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
video

Thursday, November 25, 2010

T H A N K S G I V I N G

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

Wednesday, November 24, 2010

Week in the Desert

We are out at the desert for a much needed and relaxing Thanksgiving week. Before we got here we had a few things to do. On Thursday, we went to Dr. Mitchell, Josie's neurologist at Childrens Hospital Los Angeles, for a check up. We were incredibly excited to tell her about the Omega helping subside those darn seizures. She always refers to Josie as "unique" and was relieved to hear that we found something. Unfortunately there isn't much else we can do pharmaceutical wise that will be of much use. We will keep on the Omegas and also keep up on what we can do holistically to stay ahead of it. On Friday, we saw Dr. Collin's, our holistic doctor. She was delighted with the Omega and tested her for a few other things. She has put her on other brain supports and liver detox for all the epileptic drugs she still has to take. It is refreshing to see her because she offers such positive support for her system.

After Dr. Collins, we were off to Orange County for meetings. Josie was supposed to go with my parents to the desert, but my poor mom's back went out. That has never happened to her before. I took Josie with me, because my mom can't lift her. We got to spend the night with the Amigleo's. She had a slumber party with Reagan. She was so proud to be on her own. It is always fun to be with the 4 Amigleo kids. It has been 5 months since we have been with them.


On Saturday we headed out to the desert. My parents were already there. We have been so relaxed which is switch for us. Josie got to swim, play and just be a kid. She had 2 full days off from walking which scared me. I was so concerned that she would lose something during this time. I put her on her canes and off she went. I didn't have to touch her and only had to catch her once or twice. She has been like that ever since. I tried to video tape her walking today to send to Przemek and Sylwia, but when I looked at it I cut off her head and feet. Sorry guys, I will try it again tomorrow.

Josie getting her nails done...only way I can get her to sit while I get a pedicure

Walking at the desert house

Sending a big Happy Birthday to our sweet Cole Drummond!! Sorry we weren't there to celebrate with you!!!

Grams and Gramps arrived today. The rest of the gang comes tonight. It will be a glorious day tomorrow to all be together. Thanks for checking in on us. Jenny and Josie

Dinner at Babe's with Grams and Gramps

Tuesday, November 16, 2010

Hello LA

We are officially home in California. We landed Sunday afternoon and as the wheels hit the ground Josie yelled out, "We made it!". The people around us laughed. They probably thought that she was scared of flying and happy to be on the ground. If they only knew the half of it. Right outside of the gate was the I Love LA store. She made me take a picture of it so here it is...



We were so excited to see some of the family for dinner that night. Luke was elated that Josie finally made it home. They are such cute little buddies. It has taken us a bit to get acclimated. The body and mind need a little break so we are moving rather slow the past few days. Except for the fact that on Monday morning Josie had an orthodontist appt. and in the afternoon she saw her orthopedic surgeon at Children's Hospital LA. He thought she was doing quite well. Before we left he was a bit worried about her heel cords and how tight they were. Now he isn't worried about them at all. This is a good reminder to me that there are subtle differences that I forget we have worked out. When I focus so hard on just the walking, I forget that we have taken care of other problems as well. It was drawn to my attention yesterday that since she started intensive physical therapy she hasn't required one orthopedic surgery to correct anything. That is beyond amazing since the fact that up until then she had at least one or two a year. She is so good that there isn't any even on the horizon. What a huge relief.

I have to admit that the walking at home was less than impressive for Sunday and Monday. I was making her do it but she was so uneasy. She was falling every few steps which is so unlike her. She was walking with bent knees and canes going all over. I started to panic slightly and was about to get Przemek on Skype to watch it. After breakfast today she was getting ready to walk to the family room. At that moment it dawned on me that she has been wearing her new black shoes for the past 2 days. Przemek has this theory that her pink sandals are her lucky shoes. I put her back in the chair, ran to the room and changed her into her "lucky" pink sandals. Sure enough she went flying across the room just like she has been for the past few weeks. Przemek- You are right again, just needed her lucky shoes or to threaten to call you if she didn't pick it up!! The rest of the day was perfect walking again. My faith has been restored.

