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.

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.

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.

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.

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!!

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.

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

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)

ready to go home

Well Iofficially hit my point of-i want to go home-on friday. Christian had seizure that morning so after that he didn't do too hot in ot since he was tired. They had to fix his back brace because it was digging in his ribs while sitting. And I"m just overall ready to be home where everything is where it is and easy access. We then had to skip nap to go to the kidney doctor for 6 month check up. He still has kidney stones due to the ketogenic diet (which helps control seizures). Actually he passed several thursday night. Nothing new to do, they just monitor his kidneys. We would have to stop the diet to stop the stones.

He did pretty good that afternoon in pt. the picture is of him sitting with leg braces on. These give his hamstrings a really good stretch. Before the pump he could not have done this. He did some pretty good standing also. I tried to get videos on here but somethings not working.

day 7,8 and matters of the heart

Every day gets a little better-bruising is down, times of uncomfortableness is more spread out, rash from tape is better,happier! In OT, he is doing some great sitting with little assistance, working on grasping puzzle pieces, switch work-which mean using a switch to operate a toy and then adding another switch that does nothing. He has to figure out that only the 1 operates the toy. He definitely recalls by memory where the correct switch is. Sometimes gets stuck on the one on his right side. He also got to do some swinging. loved!!!

In PT, he did some standing which has gotten better. He wasn't wanting to stand at all until 2 days ago. He is so used to using his "tone" to stand and we took that away. Now he has to build up the muscles and allow the brain and body to get used to standing without tone. Tried walking in a walker but got nothing from that. He is tolerating being in his stander so that's good!

There are 2 other girls in the day program and so we eat lunch together and talk which is so fun. They are 9 and 12. Such personalities!!! One of them talks about Bryant everyday. She met him last week. They like to talk to Christian too! I will miss them. The 12 yr old has the same OT as Christian and I said she gave me some good ideas to do at home with him. She said"I'm glad my momma don't come here" Luv it.

MATTER OF THE HEART:
Anytime I go away for things like this I just know that there will be people that I run in to that I'm supposed to-divine appointment is what I like to call it. It almost excites me! I tried to be aware of that and not let opportunities for God to use me pass me by. So it happened in the kitchen...A young couple had their first son early and he is in the NICU here and has a heart defect. So she's telling me about it and I just know that this is where I'm supposed to share what God did for Christian's heart...in my mind I'm thinking ok this is it! And so I shared how Christian was born with a heart defect and the doctor said it would never fix itself and how at 3 months old we went to the doctor for our monthly visit and they did an echo and the technician says "you said he had ebsteins anamoly?" and i say yes. And at that moment you could see this look on her face like something didn't match up. She continues and finishes and we go wait for the doctor. He comes in and says "I don't know how to explain this but his heart is perfect. There's nothing wrong with it anymore. This has never happened." And I say "well we believe in the power of prayer". This was just one of our miracles in the last 5 yrs. And so I told this young mom to just know that God is working and we will be praying for him! I think 5 yrs ago God knew this "matters of the heart" kitchen encounter would happen:) We still have the drawing that the doctor gave us explaining his heart condition. It reminds me that nothing is too big for Him and He knows way more than we do and the whys of it all. Also a funny fact is that on paper doctors would look at his heart defect he was born with and say "that doesn't really match up with the other stuff that happened". And then they always say "so he doesn't have this anymore? "no" Did he have surgery? "no". :)))

day 6 pump

I didn't post over the weekend since we didn't do any therpy and nothing new was happening. Christian did fine over the weekend though. He even stood up 4 times for me.

Today he started occupational therapy (ot) and physical therapy(pt) at Ranken Jordan. In OT he worked on the swing, putting puzzle pieces in place with a pincer grasp, switch work with the bubble column. In PT, we had to get his back brace adjusted because of the way it was hitting him at his legs and the pump. Besides that he was in the stander for 15 mins and did great. He did not act like he was in pain during any of these activities. The only downside to today is that Christian is allergic to the tape that is used to cover his bandage. He has a rash all over his chest from it. They changed tapes today. The incision is healing nicely, swelling and bruising has gone down too.

One of the volunteers has a service dog and Christian pets him everyday. The minute he touches him he starts verbalizing and gets so excited! It is amazing what animals can do.

day 4 pump

Christian finished yesterday beautifully!! No problems with pain and we weaned down to just Tylenol every 6hrs. We picked up our 1 year old Bryant yesterday. He has been staying with my mom and dad. I'm not sure that he even wanted to see us because he likes them so much (which is great)! thanks mom and dad and granny!!

