Miles to Go!
Donation protected
Miles suffered a severe hypoxic brain injury when he lost oxygen to his brain for 5 minutes during a bronchoscopy to remove an aspirated banana from his lungs. The purpose of this page is to share Miles' story and recruit teammates for "Team Miles" on his long fight to recovery.
Dear Team Miles,
Thank you so much for your continued support! We feel so much love from our community and cannot express enough how much it means to us and Miles! It has now been 14 months since his injury and with your help he has made amazing strides! During this time we have sought out both traditional and alternative forms of therapy to ensure that Miles can be the best he can be. Many of these therapies are only partially covered by insurance if at all.
We are launching the "Miles to Go" campaign to raise funds for therapy that is not covered by insurance. Even if you are unable to donate there are other ways you can help. Liking Miles' Facebook page, sharing this website and video with your social network or by simply leaving a comment of support are all ways you can help.
Since Miles is so young his brain maintains much of its plasticity and potential for improvement. Now is the time when intensive therapy will provide maximum results. Please help Miles continue his fight; every little bit makes a difference! He has made tremendous strides but he still has Miles to go!
Checkout Miles' story on YouTube:
http://youtu.be/8o1LHJgrtjo
Follow Miles' progress on Facebook:
https://www.facebook.com/MilesCobbSellai
For those of you who don't know me, my name is Miles Henry Cobb Sellai and I am two years old. I live in San Francisco with my mom, dad, big sister Rose and baby brother Reid. On April 30, 2012 I was a happy, healthy baby boy - walking, talking, and even taking swim lessons! I had just started "giving hugs" by laying my head on everything from my sister, to my dog Daisy to show my love.
On May 1st, the unthinkable happened. I was eating breakfast with my sister when I aspirated a banana into my lungs. My parents rushed me to the pediatric emergency department where I seemed okay at first. The last thing I remember is dancing on the exam table with a musical toy to lighten the mood. The doctors were about to take me into the operating room for a routine procedure where they would put a camera down my throat to remove the banana and make sure my lungs weren't obstructed. Here is what my mommy wrote about that day:
"Please send prayers for Miles, he is in the OR at CPMC. He aspirated some food this morning. Will update when we have more news."
But the routine procedure turned into an emergency. Later that day, my mommy explained:
"Pray as hard as you can for Miles. He was coded during surgery, stable now, will have to wait to see for brain and lungs recovery. Please pray."
Mommy told me that everyone was praying for me. Even though I wasn't awake, mommy and daddy stayed by my side day and night, hoping and praying that I would wake up without any brain damage. They thought the worst was over and updated all of our friends and family:
"Thank you for all the prayers. Miles is stable in the PICU, the next 24 hours will be critical, he will then be weaned off of his breathing tube and sedation. Docs are hopeful there was no damage to his brain and are watching him closely for infection. Will update when we have more info."
I still wasn't awake, but my mommy and daddy were optimistic. They had no idea of the long road ahead. Here are some things my mommy wrote about what happened next:
May 1, 2012 - "Thank you so much everyone. Im reading your msgs of hope and love through my tears, it means to much. Miles remains stable; Drs. expect to begin weaning him off sedation and remove his breathing tube tomorrow. They are optimistic that he did not suffer brain damage and continue to watch him closely for infection. He continues to need your positive thoughts and prayers. With much love & appreciation."
May 2, 2012 - "Finally some good news!! MRI showed a normal brain with no indication of injury. We are beyond relieved and expect our little boy to come back to us soon. Although he remains sedated and on a ventilator, the doctors continue to be optimistic and we are very thankful Miles is in good hands. Thank you so much for all of your kind msgs and offers of support!! Xoxo"
May 3, 2012 - "Today we are focusing on getting Miles' lungs healthy and operating on their own. He is fighting pneumonia brought on by the foreign bodies that entered his lungs. We are hopeful that he will be taken off sedation and the ventilator within the next 24 hours. Looking forward to seeing those baby blues! Thank you again for all the love and prayers, your msgs are helping us keep it together!"
