Before I attempt to get all of you updated on our happenings since about 4:30 yesterday afternoon, I think it only right to give you fair warning this post may be long!!! So, may want to grab a coffee, pack a lunch, and go to the bathroom before you proceed.
I have said before that if there is bad luck to be found, Keenan will run right into it! Now he always ends up just fine, but getting there is met with more obstacles than I could count, or even want to at this point. Thank goodness God is always watching over my sweet, little trooper, for without the assurance that God is in control, even when life is out of control, I would have no place to turn back to when I just don't understand and need reassurance. Now is another one of those times.
Kee has been on a seizure medication for 12 days and I have been watching him closely for side effects. This medication is one that can have a very serious side effect known as Stevens Johnson syndrome. Each day I have journaled the dose given and any side effects, which were none. That is, until yesterday. About 4:30 I noticed a couple of red spots on his ear and a little area of redness on his cheek. Talked to our neurologist and they were not alarmed at this point, so I tried not to be as well. Got in to St. Louis and as the evening progressed he felt feverish. The rash was also getting a little worse, but not alarming. I did talk to a nurse before bed, to try to calm the horrible pit in my stomach and the gut feeling I had about the medication. Needless to say, I did not give him his night dose (or his morning dose). No way, no how!!!!
I did manage to get some sleep, but never fell into a restful sleep. Moms will know what I mean. Oh, on top of my worries about this rash, Keenan's anxiety is high and he is not wanting the surgery at all. Who can blame him, right??? If I took my eyes off the "big picture" for even a moment, I would have pulled the plug and headed back home.
This morning when we awoke, the rash was worse. More red and on both cheeks. Also on his arms and some on his legs. However, the most concentrated area was his face. We called the hospital to make them aware of what was happening and they told us to come on in to the hospital a little early so they could evaluate and make a decision how to proceed. Keenan is quite upset and scared by now, wanting us to call off the surgery. I am hoping at this point they proceed because the odds of getting him back here without going completely nuts were not in our favor.
They evaluated and determined the rash was probably viral (but I was still not convinced). So, they decided to move forward. He did have a low-grade fever, but they felt it was related to the rash. Kee was pretty upset, so they gave him some medicine to help him relax and the medical team decided Brad could go in to the OR and stay until Kee was asleep. That made a big difference to him. Yea! We needed a small victory at this point.
After surgery they brought us back to recovery and let us know Keenan had aspirated during surgery. I guess it can happen, especially when the patient was already anxious and upset. So, now, on top of the rash, that is still concerning to me, we had the worry of fluid in his lungs with the possibility of pneumonia. No, I am not kidding!!!!! Did I mention it was not even noon yet?
So, as is so often the case, you do a lot of "hurry up and wait" at the hospital. The nurses and staff kept a close eye on his breathing much of the afternoon. He had to have one breathing treatment and has had oxygen close by his mouth off and on since surgery. The breathng improved, but one of the doctors still wanted to do a chest X-ray to have a better idea what was happenng. That sounded good to me...a definate answer about something...count me in!
The X-ray showed some grayness in a lung, so he would be given antibiotics for that issue. As far as the rash, I guess it was secondary to the lungs. We have spent the entire day in a little room in surgery recovery. At the time of my tying this portion, it was 6:55 and they were still trying to decide where to put him. It has been a long day in a very tiny room.
So, about 7:30 we finally made it onto a floor! A little to our disappointment, we ended up in a room with another patient. Oh well, there are worse things. Then we spent the next hour and a half going back through the last two days and current medications, with everyone but the janitorial staff.
FINALLY, at about 9:00 or so, two of the pediatric residents came in to do their assessment and get some history of the day from us. They listened to him breathe and said he sounded better than the X-ray they did, which can happen. So, they turned their focus a little more toward the rash. After assessing him, as best they could at this point in the day with no sleep, these two doctors did not think we were dealing with a worst case scenario of Stevens Johnson Syndrome. Now, whether the rash was viral or a reaction to the medication he was taking, they could not be certain. Her gut was a viral rash, but she wanted to start gathering some data that might be helpful, so she did a strep test and a viral test. This was a nose swab that can test for some of the most common viruses. At least I felt like something was being done to find answers, or at least eliminate some unknowns.
Due to the swab they did for staph, at 10:00 we had to move rooms. They wanted us to be in a private room just in case that test came back positive. Guess that was God "throwing us a bone" after a day that seemed to keep going and going and going...
At the time I finished this, Keenan was sleeping very peacefully. Brad was looking at pictures of Hondas, and I am doing what seems to bring me some comfort...writing. maybe a little bit of normal to end this bad day.
I was reading some scripture this afternoon as I waited and watched Kee, and I was reminded in Psalms that our God never sleeps. He doesn't even need a power nap. As I get ready to try to take in more than a power nap, there is comfort knowing that The Great Physician is watching over this WHOLE situation, the many facits of it, and has it under control. He will not turn His face from Keenan even for a minute tonight. Thank you Lord, for being faithful, even in those moments I doubt. Thank you for watching over him and keeping him safe.
I think tomorrow will look brighter. One of the residents told me this evening that the plan is to get us out of here tomorrow. She didn't really see an issue with that happening.
So, please pray that he continues to improve and has no more issues of ANY kind. Also pray that if there are answers we can know about this rash that they will be made knows through the cultures they took.
That is all. My brain, eyes, and mental capacity has been exhausted with this day.
Tammy
Tuesday, September 13, 2011
Tuesday, September 6, 2011
Update on Keenan
About 3:15 a.m, August 22nd, Keenan woke from his sleep and had a mild seizure. It lasted no longer than a minute and was indeed mild. It was scary, but Brad and I did not panic--too much. He recovered from it well and for that we are so thankful. However, it was a blow for both of us because this one occurred almost two years (to the date) as the seizures he experienced two days after Kaylee was born.
I spent the rest of that night after his seizure watching closely and trying to find ways to alter his schedule to allow him more time for physical and mental rest. (I think I found a couple for the short-term.) You see, I believe with all my heart this seizure occurred due to stress and exhaustion. He does physical therapy 3-4 times a week and has a rigorous school schedule being a BIG 1st grader (lots of walking, the demands of learning new things, and having a struggle with writing). No wonder, huh???
I spent the next three days or so watching him carefully. I also was very sad. While having a seizure is not the end of the world, it was unexpected and caught us off guard. After working through many emotions, I am thankful God allowed Keenan to have such a mild seizure and if it served as a "wake up reminder" that Keenan can't fit into the normal "box" that other kids do, then so be it.
Jump ahead a week to September 1st--the neurologist wanted to get an EEG to take a look at brain activity. So, the night before Brad and I had to keep him up until midnight and woke him up at 6:00. The EEG confirmed what we did not want to hear...abnormal, seizure-like activity.
Their recommendation was to start Keenan on a seizure medication. He could go another two years without an episode, or have one the next day. Since there is no way to know, or totally rid his world of triggers, that seemed to be the best course of action. For those of you who are not aware of his past history, Keenan had a few seizures, back-to-back, right after Kaylee was born. At that time he was put on medications to control them. Over the next 5 months we tried two medications and were unhappy with both of them. They altered our little boy in ways we did not like, so after some wise counsel and MUCH prayer, we decided to take him off the medication and see what happened. It was so nice to see our vibrant, bright-eyed little guy come back to us, and on top of that...no seizures (for almost two years anyway).
I think Brad and I are both hesitant to go the medication route, but we are trying a new medication that is known to be the "clean cognitive" drug because the side effects are typically mild. So, it was decided that try this medication and see what happens. If his body tolerates it well, that will be great!!!!! Peace of mind for his seizures and does not alter his personality or energy level in major ways would be the best news. I have prayed over that bottle of medication, that his body would not be allergic, due to a very serious side effect, and that his body would tolerate it just fine. I also pray each time he puts one in his mouth.
This medication is one that starts "low and slow" in the body. He won't be at full dosage for almost two months. Since he does not have frequent seizures, the doctor felt fine trying this medication and giving his body plenty of time to try to adjust to it. So far we have seen no changes. This is day five and he is only taking it at night right now. I am keeping a daily journal so I can keep a log for the doctor and myself. Time will tell, but I am hopeful. I have to be or I would lose my mind!!!!
Keenan's Surgery. A few posts ago I talked about the follow-up surgery Keenan would need for his heel cords and hamstrings. This is scheduled to be September 13th. Man, where did the time go???? We had a tough decision to make on this one--postpone it so he has time to adjust to school and his schedule, or push on and get this last procedure behind him. I deferred to Brad on this one because when the decision had to be made, I was mentally "spent". So, next Monday we will travel to St. Louis for his procedure on Tuesday. He should be released the following day, which would put us back home Wednesday. This surgery is very minor compared to the last one and will help the tightness he still experiences in his legs. Hopefully this will give him more freedom with his legs and allow for maximum benefit as time passes and he becomes more confident and secure.
Overall, he is doing well. His physical therapist continues to see him progress. While they are not huge in terms of what he is able to do, he is gaining more strength and endurance. A critical piece to all of this is confidence. As he tries small, new things regularly, my hope is that his confidence will increase as well.
Thank you for following this journey. It changes more often than I would like, but God is there at every turn. Even though each trial causes me to have new faith, a little different than what I needed for the previous one, God proves himself faithful. Sometimes it takes me a little longer to see His hand than other times, but as long as I am still looking for Him, I think I am in good shape and still on the right track. I will be in real trouble when I quit looking for all the ways He takes care of my family and me as we journey through this life.
