Today will be our first full day which means 2 "dives". We go at 8 am and 1pm.
This morning we had quite the range of people in the chamber .I enjoy hearing people's stories and their improvements. But today was a little bit sad. One boy who is 6 , like Christian, and has brain damage(like c does) but unlike Christian he was born healthy. He's damage was due to abuse at the age of 3. His grandma took custody of him and works tirelessly to get him help. He was not supposed to live but is obviously thriving. Such a sad situation but also beauty from the love of his grandma.
Another guy was 82 and just a gentle spirit. He kept saying Hi and waving at C. He is also friends with john q hammons! whaaaat? this guy is a builder...apparently builds major structures.
The other lady is about 36 and had 2 strokes 5 years ago. This is her first time to do hyperbarics and intense therapy. She is from St. Louis and has 2 kids. It's very hard for her to be away from them. Her mom is here helping her. She's so determined to walk without her cane..i think she will get there.
The common thing is family stepping in to help whenever it is needed and at whatever cost.
Tuesday, July 9, 2013
Monday, July 8, 2013
Hyperbarics Day 1
We are back to Kansas City to try Hyperbaric Oxygen Therapy with Christian again. We did this back in 2009-10. If you go back to those years on the blog you can look at what we did and pics and video.
What led us to do this? We are trying to get Christian off of the ketogenic diet. Although he has had great success on seizure reduction we have also had not so pleasant side effects. Christian has kidney stones due to the diet. We knew this was a possibility but hoped it wouldn't happen. Also the diet is just not natural and lacks vitamins (he takes vitamins to make up for this) and minerals. Also it's just at times annoying to have to make meals and take them, he can't eat with kids at school or bday parties. There are just a lot of little things that come in to play with being on the diet. He has been on it 3 yrs now. We are grateful for the time it has given Christian to not have seizures everyday.
We tried to wean down off the diet and that has not been successful. He has started to have more seizures after going down 2 steps of ratios on the diet. So we see that this is not a possibility without having more seizures. That leads me to why we are here doing hyperbarics. We are hoping that it will reduce his seizures like it did when he was 2yrs old.
The link below will also explain what Hyperbaric oxygen therapy is. Just click on the sentence.
This is the place we are doing HBOT
THANK YOU:
Thank you to all of you who participated in the Dodging to make a Difference -Dodgeball Tourn.
The money raised is helping Christian get the therapy he needs. Hyperbaric Oxygen therapy is not covered by insurance. We are hopeful that we will see some good things start to happen for Christian because of this therapy. At the end of the day, we want to say that we tried to help him have the best life possible.
What led us to do this? We are trying to get Christian off of the ketogenic diet. Although he has had great success on seizure reduction we have also had not so pleasant side effects. Christian has kidney stones due to the diet. We knew this was a possibility but hoped it wouldn't happen. Also the diet is just not natural and lacks vitamins (he takes vitamins to make up for this) and minerals. Also it's just at times annoying to have to make meals and take them, he can't eat with kids at school or bday parties. There are just a lot of little things that come in to play with being on the diet. He has been on it 3 yrs now. We are grateful for the time it has given Christian to not have seizures everyday.
We tried to wean down off the diet and that has not been successful. He has started to have more seizures after going down 2 steps of ratios on the diet. So we see that this is not a possibility without having more seizures. That leads me to why we are here doing hyperbarics. We are hoping that it will reduce his seizures like it did when he was 2yrs old.
The link below will also explain what Hyperbaric oxygen therapy is. Just click on the sentence.
This is the place we are doing HBOT
THANK YOU:
Thank you to all of you who participated in the Dodging to make a Difference -Dodgeball Tourn.
The money raised is helping Christian get the therapy he needs. Hyperbaric Oxygen therapy is not covered by insurance. We are hopeful that we will see some good things start to happen for Christian because of this therapy. At the end of the day, we want to say that we tried to help him have the best life possible.
Thursday, July 4, 2013
4th of july..gets better every year!
The 4th....full of fireworks, bbq's, vacations..and seizures? huh?
