Friday, April 30, 2010

Getting ready

We are getting ready for Josie's big day tomorrow. This morning I got to leave her at school with Mrs. G. during reading time. I got so much accomplished in 30 minutes. At school it was spirit rally day. They kids love it. Josie came home with me at noon. I had a meeting and the PT who does P.E. with her was unable to be there today. It was a blessing in disguise actually. She was so tired from her big week back that she took a nap. After her nap, we ran up to Ernesto to have her hair and new wig cut. Then off to Santa Clarita to pick up the cane that this wonderful man, Dave at Reeves Automotive, cut down for her. Back home for dinner, the store, try to make heads or tails of the house and off to bed. One more thing before bed, Lilly and Rita needed to be fancy too for tomorrow. They are ready. Please girls do your work with Josie tomorrow. She is counting on you.

Josie is really excited for tomorrow. Will post a full report tomorrow night. Jenny and Josie

Thursday, April 29, 2010

Happy Birthday Emmie Lew

Happy 8th birthday to Josie's dear friend, Emmie Lew. The girls were so cute in the sandbox today. They wouldn't let Emmie come over because they were making her a sand birthday cake. When they were finished they called her over and sang happy birthday to her. Sweet little friends.

Big day for us. School was great. Mrs. G is quickly picking up how to move Josie and work with her at school. I am so excited she is Josie's aid. I think they will work really well together. After school, we went straight out to Liz's for the first time since we have been back. Josie made sure to give Liz Przemek's strict list of things that he wants done while we are home. Of course Liz is happy to comply. I spent most of her therapy getting her new canes cut down to the right height. Not an easy task at all. Josie really wants to use them for 1st communion Saturday.

From Liz's we went to St. Bede for a 2 hour communion practice. At first, I never thought that they would need that long. They actually could have used 3 hours. This is the biggest class to ever go through at St. Bede.

So next I am going to share with you a very deflated moment for Josie. Let me start with a bit of background...when we went to Michigan this time, Josie's goal that she set for herself was to work really hard so she could walk up to the alter from the pew to receive communion. OK, good goal. We took extraordinary measures to make sure we could attempt this lofty goal. She can definitely walk that far the problem is the speed in which it has to happen. While in Michigan, we bought her white shoes as soon as we got there because they had to have a lift put on the left shoe. Took the shoe to the orthotist to have it lifted. We sent my mom down to the church to measure the actual distance so we could practice everyday with Przemek. We taped the distance onto the floor in the gym. We made Maks be the priest for Josie. I think you understand what prep was required. So here is what took place tonight. They lined everyone up from shortest to tallest so of course this would put Josie up front. She is so relieved and delighted because she knows that she can only walk up if she is close. All of a sudden they move her to the very back of the line putting her in the very last pew which is about 8 back. From that spot it would take her 20 minutes to get up the aisle. I feel her body sink. All of a sudden there was a stream of tears rushing down her face. When I could finally get her to talk to me she just said, "I worked so hard, but I can't do it from back here." She was completed deflated. I wanted to lay on the floor myself and cry. I know I shouldn't ask for special privileges (the lady at the airport reminded me many times of that) just because her need are different. This is such a big moment for her not just from a religious stand point but a physical and mental one too. She is going to be able to accomplish a goal that she set. When there was a little break we went to Mrs. Arjani. Josie was crying so hard she couldn't talk so I explained what was going on. She did allow her to move back up to the front. I know this complicates things a bit, but I am thankful for Josie's sake that we could work it out. It is still going to be a really hard task for her to accomplish, but at least now she has a chance. Cross your fingers for Saturday. Night, Jenny

Wednesday, April 28, 2010

Charles Broberg - We will Miss You!!

Big day at school today. Mrs. Ana Galante(Mrs. G.) has officially accepted the position of Josie's aid. I am thrilled that she was the one that we all agreed on. She is kind, patient, nurturing and has been in Kindergarten with a lot of the kids already. She started training today. Josie wanted to work with only her this afternoon. I was happy to see the transition going so smoothly already.

After school, Josie had her last communion class before the big day. She is so excited for this Saturday. All the girls are just so thrilled to be wearing fancy white dresses and veils. They were cute today in class comparing notes.

