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.
Saturday, September 15, 2012
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.
Thursday, February 23, 2012
last day
Well we are almost done here in Sikeston. I have to say this has been one of the more stressful intensives we've done due to the fact that we were "starting over" with Christian's body as far as standing and walking and I have a 1 year old and 14 wks pregnant...needless to say that adds a little more to the plate. I would also say this has been one of the more umm rewarding (i guess that's the word) visits. I saw Christian go from the first week of barely standing to this last week of totally pushing up and standing and walking. He and Brandy have worked so hard. I am very proud of him! He still has a ways to go but at least now I'm not worried that he may never get it figured out.
I don't know what I would do without the opportunity to come here and have Christian participate in this intense physical therapy. It makes a world of difference. The pt is able to get a real look at him over the 3 hours a day/3 week session. It also gives her time to see what needs to be worked on and try out different equipment, braces, and techniques to get him doing what he needs to do. I am glad that we got the baclofin pump and are on our way back to better walking.
VIDEOS -these are from these last couple of days work.
THANK YOU- to my mom,dad, granny for all of your help with Bryant, laundry, meals, your house and much more!!!! To everyone who participated in the Dodging to make a Difference Tournament! This fundraiser makes it possible for us to come to this!! My husband who has to miss us for 3 weeks except for visits on the weekends! All who have been praying for Christians' health and progress!!
Monday, February 20, 2012
Week 3 of intense pt feb 2012
Sorry I haven't done a good job keeping up this time around. Week 2 christian had a good progress day every other day. I didn't feel like I had anything new to say. I think it was thursday that he had a great walking day. We figured out a great set up for his arms. The problem is his left arm is usually strapped down since he doesn't hold on. Lefty not a problem. Now right arm is tricky-he doesn't want it strapped down but won't hold on to his handle the whole time. When he does he looks great and stands up straight. AFter awhile he wants to bite it or just wonder around with it:) Anyways we figured it out.
So this weekend (last weekend here) christian did some great sit to stands at home. I feel like he's really gotten stronger and put the pieces together. Far from perfect but using his butt muscles more and just not squeezing his legs together as much to stand. I will try to get video on here.
The picture of C laying down with what looks like a palm pilot and then a round device on his stomach--is---how they adjust hip baclofin pump. The round thing on his stomach is magnetic i think? it is just on top of where his pump is on the inside of him. Then the handheld device tells the doctor it is connected and reads what dosage he's at and the doctor can then adjust up or down...pretty cool. Also the videos are from the week after he had the pump put in. I'm just getting these on here.
Tuesday, February 14, 2012
intense pt Feb 2012
Starting over is never fun:) I say that to say this--so Christian had his baclofen pump installed Jan 4Th and we are now here in Sikeston to do his intense physical therapy program. This worked out perfectly as far as timeline with getting the pump. He was able to have enough time to heal and then come here to get him familiar with using his "new" body. I say "new" because as I've explained before he was used to using his body one way to function (walk, sit, stand..) and now he has to learn a different way. I would say more correct way to do those things.
Today was day 7 of therapy. The first week was well let's just be honest...for me it was a struggle to watch Christian not be able to do things like stand and walk as well as he used to. And again this is because he's working with a different body not because of his therapist or anything like that. Actually I feel like her job is harder because now she is having to rethink how to teach Christian to use his new body. This means finding new motivators, new techniques. I have to admit the first week was kind of a bummer for me considering I'm use to seeing him differently. I guess what I mean is he didn't have to struggle so much. Basically Christian has no strength in his butt muscles so when he stands he just sticks his butt out and doesn't use them to straighten himself up. I think it's important to say that everyday of therapy or things we do are not always great. It's easy to put the highlights on here and leave out the low lights but that's not realistic. Sometimes raising a child with special needs is frustrating, sad, and hardwork. That's just the reality of it.
On day 3 we saw better standing...meaning standing up straighter and pushing up more on his own. Day 4,5 was even better as far as standing and pushing the weights with his legs. Day 5 he did a little walking. Today day 7 we did mostly all walking. I was so excited for him!! He used his pacer walker. I don't have video because I was helping. sorry. I have video of some other things that he did. He is mostly working on strengthening his legs and butt, standing, and walking.