Thanks for reading and please pray for his medication and the upcoming surgery. We would appreciate it more than you know.
Blessings,
Tammy
I spent the rest of that night after his seizure watching closely and trying to find ways to alter his schedule to allow him more time for physical and mental rest. (I think I found a couple for the short-term.) You see, I believe with all my heart this seizure occurred due to stress and exhaustion. He does physical therapy 3-4 times a week and has a rigorous school schedule being a BIG 1st grader (lots of walking, the demands of learning new things, and having a struggle with writing). No wonder, huh???
I spent the next three days or so watching him carefully. I also was very sad. While having a seizure is not the end of the world, it was unexpected and caught us off guard. After working through many emotions, I am thankful God allowed Keenan to have such a mild seizure and if it served as a "wake up reminder" that Keenan can't fit into the normal "box" that other kids do, then so be it.
Jump ahead a week to September 1st--the neurologist wanted to get an EEG to take a look at brain activity. So, the night before Brad and I had to keep him up until midnight and woke him up at 6:00. The EEG confirmed what we did not want to hear...abnormal, seizure-like activity.
Their recommendation was to start Keenan on a seizure medication. He could go another two years without an episode, or have one the next day. Since there is no way to know, or totally rid his world of triggers, that seemed to be the best course of action. For those of you who are not aware of his past history, Keenan had a few seizures, back-to-back, right after Kaylee was born. At that time he was put on medications to control them. Over the next 5 months we tried two medications and were unhappy with both of them. They altered our little boy in ways we did not like, so after some wise counsel and MUCH prayer, we decided to take him off the medication and see what happened. It was so nice to see our vibrant, bright-eyed little guy come back to us, and on top of that...no seizures (for almost two years anyway).
I think Brad and I are both hesitant to go the medication route, but we are trying a new medication that is known to be the "clean cognitive" drug because the side effects are typically mild. So, it was decided that try this medication and see what happens. If his body tolerates it well, that will be great!!!!! Peace of mind for his seizures and does not alter his personality or energy level in major ways would be the best news. I have prayed over that bottle of medication, that his body would not be allergic, due to a very serious side effect, and that his body would tolerate it just fine. I also pray each time he puts one in his mouth.
This medication is one that starts "low and slow" in the body. He won't be at full dosage for almost two months. Since he does not have frequent seizures, the doctor felt fine trying this medication and giving his body plenty of time to try to adjust to it. So far we have seen no changes. This is day five and he is only taking it at night right now. I am keeping a daily journal so I can keep a log for the doctor and myself. Time will tell, but I am hopeful. I have to be or I would lose my mind!!!!
Keenan's Surgery. A few posts ago I talked about the follow-up surgery Keenan would need for his heel cords and hamstrings. This is scheduled to be September 13th. Man, where did the time go???? We had a tough decision to make on this one--postpone it so he has time to adjust to school and his schedule, or push on and get this last procedure behind him. I deferred to Brad on this one because when the decision had to be made, I was mentally "spent". So, next Monday we will travel to St. Louis for his procedure on Tuesday. He should be released the following day, which would put us back home Wednesday. This surgery is very minor compared to the last one and will help the tightness he still experiences in his legs. Hopefully this will give him more freedom with his legs and allow for maximum benefit as time passes and he becomes more confident and secure.
Overall, he is doing well. His physical therapist continues to see him progress. While they are not huge in terms of what he is able to do, he is gaining more strength and endurance. A critical piece to all of this is confidence. As he tries small, new things regularly, my hope is that his confidence will increase as well.
Thank you for following this journey. It changes more often than I would like, but God is there at every turn. Even though each trial causes me to have new faith, a little different than what I needed for the previous one, God proves himself faithful. Sometimes it takes me a little longer to see His hand than other times, but as long as I am still looking for Him, I think I am in good shape and still on the right track. I will be in real trouble when I quit looking for all the ways He takes care of my family and me as we journey through this life.
Thanks for reading and please pray for his medication and the upcoming surgery. We would appreciate it more than you know.
Blessings,
Tammy
Wednesday, August 24, 2011
Through Keenan's Eyes
Monday I went to school just not feeling quite right. Since the school year has begun and Keenan is now a first grader and in a brand new, HUGE, beautiful building, there is much less time for the stretching and strengthening regimand he is to do on a daily basis. Added to that is the feeling I have about his progress. I know he will have times of "plataeu" throughout rehabilitation, and he seems to be in one now. But perhaps what has me the most bummed or discouraged is that an internal drive to progress has not yet developed within him. Anyone who knows Keenan's story can vouch for his STRONG will. It is evident in him today, but has not transferred to his own desire to grow and do things that may be a little out of his reach. He is only 7 and with more maturity I pray this will come, but it would be nice to see a glimpse of his desire to want "more" for himself.
So, with all of that background, I had a heavy heart and shared it with a friend I trust. Through our conversation I was able to step back from the center of it all and try, to the best of my ability, to see things from his perspective. I don't do that enough, so it was certainly time to take a peek. Many days he is being pushed to try to do something he has never done physically. Granted, most of them are not big, huge, scary things, but there are days he is presented with a new task to do that probably is scary to him. As you will see in the video, he is starting to try to transition from one area to the next, forcing him to move his hands from one surface to another. Letting go of something sturdy, being without it for a few seconds, until he can get back to another firm surface that he knows is safe. Looking at that through his eyes, thanks to my dear friend who gave me a great analogy, would be about the same as an adult being told to jump into the deep end of the pool knowing only how to dog paddle. Not a lot of security there.
I strive to find the balance in how best to wear all of the hats I need to on a daily basis with him. If I don't stretch and strengthen him, push him to try new things he has never done, Keenan won't do it on his own. He won't reach the maximum potential this procedure was meant to provide. The last thing I want is to fail him in this way. I need more determination while at the same time being in touch with his needs and knowing when to push and when to back off and give him time to just be a kid. I can't stay put in "tunnel vision" mode. There must be room for allowances and I need to let go of my own internal pressure to get every little thing done enough to be at peace with believing I did the best I could where he was concerned...one day at a time.
He has come so far and is doing things he has never done. I have had people ask if he is progressing as he should be at this stage of the recovery. I guess I don't really know, but as long as he does continue to make progress, that is the important thing.
I know he is tired from all the walking he has to do at school, physical therapy four times a week, and what I manage to get done with his rehab at home. Most days his attitude is great and he endures. That is saying something for sure about this seven year old who has already endured soooo much.
I am proud of him and will continue to search for that inner balance and peace, remembering that I need to stop more frequently to take a look at things from his perspective. It will make me a better mom and more caring "therapist" I think.
So, here is a recent video. It is not as long as I would have liked to share, but it gives you a glimpse of what he is doing right now at PT. I will try to get more soon.
Friday, July 29, 2011
Awesome Day of Therapy
Keenan had a stellar day at PT on Thursday. His therapist had music playing when he arrived, had brought a special guitar from home and was ready for Keenan to be a "rock star". Let me tell you, he was!!!!! He looked so strong and in control. It was awesome.
He even stood for 2 seconds without any help!!!! I did not get that part on video, but it was sweet to see, indeed. Here is some video of Keenan walking in the parallel bars. Sarah was encouraging him to take steps without holding on to them, and he did a nice job. Way to go Kee!!!!
Tuesday, July 26, 2011
Some Pictures and Video
Keenan enjoyed playing the games at Bible School. I think that was his favorite part, next to the music of course. This video shows a game of freeze tag.
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| Playing a little soccer at PT. Nice form buddy!!! |
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| Nothing better than swimming and finishing it with ice cream. I think he liked it. |
Steady Progress
Life in our house has been busy, but good. Keenan, sometimes Kaylee, and I head to Wesley five days a week for therapy and almost daily his therapist is pleased with a new thing he is able to do, or that he seems a bit stronger. What a praise!!!!!
Two weeks ago I really "turned up the heat" for Keenan. We had Bible School five evenings that week and I told Keenan he would not be able to use the stroller we were given after surgery to help him get from place to place. He would be walking. I did not meet with as much resistance as I originally thought and he had a GREAT time with his friends. He was tired each night, but I was so proud of how he progressed and gained more stamina each night. The week was a boost for me as well because Keenan had not seen too many people to that point and I had several comments about how different his steps looked. WOW!!!!! What encouragement those comments truly were.
Keenan is having a blast in the pool several times a week. He walks around and is building strength and does not even realize it. He has not had swimming lessons yet, but is doing things in the pool now that makes me feel confident that he is ready to learn. :-) Yea.
His new braces seem to be doing well for him. Every now and then he complains of some rubbing on his ankle, but this transition went more smoothly than I thought. His legs have had braces for so many years that muscle groups have not had the chance to work and become strong, but after a few days with his new ones, he looked strong and unaffected by the change.
I would say at this point he is back to his pre-op state. His confidence with the walker is 90%. His balance (especially when sitting) is beyond what he could do before surgery, as is his ability to freely move his legs separately. His stamina is not back yet, and that is a significant concern, with three weeks until he hits the 1st grade. The other place I have concern for him with his return to school is with some personal care issues. While I said his balance is strong while sitting, he still has some work to do to be able to get his pants up and down in the restroom. We are going to make that a major area of focus the next couple of weeks and see if we can get him a bit farther in that area.