A bit of sad news, the world lost a great man yesterday, our dear friend Charles Broberg. Charles was a light that touched all around him. He was a wonderful father to 8 children and I lost count on the grandchildren. Heaven must be rejoicing today to have such a special man in their presence. Charles, you will be missed terribly on this earth. You made it a better place for all that had the great opportunity to know you. Broberg Family - you can count on our prayers. Love, The whole Hull Family

Tuesday, April 27, 2010

Back to School

Our Brownie Troop and the La Canada High School Song Girls

Our girls couldn't stand not taking at least one picture with their pom poms waving!

Josie went back to school today after 3 weeks. She received a very warm welcome back. I think everyone in the class came in and hugged her. When she went to P.E. her P.E. group started clapping when she rode her bike in. These kids are amazing! She will need a few days to get back in the swing of things.

I was told there would be an aid starting today. To my very big surprise that didn't happen. Patience.

I brought her home after lunch so we could do her walking and standing routine before we had Brownies today. She is doing so well walking. Przemek- you will be so happy with her left foot. She is stepping forward so nicely with it. I am doing all the cues like you said. Also the new canes will be here tomorrow. I will video her on Thursday when we are at Liz's. She is working well at home. Yesterday she actually told me she needed to practice. I almost fell over.

At Brownies today, we went to La Canada High School and the song girls taught the girls cheers. They absolutely loved it. What a hit. If any of you reading this want a great activity call your local high school. The HS girls enjoyed themselves as much as the 2nd graders. Our troop learned a few cheers to do at the end of the year camp out. They are all in love with their new pom poms. Josie actually caught on fairly quickly. When the girls asked our girls if they were going to try out for cheer leading in high school all but one said yes. The one wasn't Josie. She actually answered, "yeah, I will be walking by then." (and your mom will be your biggest cheerleader.)

After Brownies, Steph and I attempted a walk with the kids. Remember Steph as a 2 1/2 year old, Luke and a 5 week old, Carson. It was a comedy. I think we walked maybe 2 1/2 miles in oh let's say 2 1/2 hours. The kids were hungry, many potty stops, pharmacy and grocery store stops, run into half your family in Trader Joes, baby in need of milk so we sat in the back of Grams and Gramps car. Carson nursed while the rest of us had desert. So whatever exercise we attempted to get went by the wayside with desert. What fun. Steph, let's do it again tomorrow. If anyone is around Foothill Blvd tomorrow after 5pm and wants a good laugh we will be available. Night, Jenny and Josie

Monday, April 26, 2010

Back Home

We are home in our real house and trying to get settled in after 10 months. Thanks Mom and Dad sooooo much for letting us stay for so long. It was the greatest slumber party ever. We loved being with you.

Josie is having fun getting her stuff set back up. She and Cole Drummond got to have a little play date yesterday and he was helping her with the Wii. She got it a week before we left last year so she really hasn't played much.

As for our trip home, it was crazy. We had a psycho lady stand in the security line telling me off for 10 minutes about how I was using my special needs child to get through security. I am not sure how she figured that since I was waiting in the same line as everyone else. Shocking the things she was saying to me. The man behind me finally yelled at her to stop because it was so abusive and negative for Josie to hear. Then half way through the flight the turbulence got really bad. We had walked up to the front to use the restroom and that's when it started. The flight attendant quickly buckled Josie into her seat. It was the kind of turbulence that drops so she didn't want to bump her head. When we arrived in LA, we were getting our bags and the the porter noticed one of them opened slightly. I went to zip it to see an empty medicine bottle. Someone stole her seizure meds right out of the bottle. They left the bottle and took the pills. Crazy I tell you. At least we made it safe and sound with my cute grandparents at the other end to pick us up.

When we pulled up to our house, Josie was just squealing with joy. She got to walk into the house with her canes. Remember when we left she couldn't even stand with canes...yeah Przemek, Sylwia and Liz for making this come true. She even said as she was walking in, "Przemek would be so proud of me." That night Grams and Gramps brought dinner over. She refused to go out after we got home. Gramps and Josie were playing bowling on the Wii. All of a sudden I looked over at the couch and Josie was in preparations to stand. Without even thinking twice about it she jumped off the couch and stood there playing the Wii. Her calves were touching the couch but that was it. It even surprised her that she did this. We all praised her and then reminded her that she can only jump off the couch if an adult knows and is near by. It is so impressive to she her do these things.

