What a lovely staff that is here at Crossroads. Very religious which leads to very peaceful environment and happy surroundings. What a true blessing. Off to bed to start again tomorrow. Jenny and Josie

Tuesday, June 29, 2010

1st day in CT

Great first day. The treatment here is beyond amazing. I can't explain the exact procedures, but trust me it is fascinating. It will be fabulous to have this therapy and MI therapy fit together. We might see remarkable, fast progress with using them both. I am excited for Przemek and Sylwia to see the changes.

We were so beat today, we went to the first part of therapy and then got to go back to the hotel for a break. We took a nap and had to set an alarm to get back in time. We could have slept until tomorrow. Off to bed now so we can be functioning human beings tomorrow. Night, Jenny and Josie

Monday, June 28, 2010

We are off and running....

Well maybe not "running" yet, but figuratively speaking we have embarked on our next great adventure. We left this morning for Hartford, Connecticut. We will spend the week here at a speciality clinic. We are looking to address seizures, her head tilt, nervous system, body alignment and whatever else comes our way. I quite frankly don't know much about this treatment, but it came so highly recommended that I thought we could at least explore the possibilities. I will let you know more about it after our day tomorrow.

It was a mad dash to get out of California. It is never easy to pack up your entire house. It was a little easier this time, because I never moved a single box in when we returned in May. It is amazing that in 2 short months the junk that one can accumulate. Last year was definitely more fun to move since I had my dear friends, Dolly Dickie and Camilla Hartman helping.

The quick lead up to the departure...2 weekends ago we were in Tahoe with the boys and whole family. Josie, of course, had a ball. It was glorious having the entire family together including Grams and Gramps. We fished, swam, played, bowled, etc. Martis Camp may be one of the prettiest places on earth. Thanks Jeff, Brian and Michele for having us all.

We spent the weekend with the McEveetys and Caviezels at a wonderful church event. It was a joyous occasion to be together especially with the Irish crew and Chicago crew. If you are in need of great spiritual books to put life in order check out We had the incredible pleasure of spending the weekend with the author, Anne. It was nice to get back on track before taking off for so long again. Thanks all!!

I also got to sneak in a quick night of impromptu cards and dinner at my house on Friday night. Mary, Emily, Camilla, Orsi, Denise, Jenny Rauuli and I had a great time. I am so lucky to have dear friends at home that offer us so much love and support. I'll miss you all.

Josie brought Teresa a friendship bracelet so she wouldn't foget her while she was gone. Teresa seemed so proud when Josie put it on her.

What a sweet moment between the girls. There is so much peace in both of them.

Yesterday, before our event, we went to visit Teresa. It was important for the girls to be together before we leave for so long. We will be home for a day in mid August so we will see Teresa then. The Cajas family is in Guatemala on vacation so we visited with Teresa and the lovely family taking care of her. Teresa seemed so happy and looked great. They are doing a terrific job loving her while the family is away. They have 2 girls, 7 and 8, and Teresa loved watching them play and they would play with her. Oh we love that sweet Teresa girl so much. Josie just adores her. You can see from the sweet pictures above.

I better get to sleep since we have to hit the ground running at 8 AM EST time. Not an easy task for us. I will be posting every night again like a did last time we were gone so long. Thanks for taking your time to check on us. Please send emails and let us know what you all are doing. Cheers, Jenny and Josie

Tuesday, June 22, 2010

Camp Hullabaloo

Last Thursday, Camp Hullabaloo was open for camp...well at least for Josie's birthday party. The girls had such a great time. I know this blog is late, but we have been in Tahoe since then. At Camp Hullabaloo, they decorated bandannas, roasted their own hot dogs, ate dinner in the outdoor "mess hall". The girls played pin the tail on the donkey, horse shoes, ring toss and badminton. Ann Triba came over and sang campfire songs around the campfire with them. They all made s'mores and had cake...sorry parents to send them home with so much sugar. Camp was a blast and Josie was so excited to celebrate her birthday early so she could have one more celebration before we leave next week. Thanks all for making her feel so special. Jenny and Josie

Thursday, June 17, 2010

Last day of school...Hello Summer!!