Tonight she was walking around the kitchen and decided to stop at the freezer. I was just saying to my mom yesterday that she doesn't just stand at things and play. I was wishing she would do more of that. Well tonight she did. She opened and closed the freezer for at least 25 minutes. She would balance herself on her left cane. If she started to loose her balance or just need to reposition she would grab her right cane and do so on her own. I think I only had to catch her once and it was at the end when her legs got tired. She had so much fun and it was awesome to see her playing like a normal kid. We may have defrosted everything in there but well worth it.



Cute Josie and Luke decided to make a fort today which they spent a great deal of time in together. None of us were allowed in, but Grandpa was when he got home. Another great day of make believe.



We miss you all in Michigan. It is weird not to be there. We are slowly reentering here. Josie doesn't return to school until the Monday after Thanksgiving so it gives us time to get the appointments done and give her a little break. Thanks for checking in on us. We appreciate the support. We couldn't have done the last 5 months without all the amazing support we have received. Thank you for that. We are truly blessed. Jenny and Josie

Saturday, November 13, 2010

Good Bye Grosse Pointe


Josie, Reggie and Grant listening to music by the fire

We got to have one more special dinner with the Livingstons tonight. Reggie and Josie had a ball playing together. They were having their own dance party sitting on the ground since neither of them can stand without assistance. Too cute. Grant played the guitar which is always a great treat. Always nice to sit and visit with Janie and Pete. Thanks you guys for taking us in like family while we are here. We will miss you tons.

Thank you for having us. We will miss everyone and everything. It has been such a rewarding journey to be apart of this wonderful community. We felt welcomed and loved. We look forward to our return in spring. Until then, you will remain in our hearts. Jenny and Josie

PS. Kasey Malley- I am so sorry to missed you today. Big hugs from Josie and I. Will call you soon for the presents we talked about. Look forward to seeing you and your beautiful family in spring. Love to all of them.

Friday, November 12, 2010

"I Did It"


The 3 Amigos

Josie, Przemek, Sylwia and Simone from Italy

As we pulled out of Pediatric Fitness Center's driveway for the last time today, Josie just squealed from the back seat..."I did it!" It was such a proud sound from her and the first time I heard the thrill of complete accomplishment from her. She really did do it. I can't imagine asking anyone to endure what she just did for 5 months and to handle it with so much grace, joy and dignity. Very impressive.


Mrs. Boni, Josie, Mrs. W and Mrs. Burr

It was an emotional day here. I think I already announced at how bad I am at goodbyes. This has never been my strong suit. I did hold it together in front of the wonderful people at Kerby Elementary. We are going to miss the happy and positive spirit that just oozes out of their school walls. Never once did Mrs. W focus on what Josie couldn't do, but how to help her and what she can do. We need this attitude for everything. It isn't fair to compare her to other kids. They just haven't been through what she has and learn differently. I need to remember this the most. Appreciate what graces and abilities God has given her and relish in those accomplishments. I really credit the great attitude to the amazing principal, Maureen Burr. She just exudes happiness and you can tell the moment you meet her how much she adores the kids. She even remembered Josie's spelling words for her test today. Heather Boni who was Josie's speech therapist, although Josie won't let me call her that because she is afraid people will tease her for having to work on speech. So thank you Mrs. Boni, Josie's other teacher, for helping her. You all have been so accommodating and welcoming. We will miss you and look forward to our return in May.

Josie working out with the adorable pink bear given to her today by Mrs. W



and then...we had to say goodbye to our favorite Przemek and Sylwia. There was a lot that we all went through this time around together which made it harder to leave them. I know I write it a lot, but I can't begin to tell you how truly grateful I am to know people like them. They have helped us more than you can imagine. When you spend that much time with people in an emotional setting, you really do develop a great bond. We will miss you guys so much. I know we will talk regularly, but it won't be the same as seeing you everyday. Thank you for helping and loving Josie so much. You will always be our heroes. Tell Max we will miss him too.

Just after we started our drive home, Josie laid her head on the pillow in the back seat and fell fast asleep. I think the 5 months caught her in a single flash. She could finally let go. Her legs are over fatigued, her head must be spinning for so much concentration and body must be over all exhausted. She will get the weekend to take a break, except for walking around the house with 2 canes. I will have to start up the regime again on Monday, because we don't see Liz for 2 weeks. She can't afford to lose anything while we return home. Her mind will get a well deserved break. Therapy is probably just as hard mentally, if not more, than physical.