We miss you all in Michigan. What a quick 3 weeks. Melissa, give us updates on Rush. Reggie, your baseball hat picture is too cute. Theo, Josie will open up Camp Cloverly when she gets back.

Thanks for everyones constant support. It is much nicer to take this journey with lovely people. Jenny and Josie

Friday, April 23, 2010

Bon Voyage Detroit

We are sadly leaving Detroit but luckily only for 2 months. It is always bitter sweet because we are excited to go home as well. Josie did so incredibly well these 3weeks that it is hard to stop the momentum. Przemek sent Liz some strict marching (no pun intended) orders for Josie to do over the next 2 months. I was most impressed this time with her incredible attitude. I know I always say this but these kids are asked a lot of physically and emotionally that most kids aren't. I am excited for her to come home and walk up to receive her 1st communion. It might take awhile but she will feel such a sense of accomplishment. She should be so proud.

We got to go out for a special dinner with the Eger's to the Little Club. Megan, the service dog trainer from Cares, is still here so it was a treat to be together. Josie and I both adore the Eger's and the kids get along so well. Melissa did an awesome job with her new walking dog, Rush. What a beautiful boy. Congrats Mel, keep up the good work.

So to our Dream Team here in Michigan, Przemek, Sylwia and Maks, we bid you a fond farewell until next time. We promise once again to keep moving forward and will work very diligently on our tasks. We will make you proud. Ciao, Jenny and Josie

Thursday, April 22, 2010

Quick update

Quick update tonight because I may fall asleep typing this. Josie had a good day at therapy. She seems to lose concentration on Thursdays, but at least she is still happy to be there. Before we would have a good bout of screaming and crying on Thursdays. Now she just grins her way through it and hugs Przemek a lot more. We brought Maks in the room in spurts today and those were her best moments. Nothing to complain about really. The child works so hard she is entitled to a lack of concentration day sometimes. She will turn it back on tomorrow...her last day. Boy has this session flew by. She has also enjoyed it and done so well. Tonight when I was putting her to bed she asked when she got to come back to therapy. That is a big break through. I think she finally appreciates that this will work and she can do it. Exciting.

Her friend, Melissa, got her walking dog, Rush. He is a gorgeous black lab. It is certainly fun to have Megan here and to catch up with her. We got to meet Rush tonight. I will post pictures tomorrow when we go to dinner together.

Off to bed so I can get up earlier and pack. Night, Jenny and Josie

Wednesday, April 21, 2010

Miss 18 Seconds

Josie doing her independent standing

Josie is cruising along in therapy. She is actually really enjoying the challenges that Przemek is throwing her way. She thinks it is a complete competition to stand independently. Today she worked on it for 50 minutes. Do you know how long that it and how much focus is required?? wow. She got to 18 seconds today. Amazing that she continues to beat her record everyday. In a short time we will look back at this and laugh about 18 seconds. But for now we are celebrating. It is fun and happy in therapy and that is what we want. Don't get me wrong, she is working her tail off just finally realizes what she can achieve.

Before therapy today, she had her tutor, Mrs. Bergman. She is working really well for her too. Then we got to have lunch outside with Janie, Reggie and Janie's adorable mom, Mimi. What a treat. Beautiful Michigan day.

I can't believe we only have two days left. It goes so fast. Liz, it is almost your turn again...

Good night, Jenny and Josie

Monday, April 19, 2010

...but I am water

Fr. Maks and Josie racticing walking up the church isle

Her new, white, 1st communion shoes

Josie story of the day... She was practicing her independent standing with Przemek. She was doing well, but not quite holding herself up as long as we wanted and falling into Przemek a lot. I told her to pretend that Przemek was fire and she couldn't touch him. So the next time she tried she immediately fell on him. We all couldn't believe it. I said don't fall on him his is fire and you will get burned. Her comment back, "but I am water." Oh my goodness I was laughing so hard. Smarty pants...never dull I promise.