Previous summers have tended to drag for me. I so love being a teacher that I almost feel a void when I am not fulfilling that part of my life. So, needless to say, I had some real anxiety at the beginning of this summer!!! The daily therapy sessions and strengthening and stretching at home, chasing a busy toddler and keeping up with the duties of the house seemed overwhelming and I was afraid the summer would drag!!! Well, that DID NOT happen!!! Now that my return to school is two weeks away, my anxiety increases almost daily. There are so many details to work through and keeping all the "balls in the air" looks like a huge task. I am trying to turn that worry and concern over to God and take it one day at a time. He already has every detail running through my mind, and even those that have yet to make it into my mind, under control. Thank goodness for that.
Therefore, prayers for the transition into fall would be appreciated. I need patience and peace as I work to get all the necessary details covered. We will be able to reduce his therapy sessions to 4 days a week when school begins, but working out that schedule with Keenan's school schedule and my school schedule will be tricky. Also pray for Keenan's stamina. I am sure he will we exhausted as he tries to balance all that will be on his plate.
I am so excited and thankful for the way God has worked in his body this summer. He truly does have a new set of legs and opportunities in his future Brad and I never thought possible. Keenan's spirit has not wavered through all of this. He has his days where he does not want to go through the regiment of stretches and strengthening exercises, but for the most part, he has been a real trooper.
That is all for now, and I will try to have some video or pictures next time. My iPhone and my computer don't always agree, so I am going to use another video camera and get some video of him walking soon....I hope. :-)
Blessings,
Tammy
Two weeks ago I really "turned up the heat" for Keenan. We had Bible School five evenings that week and I told Keenan he would not be able to use the stroller we were given after surgery to help him get from place to place. He would be walking. I did not meet with as much resistance as I originally thought and he had a GREAT time with his friends. He was tired each night, but I was so proud of how he progressed and gained more stamina each night. The week was a boost for me as well because Keenan had not seen too many people to that point and I had several comments about how different his steps looked. WOW!!!!! What encouragement those comments truly were.
Keenan is having a blast in the pool several times a week. He walks around and is building strength and does not even realize it. He has not had swimming lessons yet, but is doing things in the pool now that makes me feel confident that he is ready to learn. :-) Yea.
His new braces seem to be doing well for him. Every now and then he complains of some rubbing on his ankle, but this transition went more smoothly than I thought. His legs have had braces for so many years that muscle groups have not had the chance to work and become strong, but after a few days with his new ones, he looked strong and unaffected by the change.
I would say at this point he is back to his pre-op state. His confidence with the walker is 90%. His balance (especially when sitting) is beyond what he could do before surgery, as is his ability to freely move his legs separately. His stamina is not back yet, and that is a significant concern, with three weeks until he hits the 1st grade. The other place I have concern for him with his return to school is with some personal care issues. While I said his balance is strong while sitting, he still has some work to do to be able to get his pants up and down in the restroom. We are going to make that a major area of focus the next couple of weeks and see if we can get him a bit farther in that area.
Previous summers have tended to drag for me. I so love being a teacher that I almost feel a void when I am not fulfilling that part of my life. So, needless to say, I had some real anxiety at the beginning of this summer!!! The daily therapy sessions and strengthening and stretching at home, chasing a busy toddler and keeping up with the duties of the house seemed overwhelming and I was afraid the summer would drag!!! Well, that DID NOT happen!!! Now that my return to school is two weeks away, my anxiety increases almost daily. There are so many details to work through and keeping all the "balls in the air" looks like a huge task. I am trying to turn that worry and concern over to God and take it one day at a time. He already has every detail running through my mind, and even those that have yet to make it into my mind, under control. Thank goodness for that.
Therefore, prayers for the transition into fall would be appreciated. I need patience and peace as I work to get all the necessary details covered. We will be able to reduce his therapy sessions to 4 days a week when school begins, but working out that schedule with Keenan's school schedule and my school schedule will be tricky. Also pray for Keenan's stamina. I am sure he will we exhausted as he tries to balance all that will be on his plate.
I am so excited and thankful for the way God has worked in his body this summer. He truly does have a new set of legs and opportunities in his future Brad and I never thought possible. Keenan's spirit has not wavered through all of this. He has his days where he does not want to go through the regiment of stretches and strengthening exercises, but for the most part, he has been a real trooper.
That is all for now, and I will try to have some video or pictures next time. My iPhone and my computer don't always agree, so I am going to use another video camera and get some video of him walking soon....I hope. :-)
Blessings,
Tammy
Saturday, July 2, 2011
No News Really Does Mean Good News
I am so sorry it has been a long spell with no updates. I have been so busy every day, and by the time I have a few, quiet minutes for some thought, it is 9:30 and I am tired. But, rest assured, the lapse in communication means things are going well.
The back has FINALLY healed. It took some time, but the incision looks good. Keenan was released to get in the pool on Thursday and wasted no time getting in the water. He had Brad and my dad in our community pool that evening. It was so nice to watch him do something fun. He had a good time. (Kaylee, on the other hand, was another story.)
His physical therapy sessions are going well. Almost daily we get to see him do something he could not do the day before, or see his strength and stamina for walking increase a bit. That is so exciting and the reward we all need to keep us on the path to full recovery on those days we don't feel like staying the course. Keenan, for the most part has a good attitude about the therapy. He does try to get Sarah off task a bit, but he is a little boy, after all.
The daily stretching and strengthening we do at home poses more of a battle of wills. He and I do not see eye to eye on doing those some days. I don't blame him one bit for getting tired of it. It is hard enough as an adult to maintain what he know is best for our bodies, (at least I do) let alone a 7 year old little boy. Over the years I have noticed that I have become more "tough" as a person. Life experiences, first born nature, or just personality, who knows. But, I think I know the reason for a "tougher skin". It is so I can go to battle with this STRONG willed little boy when necessary. There are days I don't want to fight with him to go through the whole routine, but it is vital right now, so stern mom enters the scene and almost always we work as a team to get it done.
Keenan is back in his walker (for the most part). He is using it around the house to get from place to place and I also have him do at least one "longer" walk daily. At first we had to hold on to his arms as he walked because his legs could give out at any moment, but we are less fearful of that happening now. He has much better control of his legs and they are definitely stronger.
He had a milestone moment on Friday. Keenan got a new pair of braces that go right above his ankles. This was a BIG step toward becoming more independent. The reason for the new braces is so Keenan's calf muscles can have the opportunity to really work and become strong. With the taller braces, they don't really get to work and without strong calf muscles, he won't be able to walk independently. We are so excited about this step and hope it is a sign of more great things yet to come.
So now what??? Well, we will travel back to St. Louis in September for one more procedure. This one is MUCH less evasive and will require just one night in the hospital. Kee still has some stiffness in his hamstrings and heels. An orthopedic doctor there has refined the procedure of lengthening these muscles. The more traditional method requires kids to be in casts for a period of time, and the risk of over lengthening is more prevalent. If Keenan were put into casts, it would slow his overall progress, losing some of the ground that would have been gained. This procedure will be September 13th. He knows about it and does not seem worried in the least bit right now.
Long term outlook???? I have had a few people ask. Here is what we know, or have been told at this point. Dr. Park said the surgery was a success and any one who has felt his legs before and after the surgery would have to agree. They are not the same!!!!! We don't really know how long it will take until he has reached the optimum point in his recovery. I would think it may take a year, since he is having the other surgery, but perhaps by that point we will have a better idea. He will certainly continue to get stronger and gain confidence and strength for years to come, but I think a year from now will shed a great deal of light on what the future my look like for Kee. I know one thing for sure, it is going to be a future neither Brad or I EVER thought possible for our miracle son. HOW EXCITING!!!! To God be the glory.
I know there will be more, but one thing I have learned from this experience thus far is not to live in fear. There was, for a time, fear about moving forward with this procedure. Looking back now I can see that fear could have kept me from opening a new door for Keenan. How often do we live in fear and allow that lack of trust to overcome what God has told us to do? (I hate to think how many times I have blown it.) But, for those times I did choose to trust, He is bigger than anything our minds can conjure up to believe--and my mind has come up with some pretty big scenarios to fear. He has always been faithful and taken care of me. Even though every outcome was not what I would have chosen, I am still thankful I chose Him and not the fear. There were blessings I could not have imagined on the other side every time.
Well, enough on this one. Guess that is what happens when I wait a month to post. I will post some pictures of his new braces after the weekend of fun.
Blessings to all,
Tammy
The back has FINALLY healed. It took some time, but the incision looks good. Keenan was released to get in the pool on Thursday and wasted no time getting in the water. He had Brad and my dad in our community pool that evening. It was so nice to watch him do something fun. He had a good time. (Kaylee, on the other hand, was another story.)
His physical therapy sessions are going well. Almost daily we get to see him do something he could not do the day before, or see his strength and stamina for walking increase a bit. That is so exciting and the reward we all need to keep us on the path to full recovery on those days we don't feel like staying the course. Keenan, for the most part has a good attitude about the therapy. He does try to get Sarah off task a bit, but he is a little boy, after all.
The daily stretching and strengthening we do at home poses more of a battle of wills. He and I do not see eye to eye on doing those some days. I don't blame him one bit for getting tired of it. It is hard enough as an adult to maintain what he know is best for our bodies, (at least I do) let alone a 7 year old little boy. Over the years I have noticed that I have become more "tough" as a person. Life experiences, first born nature, or just personality, who knows. But, I think I know the reason for a "tougher skin". It is so I can go to battle with this STRONG willed little boy when necessary. There are days I don't want to fight with him to go through the whole routine, but it is vital right now, so stern mom enters the scene and almost always we work as a team to get it done.
