It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Tuesday, March 14, 2017
Sunday, March 12, 2017
Friday, March 10, 2017
Snow Day
10 Days until Spring and the kids have a snow day. It isn't the best timing because I just realized last night that Brendan's medicaid packet was due TODAY. I have definitely procrastinated before and have driven out there to hand deliver it which takes 40 minutes one way. They actually time stamp it upon arrival. Well now I am home with 5 kids. Not sure that will happen. I may have to call and ask if I can mail it today. I also needed to go to work to make copies of all his insurance cards for the packet. Of course today it snows!!!
Brendan has matured over the last few years. Snow days usually put him over the edge. Now he was a bit off on Thursday and wild for therapy. He wasn't the most cooperative and was a little crazy but any disruption to routine can cause any sort of behavior change. He used to get very upset and angry. He handles it much better this year. I had to call him from my bed at 5:30am to let him know school cancelled. He was already awake talking to his Alexa waiting for me to tell him. He told me he couldn't go back to sleep and listened to music. We were able to sleep until 8:15 am..... amazing!!! The little kids slept in. They never actually sleep in when we can. They were tricked because it was supposed to be a school day hahah!! It was great.
I should make a few phone calls today. I need to call axiobionics and Restorative Therapies. https://www.facebook.com/Restorative-Therapies-173178386057226/
There is a bike connected with estim that I think would really benefit Brendan. I was talking to his PT on Thursday about how he can not stand straight with his right leg anymore. His knee will not straighten. Now I was concerned because he had SPML a few months ago and I just couldn't understand why he can not stand tall. The PT told me since we can straighten his legs while sitting (which is actually harder to do and should cause him more pain which it doesn't) this means that it is all due to muscle weakness. He is actually having a hard time getting his right quad to activate causing weakness that we can't really improve. So he suggested Estim. Finally someoneon the same page as me. I have always wanted to try estim with Brendan and have always gotten the runaround. I am thrilled. The bike will be a process to get and Derek isn't thrilled with adding something this size into the house BUT this would be great for him to use all Winter long. I will share a video too.
Axiobionics makes a different style of braces. Not the typical AFO style. Brendan's entire right side is worse off and it really hinders him. It is frustrating because he seems so strong but once you hold back on the left side he can't do much. It is that weak! I feel he needs more assistance on that side to help him achieve higher goals. I have been procrastinating big time calling these companies so today is the day!
Brendan has matured over the last few years. Snow days usually put him over the edge. Now he was a bit off on Thursday and wild for therapy. He wasn't the most cooperative and was a little crazy but any disruption to routine can cause any sort of behavior change. He used to get very upset and angry. He handles it much better this year. I had to call him from my bed at 5:30am to let him know school cancelled. He was already awake talking to his Alexa waiting for me to tell him. He told me he couldn't go back to sleep and listened to music. We were able to sleep until 8:15 am..... amazing!!! The little kids slept in. They never actually sleep in when we can. They were tricked because it was supposed to be a school day hahah!! It was great.
I should make a few phone calls today. I need to call axiobionics and Restorative Therapies. https://www.facebook.com/Restorative-Therapies-173178386057226/
There is a bike connected with estim that I think would really benefit Brendan. I was talking to his PT on Thursday about how he can not stand straight with his right leg anymore. His knee will not straighten. Now I was concerned because he had SPML a few months ago and I just couldn't understand why he can not stand tall. The PT told me since we can straighten his legs while sitting (which is actually harder to do and should cause him more pain which it doesn't) this means that it is all due to muscle weakness. He is actually having a hard time getting his right quad to activate causing weakness that we can't really improve. So he suggested Estim. Finally someoneon the same page as me. I have always wanted to try estim with Brendan and have always gotten the runaround. I am thrilled. The bike will be a process to get and Derek isn't thrilled with adding something this size into the house BUT this would be great for him to use all Winter long. I will share a video too.
Axiobionics makes a different style of braces. Not the typical AFO style. Brendan's entire right side is worse off and it really hinders him. It is frustrating because he seems so strong but once you hold back on the left side he can't do much. It is that weak! I feel he needs more assistance on that side to help him achieve higher goals. I have been procrastinating big time calling these companies so today is the day!