Christian was born on jan 30th 2007 and on july 4th/5th we were told he had a diagnosis of infantile spasms which are a type of seizures babies have. Now let me tell you the back story.
Several weeks before the july4th we noticed christian would fling his arms out. To us it looked like he was being startled. As the week went on one "startle" became 2..3..6 at a time. The night of the 4th he did this and then made a face that looked sad and then cried a little. At that moment my stomach sank knowing that something was wrong..it no longer looked like a startle. It was odd and weird and scary. But what was it?
On the way to I Love America extravagannza I called the nurse line and described everything. She said it could be stomach isssues but for now call your pediactrician in the morning. I was somewhat happy about this but still felt like something was wrong. The next morning we were supposed to leave for Sikeston and then on to Destin for our family beach vacation. I was so excited. Boy did that change.
We went to our pediatrician the next morning and she directed us to our neurologist. I'm thinking ok well this is not just a stomach problem. After our neurologist watched the video we took of him having an episodes he said right away.."he has infantile spasms".."he is having seizures". This diagnosis is a very bad one to have for a baby.
I could not believe what I was hearing. I tried to hold back tears but there was no use in that. We didn't ask too many questions because we were so stunned. We left and went to walmart to get his new meds. I just sat there..at the pharmacy and cried and really didn't care who saw me. I couldn't believe my precious baby was having this terrible things.
We ended up not going on vacation. we were too worried to be that far away from his hospital and doctors that knew him.
Each year christian was doing better and better at where he was at in his life ...on the 4th of July. That first one was so devestating. As everyone was celebrating i was terrified of what those "startles" were. We are celebrating our 6th 4th of july with c and things are great...not to mention the additions to our family! Each year i love this holiday more and more.
Christian was born on jan 30th 2007 and on july 4th/5th we were told he had a diagnosis of infantile spasms which are a type of seizures babies have. Now let me tell you the back story.
Several weeks before the july4th we noticed christian would fling his arms out. To us it looked like he was being startled. As the week went on one "startle" became 2..3..6 at a time. The night of the 4th he did this and then made a face that looked sad and then cried a little. At that moment my stomach sank knowing that something was wrong..it no longer looked like a startle. It was odd and weird and scary. But what was it?
On the way to I Love America extravagannza I called the nurse line and described everything. She said it could be stomach isssues but for now call your pediactrician in the morning. I was somewhat happy about this but still felt like something was wrong. The next morning we were supposed to leave for Sikeston and then on to Destin for our family beach vacation. I was so excited. Boy did that change.
We went to our pediatrician the next morning and she directed us to our neurologist. I'm thinking ok well this is not just a stomach problem. After our neurologist watched the video we took of him having an episodes he said right away.."he has infantile spasms".."he is having seizures". This diagnosis is a very bad one to have for a baby.
I could not believe what I was hearing. I tried to hold back tears but there was no use in that. We didn't ask too many questions because we were so stunned. We left and went to walmart to get his new meds. I just sat there..at the pharmacy and cried and really didn't care who saw me. I couldn't believe my precious baby was having this terrible things.
We ended up not going on vacation. we were too worried to be that far away from his hospital and doctors that knew him.
Each year christian was doing better and better at where he was at in his life ...on the 4th of July. That first one was so devestating. As everyone was celebrating i was terrified of what those "startles" were. We are celebrating our 6th 4th of july with c and things are great...not to mention the additions to our family! Each year i love this holiday more and more.
Friday, March 1, 2013
flaws...we all got em
Well it was another one of those moments when Christian's life teaches me a life lesson. You know I must share. Christian was chosen Student of the Month in his class and the character trait was kindness. I was very proud and exited for him. It was time for the group picture of all of the kids who were student of the month. We were at the end of the boys line and the boy in front of us who looked to be 4th grade turns as we are walking and say "is he blind" (he says it as if he already knew or to say "he's blind right"...like no big deal, just checking). I answer "yup but he can hear really good". He states "well that's good cuz i can't hear very well ...i have glasses (which he was wearing:)
I love, love, love the simply , innocent, nonjudgemental minds/thoughts/and words of kids.They just ask as if they want to know and there's no reason why they wouldn't ask. I kinda got a kick out of it really.