Graduation from the sandbox

The last day of school is always bittersweet especially after the fabulous (half) year we have had and with another incredible teacher. Of course it is me who tears up with the goodbyes. I have never liked saying goodbye. This year I had the great pleasure of being in the class for over 3 months. Mrs. Watts and I had a great time. Thank you Pam for being a wonderful teacher and now a friend to both Josie and I. Your teaching is a marvel to watch and the kindness and respect you show those kids is remarkable. Thanks for such an incredible experience for Josie and I. We will miss you so much next year.

Thank you also to our dear principal, Donna Robinson. She is retiring and deserves a big round of applause for all she has done for the many students that have come across her path. We are all the fortunate ones to have had her lead our kids. Josie is really able to be at that school because of Donna's hard work and dedication to making it work for everyone. Donna, thank you, congratulations and know that you will missed tremendously.

After school, Jenny Raulli and I surprised Audrey and Josie with getting their ears pierced. They have been asking for so long to do this and to do it together that we decided it would be an nice end of the year/early birthday present. I ended up taking them by myself. They were adorable and brave. Audrey went first and the 2 girls in there did her ears at the same time. I knew that if we did one ear at a time I would be bringing home a couple of pirates because there was no way I would have gotten them to do the other ear. Thankfully Audrey was brave and didn't cry or Josie would have never had gotten up on that chair. Josie gave a whimper after it was done, but they both have beautiful little diamond studs in their ears. Now to keep them clean and infection free.

I can't believe that Josie is done with 2nd grade. It is scary how fast the time is going. I am so proud of her year she has had. It is great to be in Michigan, but hard to miss a half of a year. We are so blessed to have the friends that we do that accept her right back in when she returns. We definitely have some catching up to do, but considering the challenges that she faces everyday (and with a smile on her face may I add) we are doing ok. I'm proud of you Buggy!!

Monday, June 14, 2010

The Fantastic Fincks

We had the great pleasure of going to the Finck's house for dinner last night in the Pacific Palisades. It was so great to be with Pam and Scot and their lovely boys, Christopher and Griffin. Josie was, of course, thrilled to be with the boys. We know the Finck's because Pam and I have been apart of Mending Kids together for the past 9 years. She was our President and they have hosted many children throughout the years. Pam and Scot were Josie's first babysitter. Before Josie was even 2 years old, Pam and Scot took care of her for the day when I needed to be somewhere with work. Pam also used to spend many hours with the girls when they were still conjoined in the hospital. Scot is Josie's music guru and thinks he is so funny. Thanks for a wonderful evening, Finck's I should bring Laker cookies every time for you all because they seemed to work in your favor!! Can't wait until we meet up again.

Before we went to the Finck's. we were in Manhattan Beach with Jeff, Morgan and my parents. After lunch, Josie realized that there was a Sketchers shoe store on the corner. If anyone watches TV for even 10 minutes a day, you have heard the commercial for Twinkle Toes shoes that glow...guess who had to get them?! Let me remind you that Josie has never been able to go to a real shoe store and pick out real shoes that she wants. She got communion shoes, but there was only one choice that would stay on her feet. These are the first pair of shoes that she actually got to look at and choose herself. She was so priceless in the store. She was squealing with excitement. Uncle Jeff was the hero and bought her her new shoes for her birthday. She still won't take them off. So she shows up to the FIncks in her crazy new light up shoes, hair in pony tails (that is a challenge with half head of wig and many bald spots around the head) and her new back pack bag that the new shoes came in on her back. Classic. She is for sure the happiest person on earth. She embraces life.

