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.
Friday, January 6, 2012
Thursday, January 5, 2012
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.. . .
Today they changed the dressings on Christians incisions and everything looked good so that was a relief.
More to come.. . .
Wednesday, January 4, 2012
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!
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.
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.
Tuesday, January 3, 2012
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.
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.
Monday, December 5, 2011
It's not just a straw!
In February, we started speech therapy at Ozark Therapy Institute in Springfield Mo. Our insurance does not cover speech therapy so I figured since we were paying out of pocket I should find the best. From other parents, I heard of this place and how great they were. Sometimes the best word of mouth is from patients themselves!!
My goal for Christian was simple (well simple as in 1 goal)--teach my son how to drink from a straw. To be honest others had tried and I kinda thought it may never happen. Mostly due to the fact that Christian bites everything-including former straws:) To me it seemed like a pretty impossible task yet very important skill!!!
I called OTI, described Christian's diagnosis, mental and physical abilities and hoped that the therapist didn't think my goal was unattainable. Before the conversation was over I remembered that I forgot to tell him something about Christian. . . . "oh and he's blind" (on my side of the phone I'm thinking don't let this be a deal breaker:)) Teaching a blind/cognitively impaired child to drink from a straw could be difficult. Mr. Dan McCool didn't seem to think it was a problem. . .challenge maybe. . . but not a deal breaker!(he didn't say that).
And so we started speech therapy and the quest for Christian to drink from a straw. After about 4 weeks he was drinking from a straw!!! I just about fell out of my chair. Over the following weeks he improved more and more. There are so many technical things that go in to drinking from a straw. Since I'm not a therapist, I can't quite explain it all. But for Christian to round his lips on the straw, suck, and swallow is quite an accomplishment. It was just amazing. I probably sent our therapist way too many videos when he started seeing him make so much progress at home. I never thought I would see him drink from a straw.
So it isn't just a straw. . . it means Christian can safely drink liquids, it means we aren't spending a bunch of money on sippy cups that he bites holes in after 2 days, it means I can give him a drink without him in my lap, it means I can give him a drink with one hand and feed Bryant with the other, it mean we can give him a drink in his carseat, it mean his lips, tongue and jaw are doing different things to accomplish a task. . . .. that's why it's not just a straw.
After accomplishing this I thought . . hmm what now? Well since then we have been working on communication skills. Christian can sign for more and is close to being proficient in signing for drink. We are working on a combination of signs and vocalizing for his wants. This is simply amazing to me. It just goes to show that when you have a knowledgeable, caring, you can do it attitude speech therapist and the tools to know what to do at home . . . much can be accomplished. I hate to admit that it took Mr. Dan to help me believe that Christian was capable and has so much potential (THANK YOU). I will try to get video on here soon.
My goal for Christian was simple (well simple as in 1 goal)--teach my son how to drink from a straw. To be honest others had tried and I kinda thought it may never happen. Mostly due to the fact that Christian bites everything-including former straws:) To me it seemed like a pretty impossible task yet very important skill!!!
I called OTI, described Christian's diagnosis, mental and physical abilities and hoped that the therapist didn't think my goal was unattainable. Before the conversation was over I remembered that I forgot to tell him something about Christian. . . . "oh and he's blind" (on my side of the phone I'm thinking don't let this be a deal breaker:)) Teaching a blind/cognitively impaired child to drink from a straw could be difficult. Mr. Dan McCool didn't seem to think it was a problem. . .challenge maybe. . . but not a deal breaker!(he didn't say that).
And so we started speech therapy and the quest for Christian to drink from a straw. After about 4 weeks he was drinking from a straw!!! I just about fell out of my chair. Over the following weeks he improved more and more. There are so many technical things that go in to drinking from a straw. Since I'm not a therapist, I can't quite explain it all. But for Christian to round his lips on the straw, suck, and swallow is quite an accomplishment. It was just amazing. I probably sent our therapist way too many videos when he started seeing him make so much progress at home. I never thought I would see him drink from a straw.
So it isn't just a straw. . . it means Christian can safely drink liquids, it means we aren't spending a bunch of money on sippy cups that he bites holes in after 2 days, it means I can give him a drink without him in my lap, it means I can give him a drink with one hand and feed Bryant with the other, it mean we can give him a drink in his carseat, it mean his lips, tongue and jaw are doing different things to accomplish a task. . . .. that's why it's not just a straw.
After accomplishing this I thought . . hmm what now? Well since then we have been working on communication skills. Christian can sign for more and is close to being proficient in signing for drink. We are working on a combination of signs and vocalizing for his wants. This is simply amazing to me. It just goes to show that when you have a knowledgeable, caring, you can do it attitude speech therapist and the tools to know what to do at home . . . much can be accomplished. I hate to admit that it took Mr. Dan to help me believe that Christian was capable and has so much potential (THANK YOU). I will try to get video on here soon.
Friday, September 16, 2011
4th Annual Dodging to make a Difference!!!
THANK YOU -- to everyone who participated in anyway and donated towards our dodgeball tournament. We greatly appreciate each and every one of you who are involved in our son's life!! We had a good turnout and a new adult team won this year!! Can't wait to see everyone next November for the 5th Annual Dodging to make a Difference tournament! Christian will be heading to Sikeston in January for intense physical therapy program.
The Russell Family
The Russell Family
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