Woke up this morning and the world did look better...my mom is always right. Josie had her first spelling test here in Michigan. She was so nervous about getting something wrong, she almost couldn't concentrate on the words all week. She took her test and got a 100%. She was so proud and said she now thought it was silly to be that nervous. Glad we jumped that hurdle, again.
Przemek said she had an excellent day at therapy. I missed most of it because I was having an MRI to figure out these migraines. Josie walked for 40 minutes all around the gym, with people walking by, watching her, talking to her and she only fell once. Przemek also said that she was faster than usual. He gave her a break from one cane walking today. I think she was doing so great with 2 he wanted to work on that.
We are the first patient tomorrow so we will have to leave really early...not easy for us. Nice Przemek is treating Josie and then driving all the way to Ohio to go to a presurgery appointment with one of his other patients and then drive back that night. These people are so incredibly dedicated to their patients. They go above and beyond their duties and that is exactly why their patients get to live the best lives they can. Thanks you guys and I think I can speak for all of the parents whose kids you treat. Night, Jenny and Josie
Thursday, October 28, 2010
Wednesday, October 27, 2010
The Good, The Bad and well just life
One Cane Walking...Way to go Jos!!
The good first...Josie is just starting to learn to walk with one cane. It is the next very big step in her walking journey. It, like 2 cane walking) will be a process to learn and master. Przemek will get it going here, but Liz will be the one to keep it going and perfect it. We are hoping Josie can get a bit more comfortable with it before we return home. Right now she is scared of it because it feels so different and unstable. The same way her canes felt last year. She struggled with accepting how to relax and listen to Przemek's instruction. She got over that today and did quite well. We are headed in the right direction. Her 2 cane walking is so much fun to watch. She is just working on speed now.
**Warning, I'm on a bit of a negative jag, so you may not want to read the rest***
The bad...I have been working really hard to get Blue Cross to accept our claim to get Josie the Standing Dani.(Medical equipment and we have never asked for even one piece of equipment from them ever). Most of you have seen the pictures of it this summer. It is an electric stander(she is actually standing with perfect posture) that she can use to get around school (in the classroom she will use canes), the grocery store, basically longer distances that she can't walk with her canes for. It keeps her upright which is so important for leg strength, balance, peer interaction, prevention of scoliosis, oh I could go on and on. It would replace what anyone else would use a wheel chair for, which I refuse to do especially after finding the Standing Dani. Anyway, Joy, her PT at school and therapist trained back here by these guys in Michigan, and Dr. Kay have helped submit the most thorough request. It went in for urgent review because we need it when we leave here in 2 1/2 weeks. The doctor at Blue Cross got it this afternoon after much chasing down by me and DENIED the claim within 5 minutes...not even possible for her to fully read and review all the material sent. I am so mad. They will give her a $35,000 power wheel chair and a full time nurse (she doesn't even need one), will pay for all the surgeries and complications that come with being in a wheel chair, but won't pay for something that they haven't seen a million studies on why it is better than a wheel chair. There are not a million bloddy studies because there are very few proactive parents like me that are more willing to work really hard so their child doesn't end up confined to a bloody wheel chair and the life that accompanies that unnecessarily. This child didn't survive one of the biggest, if not the biggest, medical procedure in the world and work this hard for so many years in therapy to have an insurance company deny her a better quality of life. argh. Dr. Kay, who mind you is one of the most well respected orthopedic surgeons in the country, asked for her to have this. Don't you think he knows her case better then some yoyo doctor reviewing something on paper?...Back into battle. It will get done, just with a lot more headache. Maybe it is good, I guess, for my patience to be tested. PS. Blue Cross - I don't have much of it right now, so beware.
Just have to vent once in a while. This is written about our daily life. 98% of the time doing great. As my mom would say, get some sleep and the world will look better in the morning. That's what I am going to do. Night, Jenny and Josie
Sunday, October 24, 2010
31
Eventually I am going to stop with this silly number thing, but I couldn't possibly when you hear what 31 means now....