Keenan is back in his walker (for the most part). He is using it around the house to get from place to place and I also have him do at least one "longer" walk daily. At first we had to hold on to his arms as he walked because his legs could give out at any moment, but we are less fearful of that happening now. He has much better control of his legs and they are definitely stronger.
He had a milestone moment on Friday. Keenan got a new pair of braces that go right above his ankles. This was a BIG step toward becoming more independent. The reason for the new braces is so Keenan's calf muscles can have the opportunity to really work and become strong. With the taller braces, they don't really get to work and without strong calf muscles, he won't be able to walk independently. We are so excited about this step and hope it is a sign of more great things yet to come.
So now what??? Well, we will travel back to St. Louis in September for one more procedure. This one is MUCH less evasive and will require just one night in the hospital. Kee still has some stiffness in his hamstrings and heels. An orthopedic doctor there has refined the procedure of lengthening these muscles. The more traditional method requires kids to be in casts for a period of time, and the risk of over lengthening is more prevalent. If Keenan were put into casts, it would slow his overall progress, losing some of the ground that would have been gained. This procedure will be September 13th. He knows about it and does not seem worried in the least bit right now.
Long term outlook???? I have had a few people ask. Here is what we know, or have been told at this point. Dr. Park said the surgery was a success and any one who has felt his legs before and after the surgery would have to agree. They are not the same!!!!! We don't really know how long it will take until he has reached the optimum point in his recovery. I would think it may take a year, since he is having the other surgery, but perhaps by that point we will have a better idea. He will certainly continue to get stronger and gain confidence and strength for years to come, but I think a year from now will shed a great deal of light on what the future my look like for Kee. I know one thing for sure, it is going to be a future neither Brad or I EVER thought possible for our miracle son. HOW EXCITING!!!! To God be the glory.
I know there will be more, but one thing I have learned from this experience thus far is not to live in fear. There was, for a time, fear about moving forward with this procedure. Looking back now I can see that fear could have kept me from opening a new door for Keenan. How often do we live in fear and allow that lack of trust to overcome what God has told us to do? (I hate to think how many times I have blown it.) But, for those times I did choose to trust, He is bigger than anything our minds can conjure up to believe--and my mind has come up with some pretty big scenarios to fear. He has always been faithful and taken care of me. Even though every outcome was not what I would have chosen, I am still thankful I chose Him and not the fear. There were blessings I could not have imagined on the other side every time.
Well, enough on this one. Guess that is what happens when I wait a month to post. I will post some pictures of his new braces after the weekend of fun.
Blessings to all,
Tammy
Wednesday, June 8, 2011
A Test of Faith/ A Battle for My Will
There have been so many things happen since Sunday night that to recount it all seems a daunting task.
Sunday. The day began with church. Keenan was so excited to get back to what he loves to do: play air guitar during the praise and worship portion of the service. He sat in the pew so well!!! He looked strong and balanced. We spent the rest of the day around the house, but by evening Keenan was not wanting to do anything but lay in the bed. After a bit of investigating the reason for the lack of energy and interest in doing anything, we noticed the incision site was pretty swollen and he had a slight fever. Not good. After a couple of phone calls, we did what we dread most...went to the ER.
I just could not believe this was happening to Keenan. Unreal!!!! As he lay on the bed in the ER, awating another doctor to take a look, the hated IV start, and the plan of action, tears began to flow from my eyes and they would not stop. The week at St. Louis and the unknown about this episode was just too much for this mom. I was releasing my stress and fear quietly down my cheeks.
We knew the area was infected, but did not know the extent. A sonogram was done and determined there was no abcess in the area; which was the news we hoped to receive. That would have meant the infection was deeper in the skin and would have required the area to be drained. So, Keenan was started on two high-powered antibiotics and sent to his "home away from home", the pediatric floor. The rest of that night was filled with more questions about his history, getting ourselves settled, hanging more medications, and laying our heads on the pillow about 2:00 a.m.
Monday: Well, I did not get any sleep Sunday night. When I sat up in the bed for the last time early Monday morning, the tears were flowing again. Knowing everything Keenan had been through, and learning more than I ever intended about the medical field, my mind kept wandering back to the fear of him getting another infection in his shunt. I needed some assurance that the possibility of that happening again did not exist. The doctors were able to give me reassurance, so I decided to take a deep breath and remember that God is in control and that none of this took Him by surprise. It is hard sometimes, to step back from crisis and go back to what I know to be truth, but if I don't, the battle for my mind and my will would be lost. I can't let that happen!!!!! That is why God has surrounded me with such a great support group, to remind me every single thing that happens in our lives is sifted through His hands, used to make us stronger in our relationship with Him, and ultimately to bring Him honor and glory.
By the time he awoke Monday morning, the incision area had already started the healing process. It was less swollen and not as red. A great gift from God to spur me on and keep me going. Keenan had a good day and even enjoyed some time with some of his favorite people on the planet; the Child Life Team at Wesley. They were the BEST medicine for my son and he loved the time he spent with Ben. It was very special for Kee.
As the day progressed, Keenan put out a great deal of sweat and the fever seemed to be gone. More signs of progress.
Tuesday. The incision looked even better. Almost all the swelling, the rash that had set up camp on his back, and the redness were gone. Yea. A great way to start the day. A promising sign of things to come, right?
Around noon we were given the okay to be dismissed from the hospital if he did well with the first dose of oral antibiotic. Great news, but I was still holding my breath and hoping all was fine. Keenan did some physical therapy, had a lunch date with a buddy, and had an interesting cooking session with Ben and some of the other members of the Wesl;ey Child Life staff. Keenan had a GREAT time. It was awesome to see him having fun.
About 4:00, we left the hospital. Keenan seemed to be doing well and I was glad to be out of there, but still scared. He was sent home with oral antibiotics and well wishes. A couple hours after our homecoming, Keenan had a fever and was complaining of a headache. He may have had the fever the entire time because the hospital had switched him to Motrin to help with his back pain in preparation for his dismissal. Well, needless to say, I became quite worried. The incision site looked fine, but I was worried, so made a couple phone calls to the doctor. They advised me to keep the Motrin going and if the fever got above 102, or the headache became more intense, he would have to go back to the hospital. I have to say, at that moment, I felt defeated. There was no way out of this mess for my son and the thought of taking him to the hospital for another IV stick was more than my emotions could take. I did not understand why God was allowing this to happen to a sweet little boy who had endured soooo very much already. It broke my heart. I went to the front porch, cired out to God in prayer, pleading that He take the fever and infection from Keenan, and called my mentor (who is also a nurse) to pray with me and set my thinking in the right direction before going to bed for the night.
So, Keenan did very well overnight and the fever came down and has stayed down as of this post. There has been no other mention of a headache and he even went to physical therapy today. What a difference a day makes!!!! Yesterday I just did not feel quite right about Keenan for some reason, but today I feel more at rest and peaceful with the situation. I saw God's hand work in Keenan, I believe, throughout the night. In fact, after my time outside with God, I went to check on Keenan and his head was not as hot, and has not returned to that 102 temp since!!!! Some would say coincidence, but I say that was a direct and immediate answer to my prayer. WOW!!!
One last thing I have to share becasue it affirms the need for ongoing faith and prayer in my life. I have a devotional, Streams in the Desert, and this comes directly from the passage for today.
"Everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith." (1 John 5:4)
"If a person allows it, he can find something at every turn of the road that will rob him of his victory and his peace of mind. Satan is far from retiring from his work of attempting to deceive and destroy God's children. At each milestone in your life, it is wise to check the temperature of your experience in order to be keenly aware of the surrounding conditions. If you will do this and firmly exhibit your faith at the precise moment, you can sometimes actually snatch victory from the very jaws of defeat. Faith can change any situation, no matter how dark or difficult. Lifting your heart to God in a moment of genuine faith in Him can quickly alter your circumstances. God is still on His throne, and He can turn defeat into victory in a split second, if only we will trust Him."
If I have figured out anything the past few years of being refined in the fire, it is that I always need new faith for the next trial, but have to remember the faith I used in the past to trust that God will be faithful every time. Without those milestones and victories with Him, it would be nearly impossible to keep going and not lose hope (or my sanity). I also know prayer is real and active. I truly believe that is what happened with Keenan last night. God heard the cry of a mom on her knees and was merciful, out of His great love for his own children.
So, here is to every single person who is on their knees praying for us daily. Oh how precious and powerful your actions and faithfulness. And here is to God, our healer and perfecter of my faith. May He receive all glory, honor, and praise for what is happening in Keenan's life.
Love to all, and sorry so long,
Tammy
Sunday. The day began with church. Keenan was so excited to get back to what he loves to do: play air guitar during the praise and worship portion of the service. He sat in the pew so well!!! He looked strong and balanced. We spent the rest of the day around the house, but by evening Keenan was not wanting to do anything but lay in the bed. After a bit of investigating the reason for the lack of energy and interest in doing anything, we noticed the incision site was pretty swollen and he had a slight fever. Not good. After a couple of phone calls, we did what we dread most...went to the ER.