What I learned today is this: We need to accept others flaws and admit to our own!
I love, love, love the simply , innocent, nonjudgemental minds/thoughts/and words of kids.They just ask as if they want to know and there's no reason why they wouldn't ask. I kinda got a kick out of it really.
What I learned today is this: We need to accept others flaws and admit to our own!
Friday, February 1, 2013
2012 in review
Just wanted to summarize 2012 and especially in regards to Christian. I know many of you keep up with us and his progress thru the blog.
In January he got his Baclofen Pump. This pump is placed under the skin on his lower torso. A catheter delivers medicine in to his spinal fluid. This medicine helps "loosen" his muscles. Instead of his legs being rigid and hard to move they are loose due to the continual release of medicine. I'm so glad that we did this. It has been so great for him in many ways...easier to dress and change him, less muscle spasms, helped him gain weight because muscles aren't always contracted, and improved walking. However at first he could not stand because he was used to using his tone. So...
In february we went to Kenny Rogers Child Center in Sikeston for our 3 week intensive. We purposefully planned this after the pump..knowing he would need intense work to get back to standing and walking. You can look back in the blog to read about that visit. Overall he got back to where he needed to be physically by doing this intense therapy.
March and April was spent continuing to work on strengthening his legs and upping the dosage of medicine released. However we did find out that he had large kidney stones (too large to pass) which are a side effect of the ketogenic diet. On that note....the diet is controlling his seizures wonderfully. He has 1-4 a month and they are small..lasting about 10 secs to 1 minute.
May, June, July
The summer was spent traveling to St Louis Children's Hospital to treat his stones. Basically we were going every 2 weeks. They were treating both kidneys. On our last treatment he did not react well. The next day he had a one and half hour long seizure that landed us in the icu 2 days and peds floor 4 days. A lingering temp was the mystery...
We did enjoy swimming and Silver Dollar City as much as possible in between trips to St. Louis
August
Baby Sydney Nicole was born 8-10-12. This was the highlight of our year!!! She was our little baby of the family at 7,14...My mom stayed on and off for 5 weeks due to the fact i couldn't lift Christian. We are so grateful. That was hard for me to not be able to work with Christian.
September-December
Christian started Kindergarten..hard to believe. His teachers are fabulous. He attends 3 hours a day. School can be tiring for him but he loves it. Always smiling when we mention it. We continued to up his dosage of baclofen and he is doing great with his pump. His transitional walking (walk to and from chairs or stander..10-15 steps) is improving. We are trying to get him to walk more so that we are not carrying him.
He has mastered signing for "more" and "drink". We are working on signing "yes" and "all done". He also has 2 buttons that say Hi and Bye and he has almost mastered that skill.
Christian continues to go to physical, occupational, and speech therapy outside of school and in school. We are waiting to be scheduled for our next intensive in Sikeston.
Overall 2012 was great... some medical highs and lows..and of course our newest addition Sydney. Can't wait to see what 2013 holds.
In January he got his Baclofen Pump. This pump is placed under the skin on his lower torso. A catheter delivers medicine in to his spinal fluid. This medicine helps "loosen" his muscles. Instead of his legs being rigid and hard to move they are loose due to the continual release of medicine. I'm so glad that we did this. It has been so great for him in many ways...easier to dress and change him, less muscle spasms, helped him gain weight because muscles aren't always contracted, and improved walking. However at first he could not stand because he was used to using his tone. So...
In february we went to Kenny Rogers Child Center in Sikeston for our 3 week intensive. We purposefully planned this after the pump..knowing he would need intense work to get back to standing and walking. You can look back in the blog to read about that visit. Overall he got back to where he needed to be physically by doing this intense therapy.
March and April was spent continuing to work on strengthening his legs and upping the dosage of medicine released. However we did find out that he had large kidney stones (too large to pass) which are a side effect of the ketogenic diet. On that note....the diet is controlling his seizures wonderfully. He has 1-4 a month and they are small..lasting about 10 secs to 1 minute.