Let me give you a bit of recent history. As most of you know Josie has her fair share of bouts with seizures. For the past year there has been a definite increase in her focal seizures (no grand mals to report since April 2, 2007). However, she has been through 5 meds so far and seems to always get her seizures back. The most effective med has been Carbitrol and it was only effective for a year. She started having her seizures on this so Dr. Mitchell has been trying to add cocktails so that we can beat these things. FYI. really hard to learn to walk when all of a sudden your body freezes and/or knees buckle, etc. I won't bore you with too many details, but last May she was admitted to CHLA to do a 4 1/2 day study to video EEG to capture these episodes because we are all at a loss of what to do. Outcome was that she should probably try a new med and other options are the brain surgery that removes the effective spot. She is definitely NOT a candidate for this because you have to do so many invasive brain surgery mappings and since her blood vessels are going every which way from being rerouted during separation this could be a fatal option and one we aren't even exploring. So over the summer and leading up to now she is on Carbitrol (still) and Lamictil except that she is on a very low dose of Lamictil because every time we try to increase it she seizes harder, longer and more frequently (great option right?!?!..Argh.) Over summer and fall she has about 25 - 40seizures a day. Way to many. About 6 weeks ago I was thinking I should really start my search around the country for the top epilepsy specialist and start a new adventure with this. At the same time I finally got around to putting her on Omega (fish Oil). Embarrassing to work for Amerisciences, specializing in scientific based supplements with the purest form of Omega on the market, and I hadn't even put my brain injured daughter on it (tad to much going on all at once). Within the first couple of days taking Omega her speech cleared up and words came out faster, our friends here even commented it was so profound, she could concentrate so much better at school and actually started reading (what a struggle it had been before that), she is singing most of the lyrics to songs not just the last word in every phrase and what I am most excited about...drum roll please...SHE HAS BEEN SEIZURE FREE FOR 31 DAYS... can you hear me shouting it from the mountain tops... SHE IS 31 DAYS SEIZURE FREE!!! God Bless OMEGA!
Simple, pure fish oil has changed her life. The scariest part is not one western medical doctor has even suggested using it, not just for seizures, but even for helping heal the brain. It will be my mission to let people know the profound effects that Omega can have. Not Omega from Trader Joes or Costco, but real, manufactured perfectly (very hard to find) fish oil. Amerisciences fish oil. Josie even feels better you can tell. She was sitting on the edge of the bed last week and I ran into the other room for something and yelled back at her to be careful and don't fall. She yelled back, "Don't worry I won't, I don't have seizures anymore."
Part of me is really scared to brag about this yet. I keep waiting for the other shoe to drop. I said if we made it 30 days I would start talking about it. I told our holistic doctor about it on Thursday and she concurred that I was giving her the proper dose and we will see her as soon as we get back. I have started to ween her off the Lamictil (never did anything anyway) and keep her on the Carbitrol for now. I pray that this keeps working. It is such a miracle in our lives, another one. I know we just had a few days with no posts so update, she is great. I think this should do it for tonight. Off to bed so we can get through day 32...wow does that sound great. Keep those prayers going. Jenny and seizure free, Josie
Let me give you a bit of recent history. As most of you know Josie has her fair share of bouts with seizures. For the past year there has been a definite increase in her focal seizures (no grand mals to report since April 2, 2007). However, she has been through 5 meds so far and seems to always get her seizures back. The most effective med has been Carbitrol and it was only effective for a year. She started having her seizures on this so Dr. Mitchell has been trying to add cocktails so that we can beat these things. FYI. really hard to learn to walk when all of a sudden your body freezes and/or knees buckle, etc. I won't bore you with too many details, but last May she was admitted to CHLA to do a 4 1/2 day study to video EEG to capture these episodes because we are all at a loss of what to do. Outcome was that she should probably try a new med and other options are the brain surgery that removes the effective spot. She is definitely NOT a candidate for this because you have to do so many invasive brain surgery mappings and since her blood vessels are going every which way from being rerouted during separation this could be a fatal option and one we aren't even exploring. So over the summer and leading up to now she is on Carbitrol (still) and Lamictil except that she is on a very low dose of Lamictil because every time we try to increase it she seizes harder, longer and more frequently (great option right?!?!..Argh.) Over summer and fall she has about 25 - 40seizures a day. Way to many. About 6 weeks ago I was thinking I should really start my search around the country for the top epilepsy specialist and start a new adventure with this. At the same time I finally got around to putting her on Omega (fish Oil). Embarrassing to work for Amerisciences, specializing in scientific based supplements with the purest form of Omega on the market, and I hadn't even put my brain injured daughter on it (tad to much going on all at once). Within the first couple of days taking Omega her speech cleared up and words came out faster, our friends here even commented it was so profound, she could concentrate so much better at school and actually started reading (what a struggle it had been before that), she is singing most of the lyrics to songs not just the last word in every phrase and what I am most excited about...drum roll please...SHE HAS BEEN SEIZURE FREE FOR 31 DAYS... can you hear me shouting it from the mountain tops... SHE IS 31 DAYS SEIZURE FREE!!! God Bless OMEGA!