May 4, 2012 - "They removed Miles' breathing tube this morning and his airway swelled closed. He has since been reintubated and is once again stable. The new plan is to let him recuperate, put him on steroids and anti-inflamatories, then do another attempt on Monday in the OR with all hands on deck. He continues to need every prayer in your heart. I am holding on with every hope of my being that I will be holding my baby boy soon. Hug your babies close."
Despite all the prayers for my full recovery, things kept getting worse:
May 6, 2012 - "Miles has begun to have some seizures which indicates that his brain probably suffered some type of injury while he was without oxygen. We will not know the extent until he is awake and able to have a proper neuro eval. His CT scan came back normal and they are testing his spinal fluid for bacteria to rule out brain infection. Respiratory wise he is doing better, xrays are improving and he is responding well to treatment. Once the swelling in his airway has significantly decreased they will remove him from the ventilator, sometime between Monday and Wednesday. We remain hopeful and knowing that he is in your thoughts is giving us some peace during this very difficult time."
May 8, 2012 - "The last 24 hours have been challenging. Miles has had a couple of issues with his breathing tube but is once again stable. Although his initial MRI, CT scan, and other lab results have come back normal, Miles has some unexplained issues that seem to indicate there may be some swelling in his brain. Another MRI is scheduled for this afternoon. The swelling in his trachea has improved yet his lungs have regressed slightly. They are testing him for various infections including RSV, which he battled with last December. One step forward, 2 steps back is how things seem to be going. We feel that good news just has to be around the corner. we are trying to stay strong for our sweet boy and he continues to fight. Keep those positive thoughts and prayers coming, we all feel your love."
May 9, 2012 - "Today was a very difficult day. The MRI taken this afternoon showed that Miles does have swelling in his brain. Brain injuries and recovery differ so much from person to person it is impossible for the neurologist to tell us what to expect until he is awake. We are now in a holding pattern, fighting to keep Miles stable while waiting for the swelling to subside. Once that happens the doctors can then begin to examine him for respiratory capability to see if he can be safely removed from the ventilator. So we wait and wait some more and continue to pray for his little body to keep fighting the good fight. For now he is comfortable and being very well cared for by the amazing pediatric team here at CPMC. We are digging deep inside ourselves to find the strength to get through this horrible nightmare. Thank you so much for all the messages, although I haven't been able to respond, I've read each and every one."
My mommy is so strong, despite the nightmare we were living, she stayed strong for me. Later that day she shared:
"Today I have regrouped and am focusing on what we do know. We know that his lungs continue to improve, his fevers and seizures have subsided and the swelling in his trachea has reduced to a level where it is safe to extubate. The goal is to attempt to remove his tube on Friday morning with him continuing to wean from both ventilator support and sedation over the next two days. I have a feeling deep inside me that he will be ok and no matter how many blows we have taken that feeling always returns. It may be denial or survival, but for now I am finding some hope and peace in those maternal instincts."
May 10, 2012 - "The last two days have been relatively uneventful with just a few hiccups. Miles' body is continuing to heal and he has become more stable respiratory wise. The OR is booked for 8:10 am to remove his tube in a very controlled environment with a team of doctors at his side. The neurologist has informed us that it will take a good 3-4 days for all of the meds to exit his system which is necessary to get an accurate baseline evaluation. If the extubation is successful I expect to have my hands full but will try to keep everyone updated as best I can. We pray that his brain injury will be minor and are putting lots of hope into the fact that Miles' brain is so young. Keep him in your thoughts tomorrow morning, he will need all the positive energy he can get!"
May 11, 2012 - "Miles had a successful procedure this morning! He is breathing well on his own and remains stable. The plan is to keep him partially medicated so he is relaxed and comfy. He will recover through the weekend and then on Monday they will start to evaluate his neurological status. We are breathing a huge sigh of relief as are his massive team of doctors. I feel a lightening in the air all around the PICU today! Sending so much love back out to our friends and family for your continued prayers and support! You are holding us up with your love."
