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.
Thursday, July 4, 2013
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.
Tuesday, August 21, 2012
Summer of swimming, stones, and St. Louis
Well it's been a long summer!!! For one thing I finished up my pregnancy in 100 degree weather! Sydney Nicole was born August 10th. She was 7 lbs 14 ozs and 20inches! Looks a lot like her brother Bryant. The rest of our summer was spent swimming and going to St. Louis for Christian's kidney stone removal procedures. We were there almost every 3 weeks. The first trip we didn't get to do anything because Christian woke up that day with a fever and then had a seziure. So we drove straight back home and ended up in the hospital for 2 days.
Then we went back and they did lithotripsy on his left kidney and that went well and those stones were broken up and passed. Then we went for trip 3 to put a stint in his right ureter to dialate it so that they could put a scope up there to break up the stones in the left kidney and pull them out. This was more invasive than what they did on the left kideny. So we did that and went home. Then trip 4 was to do the procedure. That took about 3 hours and we went home that day. This is where things took a turn for the worse.
That night we got home Christian started running 103 temps on and off thru the night. I rotated tylenol and motrin and kept in contact with his urologist that night and the next day. He suggested we go see our pedicatirican to check out his lungs and urine for an infection. My pedicatrician was off that day but her sister is also a doctor there and so we got in to see her. Once we got there it turned out that our pedicatrician was there to see a couple of patients. So we get there and Christian is geting warmer because he is about 20 minutes overdue for his next round of tylenol. As the doctor is asking questions Christian starts having a seizure. I tell the doctor "he's having a seizure...take note of the time". I can tell by his more agressive jerking movements that this one will probably last 5 mins and I will need to give his emergency medicine that we always carry. At 4:25 it had been 5 mins and I gave the diastat. At this time my pediactrician had already been called in since she is familiar with Christian. After 1 minute the medicine did not work and I told them to call 911. This has only happened one other time to Christian. His temp was up to 105 by now. They put oxygen on him and waited for the ambulance. The good thing is that the hospital is 2 mins down the road from the office. Eric was already on his way to the office to help with Christian but did not know what was happening. Poor guy was greeted by the nurse to be informed before he walked in to a room with his son seizing and oxygen mask on. I just watched and waited. In my mind i watched the time tick by each 5 minutes passing and knowing this was not good for is body and brain. At one point I asked if it should be taking so long.
The ambulance arrived and we relayed info..seizure started at 4:20...10 mg diastat given at 4:25...uteroscopy done yesterday...stint in...do not give dextrose...
I rode in the front seat and repeated do not cry ,, do not cry....knowing when we got to the e.r i would need to give them vital info about Christian's complicated history and the diet he's on. I just wanted the ambulance to go..to get to the hospital. They took a couple minutes to start an i.v but gosh i just wanted them to go! So I just sat there and waited for what seemed like forever.
It's now been 20 mins of seizure...the paramedics run the gurney to the blue pod of E.R. I try to keep up at 8 mths pregnant but i'm a tad slow and figure I will get there eventually. I can't believe this is happening. About 10 people proceed to work on him. One doctor giving orders. It was like a well running machine..each person with their job. I dictated everything they needed to know to one nurse who stood behind a computer...typing away everything I said and asking questions as needed. I stood in the corner and watched and answered questions. The clock just kept ticking by. Just breathe Robyn. All the while I kept praying that God would stop the seizure! They had also put ice bags and a fan on him to get his temp down. Eventually we hit 45 minutes of seizure activity! I just stood there after I had given all of the information...i just stood there and watched and waited. There was nothing else for me to do.
They called his neurologist and followed protocol of giving a certain drug and certain amount at intervals..hoping that it would stop. After an hour he was still seizing! I felt like I was in a movie. How could this be happening. His heart rate stayed in the 200's. After an hour and 10 mins, the doctor warned us that they would have no choice but to give him something to shut him down which would likely include intubation if this last drug didn't work. Sometimes kids can't keep breathing on their own once they are given such powerful drugs. And we had agreed that if that happened we would fly him to st louis childrens. Then of course I start thinking oh no if that happens I can't fly with him because I'm 8 mths prego! Thank God the last drug worked. The jerking stopped and his heart rate came down.Oh thank you God!!! I hate to admit it but at one point as we just waited I wondered how this day would end. Is this what happens? Will I be one of those parents? God intervened and the seizure stopped.
Christian slept for the next 2 days due to the exhaustion from the seizure and powerful medicine given to stop the seizure...we stayed in the hospital for the next 7 days while they tried to figure out why his temp kept going up. That was the mystery. Nothing was ever found that gave us an answer as to why he kept running a fever. We all figured it may of just been his bodies reaction to the kidney procedure. Christian did regress in areas of his motor skills but has since bounced back.
During this time we were so grateful for all prayers, meals, and well wishes.
Then we went back and they did lithotripsy on his left kidney and that went well and those stones were broken up and passed. Then we went for trip 3 to put a stint in his right ureter to dialate it so that they could put a scope up there to break up the stones in the left kidney and pull them out. This was more invasive than what they did on the left kideny. So we did that and went home. Then trip 4 was to do the procedure. That took about 3 hours and we went home that day. This is where things took a turn for the worse.