Simple, pure fish oil has changed her life. The scariest part is not one western medical doctor has even suggested using it, not just for seizures, but even for helping heal the brain. It will be my mission to let people know the profound effects that Omega can have. Not Omega from Trader Joes or Costco, but real, manufactured perfectly (very hard to find) fish oil. Amerisciences fish oil. Josie even feels better you can tell. She was sitting on the edge of the bed last week and I ran into the other room for something and yelled back at her to be careful and don't fall. She yelled back, "Don't worry I won't, I don't have seizures anymore."
Part of me is really scared to brag about this yet. I keep waiting for the other shoe to drop. I said if we made it 30 days I would start talking about it. I told our holistic doctor about it on Thursday and she concurred that I was giving her the proper dose and we will see her as soon as we get back. I have started to ween her off the Lamictil (never did anything anyway) and keep her on the Carbitrol for now. I pray that this keeps working. It is such a miracle in our lives, another one. I know we just had a few days with no posts so update, she is great. I think this should do it for tonight. Off to bed so we can get through day 32...wow does that sound great. Keep those prayers going. Jenny and seizure free, Josie
Wednesday, October 20, 2010
Moving Right Along
Josie had a busy day with school and therapy. Poor thing didn't get to go to school yesterday because I dropped the blender on my toes and couldn't walk very well carrying her. She was sad, which is good, because she is loving her school here, even though she isn't there long.
Przemek told me she did really well walking today especially picking up the tempo. I missed it because I was at a doctors appointment. He also remarked on how well she executed her turns to both the right and the left. I did get back in time for standing which was not award winning like yesterday with 73. We will shoot for an 80 tomorrow.
That is it for tonight. Sorry for the rather boring post. Will try to find more excitement tomorrow! Best, Jenny and Josie
Przemek told me she did really well walking today especially picking up the tempo. I missed it because I was at a doctors appointment. He also remarked on how well she executed her turns to both the right and the left. I did get back in time for standing which was not award winning like yesterday with 73. We will shoot for an 80 tomorrow.
That is it for tonight. Sorry for the rather boring post. Will try to find more excitement tomorrow! Best, Jenny and Josie
Tuesday, October 19, 2010
60- 103- 40- 73- 18- 14- 0
OK, for those of you who follow this, I am going to throw you off with these numbers. They don't all represent the seconds Josie has been standing at therapy..hehe!! I haven't updated in so long, so try to follow this twisted post.
60
Yes, 60 does represent the seconds she stood a week ago Thursday. It was our last day of therapy before our final week off before heading into our final 4 weeks here. Josie was having a good session and all Przemek and I wanted before we left was her to hit the 60 second/1 minute mark. It was 3:29 PM and we had to leave on time at 3:30 to catch our flight. We didn't have even one extra minute to stay that day. We begged Josie to just bear down one more time and get there...she did. We, including Josie, were SO excited. It was the milestone that we set out to achieve the day we came this summer. She did it and it was glorious. It may have been the 11th hour but it happened. Off we ran to the airport satisfied that she conquered one of her biggest challenges.
60 also happened to be the temperature it was when we left Detroit. Nice for this time of year.
103
103 was the temperature it was when we arrived to Palm Desert. Big temperature swing, but glad to be in the nice hot California sun. We spent the week with the family and Grams and Gramps at my parents desert house. It was blissful mayhem with Josie, the two 3 year old boy cousins (Matt and Luke) and the 2 baby boys (Trent and Carson). It was never quiet and it was never dull, just like we like it. We had a ball being together and just swimming, playing and laughing a lot. Blessed are we to have such a great family that loves to be together.
Cousins playing. They loved all being in this silly box.
Josie insisted on taking the alligator raft out to the pool herself. It was 3 times bigger than her and she pulled it while walking with her canes. Notice in the lower picture the nice right foot and cane placement. Przemek - you should be very pleased and that she is walking across carpet that was very soft.
Feeding Carson banana baby food for the first time. These pictures are reversed. In the upper one he just tried it and loved it and below is his first taste.
Relaxing
Night swimming
40
My parents celebrated their 40th wedding anniversary last Sunday, 10-10-10. Magical date and magical marriage. They are truly examples of best friends. We were lucky to spend this time with them. Happy Anniversary Mom and Dad. We all love you so much.