I just could not believe this was happening to Keenan. Unreal!!!! As he lay on the bed in the ER, awating another doctor to take a look, the hated IV start, and the plan of action, tears began to flow from my eyes and they would not stop. The week at St. Louis and the unknown about this episode was just too much for this mom. I was releasing my stress and fear quietly down my cheeks.
We knew the area was infected, but did not know the extent. A sonogram was done and determined there was no abcess in the area; which was the news we hoped to receive. That would have meant the infection was deeper in the skin and would have required the area to be drained. So, Keenan was started on two high-powered antibiotics and sent to his "home away from home", the pediatric floor. The rest of that night was filled with more questions about his history, getting ourselves settled, hanging more medications, and laying our heads on the pillow about 2:00 a.m.
Monday: Well, I did not get any sleep Sunday night. When I sat up in the bed for the last time early Monday morning, the tears were flowing again. Knowing everything Keenan had been through, and learning more than I ever intended about the medical field, my mind kept wandering back to the fear of him getting another infection in his shunt. I needed some assurance that the possibility of that happening again did not exist. The doctors were able to give me reassurance, so I decided to take a deep breath and remember that God is in control and that none of this took Him by surprise. It is hard sometimes, to step back from crisis and go back to what I know to be truth, but if I don't, the battle for my mind and my will would be lost. I can't let that happen!!!!! That is why God has surrounded me with such a great support group, to remind me every single thing that happens in our lives is sifted through His hands, used to make us stronger in our relationship with Him, and ultimately to bring Him honor and glory.
By the time he awoke Monday morning, the incision area had already started the healing process. It was less swollen and not as red. A great gift from God to spur me on and keep me going. Keenan had a good day and even enjoyed some time with some of his favorite people on the planet; the Child Life Team at Wesley. They were the BEST medicine for my son and he loved the time he spent with Ben. It was very special for Kee.
As the day progressed, Keenan put out a great deal of sweat and the fever seemed to be gone. More signs of progress.
Tuesday. The incision looked even better. Almost all the swelling, the rash that had set up camp on his back, and the redness were gone. Yea. A great way to start the day. A promising sign of things to come, right?
Around noon we were given the okay to be dismissed from the hospital if he did well with the first dose of oral antibiotic. Great news, but I was still holding my breath and hoping all was fine. Keenan did some physical therapy, had a lunch date with a buddy, and had an interesting cooking session with Ben and some of the other members of the Wesl;ey Child Life staff. Keenan had a GREAT time. It was awesome to see him having fun.
About 4:00, we left the hospital. Keenan seemed to be doing well and I was glad to be out of there, but still scared. He was sent home with oral antibiotics and well wishes. A couple hours after our homecoming, Keenan had a fever and was complaining of a headache. He may have had the fever the entire time because the hospital had switched him to Motrin to help with his back pain in preparation for his dismissal. Well, needless to say, I became quite worried. The incision site looked fine, but I was worried, so made a couple phone calls to the doctor. They advised me to keep the Motrin going and if the fever got above 102, or the headache became more intense, he would have to go back to the hospital. I have to say, at that moment, I felt defeated. There was no way out of this mess for my son and the thought of taking him to the hospital for another IV stick was more than my emotions could take. I did not understand why God was allowing this to happen to a sweet little boy who had endured soooo very much already. It broke my heart. I went to the front porch, cired out to God in prayer, pleading that He take the fever and infection from Keenan, and called my mentor (who is also a nurse) to pray with me and set my thinking in the right direction before going to bed for the night.
So, Keenan did very well overnight and the fever came down and has stayed down as of this post. There has been no other mention of a headache and he even went to physical therapy today. What a difference a day makes!!!! Yesterday I just did not feel quite right about Keenan for some reason, but today I feel more at rest and peaceful with the situation. I saw God's hand work in Keenan, I believe, throughout the night. In fact, after my time outside with God, I went to check on Keenan and his head was not as hot, and has not returned to that 102 temp since!!!! Some would say coincidence, but I say that was a direct and immediate answer to my prayer. WOW!!!
One last thing I have to share becasue it affirms the need for ongoing faith and prayer in my life. I have a devotional, Streams in the Desert, and this comes directly from the passage for today.
"Everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith." (1 John 5:4)
"If a person allows it, he can find something at every turn of the road that will rob him of his victory and his peace of mind. Satan is far from retiring from his work of attempting to deceive and destroy God's children. At each milestone in your life, it is wise to check the temperature of your experience in order to be keenly aware of the surrounding conditions. If you will do this and firmly exhibit your faith at the precise moment, you can sometimes actually snatch victory from the very jaws of defeat. Faith can change any situation, no matter how dark or difficult. Lifting your heart to God in a moment of genuine faith in Him can quickly alter your circumstances. God is still on His throne, and He can turn defeat into victory in a split second, if only we will trust Him."
If I have figured out anything the past few years of being refined in the fire, it is that I always need new faith for the next trial, but have to remember the faith I used in the past to trust that God will be faithful every time. Without those milestones and victories with Him, it would be nearly impossible to keep going and not lose hope (or my sanity). I also know prayer is real and active. I truly believe that is what happened with Keenan last night. God heard the cry of a mom on her knees and was merciful, out of His great love for his own children.
So, here is to every single person who is on their knees praying for us daily. Oh how precious and powerful your actions and faithfulness. And here is to God, our healer and perfecter of my faith. May He receive all glory, honor, and praise for what is happening in Keenan's life.
Love to all, and sorry so long,
Tammy
Sunday, June 5, 2011
Pictures
I finally had some time to download pictures from the camera, so this post is sharing some of his journey through pictures.
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| Saturday Keenan could not take it any longer. He had to get back to playing the guitar and singing his praise and worship music. Now, he usually stands in front of the fireplace, but he is not ready for that yet, so sitting on it was a close second. It was great to see how "strong" he looked while sitting there and playing the guitar. To me, his balance seems better and his feet were flat on the floor! That is a change from before the surgery. |
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| We typically eat at the bar in our kitchen, but since Keenan's feet are not allowed to dangle right now, we have resorted to more creative ways to dine. The two of them enjoyed lunch in the hearth room. |
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| The next two pictures were taken Saturday before we left the hospital. The hospital has a garden area on top of a section of its roof. It was very pretty and a great place to "get away" from life in the hospital. |
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| This was taken during Keenan's second day of laying flat after surgery. He was a trooper indeed. It was hard for him to lay flat for two days, but he made the best of it. |
That is all for now,
Tammy
Friday, June 3, 2011
Praise and Thoughts
Thought I would add a few pictures to the blog...finally.
Once Keenan was able to sit up in bed, he had all the comforts of home (or perhaps even a bit better if you were to ask him). Nothing like having some nachos, a TV, and a Wii all within the length of your arm. :-)
One of the first things Kee wanted to do when we returned was to hang out with family. So, on Memorial Day we had Brad's family over for dinner. Here are the three Cox kiddos hanging out together on the floor.
Well, good news about the incision. The doctor removed the dressing a day early, and it was a good thing. Keenan's skin must have reacted to the tape they used to cover the incision. The area is still red, pimply, and looks a bit "raw", but the actual incision itself looks good. So, thank you for praying over that situation. We are keeping an eye on it, but I am far less worried than I was. Yet another test of faith and opportunity to praise God from whom all blessings flow.
It has been a week since Keenan was able to get out of bed and I thought it might be fun to share some of the things he can do now that were not possible a week ago. When we got him in the wheelchair the first time last Friday, he literally could not even hold up his head!!!! He had no strength at all. Now...
*He can roll over and experience little to no back pain
*He can crawl around on the floor
*He can move his feet in ways he has NEVER been able to move them
*His legs can move independently, which has not ever happened
*He can sit up straight and have his feet flat on the floor-another first for him
*He is starting to build more strength to get him ready to get back into the walker
*He has been cast for new braces that will come just above the ankles!!!! I think he is going to be very excited when we put those on his feet the first time
So, what a difference a week makes. I had no idea just how awesome this surgery would be, and still don't comprehend it entirely, but being able to catch a glimpse this week makes me so excited about the kind of life that will become reality for Keenan just over the mountain. WOW!!!!!!
I am so thankful God has gifted His creation to do things that give kids (and their families) the kind of life they never dreamed would be possible.
So what now????
Well, he has started his daily PT with Sarah. They are a good team. She has the an excellent relationship with him. She understands Keenan's need to be a little boy, along with helping him get stronger through physical therapy. It is going to be so fun to watch what the two of them can do.
Well, he has started his daily PT with Sarah. They are a good team. She has the an excellent relationship with him. She understands Keenan's need to be a little boy, along with helping him get stronger through physical therapy. It is going to be so fun to watch what the two of them can do.
Keenan will also have one more procedure. This one will loosen, if you will, his heel cords and hamstrings. This is not a new procedure, but the doctor in St. Louis has refined it to make it much less evasive and with little to no risk of lengthening the tendons too much. So, that is set for Sept. 13th and will require one night in the hospital. Once that procedure is complete and he has had the appropriate amount of therapy, there is a real possibility he will no longer needs bracing of any kind. And, our ultimate goal, of course, if for him to be able to walk unassisted at times.
Great things are happening daily and even greater things are yet to come!!!!!!! It is not easy, but knowing there is a great reward in store on a day only God knows, gives me strength and excitement to keep pushing and doing what I truly believe is best for that special little guy.