THANK YOU-to all of those who contributed to getting Christian here to this therapy program. We appreciate it more than you'll ever know.
Robyn
Today was day 7 of therapy. The first week was well let's just be honest...for me it was a struggle to watch Christian not be able to do things like stand and walk as well as he used to. And again this is because he's working with a different body not because of his therapist or anything like that. Actually I feel like her job is harder because now she is having to rethink how to teach Christian to use his new body. This means finding new motivators, new techniques. I have to admit the first week was kind of a bummer for me considering I'm use to seeing him differently. I guess what I mean is he didn't have to struggle so much. Basically Christian has no strength in his butt muscles so when he stands he just sticks his butt out and doesn't use them to straighten himself up. I think it's important to say that everyday of therapy or things we do are not always great. It's easy to put the highlights on here and leave out the low lights but that's not realistic. Sometimes raising a child with special needs is frustrating, sad, and hardwork. That's just the reality of it.
On day 3 we saw better standing...meaning standing up straighter and pushing up more on his own. Day 4,5 was even better as far as standing and pushing the weights with his legs. Day 5 he did a little walking. Today day 7 we did mostly all walking. I was so excited for him!! He used his pacer walker. I don't have video because I was helping. sorry. I have video of some other things that he did. He is mostly working on strengthening his legs and butt, standing, and walking.
THANK YOU-to all of those who contributed to getting Christian here to this therapy program. We appreciate it more than you'll ever know.
Robyn
Sunday, January 15, 2012
you never know
Well we are 2 weeks out from surgery and overall it hasn't been bad. We are going to work on getting his legs going and pray for the seizures to stop flaring up.
We stayed at the Ronald McDonald house which has been wonderful. It's a year old and very nice. Groups come in every night and make dinner for the house. This is such a treat for the parents staying here. Most of their kids are preemie babies in the NICU, having surgeries, or sick in the hospital. There are families from all over....the Caribbean, Belize, Illinois:) The fact that you don't have to worry about eating out or getting food from the store is so nice. Each room has a daily chore, you do your own laundry, and clean your room. I've met some parents who have kids with cerebral palsy like Christian. It's been nice to talk to them. A couple of moms had multiples and lost some of the babies. You never know who has been thru what..
Ranken Jordan is an amazing facility. It is set up as a pediatric rehab hospital. There are infant-23yr olds living there. They have a 24/7 staff of nurses, doctors, aides, kitchen staff, and therapists. Not to mention tons of volunteers! During our week there, I noticed that the kids who were about 5th grade to college age were either there for reasons of medical need due to conditions like Christians (CP, neurological issues) that they were born with or some were there because of injuries due to accidents. I noticed one boy and mom that arrived about our 3rd day. He seemed to be about 12. He had been in an accident(don't' know what kind). He had a long scar on his shaved head and half his skull was missing. He had a couple of machines attached to his wheelchair which was tilted for his sitting position. His mom carried a bag with his medical necessities. He was in music therapy with us and enjoyed the piano. He would tap it with 2 fingers. I never heard him talk. His mom seemed quite and took everything in as the therapists talked and helped her son. At some point a therapist asked what he liked to do and his mom said "he used to like building things with legos...he was good at that" You could feel the sad tone of the way she knew she was talking in past tense. I thought how incredibly difficult to one day have that son and then another day be thrown in to this medical world and start rebuilding your son's new life. I imagined the other parents who had walked thru those doors..the ones whose daughter became paralyzed after a diving accident or whose 5yr old couldn't walk or talk because someone broad sided their vehicle (true stories). I also know that there are amazing things done at Rankin Jordan with kids to regain walking, sitting, talking,.....
Just remember to be thankful for everyday with your kids and not take their abilities for granted! And don't sweat (or complain about)the small stuff.
Pictures-these are from the past yr. the one with c in a yellow shirt is the first time i got them together while c is sitting by himself (huge accomplishment)
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