May 15, 2012 - "The last few days we've been trying to keep Miles as comfortable as possible. His body is having a hard time coming off of the sedation meds and he's been experiencing intense withdrawal side effects. The doctors are trying to find the right balance of medications that will keep him comfortable yet allow him to become more alert. It is still hard to measure the extent of his brain injury since they don't know if his continued sleepiness is due to injury or due to meds. Respiratory wise he is doing great; his lungs and airways have continued to heal and normalize. We expect in the next week or so to be transferred to Oakland Children's hospital so he can begin rehabilitation. Thank you for your continued prayers and support during this very difficult time."
May 31, 2012 - "This week has been full of surprises and continued progress for Miles!! Highlights include delay of Gastrostomy surgery because Miles has shown so much interest in eating, gobbling up ice cream, vocal communication and to top it all off, Miles has been accepted into Oakland Children's hospital to begin rehabilitation!! We are transferring tomorrow and cannot wait to see what our little fighter has in store for us next!! This is the good news we've been desperately waiting for, the hundreds and hundreds of prayers and good thoughts are working! Thank you all for you continued love and support, lots of love!"
June 1, 2012 - "On our way to Oakland Children's!! Just a month ago we were devastated by the prospect of Miles needing rehab, today we are overjoyed and thankful that he has made it this far! Now we start the next chapter of his road to recovery!"
June 8, 2012 - "Starting to settle in here at Children's, it is a much different place than our previous digs. The rehab team is still working to get Miles' meds adjusted to keep him calm yet awake, probably will be another week before that is under control. Miles is still in the early stages of becoming more congnitively aware, but we have started to see changes in his body movements. He is becoming less stiff and has more control over the movements of his arms and legs. He has been trying to pull out his feeding tube which has been the first purposeful movement he's been able to accomplish with his arm and hand. Although his tube needs to stay in place we are very happy to see him repeatedly go after it since that would be a normal reaction for a 15 month old. We hope to have some idea of his prognosis and rehab plan in the next couple weeks. Thank you for your continued support this will be a long road for him, but we are keeping hope alive that he will be able to get back to his previous self!"
June 15, 2012 - "From the very beginning of this terrible ordeal, Miles has progressed at his own pace. Just as our hopes start to dwindle and the doctors start to doubt, Miles will surprise us by making a turn for the better. We again find ourselves at one of those turning points. The doctors are concerned about Miles' slow progress and lack of calm awake periods. 8 weeks post brain injury is the critical period where one would expect to see the most rapid improvement. We are now at a little over 6 weeks post injury and Miles still has a ways to go to fully 'wake up' from his coma state. We are hoping to see him improve leaps and bounds in this time period as it will make a huge impact on his long term prognosis. Like I've said from the beginning, no matter how many set back we've had, my inner mommy voice tells me he will come back to us! Miles is lucky to have a team of very dedicated doctors behind him and we have no doubt they will go above and beyond to help him be the best he can be! Please please keep up those prayers, he needs all the positive energy we can muster to give him the boost that he needs to keep improving! Mike and I are finding Children's to be extremely draining on the soul, every parent here is living their worst nightmare, so if you could say an extra prayer for all of us, we could sure use it. Continued thanks for all of your love and support!"
June 27, 2012 - Miles had surgery last week to have a feeding tube placed into his stomach. The past three weeks he has been unwilling to eat by mouth so the G-tube was placed to allow for feeding him long term. He did not handle the surgery well, and after a short stay in the ICU he is back on the rehab wing but still fighting back through a significant regression. The doctors have started to use terms like "severe injury" and "significant damage" so needless to say the past few days have been devastating. The type of injury suffered by Miles affects his entire brain making it difficult for it to remap or compensate for damaged areas. He can hear, smell, feel and taste, but he is unable to see or move his body in a purposeful way. We had previously seen his body relax and loosen to a normal position, but post-op he's experienced so much agitation the stiffness has returned. His eyesight has the potential to improve for up to a year, but any significant improvements in his cognitive awareness and physical abilities would be expected to happen in the 12 weeks post injury; Tuesday marked 8 weeks post injury. All along we have worked hard to keep each other's spirits up and remain hopeful in the face of our worst fears, but that task is becoming more difficult by the day. We are doing our best to keep it together and appreciate all the messages and support we've received from family and friends both near and far. I will keep updating with our discharge plans; I would expect we will be going home in the next couple of weeks barring a major turn-around for Miles. No harm in still hoping for a miracle!"