All for now....I am exhausted. :-)
Tammy
Wednesday, June 1, 2011
Need Prayer for Healing of Incision
Keenan's incision has not been uncovered yet, but we are having drainage from it. Had my friend look at it who is a nurse, and followed-up with a doctor today. So far, they think the drainage is okay, but we are watching it closely. The tape is starting to roll, which could allow for bacteria to enter the area. We are not supposed to take off the dressing until Friday, which seems like an eternity at this point.
Tomorrow the doctor wants to look at the site again, to see if there have been any changes and will decide what to do, if anything, at that point. I am trying sooooo hard not to worry, but as the tape has rolled a bit this afternoon, it looks like a small area of skin was irritated by that tape and lifted, leaving that spot looking "raw", for lack of better explanation.
Man, it just seems like I can't ever get to the point with Keenan where I feel like I can exhale. He is doing so very well from the surgery and making progress in getting stronger each day. That is exciting, but feel like my full enjoyment of it is stifled by my fear that he could have another possible hurdle to jump if that area becomes infected. I am just not going to allow myself to "go there". I have no reason to worry, but only to be cautious and watchful. God does not want us to live in fear and in a couple of days I want to be able to say I trusted and was not consumed by that very thing being put in my path to make me stumble.
So, prayers the next couple of days for that site are needed. Also, if you could, pray that I put my faith where my mouth is and truly trust that God is over this entire situation. I know He is in my head and believe it to be so in my heart, but the waiting is where we are put to the test and get refined. Boy, isn't that the case!!!! There must be no other way to grow in faith, huh, because I am pretty sure I would have run into it by now. :-)
That is all the time I have for now.
Thank you for lifiting this situation in prayer. I don't know what I would do without friends and loved ones to stand in the gap and pray with me.
Tammy
Tomorrow the doctor wants to look at the site again, to see if there have been any changes and will decide what to do, if anything, at that point. I am trying sooooo hard not to worry, but as the tape has rolled a bit this afternoon, it looks like a small area of skin was irritated by that tape and lifted, leaving that spot looking "raw", for lack of better explanation.
Man, it just seems like I can't ever get to the point with Keenan where I feel like I can exhale. He is doing so very well from the surgery and making progress in getting stronger each day. That is exciting, but feel like my full enjoyment of it is stifled by my fear that he could have another possible hurdle to jump if that area becomes infected. I am just not going to allow myself to "go there". I have no reason to worry, but only to be cautious and watchful. God does not want us to live in fear and in a couple of days I want to be able to say I trusted and was not consumed by that very thing being put in my path to make me stumble.
So, prayers the next couple of days for that site are needed. Also, if you could, pray that I put my faith where my mouth is and truly trust that God is over this entire situation. I know He is in my head and believe it to be so in my heart, but the waiting is where we are put to the test and get refined. Boy, isn't that the case!!!! There must be no other way to grow in faith, huh, because I am pretty sure I would have run into it by now. :-)
That is all the time I have for now.
Thank you for lifiting this situation in prayer. I don't know what I would do without friends and loved ones to stand in the gap and pray with me.
Tammy
Monday, May 30, 2011
We are Home
Sorry it has been a bit since I gave an update. I needed a secretary with me to do my typing. The end of the week was busy, obviously, or would have written because I have much to share.
He began physical therapy Friday. This was the first glimpse of the work that is ahead for Keenan. His muscles were so weak. The first two sessions amounted to teaching us how to move him safely, getting him in the wheelchair, and helping him sit on the edge of bed. He required a great deal of support to be held in an upright position. Holding his own head up was even a major feat of strength.
Saturday he began a multitude of attempts to help get his bowel working. He battles this issue anyway, and with all of the medications he was given, it compounded the problem for him. This became as bothersome for Keenan as his sore back I think. Then, on top of that, all of the laying he had to do, even though he was turned from side-to-side, he developed a pimply, red rash on his back from the harsh sheets that are on hospital beds. We got him some that were "ivory washed", but the damage had already been done and his back was itching him like crazy. That poor guy, just could not catch a break. (To make matters worse for his back, they would not put a steriod creme on it because it can slow incision healing.) Our only option was Eucerin creme.
Sunday finally arrived and there was a bit of worry that we would not be able to leave the hospital, due to his bowel troubles, but they gave him more "help" and sent us on our way. We had one more physical therapy session and he looked a bit stronger. He could sit on the edge of a bench and support himself. That was a good thing. We also had him attempt to walk to his wheelchair, but he was not ready for that yet. So, it was time to make the journey to the airport to begin our trip back home. We had two flights and a long day ahead of us. Kids who have this procedure are encouraged not to sit in the same position more than two hours without a break. Our first flight was an hour, but with a very short layover and a big airport, when we landed in Atlanta, we were worried we would even make the flight, let alone allow him some time to lay down for a break. Well, to our surprise, the flight to Wichita had been delayed about 1/2 hour, which gave Keenan about 15 minutes to lay down. God knew he needed a break and provided it!!!! How cool.
All three of us could not wait to get off the plane in Wichita, to see if anyone would be there to greet us. (I knew Mom and Kaylee, and probably my sister would be there.) What I witnessed when we turned that corner and headed down that ramp was one of the sweetest sight as a mommy I would ever hope to see. Mom, Kaylee, Teresa, J.M., Susan, and Chance were standing there with balloons and an awesome sign that had flashing lights! Once Kaylee noticed us, she walked up that ramp, looked at Keenan and smiled, turned around and took his hand and proceeded to walk with him down the ramp to join the rest of the family. As long as I live I will treasure that moment!!! There was such a sweet innocence and I am so lucky I was able to witness it.
Monday morning brought a potential bump in the road. The rash I mentioned earlier has been an irritation for Kee almost non-stop. For the most part, he does a great job leaving his back alone, and I had him sleep with me in hopes of catching him if he started to scratch in his sleep. Well, this morning, he had some seeping that had occured at some point during the night. It appeared to have been confined to the dressing under the tape that is covering the wound, but having had issues with leakage from wounds before, I became nervous. Following the discharge orders from the hospital, I called to report the situation and the doctor I spoke to said having a little leakage is not terribly uncommon and to keep an eye on it, but to report if the situation got worse. Great, the thing that is hardest for me to do... wait and not worry when it involves Keenan. You would think I would have cleared that hurdle by now, but it is new and fresh every time. So, I earnestly prayed that our Great Physician would heal that wound completely and that I would be cautious, but not consumed with worry. My desire is truly to lay it as God's feet, trust, and move forward, but that is just sooo very hard to do as a parent, isn't it????
I know this one is long, but I have saved the best for last. Keenan made some awesome strides today!!! This morning he asked to be put on the floor so he could be down with Kaylee. We helped him get down and then he got up onto all fours. This was a big step for him in just a day. But wait, there is more!!! We had Brad's family over for dinner and at one point, Keenan and my nephew Chance had been building with Legos in my bedroom. Chance reported that they were done and Keenan wanted to come back and join the rest of the family in the hearth room. I went to get him, so he could be carried, and he proceeded to let me know he wanted onto the floor so he could crawl. I was a bit nervous, but remembered that he could move about as he felt comfortable. So, I helped him to the floor and he crawled from my room to the hearth room. That was quite a little bit for his first journey. It was awesome!!!!!!!!!!!!!!!!! Hard to believe it was the same kid that could not hold up his own head Friday morning. Thank you Lord for allowing all of us to end this day with such a reward. May you be praised for your faithfulness in our lives.
I need to try to post a few pictures of him, but this one has gotten quite long.
If you want to continue to pray for him, it would be in the area of his back being healed of this irritation from the bedding and that his incision site would heal safe and sound, with no more drainage.
Thanks again for your support and being a part of this incredible journey.
Love,
Tammy
He began physical therapy Friday. This was the first glimpse of the work that is ahead for Keenan. His muscles were so weak. The first two sessions amounted to teaching us how to move him safely, getting him in the wheelchair, and helping him sit on the edge of bed. He required a great deal of support to be held in an upright position. Holding his own head up was even a major feat of strength.
Saturday he began a multitude of attempts to help get his bowel working. He battles this issue anyway, and with all of the medications he was given, it compounded the problem for him. This became as bothersome for Keenan as his sore back I think. Then, on top of that, all of the laying he had to do, even though he was turned from side-to-side, he developed a pimply, red rash on his back from the harsh sheets that are on hospital beds. We got him some that were "ivory washed", but the damage had already been done and his back was itching him like crazy. That poor guy, just could not catch a break. (To make matters worse for his back, they would not put a steriod creme on it because it can slow incision healing.) Our only option was Eucerin creme.
Sunday finally arrived and there was a bit of worry that we would not be able to leave the hospital, due to his bowel troubles, but they gave him more "help" and sent us on our way. We had one more physical therapy session and he looked a bit stronger. He could sit on the edge of a bench and support himself. That was a good thing. We also had him attempt to walk to his wheelchair, but he was not ready for that yet. So, it was time to make the journey to the airport to begin our trip back home. We had two flights and a long day ahead of us. Kids who have this procedure are encouraged not to sit in the same position more than two hours without a break. Our first flight was an hour, but with a very short layover and a big airport, when we landed in Atlanta, we were worried we would even make the flight, let alone allow him some time to lay down for a break. Well, to our surprise, the flight to Wichita had been delayed about 1/2 hour, which gave Keenan about 15 minutes to lay down. God knew he needed a break and provided it!!!! How cool.