Besides being water, she did an excellent job walking today. She is currently in the perfect environment for her to do this, but not in the reality of where she will be really walking. Right now she is in a gym that is quiet with no outside distractions. We will add in more distractions the rest of this week because that is real life. Sometimes when she attempts to walk in the classroom it is like she has never touched a cane before, yet she can walk the whole classroom without even tipping.

Today she also got to practice using her 1st communion shoes. Przemek and I were admittedly nervous about the lack of support especially around the ankles. Even though she is out of leg braces she is still in polish orthopedic shoes that give her foot and ankle some of the correct support. Anyway she surprised us with her ability to walk in them so well. Her ankles are so much stronger then we thought. It was so encouraging to see that she did so well. Maks got to be the priest and we measured out the length she will have to walk from the pew up to where she will receive her 1st communion. When she reached Maks, he blessed her and they both laughed when he did. He is such a sweet boy. We will continue to practice with her shoes the rest of the time we are here. Keep her in your prayers. Jenny and Josie

Saturday, April 17, 2010

Dinner at Przemek, Sylwia and Maks's House

As if we weren't totally blessed just to have Przemek and Sylwia as our therapists but even more so as our friends. We were invited to the nicest Polish meal at their house tonight. Przemek, who I have found out, isn't only just a great therapist but also an excellent cook. What a lovely treat to be in there home with them. We all had such a nice time together. Josie and Maks enjoy being together as well. Thanks guys for a wonderful evening. Our house next time!

Earlier today we were suppose to go to the Eastern Market with Jeanie. We decided against it because it is mainly outdoors and it is really cold here right now. About a half an hour after that decision it started to SNOW!! Josie was overjoyed to see it even though it didn't last long or stick. As you can see from the picture up top, she is outside when it is snowing and you can also see the flowers that have already bloomed in the background because it was 84 degrees here 2 days ago. Funny fluctuations in temperatures here.

Instead of the Eastern Market, we hung out at the Livingston's drinking tea while Josie, Grant and Reggie played. What a relaxing day.

We also had a nice end of the week with therapy. I can't remember where I left off in posts so I will update that Josie stood for 12 seconds on Friday. This is the new record. So she went from 3 seconds to 12 in her first week. Really good start. She has the capability but like everything with her walking she now just to get it into her head that she can do it because she is still afraid (sorry for the complete run on). Przemek is preparing for new tricks next week...stay tuned. Jenny and Josie

Wednesday, April 14, 2010

Little Miss 10 Seconds

Can you see the adorable 10 year old boy in the bottom right? There is Josie's secret motivation to get her to walk and faster!!

I can't begin to tell you how incredibly pleased I am with Josie's concentration and work ethic this session. Przemek and I are so shocked by her determination. She has the fire burning inside her now to do this. Even Przemek was saying today he can't believe all of this in her. He is having her do new exercises and she is giving him her all. You have to remember this is for 3 straight hours with very few breaks. I can guarantee you that 98% of us couldn't withstand what is being asked of this 8 year old no matter what the age.

Now that Przemek has begun the independent balancing and standing on her own by having her bring herself off the wall to standing, I will post her record each day. To catch you up:

Monday it was 3 seconds. She did begin to show reactions to falling. Before she would have just fallen without even trying to stop herself.

Tuesday: 5 seconds. A little more control and more reaction time.

Today, Wednesday: 10 seconds!! All night I have referred to her as Miss 10 Seconds. She is so proud, so are Przemek and I. It is becoming a good game to her.

I know this doesn't seem like a big deal, but you can't begin to appreciate what it took just to get to the point to get her to try this. It is a miracle anyone walks when you actually break this process down to details like we are right now.

Thanks for checking in. It is encouraging to be so far from home and to know we have the great support. Not to mention being completely blessed to have great friends here too. We are so fortunate!! Jenny and Josie

PS. Liz and Bree- I am trying to upload for your review. Having trouble. Will try again tomorrow. I can't wait for you to see it.

Tuesday, April 13, 2010

Doing good in week 2

Taking Theo home after a half day of Doggie Day Care at Camp Cloverly

My deepest apologies for the long lag between posts. To be honest, I don't have internet here. I rectified the situation and will be able to post nightly.