Just when it seemed like mommy and daddy were losing hope, I started to show some real signs of improvement. Here is what mommy had to say about it:
July 4, 2012 - "I mentioned before how just when all hope seems lost, Miles will surprise us by making a turnaround; well he has done it again! As of Monday he has progressed to a calm and awake state and has improved significantly. He is wanting to be held constantly, eyes wide open, moving his head around to track noises and showing the first signs of regaining some head control. Tonight he even ate some applesauce which was the first time he has eaten by mouth in a month! His body has returned to a relaxed state, and he has been making great strides in therapy. We haven't received any official report from his doctors on what this all means, but we are feeling the hope surge back with full force! Keep up the prayers for that miracle!! xo"
July 14, 2012 - "Well, the time has come; we just received the bittersweet news that Miles will be coming home and transitioning to outpatient therapy later this week. We are in the process of assembling a team of specialists and therapists (Team Miles) to make sure he has every opportunity to be the best he can be! Although we had hoped we'd be bringing him home more recovered, we remain hopeful that he will continue to make great strides. The last two weeks he has progressed leaps and bounds and his rehab specialists now believe he will fully make it out of a coma state. This means he has the potential to regain many of his previous functions! He is currently working on regaining head control and rolling; predictions are he should have these skills down pat in about a week. His next major skill will be learning how to sit up which they expect to take 2-3 months, hence it doesn't make sense for us to remain in the hospital for that extended amount of time. We've been told if he can sit up before 2 years old he will walk again, so predictions are that he will be ahead of course for that major milestone! His vision is coming back sooner than expected which means that although there was severe damage, his amazing brain is repairing itself! The better he can see, the faster he will meet his milestones, so this is a key element of his recovery. This is going to be a long road for him, but we know he can do amazing things so we'll fight right along side him all the way! I can't say it enough how grateful we are for all of the messages, meals, cards and love and support we've received from our friends and family; thank you for standing by us.
Much love, Elyse & Mike"
On July 19th I finally got to go home! While I know this was bittersweet for my parents, I also know that I can make great strides with the help of my family, team of therapists, and the rest of "Team Miles." I know my sister is happy to have mommy, daddy, and "Baby Miles" home!
Thank you for visiting my website and taking the time to read my story.
Love, Miles
Dear Team Miles,
Thank you so much for your continued support! We feel so much love from our community and cannot express enough how much it means to us and Miles! It has now been 14 months since his injury and with your help he has made amazing strides! During this time we have sought out both traditional and alternative forms of therapy to ensure that Miles can be the best he can be. Many of these therapies are only partially covered by insurance if at all.
We are launching the "Miles to Go" campaign to raise funds for therapy that is not covered by insurance. Even if you are unable to donate there are other ways you can help. Liking Miles' Facebook page, sharing this website and video with your social network or by simply leaving a comment of support are all ways you can help.
Since Miles is so young his brain maintains much of its plasticity and potential for improvement. Now is the time when intensive therapy will provide maximum results. Please help Miles continue his fight; every little bit makes a difference! He has made tremendous strides but he still has Miles to go!
Checkout Miles' story on YouTube:
http://youtu.be/8o1LHJgrtjo
Follow Miles' progress on Facebook:
https://www.facebook.com/MilesCobbSellai
For those of you who don't know me, my name is Miles Henry Cobb Sellai and I am two years old. I live in San Francisco with my mom, dad, big sister Rose and baby brother Reid. On April 30, 2012 I was a happy, healthy baby boy - walking, talking, and even taking swim lessons! I had just started "giving hugs" by laying my head on everything from my sister, to my dog Daisy to show my love.
On May 1st, the unthinkable happened. I was eating breakfast with my sister when I aspirated a banana into my lungs. My parents rushed me to the pediatric emergency department where I seemed okay at first. The last thing I remember is dancing on the exam table with a musical toy to lighten the mood. The doctors were about to take me into the operating room for a routine procedure where they would put a camera down my throat to remove the banana and make sure my lungs weren't obstructed. Here is what my mommy wrote about that day:
"Please send prayers for Miles, he is in the OR at CPMC. He aspirated some food this morning. Will update when we have more news."