Thursday, March 9, 2017
Should we take notes for our trip to Texas? If you have a sense of humor watch Zach Anner!
https://youtu.be/V4RonP9hZQw
Tuesday, March 7, 2017
Let's talk braces. AFO, DAFO, SMO
Brendan has worn leg braces since he was just 2 years old! He was always put into AFO's. AFO is short for Ankle Foot Orthosis. I never knew any better. I thought the orthopedics and doctors knew what they were doing and that was the brace he needed. 12 years later I realize I completely disagree with putting your child into AFO's. It completely limits them and does NOT allow them to gain any muscle mass. I was told to have Brendan wear them all day long. Always while walking, always while in his stander, basically he shouldn't do anything without them on. I wasn't as internet savy then as I am now. I did try to research and belonged to some support groups but honestly life raising a disabled child was so different 12 years ago. I am sure you learn as you go but often we just listen to these professionals and truley believe they know best.
12 years ago Brendan had zero muscle mass in his legs. He serioulsy had chicken legs. His thighs were the almost the same size as his calves. His calf was the same size of his ankle. His knee caps looked huge compared to his legs. I wish I had known. I wish I knew to have him walk without braces.
Thankfully I stayed in St. Louis after SDR for a few extra weeks so he could have additional therapy. Dr. Park had SMO's made for him. I LOVE SMO's. They gave him some ankle support but allowed him to gain the muscle he needed. He walked great in them. I still 2nd guessed myself from time to time becuase you always think as a parent you don't know as much as the professionals. However, I recently read something a mother wrote about her child being forced back into AFO's after SDR. At first her child wore the SMO's but a year or so later she was told that her child needed to wear AFO's again. Well the mother first hand witnesed her child lose all the muscle mass they worked so hard to build. We have worked 2 years and there is no way I want his muscle mass to decrease. I would cry. At that moment I knew I needed to trust my gut. I knew I was making the right decisions. However the story doesn't end there....
Over the Summer Brendan had a major growth spurt. This caused his hamstrings to tighten. As children with CP grow their tendons become shortened due to the spasticity pulling on them their entire lives. Since Brendan had SDR at a late age he needed SPML to help lengthen his tight tendons. He was walking horribly, with a crouched gain and had foot drop. Brendan needed his yearly x rays of his hips and spine and had an appointmetn with his orthopedic. After literally watching Brendan walk 10 steps he immediately said he should go back into AFO's. I said "no way. I do not want him in AFO's. He has finally been able to gain muscle and he can not walk well at all in them. I want to keep him in SMO's'. He reluctantly agreed. However, when I arrived at his orthotic appointment to have him casted for new SMO's we were again was told he needed different braces. This person was amazing and personable and took the time to really watch Brendan walk and asked us a lot of questions. She highly recommneded more than an SMO. So I 2nd guessed myself again and I listened to what she had to say. I told her there is no way I want him in AFO's. He can't build muscle wearing them. So she recommended the DAFO. (although his braces do not like like DAFO's at all) She explained them and unfortunately I pictured them a bit differently than what they actually are. They are in between an AFO and the SMO but still very restricting. I agreed because I knew we still had his SMO's (unfortunately he has now completely outgrown them) and I asked her to heat them up and help him fit into them longer. She did this for me and he was able to wear them for many more months. I asked his teachers to report how his walking is with the DAFO's on and they feel he walks better with them on. I send him to school with them and that is it. I work him out, have him ride his bike and have him walk without them on. At least I know he is in fact still gaining muscle because he recently needed the tops of his DAFO's blown out (right below the knee) because they were too tight!
I asked Brendan today if he rather walk with or without braces and he said without. I asked if he likes to work out with or without braces and he said without. We just stopped using his smo's last month because he told me they were causing him pain and it felt better to not wear anything at all so I listened to him and threw them in his closet.
I really have no idea what the best option is. I don't know who to ask. I asked Dr. Yngve his thoughts when we were there for SPML and also recommended staying in the brace he has but to have the foot constantly adjusted as he gains strength. (I don't even know what that means and will have to ask his opinion again when we see him in a few weeks) I am not done researching and I won't stop finding what is best. I am looking into axiobionics. I want him to have what he needs but also allow him to use his own muscles. I want his body to learn how to walk with a normal gait without having a brace hold his leg and foot in a fixed position. I have heard of a doctor in NY (Dr. Jordan) whom is amazing at creating braces that are best for your child. However NY is 5 hours away and we would need to travel back and forth 3x just to get these braces which is a little difficult when you have 5 kids! I have heard such good things about him so it is always in the back of my mind. Not to mention NO ONE around here agrees with SDR let alone knows post op care. I feel alone in that aspect.