Josie is doing incredibly well. Not only physically, but mentally. She has had a focus that she has never had before. You can't believe what concentration it takes for her to achieve anything. She isn't fighting Przemek at all and actually excited to take on new challenges. She is walking with so much control and strength. I am excited to return home in 2 weeks and for her to see Liz but especially for her to see Bree. Bree is the CSUN student that has been working with Josie and Liz for the past few months. It is going to shock her to really see the results that are achievable with this method.

Josie's newest exercise involves balance. This is the biggest obstacle in her way of complete independent walking. Unfortunately her balance issue stems from brain injury. We have to be able to retrain the brain...not an easy task, but with Przemek doable. She is learning to stand against the wall and slowly pull herself off the wall into standing. She is beginning to learn the reflexes to use when she is falling and to compensate for that. She is up to 6 seconds. Good start. She needs to be at 60 seconds to begin independent stepping. She actually really likes this challenge and thinks of it more as a game. When we attempted this exercise last time we were here she didn't even have enough balance to stay up (w/o falling to the side) She doesn't even start to fall to the side this time. If she does she can correct it. We will definitely be taking this exercise home to Liz. This will take a bit to learn.

Mrs. Bergman, her tutor, started with her today. She was impressed on the skills she acquired at home and saw a big improvement in her school ability especially her fine motor skills. We are looking into a few reading programs to implement this summer with her that might be the key to her reading success. One program Melissa, her friend, used that was successful. It is always a puzzle what will work with her.

Off to bed to get ready for another great day tomorrow. It is supposed to be warmer and sunny tomorrow. That will be nice. It is a treat watching spring spring around here. Good night, Jenny and Josie

Wednesday, April 7, 2010

She Nailed It!!

Josie nailed her first day. She truly impressed Przemek and did what she set out to do at home. I can't tell you the joy for both of us to know that our very hard work paid off. Hats off to Liz who put in her share of blood, sweat and tears to make this possible. She really improved her during her time at home. It is like we just got straight A's on our report card. Now that she has progressed, Przemek can work his magic to get her to the next level. You can see the determination return to her eyes as soon as she spotted Przemek.

After we returned home, she is supposed to walk in the house. She began to walk down the hallway to the kitchen. About half way down she let go of her Lilly cane claiming she didn't need it. Guess what? She didn't. She walked the rest of the way down the hall with just Rita cane. She weight shifted and actually did most of it without any of my help. I think I actually caught her twice. She is going to master this and it is so exciting. She told Przemek that her goal was to walk up to receive her first communion. Totally achievable.

Before therapy, we got to see our friends, the Eger's. Josie was so delighted to see them and can't wait to spend time with them. It is encouraging for her to be with Melissa because Melissa couldn't walk either and is also learning. Melissa took independent steps after her treatment at the same therapy center. Good for the girls to see each other's progress and push each other a bit.

So at the end of the day today I just want to scream...We did it I am now screaming WE DID IT LIZ!!!!! THANK YOU!! and I am also screaming YOU DID IT JOSIE!! I LOVE YOU, YOU LITTLE CHAMPION!

PS. The internet connection isn't strong enough here to load the pictures and video from today. I will try to get them on tomorrow.

Tuesday, April 6, 2010

We are back...but not in action

Read this with humor...that is how I am writing it

We are officially in Michigan, but not at therapy. It has been an interesting 48 hours. Josie has had a good bout with allergies since early March. So on Sunday at church I chalked up her coughing attack throughout the whole Mass to good old allergies. On Monday, she had a tremendously runny nose, coughing and sneezing...still allergies right?? Wrong. Being the not so smart mom it finally dawned on me on Delta Airlines at 36,000 feet in the air over Nebraska that maybe she has the same cold that I have had for 9 days...duh!! As we are over Nebraska she begins complaining of a headache. Not ever a good sign when she complains of head pain. I realize quickly that my next smart mom move was that I put the Tylenol in the suitcase not in my purse. I also know that if she is getting a fever I have to get it down immediately before it causes a grand mal seizure over Nebraska. I ask the flight attendant if she has kids Tylenol. No luck. The nice attendant makes an announcement over the loud speaker saying that there was a sick child on the plane and id anyone have any kids Tylenol...3 people to the rescue..that is precisely why they are all still in the running for mom of the year award and I am clearly not!! Turns out that the Tylenol helped and I don't think she had a fever just pressure from the cold. She perks up at this point and seems to be pretty good for the rest of the day. We landed, picked up our rental car (after 2 hours, yet another story), went to the market and to Jeanie's for dinner. She was so happy to be back. She remembered all 4 guys names at the store and they her. She was delighted to see Jeanie, Theo and Roger. Then at bed time she began her coughing all over again. Long night.