We contemplated waiting one more night to get him .....and probably should have. He usually sleeps thru the night but was up twice last night and woke up Christian at 3am which is when his pain med would have ran out. We wanted to see if he would sleep thru the night but....thanks Bryant:) They both went back to sleep thankfully. I prayed very hard that they would just go back to sleep:)

RANKEN JORDAN-this is a pediatric rehab facility in St. Louis. It is very nice and has anything you could need. Some patients stay there for weeks or months while others just have outpatient therapy. Christian is in there day program. He will go from 9-2 and receive OT and PT. In between those times of therapy he will get to participate in music therapy or art or recreation. Lots to choose from! He was also fitted for a short back brace today that he will where for 3 months. It keeps him from doing too much twisting motion which can make the catheter come loose. They won't it to be good and secure before he does too much of that.

TODAY-Today he has acted a little fussy, guessing from soreness of being up more. However he tolerated his pt and ot evaluation. They even put him on his stomach!! yikes! the pump as well as an incision is on the stomach. It was only for a couple of minutes but this made me nervous. They basically measured his tone(tightness in muscles) and what he could do to see what they need to work on next week. He and Bryant are napping now..hallelujah:)

We will just relax this weekend and then get going Monday. Thank you all for your kind words and prayers, it means more than you will ever know.

Day 3 pump

Today was another good day. We actually were discharged from the hospital today. We will start his therapy program tomorrow up here. We are considered to be in the day program. So we will go from 9-2 for therapy and for the doctor to do any adjustments on the pump. Then we will be back at the Ronald Mcdonald house.

Today they changed the dressings on Christians incisions and everything looked good so that was a relief.

More to come.. . .

Scars

So I had mostly dreaded this whole surgery process months and weeks before the actual day. Chrisitian has never had surgery so we haven't had to deal with the cutting open, healing process. And on top of that having a pump put in which is a foreign object in your body. So of course all of those things are so unknown. My biggest hang up was the fact that we would be putting 2 scars on his body. I think it makes me feel so bad because he will never look like he does prior to this. Instead of a scar fee stomach and back, there will be 2 obvious scars there. I'm not knew to the scar world, I have several from childhood accidents. It's just different when you are deciding to do something to your child that will leave scars. I find it odd that this was my biggest "dislike" of doing this. And once again God has used this. So as I was pondering on this scar thing last week I was reminded that God also had to watch his Son receive scars and keep them. Of course Jesus's scars are for a whole different reason but still it reminds me that God does feel what we feel sometimes as parents. It was like God saying "i know Robyn, I know". I'm so thankful for the scars that Jesus wears for my sins...

Time and time again I am reminded that He knows and is with me and is never leaving! I know that these scars are temporary on this earth and hopefully in the end those scars will be a minor thing compared to the good things the pump is going to do for Christian. After all, aren't scars supposed to make guys look tough:) He certainly is a tough one!

pump day 2

The first night went ok. He did well thru the day-played with toys, happy, eating. . . then around 8 pm tried to change his diaper and he was on the end of that round of pain meds and boy oh boy!!! He was in so much pain. He was screaming and grinding his teeth. We finally got that under control and he slept until 3 am and was in discomfort again. It was time for the next pain meds anyways. So he is still sleeping as of now (11am).

Yesterday his legs were looser than normal but not where they will need to be. They are not messing with the baclofen dosage right now. That will be done at Rankin. He will still not be able to sit up more than 45 degrees today. In the morning he will be able to get up.

In the meantime hospital life is as good as it could be. The staff is wonderful, family room amazing, and bed pretty comfy in his room. Of course, there is the constint flow of people. But they are just doing there jobs. O how I long for this to be over and be home. But this is the journey!


REST OF DAY 2 ADD ON:
Christian had a great day today. No obvious signs of pain-ate 2 and half meals and played. I just left to get some sleep while eric sleeps at the hospital tonight. As I left, Christian was sleeping. Hopefully he will have a peaceful night sleep.

Baclofen pump implant

Christian had his pump implanted today (jan 3). The surgery went great and he is sleeping right now. Hopefully when he is fully awake he will not be in too much pain or confusion as to why he has this pump now.

We are staying at the Ronald McDonald house in St. Louis. They are so accomodating. We are very thankful for a place to stay and supper provided. I will keep you updated as to how he is doing.

Sleep was difficult last night. I think there's always the concern of -am making the right decision for Christian? how's this going to go?...
Eric and I remind ourselves that we are doing what's best for his quality of life.