But the routine procedure turned into an emergency. Later that day, my mommy explained:
"Pray as hard as you can for Miles. He was coded during surgery, stable now, will have to wait to see for brain and lungs recovery. Please pray."
Mommy told me that everyone was praying for me. Even though I wasn't awake, mommy and daddy stayed by my side day and night, hoping and praying that I would wake up without any brain damage. They thought the worst was over and updated all of our friends and family:
"Thank you for all the prayers. Miles is stable in the PICU, the next 24 hours will be critical, he will then be weaned off of his breathing tube and sedation. Docs are hopeful there was no damage to his brain and are watching him closely for infection. Will update when we have more info."
I still wasn't awake, but my mommy and daddy were optimistic. They had no idea of the long road ahead. Here are some things my mommy wrote about what happened next:
May 1, 2012 - "Thank you so much everyone. Im reading your msgs of hope and love through my tears, it means to much. Miles remains stable; Drs. expect to begin weaning him off sedation and remove his breathing tube tomorrow. They are optimistic that he did not suffer brain damage and continue to watch him closely for infection. He continues to need your positive thoughts and prayers. With much love & appreciation."
May 2, 2012 - "Finally some good news!! MRI showed a normal brain with no indication of injury. We are beyond relieved and expect our little boy to come back to us soon. Although he remains sedated and on a ventilator, the doctors continue to be optimistic and we are very thankful Miles is in good hands. Thank you so much for all of your kind msgs and offers of support!! Xoxo"
May 3, 2012 - "Today we are focusing on getting Miles' lungs healthy and operating on their own. He is fighting pneumonia brought on by the foreign bodies that entered his lungs. We are hopeful that he will be taken off sedation and the ventilator within the next 24 hours. Looking forward to seeing those baby blues! Thank you again for all the love and prayers, your msgs are helping us keep it together!"
May 4, 2012 - "They removed Miles' breathing tube this morning and his airway swelled closed. He has since been reintubated and is once again stable. The new plan is to let him recuperate, put him on steroids and anti-inflamatories, then do another attempt on Monday in the OR with all hands on deck. He continues to need every prayer in your heart. I am holding on with every hope of my being that I will be holding my baby boy soon. Hug your babies close."
Despite all the prayers for my full recovery, things kept getting worse:
May 6, 2012 - "Miles has begun to have some seizures which indicates that his brain probably suffered some type of injury while he was without oxygen. We will not know the extent until he is awake and able to have a proper neuro eval. His CT scan came back normal and they are testing his spinal fluid for bacteria to rule out brain infection. Respiratory wise he is doing better, xrays are improving and he is responding well to treatment. Once the swelling in his airway has significantly decreased they will remove him from the ventilator, sometime between Monday and Wednesday. We remain hopeful and knowing that he is in your thoughts is giving us some peace during this very difficult time."
May 8, 2012 - "The last 24 hours have been challenging. Miles has had a couple of issues with his breathing tube but is once again stable. Although his initial MRI, CT scan, and other lab results have come back normal, Miles has some unexplained issues that seem to indicate there may be some swelling in his brain. Another MRI is scheduled for this afternoon. The swelling in his trachea has improved yet his lungs have regressed slightly. They are testing him for various infections including RSV, which he battled with last December. One step forward, 2 steps back is how things seem to be going. We feel that good news just has to be around the corner. we are trying to stay strong for our sweet boy and he continues to fight. Keep those positive thoughts and prayers coming, we all feel your love."
May 9, 2012 - "Today was a very difficult day. The MRI taken this afternoon showed that Miles does have swelling in his brain. Brain injuries and recovery differ so much from person to person it is impossible for the neurologist to tell us what to expect until he is awake. We are now in a holding pattern, fighting to keep Miles stable while waiting for the swelling to subside. Once that happens the doctors can then begin to examine him for respiratory capability to see if he can be safely removed from the ventilator. So we wait and wait some more and continue to pray for his little body to keep fighting the good fight. For now he is comfortable and being very well cared for by the amazing pediatric team here at CPMC. We are digging deep inside ourselves to find the strength to get through this horrible nightmare. Thank you so much for all the messages, although I haven't been able to respond, I've read each and every one."