73
73 is the seconds she stood for today!! We have been gone 10 days and out of practice with standing. We did some in the desert, but focused more on the walking. Today she was solid as a rock every time she practiced her standing. She was hitting constant numbers in the 40s. She did one 50 and was so proud she laughed and knocked herself down. She was standing without even wobbles which means that the brain has certainly retrained itself and has over come the injury that has affected her balance since the day of separation. Everyone said it was possible, but Przemek was the only one 100% convinced that he could do it...Congrats Przemek you worked your magic once again and won another HUGE battle in Josie's recovery. Liz and Sylwia, we do owe you A LOT of credit in this department as well.
18
Only 18 more therapy days left for this 5 month run in Michigan. It is scary and exciting as we round the corner to another big finish line. I watch in amazement daily how a sweet, kind hearted soul at 9 years old can be tougher than most humans on this planet. Unless you have spent even a day here, you can't even begin to know what she, and all the kids who come here, experience. Ask Lory Eger, she will tell you. Melissa is here with Sylwia again right now. These little girls have so much grit and willpower. Melissa stood for 12 minutes today. Her best time was yesterday with 5 1/2. Miracles happen but only because these miracle children and therapists work their tails off. We are 18 days away from returning to what was once our "normal" life, what ever that is. Scary to leave because we launch back into "normal" life and we have to remember to take the importance of what we have learned here and apply it into a life that doesn't slow down to do that well. Keep Josie is your prayers during this final push. We thank you for checking in on us. It is nice to have the support.
14
14 is the age of our dear friend, Janie Livingston's, nephew, DJ. He complained last week of a pulled shoulder, but was quite the athlete and didn't think much of it. It got bad enough that he went to the doctor and was unexpectadly diagnosed with Hodgkin's Lymphoma. Janie and Reggie went to be with the family last weekend and they got better news then they originally received and that it was treatable. This sweet 14 year old is starting the fight of his life. We know first hand the power of prayer and even though we have never met him, please send up a quick prayer for DJ and his family.
0
I have zero things left to add tonight (unusual for me I know!). Will be back again tomorrow night. Love and peace, Jenny and my prize fighter, Josie
60
Yes, 60 does represent the seconds she stood a week ago Thursday. It was our last day of therapy before our final week off before heading into our final 4 weeks here. Josie was having a good session and all Przemek and I wanted before we left was her to hit the 60 second/1 minute mark. It was 3:29 PM and we had to leave on time at 3:30 to catch our flight. We didn't have even one extra minute to stay that day. We begged Josie to just bear down one more time and get there...she did. We, including Josie, were SO excited. It was the milestone that we set out to achieve the day we came this summer. She did it and it was glorious. It may have been the 11th hour but it happened. Off we ran to the airport satisfied that she conquered one of her biggest challenges.
60 also happened to be the temperature it was when we left Detroit. Nice for this time of year.
103
103 was the temperature it was when we arrived to Palm Desert. Big temperature swing, but glad to be in the nice hot California sun. We spent the week with the family and Grams and Gramps at my parents desert house. It was blissful mayhem with Josie, the two 3 year old boy cousins (Matt and Luke) and the 2 baby boys (Trent and Carson). It was never quiet and it was never dull, just like we like it. We had a ball being together and just swimming, playing and laughing a lot. Blessed are we to have such a great family that loves to be together.
Cousins playing. They loved all being in this silly box.
Josie insisted on taking the alligator raft out to the pool herself. It was 3 times bigger than her and she pulled it while walking with her canes. Notice in the lower picture the nice right foot and cane placement. Przemek - you should be very pleased and that she is walking across carpet that was very soft.
Feeding Carson banana baby food for the first time. These pictures are reversed. In the upper one he just tried it and loved it and below is his first taste.
Relaxing
Night swimming
40
My parents celebrated their 40th wedding anniversary last Sunday, 10-10-10. Magical date and magical marriage. They are truly examples of best friends. We were lucky to spend this time with them. Happy Anniversary Mom and Dad. We all love you so much.
73
73 is the seconds she stood for today!! We have been gone 10 days and out of practice with standing. We did some in the desert, but focused more on the walking. Today she was solid as a rock every time she practiced her standing. She was hitting constant numbers in the 40s. She did one 50 and was so proud she laughed and knocked herself down. She was standing without even wobbles which means that the brain has certainly retrained itself and has over come the injury that has affected her balance since the day of separation. Everyone said it was possible, but Przemek was the only one 100% convinced that he could do it...Congrats Przemek you worked your magic once again and won another HUGE battle in Josie's recovery. Liz and Sylwia, we do owe you A LOT of credit in this department as well.