All three of us could not wait to get off the plane in Wichita, to see if anyone would be there to greet us. (I knew Mom and Kaylee, and probably my sister would be there.) What I witnessed when we turned that corner and headed down that ramp was one of the sweetest sight as a mommy I would ever hope to see. Mom, Kaylee, Teresa, J.M., Susan, and Chance were standing there with balloons and an awesome sign that had flashing lights! Once Kaylee noticed us, she walked up that ramp, looked at Keenan and smiled, turned around and took his hand and proceeded to walk with him down the ramp to join the rest of the family. As long as I live I will treasure that moment!!! There was such a sweet innocence and I am so lucky I was able to witness it.
Monday morning brought a potential bump in the road. The rash I mentioned earlier has been an irritation for Kee almost non-stop. For the most part, he does a great job leaving his back alone, and I had him sleep with me in hopes of catching him if he started to scratch in his sleep. Well, this morning, he had some seeping that had occured at some point during the night. It appeared to have been confined to the dressing under the tape that is covering the wound, but having had issues with leakage from wounds before, I became nervous. Following the discharge orders from the hospital, I called to report the situation and the doctor I spoke to said having a little leakage is not terribly uncommon and to keep an eye on it, but to report if the situation got worse. Great, the thing that is hardest for me to do... wait and not worry when it involves Keenan. You would think I would have cleared that hurdle by now, but it is new and fresh every time. So, I earnestly prayed that our Great Physician would heal that wound completely and that I would be cautious, but not consumed with worry. My desire is truly to lay it as God's feet, trust, and move forward, but that is just sooo very hard to do as a parent, isn't it????
I know this one is long, but I have saved the best for last. Keenan made some awesome strides today!!! This morning he asked to be put on the floor so he could be down with Kaylee. We helped him get down and then he got up onto all fours. This was a big step for him in just a day. But wait, there is more!!! We had Brad's family over for dinner and at one point, Keenan and my nephew Chance had been building with Legos in my bedroom. Chance reported that they were done and Keenan wanted to come back and join the rest of the family in the hearth room. I went to get him, so he could be carried, and he proceeded to let me know he wanted onto the floor so he could crawl. I was a bit nervous, but remembered that he could move about as he felt comfortable. So, I helped him to the floor and he crawled from my room to the hearth room. That was quite a little bit for his first journey. It was awesome!!!!!!!!!!!!!!!!! Hard to believe it was the same kid that could not hold up his own head Friday morning. Thank you Lord for allowing all of us to end this day with such a reward. May you be praised for your faithfulness in our lives.
I need to try to post a few pictures of him, but this one has gotten quite long.
If you want to continue to pray for him, it would be in the area of his back being healed of this irritation from the bedding and that his incision site would heal safe and sound, with no more drainage.
Thanks again for your support and being a part of this incredible journey.
Love,
Tammy
Friday, May 27, 2011
It is Friday!!!!!!
Well he made it to Friday. The big day to get out of bed!!!!! Yea. He slept very well last night, which was a great thing. Then, this morning, when we told him he was able to get out of bed, he told us he was not ready yet. What a goof!!!!
Physical therapy came and showed us how to move Keenan from bed to wheelchair. Keenan did not like sitting up, but he pushed through it. I am sure it not only hurt his back, but muscles that have been tight and tense his whole life are not anymore, and I bet that is odd and perhaps even scary to him. I still marvel at how easily his legs move. It is surreal to us. You should see him move his feet!!!! They move much like ours now. I just can't believe it!!!!! :-)
He wanted to give all of you a message this morning, so hope you enjoy.
Keenan is putting the blame for his procedure on Brad right now. We expected this and Brad just smiles and shakes his head. What an awesome day it will be when Keenan realizes what this surgery has given him. How cool that will be!!!!
Mr. Keenan is a happy camper right now. He is sitting upright in bed playing Wii. That is the perfect scenario for our little guy. He can move now as he tolerates it within the bed.
Lunch time: Hummus and pita chips (Hey, it is protein.)
The rest of his day looks like this...
1st PT visit at 2:00. I am sure this will involve much complaining and some tears. :-(
Physical therapy came and showed us how to move Keenan from bed to wheelchair. Keenan did not like sitting up, but he pushed through it. I am sure it not only hurt his back, but muscles that have been tight and tense his whole life are not anymore, and I bet that is odd and perhaps even scary to him. I still marvel at how easily his legs move. It is surreal to us. You should see him move his feet!!!! They move much like ours now. I just can't believe it!!!!! :-)
He wanted to give all of you a message this morning, so hope you enjoy.
Mr. Keenan is a happy camper right now. He is sitting upright in bed playing Wii. That is the perfect scenario for our little guy. He can move now as he tolerates it within the bed.
Lunch time: Hummus and pita chips (Hey, it is protein.)
The rest of his day looks like this...
1st PT visit at 2:00. I am sure this will involve much complaining and some tears. :-(
We will encourage movement for him so he won't be as stiff. He will also be encouraged to start eating more.
I will try to write again this evening if he is restful and sleepy.
Blessings from St. Louis.
Tammy
Thursday, May 26, 2011
A Recap of Wednesday
Overall, he had a good day. His pain is being controlled fairly well. We played a few things in the evenng on his bed. The last hour before time for another dose of medicine is somewhat hard, but he is making it.
The highlight of his day, by far, was being able to talk to Kaylee on Face Time. That is a great use of technology if there ever was one. She was thrilled to see her big brother, and Keenan asked off and on all day if he could talk to Sissy. So, a BIG thanks to Heather for allowing us to keep in touch this way. It has meant so much to all of usI have a little video from Keenan.
So, the highlight on Wednesday happened when I had to help Keenan use the bedside urinal. Brad was holding the "jug" and it was my job to pull up one leg just a bit. For the first time EVER, it took no effort to try to separate his legs. Before surgery he was so stiff and tight that it took a bit of strength to pull them apart and hold them that way, without the spasticity taking over and pulling the legs back together.
IT WAS TOTALLY AWESOME!!!!!!!!!!!!!!!! What a moment.
Prayer request: rest, tolerable pain level and patience for the rest of the day and tonight. He can't get out of bed until tomorrow, and while he doesn't know how hard that is going to be, I think it be a good thing for him to be able to move.
Blessings,
Tammy
The highlight of his day, by far, was being able to talk to Kaylee on Face Time. That is a great use of technology if there ever was one. She was thrilled to see her big brother, and Keenan asked off and on all day if he could talk to Sissy. So, a BIG thanks to Heather for allowing us to keep in touch this way. It has meant so much to all of usI have a little video from Keenan.
So, the highlight on Wednesday happened when I had to help Keenan use the bedside urinal. Brad was holding the "jug" and it was my job to pull up one leg just a bit. For the first time EVER, it took no effort to try to separate his legs. Before surgery he was so stiff and tight that it took a bit of strength to pull them apart and hold them that way, without the spasticity taking over and pulling the legs back together.
IT WAS TOTALLY AWESOME!!!!!!!!!!!!!!!! What a moment.
Prayer request: rest, tolerable pain level and patience for the rest of the day and tonight. He can't get out of bed until tomorrow, and while he doesn't know how hard that is going to be, I think it be a good thing for him to be able to move.
Blessings,
Tammy
Tuesday, May 24, 2011
Update on surgery
Keenan was a total trooper!!!!! We had an answer to prayer for his level of anxiety indeed. A few tears when he left us, but he was not distraught by any means. Praise the Lord, for He is good!!!
I just talked to his nurse at 3:45 pm and they had just started the procedure. The surgery will take 3-3 1/2 hours and then some time in recovery, so it will probably be 7-8 before he is finished.
We are excited and anticipating great things. Between God and this extraordinary doctor, he is in great hands.
More later....
Tammy
I just talked to his nurse at 3:45 pm and they had just started the procedure. The surgery will take 3-3 1/2 hours and then some time in recovery, so it will probably be 7-8 before he is finished.
We are excited and anticipating great things. Between God and this extraordinary doctor, he is in great hands.
More later....
Tammy
Monday, May 23, 2011
Evaluation Day (with video)
Keenan slept very well and did not wake up until 7:30. That is major for him. We got some lunch and then it was time to head to the hospital. We had to wait about 45 minutes to begin, but Keenan and I are used to waiting on doctors, so it was not bad. We met a couple other families in the waiting room who were getting ready for the procedure, or had already had the surgery and were back for post op visits.
We met Dr. Park and liked him. He thinks this will help Kee's balance, comfort, and ability to become more mobile. The tightness he experiences in his heels and hamstrings won't be completely relieved from the rhizotomy. More than likely he will have to have to have heel and hamstring release surgery in the next few months. (He does not know this yet.) We knew this was a possibility and time will tell us for sure, but it is a real possibility.
He was such a trooper today. We were in the hospital four hours, going to this place and that place. He is such a positive little guy.
Keenan had a great surprise when we got back to the hotel: Mema!!! He was totally taken off guard and I wish I would have taken a picture of his face. It was too cute. There was hugging and happiness indeed.
The day ended with a short trip to the mall and dinner at The Cheesecake Factory!!!!! Yummy.
Tomorrow we check in at noon. His procedure will be at 2:30 and he should be finished about 5:00.
I have been told by a few that they are unable to post to the blog. I thought I had that fixed, and I must to a degree, but I will try to figure that out tomorrow. If any of you have encountered that problem with your own blogs and have an easy fix to suggest, that would be great. Totally learning as I go on this one. :-)
Thank you for taking the time to be part of our journey.