My mommy is so strong, despite the nightmare we were living, she stayed strong for me. Later that day she shared:
"Today I have regrouped and am focusing on what we do know. We know that his lungs continue to improve, his fevers and seizures have subsided and the swelling in his trachea has reduced to a level where it is safe to extubate. The goal is to attempt to remove his tube on Friday morning with him continuing to wean from both ventilator support and sedation over the next two days. I have a feeling deep inside me that he will be ok and no matter how many blows we have taken that feeling always returns. It may be denial or survival, but for now I am finding some hope and peace in those maternal instincts."
May 10, 2012 - "The last two days have been relatively uneventful with just a few hiccups. Miles' body is continuing to heal and he has become more stable respiratory wise. The OR is booked for 8:10 am to remove his tube in a very controlled environment with a team of doctors at his side. The neurologist has informed us that it will take a good 3-4 days for all of the meds to exit his system which is necessary to get an accurate baseline evaluation. If the extubation is successful I expect to have my hands full but will try to keep everyone updated as best I can. We pray that his brain injury will be minor and are putting lots of hope into the fact that Miles' brain is so young. Keep him in your thoughts tomorrow morning, he will need all the positive energy he can get!"
May 11, 2012 - "Miles had a successful procedure this morning! He is breathing well on his own and remains stable. The plan is to keep him partially medicated so he is relaxed and comfy. He will recover through the weekend and then on Monday they will start to evaluate his neurological status. We are breathing a huge sigh of relief as are his massive team of doctors. I feel a lightening in the air all around the PICU today! Sending so much love back out to our friends and family for your continued prayers and support! You are holding us up with your love."
May 15, 2012 - "The last few days we've been trying to keep Miles as comfortable as possible. His body is having a hard time coming off of the sedation meds and he's been experiencing intense withdrawal side effects. The doctors are trying to find the right balance of medications that will keep him comfortable yet allow him to become more alert. It is still hard to measure the extent of his brain injury since they don't know if his continued sleepiness is due to injury or due to meds. Respiratory wise he is doing great; his lungs and airways have continued to heal and normalize. We expect in the next week or so to be transferred to Oakland Children's hospital so he can begin rehabilitation. Thank you for your continued prayers and support during this very difficult time."
May 31, 2012 - "This week has been full of surprises and continued progress for Miles!! Highlights include delay of Gastrostomy surgery because Miles has shown so much interest in eating, gobbling up ice cream, vocal communication and to top it all off, Miles has been accepted into Oakland Children's hospital to begin rehabilitation!! We are transferring tomorrow and cannot wait to see what our little fighter has in store for us next!! This is the good news we've been desperately waiting for, the hundreds and hundreds of prayers and good thoughts are working! Thank you all for you continued love and support, lots of love!"
June 1, 2012 - "On our way to Oakland Children's!! Just a month ago we were devastated by the prospect of Miles needing rehab, today we are overjoyed and thankful that he has made it this far! Now we start the next chapter of his road to recovery!"
June 8, 2012 - "Starting to settle in here at Children's, it is a much different place than our previous digs. The rehab team is still working to get Miles' meds adjusted to keep him calm yet awake, probably will be another week before that is under control. Miles is still in the early stages of becoming more congnitively aware, but we have started to see changes in his body movements. He is becoming less stiff and has more control over the movements of his arms and legs. He has been trying to pull out his feeding tube which has been the first purposeful movement he's been able to accomplish with his arm and hand. Although his tube needs to stay in place we are very happy to see him repeatedly go after it since that would be a normal reaction for a 15 month old. We hope to have some idea of his prognosis and rehab plan in the next couple weeks. Thank you for your continued support this will be a long road for him, but we are keeping hope alive that he will be able to get back to his previous self!"