18
Only 18 more therapy days left for this 5 month run in Michigan. It is scary and exciting as we round the corner to another big finish line. I watch in amazement daily how a sweet, kind hearted soul at 9 years old can be tougher than most humans on this planet. Unless you have spent even a day here, you can't even begin to know what she, and all the kids who come here, experience. Ask Lory Eger, she will tell you. Melissa is here with Sylwia again right now. These little girls have so much grit and willpower. Melissa stood for 12 minutes today. Her best time was yesterday with 5 1/2. Miracles happen but only because these miracle children and therapists work their tails off. We are 18 days away from returning to what was once our "normal" life, what ever that is. Scary to leave because we launch back into "normal" life and we have to remember to take the importance of what we have learned here and apply it into a life that doesn't slow down to do that well. Keep Josie is your prayers during this final push. We thank you for checking in on us. It is nice to have the support.
14
14 is the age of our dear friend, Janie Livingston's, nephew, DJ. He complained last week of a pulled shoulder, but was quite the athlete and didn't think much of it. It got bad enough that he went to the doctor and was unexpectadly diagnosed with Hodgkin's Lymphoma. Janie and Reggie went to be with the family last weekend and they got better news then they originally received and that it was treatable. This sweet 14 year old is starting the fight of his life. We know first hand the power of prayer and even though we have never met him, please send up a quick prayer for DJ and his family.
0
I have zero things left to add tonight (unusual for me I know!). Will be back again tomorrow night. Love and peace, Jenny and my prize fighter, Josie
Tuesday, October 5, 2010
Starting One Cane
Yeah...we are finally ready to start working on using one cane. Josie worked really hard at it even though it was scary to her. She didn't even start this until after she walked for about an hour. Tomorrow, Przemek will start this before she does her long walking. She did a really good job at therapy today.
Tonight, she was doing her reading and just read right through her book being able to recognize her words so easily. This is a great change for her. It is fun to watch all these amazing transformations. We just have the rest of this week and then we are off for a week. When we return, we will go into our last session of therapy for these 5 months. I can't believe how fast it has gone and it is amazing to see how much she has been able to accomplish. Off to get packed. Jenny and Josie
Tonight, she was doing her reading and just read right through her book being able to recognize her words so easily. This is a great change for her. It is fun to watch all these amazing transformations. We just have the rest of this week and then we are off for a week. When we return, we will go into our last session of therapy for these 5 months. I can't believe how fast it has gone and it is amazing to see how much she has been able to accomplish. Off to get packed. Jenny and Josie
Sunday, October 3, 2010
October Weekend
Madison, Lory, Grady, Josie and I in the Orchard
Picking Apples
Pumpkin Patch
Getting ready to leave with her hat and scarf. Josie was so excited she walked to the front door and waited for the Egers to come over(she only waited there for 5 minutes)
Josie, Reggie and Oliver on Saturday night
Walking outside on Friday
We finished therapy last week with a strong Friday. Josie walked all over the gym and even asked to walk outside. She is just having so much fun with her walking. She also stood really well. She had one 50 a few 40s and 30s. She is just getting so consistent with this. Now it is onto the independent steps. It will probably take us the same amount of time to learn this and to become proficient in it as it did the canes. One foot in front of the other...literally.
When we got home Friday, she walked in the house to the kitchen. When it was time to walk to her bedroom for bed, she started to sing this song that went something like this..."I love to walk. I am walking. I love Michigan because I learned to walk with Przemek and Sylwia." and the song went on and on. It was the first time that I think she allowed herself to be truly proud of what she has accomplished.
Last night we got to have dinner at the Livingston's on a cold and rainy Michigan night. Reggie was in his funny mood and was completely entertaining us. He and Josie were playing drums, crawling around the room and acting crazy. Oliver built them a fort and made them popcorn. Fun to be with them.
Today, we went to Blake's Cidermill with Lory, Madison and Grady Eger. It was cold and a little rainy when we were leaving. When we got there, we actually had decent weather. We picked and tasted so many apples. We also picked pumpkins. We had cider, donuts and headed home. Great day at the apple orchard.
We are getting ready for one more week and then a week break in Palm Desert with the family. Hope everyone had a great weekend. Jenny and Josie
Subscribe to:
Posts (Atom)