May, June, July
The summer was spent traveling to St Louis Children's Hospital to treat his stones. Basically we were going every 2 weeks. They were treating both kidneys. On our last treatment he did not react well. The next day he had a one and half hour long seizure that landed us in the icu 2 days and peds floor 4 days. A lingering temp was the mystery...
We did enjoy swimming and Silver Dollar City as much as possible in between trips to St. Louis
August
Baby Sydney Nicole was born 8-10-12. This was the highlight of our year!!! She was our little baby of the family at 7,14...My mom stayed on and off for 5 weeks due to the fact i couldn't lift Christian. We are so grateful. That was hard for me to not be able to work with Christian.
September-December
Christian started Kindergarten..hard to believe. His teachers are fabulous. He attends 3 hours a day. School can be tiring for him but he loves it. Always smiling when we mention it. We continued to up his dosage of baclofen and he is doing great with his pump. His transitional walking (walk to and from chairs or stander..10-15 steps) is improving. We are trying to get him to walk more so that we are not carrying him.
He has mastered signing for "more" and "drink". We are working on signing "yes" and "all done". He also has 2 buttons that say Hi and Bye and he has almost mastered that skill.
Christian continues to go to physical, occupational, and speech therapy outside of school and in school. We are waiting to be scheduled for our next intensive in Sikeston.
Overall 2012 was great... some medical highs and lows..and of course our newest addition Sydney. Can't wait to see what 2013 holds.
Wednesday, November 21, 2012
They dodged and made a difference
Hello everyone...well I'm back from fundraiser planning:) Our 5th year of Dodgeball was our best year yet. We had 16 teams in the 5th/6th group, 5 in the jr high group and 10 in the adult division. We had to split the court and play 2 games at once for that first group so that it didn't take all day:)
Thank you to all of the businesses who donated-Lambers, Express Care Valvoline, Taco Bell, Rib Crib, Sonic, Shoneys, Yogurtini, Family Video, Godfathers, Dominoes, Papa Johns, Caseys, Barnett-Davis Dental, Ozark Therapy Institute, Mandy Evans Photography, Stacey's Sweets, Primas Mexican Grill, Chesterfield Family Center, Famous Daves, Image Pro Group (tshirts), We could not do this without all of the generous people and businesses!
I would also like to thank my family and friends who volunteer every year to help make this successful. You are all amazing! Thanks to the parents and players who got your kids to the tournament, sponsored teams, purchased shirts and cheered everyone on.
It's really not about who wins but the fact that you are having fun and making a difference in one boy's life..our sweet Christian. We raised what we had hoped to raise to take Christian to physical therapy at the Kenny Rogers Child Center in Sikeston, MO. He will work in a 3 week, 3 hrs a day physical therapy program. The intensitity of it is what makes it so successful in helping Christian make more progress in his walking and standing. We were also raising money for speech therapy. Our insurance does not pay for speech therapy.
Thank you to all of the businesses who donated-Lambers, Express Care Valvoline, Taco Bell, Rib Crib, Sonic, Shoneys, Yogurtini, Family Video, Godfathers, Dominoes, Papa Johns, Caseys, Barnett-Davis Dental, Ozark Therapy Institute, Mandy Evans Photography, Stacey's Sweets, Primas Mexican Grill, Chesterfield Family Center, Famous Daves, Image Pro Group (tshirts), We could not do this without all of the generous people and businesses!
I would also like to thank my family and friends who volunteer every year to help make this successful. You are all amazing! Thanks to the parents and players who got your kids to the tournament, sponsored teams, purchased shirts and cheered everyone on.
Saturday, September 15, 2012
DODGEBALL TOURNAMENT NOV.3RD
Yes it is that time of year...leaves change, pumpkins are picked, smell firepits and of course
Dodgeball!!!!!!!!
The 5th Annual "Dodging to make a Difference" Tournament is SATURDAY NOV. 3rd!
More information to come!!!
Like us on facebook at dodging to make a difference.
Dodgeball!!!!!!!!
The 5th Annual "Dodging to make a Difference" Tournament is SATURDAY NOV. 3rd!
More information to come!!!
Like us on facebook at dodging to make a difference.
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