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
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