That brings us to today. Today = cancelling therapy (I can't even believe it. We didn't cancel once in the last 5 month time we were here. I have also worked so hard to get her healthy and ready for these 3 weeks), not getting to see her good friends the Egers as planned, not taking Theo for a walk, spending 2 1/2 hours at the Grosse Pointe Urgent Care for both of us to diagnose me with a sinus infection and Josie with tonsillitis, a trip to the health food store for natural cough and cold remedy, CVS for both of our prescriptions, Trader Joe's for makings for soup, back to CVS to pick up prescriptions, home for soup, tv and bed. Huge bummer to miss therapy. We will attempt it tomorrow. She is so excited to be here and to work hard.

All I can do at this point is laugh. It is almost like watching a comedy show. Hopefully the antibiotics will kick in fast without increasing her seizures and we can both get to work.

Her goal these short 3 weeks to get fast enough to walk up part of the church isle on her canes to receive her first Holy Communion on Saturday, May 1st. This will be a week after we return home. It is a good and achievable goal. Keep her in your prayers. She will need as much strength as she can gather while she is here. Sweet dreams, Jenny and Josie

PS. I haven't even ordered the invitations for First Communion yet. We are planning on a party at our house after with the Los Gringos taco truck. Let my know if you want to join us. Just email me. I will be working on official invites this week. Cheers

Sunday, April 4, 2010

Happy Easter

What a truly glorious day. We were fortunate enough to spend it with family. We are also finally packed up for our adventure to Michigan tomorrow. We are excited to go back again. Josie is looking forward to seeing everyone and I think is excited to work with Przemek again. She went Easter egg/present hunting on her canes today and was fairly steady. I am excited for Przemek and Sylwia to see her progress.

A story from church today. We got there early enough to sit in the second row. Josie loves to watch everything that is happening on the alter and there were even 6 trumpets there today. We were saying hello to people we knew around us. Most people that know us will come say hi to Josie. Just before Mass started, this woman that looked to be in her 70s approached us. She bent down to Josie and with tears in her eyes said, "Honey, you won't understand this now, but on Thursday at the service you brought Jesus to me. All these years of going to church and I didn't really know him until then. Thank you." It was so kind and sweet. She kissed Josie on the cheek and returned to her seat where see sat quietly wiping her tears. I just wanted to go hug her. It amazes me that our God is so great that he chose to use Josie, a severely handicapped 8 year old, originally from a remote village in Guatemala to bring himself to this woman. Wow, Happy Easter and thank you. Jenny and Josie

Friday, April 2, 2010

Happy 86th Birthday Gramps!!

Happy Birthday Gramps!!

Josie and Grandpa


Carson John - 12 days old

Cousins in the car

Great Grams and Gramps with great grandchildren #s 12 and 13

Family at the Oakmont Country Club puppet show and party

All the cousins

Jeff and Trent

We are the luckiest to be celebrating Gramp's 86th birthday and to be really celebrating his good health, spirit and strength. What an amazing man who is so kind and loving to all. We had a great party with our family and Grams and Gramps on Wednesday.

We also want to wish Stephanie and Mike a happy anniversary. What joy you have had these past 4 years. We are thankful for the darling boys that you have brought us.

Josie has been busy this week doing a lot of hard work at therapy in preparation for our return to Michigan next week. I can't even recall all that we have had to do, I just know it has been a lot.

We got to attend our most favorite church celebration of the year...the washing of the feet. Josie just loves this time in church. She finally understood last night the meaning of the breaking of the bread and wine. It made sense to her that Jesus gave his body and blood to us. It was a great moment to watch it click. Of course she was the first in line to wash someones feet. Then she turn and did mine. There were tears in many eyes watching her do this. She sure does have a great spirit from God.

I am happy to report that Josie has been grand mal seizure free for 2 years today!!! We are hopefully going to keep that going.

Hope everyone has a wonderful spring break this week. Love, Jenny and Josie