We got to go to the faith builders series tonight at church. Our dear Janie Livingston was the guest speaker. She was speaking on Haiti and Healing the Children. She was so filled with God's love and joy and did an amazing job with her story. She is truly a gift and is so amazing.

Well the car was picked up this morning, so we are officially on our way. We have all day tomorrow here and leave on Sunday. One more round of hard goodbyes. We are so thankful to be apart of this absolutely remarkable community. We truly did grow where we were planted. Thank you Grosse Pointe for having us. Jenny and Josie

Thursday, November 11, 2010

Pasta Party


Pasta Party at our (Aunt Harriet's) house

Reggie Sandwich

Reggie standing with Melissa's canes. He really wanted to try them and actually stood. He amazes us everyday.

Cutiepie Melissa

Look how amazing Melissa is with her canes. She is so incredibly strong


Tonight we got to have May and Melissa Eger and Reggie Livingston over for dinner. Josie thought this was the best that they could all be there by themselves. 3 out of 4 with special needs...no problem and quit fun. They all were giggling so hard. Reggie, who is only 4, keeps right up with those silly girls. In fact,he is usually the one cracking the jokes that they all laugh at. We had to say good bye to May and Melissa tonight. They are going up north tomorrow so we won't see them again until May. Josie was sad after they left. They have been the 3 amigos and really do love together. For Josie, they make the long 5 months doable and exciting.

Therapy was great today. I stayed the whole time to help with the pictures that needed to be taken for the home workout program. We definitely do have our work cut out for us. Liz and I are up for the challenge. Since Przemek put a left knee immobilizer on yesterday she has had a bit of a turnaround with her one cane walking. It just gives her a little more stability to really do it. It is going to take a while longer for that left leg to be proficient at it. We will continue to strengthen it at home. She also needs to get more comfortable with it and then the leg will straighten up more.

Before we left for therapy today, I got a call from the truck that is picking up my car to take it back to CA. I thought they were going to come late Friday or on Saturday so I wasn't packed. They called to say they would pick it up at 5:30 tonight. We don't even get home from therapy until 4:30 on a good day. My amazing Janie and Grant came over and we literally shoved everything into it including the bike and the trailer. We went so fast and actually got it done by 5:30. They man called back at 5:45 and said he couldn't come after all tonight and we would come by 10 tomorrow morning. At least it's packed!!! THANK YOU JANIE AND GRANT!!!!

Lory and Madison Eger left today with Laura Clutterbuck and a few other women to go help at the orphanage in Haiti. These amazing women went down so the regular women employees could take some very much need and well deserved time off. They will be staying there and help with all aspects of the orphanage. Laura is adopting a little girl from there and she might even be placed with her this week. How amazing to finally meet her little girl. We are all anxiously waiting the news and pictures. Ladies, you show us the meaning of doing God's work. Thanks for being such wonderful examples.

Tomorrow will be the last day of school here and therapy. Josie is already telling me I can't cry when I say goodbye...yeah right. I can't even keep a dry eye through Disney movies. It is impossible to adequately thank people for changing your daughters life. As for Przemek and Sylwia there are not words to express your gratitude for the effort and mostly love that they put forth to better your child's life. We have truly become family with them and it will be very hard to leave them again. It is comforting to know that we will be back in spring. It is also good to know so I don't slack for one minute at home and keep her moving forward. Off to throw just a few more things into the car. Thanks for checking in. Jenny and Josie

Wednesday, November 10, 2010

Happy Birthday Mayra "Maisy Mae" Eger




Happy 8th birthday to our darling Maisy. Thanks for letting us celebrate another birthday with you.

Filming continued at therapy today. She did really well on the balance board with one cane. Przemek put on a left knee immobilizer during the end part one one cane walking because she is having a strength issue with her left. She had so much more control and balance. We will keep using this until she is stronger and more secure in this process.

Exciting news with standing...she stood for 2 minutes and 5 seconds!! We took the clock off the wall and let her watch the second hand to see how long she had gone for. This is much more effective then the counting right now. She loved the challenge of trying to beat the clock. I have to admit there was a little bribing going on but she was so steady and thrilled that she could see the actual seconds click by.

Only 2 more therapy days. There is a lot to accomplish still. You would think you could get it all done in 5 months, but it is impossible. There is always more. We will leave on Sunday happy and content with what we have accomplished and relish in that moment instead of thinking about what we didn't. Ciao, Jenny and Josie