That night we got home Christian started running 103 temps on and off thru the night. I rotated tylenol and motrin and kept in contact with his urologist that night and the next day. He suggested we go see our pedicatirican to check out his lungs and urine for an infection. My pedicatrician was off that day but her sister is also a doctor there and so we got in to see her. Once we got there it turned out that our pedicatrician was there to see a couple of patients. So we get there and Christian is geting warmer because he is about 20 minutes overdue for his next round of tylenol. As the doctor is asking questions Christian starts having a seizure. I tell the doctor "he's having a seizure...take note of the time". I can tell by his more agressive jerking movements that this one will probably last 5 mins and I will need to give his emergency medicine that we always carry. At 4:25 it had been 5 mins and I gave the diastat. At this time my pediactrician had already been called in since she is familiar with Christian. After 1 minute the medicine did not work and I told them to call 911. This has only happened one other time to Christian. His temp was up to 105 by now. They put oxygen on him and waited for the ambulance. The good thing is that the hospital is 2 mins down the road from the office. Eric was already on his way to the office to help with Christian but did not know what was happening. Poor guy was greeted by the nurse to be informed before he walked in to a room with his son seizing and oxygen mask on. I just watched and waited. In my mind i watched the time tick by each 5 minutes passing and knowing this was not good for is body and brain. At one point I asked if it should be taking so long.
The ambulance arrived and we relayed info..seizure started at 4:20...10 mg diastat given at 4:25...uteroscopy done yesterday...stint in...do not give dextrose...
I rode in the front seat and repeated do not cry ,, do not cry....knowing when we got to the e.r i would need to give them vital info about Christian's complicated history and the diet he's on. I just wanted the ambulance to go..to get to the hospital. They took a couple minutes to start an i.v but gosh i just wanted them to go! So I just sat there and waited for what seemed like forever.
It's now been 20 mins of seizure...the paramedics run the gurney to the blue pod of E.R. I try to keep up at 8 mths pregnant but i'm a tad slow and figure I will get there eventually. I can't believe this is happening. About 10 people proceed to work on him. One doctor giving orders. It was like a well running machine..each person with their job. I dictated everything they needed to know to one nurse who stood behind a computer...typing away everything I said and asking questions as needed. I stood in the corner and watched and answered questions. The clock just kept ticking by. Just breathe Robyn. All the while I kept praying that God would stop the seizure! They had also put ice bags and a fan on him to get his temp down. Eventually we hit 45 minutes of seizure activity! I just stood there after I had given all of the information...i just stood there and watched and waited. There was nothing else for me to do.
They called his neurologist and followed protocol of giving a certain drug and certain amount at intervals..hoping that it would stop. After an hour he was still seizing! I felt like I was in a movie. How could this be happening. His heart rate stayed in the 200's. After an hour and 10 mins, the doctor warned us that they would have no choice but to give him something to shut him down which would likely include intubation if this last drug didn't work. Sometimes kids can't keep breathing on their own once they are given such powerful drugs. And we had agreed that if that happened we would fly him to st louis childrens. Then of course I start thinking oh no if that happens I can't fly with him because I'm 8 mths prego! Thank God the last drug worked. The jerking stopped and his heart rate came down.Oh thank you God!!! I hate to admit it but at one point as we just waited I wondered how this day would end. Is this what happens? Will I be one of those parents? God intervened and the seizure stopped.
Christian slept for the next 2 days due to the exhaustion from the seizure and powerful medicine given to stop the seizure...we stayed in the hospital for the next 7 days while they tried to figure out why his temp kept going up. That was the mystery. Nothing was ever found that gave us an answer as to why he kept running a fever. We all figured it may of just been his bodies reaction to the kidney procedure. Christian did regress in areas of his motor skills but has since bounced back.
During this time we were so grateful for all prayers, meals, and well wishes.
Tuesday, May 15, 2012
stones
Well it's been awhile since i've posted anything. We came home from Sikeston and have been just going to school and trying to really work hard on our walking progress. We have had a week or 2 of sicknesses here and there and Christian didn't make much progress and stayed the same as far as the amount of time he walked or how far. In the past 3 weeks he seems to have really taken off though. He is really wanting to move and needing less prompting from me. I will get video on here.
kidney stones
On a completely different note, Christian has some stones in his right and left kidney that are too big to pass. They are going to use a lithitripsy on the left kidney to break up the stones and then he will pass them. We are actually at the hospital doing that as i type this. The on the right kidney they will go in thru the ureter to break them up with an instrument and pull them out. So that is where we are at with the kidney stones.
We are excited for summer. Also we are expecting our daughter , Sydney Nicole, in August. What fun it has been to see the pink stuff filling the closets. Bryant is more fun everyday. It's most enjoyable to watch his sweetness with Christian. He will hand him his toys and randomly give him kisses or lay next to him. Can't wait to watch all of them grow up together.
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