We are now getting ready to start moving out and getting back to Michigan. We leave in 2 weeks and aren't quite ready. At least there isn't so much to move out this time. We have to wrap up a few things here first. Dr. Mitchell wants to see Josie on Thursday, so hopefully we will get some kind of answer or direction from the seizure testing. Happy Monday to all. Jenny and Josie

Friday, June 11, 2010

She's Back to herself

Guy Smiley, Carson

Josie putting Carson to sleep.

Happy Birthday Big Boy Luke!!

Hi All, Sorry for the slow posts this week. We are having such a fun, yet busy time gearing up to finish the school year and preparing for Michigan. This Monday was Luke's 3rd Birthday. How much fun that the bear cubs are having their 3rd birthday's within a month of each other. They aren't babies anymore. Happy Birthday Luke!!

This was the last week of therapy with Liz. Josie finished up strong and is more prepared to go back to Sylvia and Przemek. Thank you Liz for all your amazing work you do with Josie. We will miss you and now be sending you videos to review. Can't wait to return with her new tricks to show you.

Josie has been off the Topomax (seizure med) for a week now and I can't begin to tell you how absolutely thrilled I am. She is absolutely back!! You can't even for a moment believe the difference. Now seeing the change breaks my heart that I couldn't stop it any sooner. We just put her through 4 months of torture literally. She was so trapped in her mind and body it is scary. Her short term recall came back almost instantly. Everyone has noticed a difference. Liz even saw it in her walking. For the past few months it was like she didn't even know what right and left was or her pattern that was so ingrained in her head that it was impossible to forget. Joy saw that her personality came back in the way she interacted with her bike vendor that she hadn't seen in 2 years yet was able to recall the events that happened 2 years ago. She learned fractions today with so much ease. Last week when I asked her basic math facts she looked at me with a blank look and answered totally wrong. I am so relived that her brain wasn't permanently damaged from the meds. She doesn't seem to be seizing any more than usual which is great. Now we can keep her learning going since the past few months have been lost.

Hope all is well in your lives. We are thankful for ours. Jenny and Josie

Friday, June 4, 2010

We escaped

Josie was officially sprung from CHLA today. At about midnight last night she was about to discharge herself. She did a really great job and absolutely hit the last night. After the fire alarm went off 4 different times with a code red for a half an hour each time from midnight until 4:30 AM, we were both done and ready to leave. We had and met some of the best nurses there yet. The nurses on that floor go above and beyond. It is a strange floor in the sense that not a lot of parents visit or are involved which I find to be incredibly sad. One little 12 year old darling friend, Kindra in the room next to us was there for the 4 days we were and her parents never came. The saddest part is that her brother was inpatient too, but they couldn't be together because of isolation. She was even taken in and out of surgery without the support of anyone. The nurses really step it up to love these kids and I think that is why it is such a special and unique floor.

Tonight was the Girl Scout campout at Paradise Canyon. It wasn't looking good for our participation for a while because they weren't talking about discharging us. All of a sudden we heard the nurse announce in the hallway that she got discharge orders for Josie Hull. Well Josie heard her as well and let out the biggest scream. A couple people came running only to find out that it was a happy scream. I had to thoroughly bath her and scrub her hair. They had to use this stuff that is like thick sticky toothpaste to get the leads to stick and stay on. What a complete mess to get out. Thanks to Janice Shue for watching the rest of the troop until we got there. We pulled it together and all had such a great time. The girls did their cheers with their pom poms and were adorable. I love our great little troop.

So I wish I was going to be able to give you a complete report on all the great new things we are going to do with Josie's seizures, but I'm not. There will be much deliberation in deciding the best route. What we have clearly learned is that the ones (which are most of the meds) have significant cognitive side effects that she reacts VERY poorly to. You can already tell a difference from the deletion from Topomax less then 2 days ago. She already has a quicker recall. Not normal, but better. Let the true exploring begin.

I hope everyone has had a great week and looking forward to a lovely weekend. We are! Jenny and Josie