Love to all,
Tammy
Sunday, May 22, 2011
Travel Day
Hello. We dropped off Kaylee at 9:00 this morning and headed to the airport. This was Keenan's maiden voyage into the world of airline travel. He was VERY excited about it, to say the least. He did very well until we hit MAJOR turbulence getting into Memphis. Guess we were very near a storm. It was pretty intense, I have to admit, but he was very brave. He was a little more timid to get onto the connecting flight to St. Louis, but again, he was a trooper.
If you listen to praise and worship music this will make you smile, at the tail end of the turbulence we were experiencing, Keenan was listening to the IPod and singing these words, "my God is not dead, he's surely alive, and he's living on the inside, roaring like a lion...". Wow, out of the mouth of little ones. I smiled and shook my head.
If you listen to praise and worship music this will make you smile, at the tail end of the turbulence we were experiencing, Keenan was listening to the IPod and singing these words, "my God is not dead, he's surely alive, and he's living on the inside, roaring like a lion...". Wow, out of the mouth of little ones. I smiled and shook my head.
After we arrived in St. Louis we went to the hotel for a bit and then took a drive to see the famous arch. He thought it was cool, but did not want to go up in it. We then searched for some mexican food, per his request, and spent the rest of the evening in the hotel room.
Tomorrow we will go to the hospital about noon to meet Dr. Park, have some xrays taken, do an initial PT evaluation, and that is it. He does not know it yet, but his Mema is coming to meet us tomorrow afternoon, so I am sure we will all find something to do before going to dinner and having some time to relax in the hotel (Kee's favorite travel activity).
Thank you for praying for Keenan's anxiety. So far, he seems to really be handling all of this like the trooper we know he is. Please continue to pray that he does not focus too much on all that is yet to come.
Love from us...
Saturday, May 14, 2011
My "Little" Man
It is hard to believe that in 10 more days his life will never again be the same!!!! What is in store???? How exciting (and a bit scary) to think about the week that is ahead for him. He seems to be handling it well right now. He does talk about the surgery a bit and does so without any tears.
So many things to do this week....the end of the school year for the two of us, planning what needs to be packed for all of us, finalizing details for Kaylee Ann, getting graduation gifts, running errands, etc. I know all the details will come together, as they always do. :-)
If God puts Keenan on your heart this week, we would ask for you to take a minute to pray for him in the following ways: safety during the surgery and a recovery as free from pain as possible, his sinuses are OUT OF CONTROL and is on antibiotic in hopes that it will help get that cleared up before surgery, that he enjoys flying.
I hope to figure out how to upload video to the blog, so you can see his post operation physical therapy.
How thankful I am God has brought us to this place in Keenan's journey!!!! He does work in amazing ways, and in His time. All I want for Keenan is that he know Christ, follow after his dreams, whatever they may be, and show kindness and compassion to others. But, if I could shoot for the moon, my dream for him is to walk down the halls of his high school and be able to carry his books to class without any help. To me, that would be the icing on the cake. One thing I do know, with God, ALL things are possible.........
Blessings and love,
Tammy
Sunday, May 1, 2011
A "Bone" to Savor
God often "throws me a bone" (a little something to let me know He is near) and a few nights ago, while rocking Kaylee before putting her to bed, He served me a very unique and timely "bone".
Some of you will think I am a complete weirdo, but that is okay because the story is cool. When I was a little girl, I often watched reruns of the TV show, The Waltons. There was always something appealing about the life they lived on the mountain. Well, there are still reruns on an obscure channel I happened to find a few months ago. On rare occasion, when I get to rock Kaylee before bed, I watch it for a bit.
On this particular evening, it was a two-hour episode and I caught the last 15 minutes of it. The youngest girl, Erin, must have had some type of accident and had braces on her legs. Apparently her chances of walking again did not look good, but she had made some progress over time. Well, one of her brothers was pushing her on the swing until he got called away for a moment. Another brother was nearby, in the barn, watching Erin. The swing came to a stop and she wanted to get off the swing. Her crutches were laying on a bench very near the swing. So, she leaned herself over to the crutches and was preparing to ready herself to walk when Jason, the brother watching her from the barn, encouraged Erin to walk to him. After some prodding, Erin took two successful steps to her older brother--which was the beginning of her road to total recovery. (It is the Waltons, ya know. There had to be a nice, happy ending.)
What were the odds of seeing an episode of ANY television show with content such as this, at such a time as this.? They are 100% when our focus is on God and seeking His direction for our lives. There has yet to be a time when I have earnestly sought His plan that He has not "thrown me a bone" to let me know He was right there, watching over the given situation, and guiding me. In this instance, I was so energized and excited. God was saying to me, look at what is yet to come for Keenan. I can make ALL things new!
So, thank you Lord, for showing me a glimpse of what I believe is yet to come for my son. You are awesome and so very personal, if we but have our eyes fixed on you. To me, there are NO coincidences, only divine appointments with the creator of the universe. I am grateful I did not miss this meeting!!
Some of you will think I am a complete weirdo, but that is okay because the story is cool. When I was a little girl, I often watched reruns of the TV show, The Waltons. There was always something appealing about the life they lived on the mountain. Well, there are still reruns on an obscure channel I happened to find a few months ago. On rare occasion, when I get to rock Kaylee before bed, I watch it for a bit.
On this particular evening, it was a two-hour episode and I caught the last 15 minutes of it. The youngest girl, Erin, must have had some type of accident and had braces on her legs. Apparently her chances of walking again did not look good, but she had made some progress over time. Well, one of her brothers was pushing her on the swing until he got called away for a moment. Another brother was nearby, in the barn, watching Erin. The swing came to a stop and she wanted to get off the swing. Her crutches were laying on a bench very near the swing. So, she leaned herself over to the crutches and was preparing to ready herself to walk when Jason, the brother watching her from the barn, encouraged Erin to walk to him. After some prodding, Erin took two successful steps to her older brother--which was the beginning of her road to total recovery. (It is the Waltons, ya know. There had to be a nice, happy ending.)
What were the odds of seeing an episode of ANY television show with content such as this, at such a time as this.? They are 100% when our focus is on God and seeking His direction for our lives. There has yet to be a time when I have earnestly sought His plan that He has not "thrown me a bone" to let me know He was right there, watching over the given situation, and guiding me. In this instance, I was so energized and excited. God was saying to me, look at what is yet to come for Keenan. I can make ALL things new!
So, thank you Lord, for showing me a glimpse of what I believe is yet to come for my son. You are awesome and so very personal, if we but have our eyes fixed on you. To me, there are NO coincidences, only divine appointments with the creator of the universe. I am grateful I did not miss this meeting!!
Tuesday, April 12, 2011
Why "Refiner's Fire"?
When Brad and I made the decision for Keenan to have the Selective Dorsal Rhizotomy to help with his spasticity, I thought a good way to communicate to others about our journey was to begin a blog. I have wanted to learn how to set up/manage one for a bit (mainly as a new and interactive tool to use with my kids in the classroom), but never allowed myself the time to do it.
So, the journey toward becoming a little more computer savvy began and my first decision was a title for my blog. I wanted it to be something meaningful that captured the essence of our journey the past seven years. The first title, and only title, that entered my mind was “Refiner’s Fire”. I could not let go of it, so I began to search for deeper explanations about what it means to be refined in the fire. I have read the verses and have heard thoughts about what it means to be refined, but I went into God’s Word and used that as my guide to put a framework together for myself (and the blog). As I continue to update over the next several months, I am sure God will allow me to pull “nuggets” from the notes I have taken on the whole subject of being refined.
I did read a bit about how the silversmith works to refine silver and found the analogy between the silversmith and God to be pretty awesome. When silver is being refined, it has to be held in the middle of the fire, where it is hottest, to burn away every impurity. The silversmith has to stay by the fire the entire time, watching the silver. If it is left there even a moment too long, it would be destroyed. So, how does the silversmith know when the silver is refined???? It is when he can see his image in it. Isn’t that the coolest??? The same is true of our experience when we are in trials and feel like we possibly can’t take it one moment longer. Our Heavenly Father is right there with us, making sure we don’t get “burned”. He does not leave us (or allow us) to be in that trial one moment longer than is needed to refine our character in a way that makes us more like Him.
I love that we can go to His Word for powerful promises that relate to this very topic.
Hebrews 13:5 Keep your lives free from the love of money and be content with what you have, because God has said,”Never will I leave you; never will I forsake you.”
Psalm 34:18 “The Lord is close to the broken hearted and saves those who are crushed in spirit.”
Romans 8:28 “And we know that in all things God works for good of those who love him, who have been called according to his purpose.”
I am so excited to see what God has in store for Keenan. I know the short-term is going to be soooo hard on him, and that will be tough not only to watch, but also to be the one to keep pushing him on those days he is ready to give up. But, thankfully, we don’t live in the fire of refinement. This will be only a season and then there will be reaping of GREAT joy as Keenan will get to move with greater confidence and strength. What a day of rejoicing that will be!!!!!!!
Thank you for being a part of our story and a part of what has brought us to this point in our journey. Over the years, whether you provided a listening ear, been a prayer warrior, offered encouragement and love at just the right moment, shared a meal, offered to keep Kaylee, visited us during our many hospital stays, or gave us a hug, I am thankful.
Now, on to greater things that are yet to come, all because of God’s grace, love and mercy that He bestows in His time.
Tammy
(April 8, 2011)
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