Here are some photos. The AFO's (blue) were made only a few months before SDR. Notice how they are the same size top to bottom. You can see how much he has grown because both of the tall braces end at the top of the calf. I also see major ankle pronation going on in the right AFO. His DAFO (black) looks pretty normal on the right which is awesome. SMO's will always be our favorite and I will ask to see if a new pair can be made because he can't work out in the DAFO's even if I wanted him to. I don't think insurance will pay for another pair just yet. Maybe someone can work their magic and help us out.
12 years ago Brendan had zero muscle mass in his legs. He serioulsy had chicken legs. His thighs were the almost the same size as his calves. His calf was the same size of his ankle. His knee caps looked huge compared to his legs. I wish I had known. I wish I knew to have him walk without braces.
Thankfully I stayed in St. Louis after SDR for a few extra weeks so he could have additional therapy. Dr. Park had SMO's made for him. I LOVE SMO's. They gave him some ankle support but allowed him to gain the muscle he needed. He walked great in them. I still 2nd guessed myself from time to time becuase you always think as a parent you don't know as much as the professionals. However, I recently read something a mother wrote about her child being forced back into AFO's after SDR. At first her child wore the SMO's but a year or so later she was told that her child needed to wear AFO's again. Well the mother first hand witnesed her child lose all the muscle mass they worked so hard to build. We have worked 2 years and there is no way I want his muscle mass to decrease. I would cry. At that moment I knew I needed to trust my gut. I knew I was making the right decisions. However the story doesn't end there....
Over the Summer Brendan had a major growth spurt. This caused his hamstrings to tighten. As children with CP grow their tendons become shortened due to the spasticity pulling on them their entire lives. Since Brendan had SDR at a late age he needed SPML to help lengthen his tight tendons. He was walking horribly, with a crouched gain and had foot drop. Brendan needed his yearly x rays of his hips and spine and had an appointmetn with his orthopedic. After literally watching Brendan walk 10 steps he immediately said he should go back into AFO's. I said "no way. I do not want him in AFO's. He has finally been able to gain muscle and he can not walk well at all in them. I want to keep him in SMO's'. He reluctantly agreed. However, when I arrived at his orthotic appointment to have him casted for new SMO's we were again was told he needed different braces. This person was amazing and personable and took the time to really watch Brendan walk and asked us a lot of questions. She highly recommneded more than an SMO. So I 2nd guessed myself again and I listened to what she had to say. I told her there is no way I want him in AFO's. He can't build muscle wearing them. So she recommended the DAFO. (although his braces do not like like DAFO's at all) She explained them and unfortunately I pictured them a bit differently than what they actually are. They are in between an AFO and the SMO but still very restricting. I agreed because I knew we still had his SMO's (unfortunately he has now completely outgrown them) and I asked her to heat them up and help him fit into them longer. She did this for me and he was able to wear them for many more months. I asked his teachers to report how his walking is with the DAFO's on and they feel he walks better with them on. I send him to school with them and that is it. I work him out, have him ride his bike and have him walk without them on. At least I know he is in fact still gaining muscle because he recently needed the tops of his DAFO's blown out (right below the knee) because they were too tight!
I asked Brendan today if he rather walk with or without braces and he said without. I asked if he likes to work out with or without braces and he said without. We just stopped using his smo's last month because he told me they were causing him pain and it felt better to not wear anything at all so I listened to him and threw them in his closet.
I really have no idea what the best option is. I don't know who to ask. I asked Dr. Yngve his thoughts when we were there for SPML and also recommended staying in the brace he has but to have the foot constantly adjusted as he gains strength. (I don't even know what that means and will have to ask his opinion again when we see him in a few weeks) I am not done researching and I won't stop finding what is best. I am looking into axiobionics. I want him to have what he needs but also allow him to use his own muscles. I want his body to learn how to walk with a normal gait without having a brace hold his leg and foot in a fixed position. I have heard of a doctor in NY (Dr. Jordan) whom is amazing at creating braces that are best for your child. However NY is 5 hours away and we would need to travel back and forth 3x just to get these braces which is a little difficult when you have 5 kids! I have heard such good things about him so it is always in the back of my mind. Not to mention NO ONE around here agrees with SDR let alone knows post op care. I feel alone in that aspect.
Here are some photos. The AFO's (blue) were made only a few months before SDR. Notice how they are the same size top to bottom. You can see how much he has grown because both of the tall braces end at the top of the calf. I also see major ankle pronation going on in the right AFO. His DAFO (black) looks pretty normal on the right which is awesome. SMO's will always be our favorite and I will ask to see if a new pair can be made because he can't work out in the DAFO's even if I wanted him to. I don't think insurance will pay for another pair just yet. Maybe someone can work their magic and help us out.
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