June 15, 2012 - "From the very beginning of this terrible ordeal, Miles has progressed at his own pace. Just as our hopes start to dwindle and the doctors start to doubt, Miles will surprise us by making a turn for the better. We again find ourselves at one of those turning points. The doctors are concerned about Miles' slow progress and lack of calm awake periods. 8 weeks post brain injury is the critical period where one would expect to see the most rapid improvement. We are now at a little over 6 weeks post injury and Miles still has a ways to go to fully 'wake up' from his coma state. We are hoping to see him improve leaps and bounds in this time period as it will make a huge impact on his long term prognosis. Like I've said from the beginning, no matter how many set back we've had, my inner mommy voice tells me he will come back to us! Miles is lucky to have a team of very dedicated doctors behind him and we have no doubt they will go above and beyond to help him be the best he can be! Please please keep up those prayers, he needs all the positive energy we can muster to give him the boost that he needs to keep improving! Mike and I are finding Children's to be extremely draining on the soul, every parent here is living their worst nightmare, so if you could say an extra prayer for all of us, we could sure use it. Continued thanks for all of your love and support!"
June 27, 2012 - Miles had surgery last week to have a feeding tube placed into his stomach. The past three weeks he has been unwilling to eat by mouth so the G-tube was placed to allow for feeding him long term. He did not handle the surgery well, and after a short stay in the ICU he is back on the rehab wing but still fighting back through a significant regression. The doctors have started to use terms like "severe injury" and "significant damage" so needless to say the past few days have been devastating. The type of injury suffered by Miles affects his entire brain making it difficult for it to remap or compensate for damaged areas. He can hear, smell, feel and taste, but he is unable to see or move his body in a purposeful way. We had previously seen his body relax and loosen to a normal position, but post-op he's experienced so much agitation the stiffness has returned. His eyesight has the potential to improve for up to a year, but any significant improvements in his cognitive awareness and physical abilities would be expected to happen in the 12 weeks post injury; Tuesday marked 8 weeks post injury. All along we have worked hard to keep each other's spirits up and remain hopeful in the face of our worst fears, but that task is becoming more difficult by the day. We are doing our best to keep it together and appreciate all the messages and support we've received from family and friends both near and far. I will keep updating with our discharge plans; I would expect we will be going home in the next couple of weeks barring a major turn-around for Miles. No harm in still hoping for a miracle!"
Just when it seemed like mommy and daddy were losing hope, I started to show some real signs of improvement. Here is what mommy had to say about it:
July 4, 2012 - "I mentioned before how just when all hope seems lost, Miles will surprise us by making a turnaround; well he has done it again! As of Monday he has progressed to a calm and awake state and has improved significantly. He is wanting to be held constantly, eyes wide open, moving his head around to track noises and showing the first signs of regaining some head control. Tonight he even ate some applesauce which was the first time he has eaten by mouth in a month! His body has returned to a relaxed state, and he has been making great strides in therapy. We haven't received any official report from his doctors on what this all means, but we are feeling the hope surge back with full force! Keep up the prayers for that miracle!! xo"
July 14, 2012 - "Well, the time has come; we just received the bittersweet news that Miles will be coming home and transitioning to outpatient therapy later this week. We are in the process of assembling a team of specialists and therapists (Team Miles) to make sure he has every opportunity to be the best he can be! Although we had hoped we'd be bringing him home more recovered, we remain hopeful that he will continue to make great strides. The last two weeks he has progressed leaps and bounds and his rehab specialists now believe he will fully make it out of a coma state. This means he has the potential to regain many of his previous functions! He is currently working on regaining head control and rolling; predictions are he should have these skills down pat in about a week. His next major skill will be learning how to sit up which they expect to take 2-3 months, hence it doesn't make sense for us to remain in the hospital for that extended amount of time. We've been told if he can sit up before 2 years old he will walk again, so predictions are that he will be ahead of course for that major milestone! His vision is coming back sooner than expected which means that although there was severe damage, his amazing brain is repairing itself! The better he can see, the faster he will meet his milestones, so this is a key element of his recovery. This is going to be a long road for him, but we know he can do amazing things so we'll fight right along side him all the way! I can't say it enough how grateful we are for all of the messages, meals, cards and love and support we've received from our friends and family; thank you for standing by us.
Much love, Elyse & Mike"
On July 19th I finally got to go home! While I know this was bittersweet for my parents, I also know that I can make great strides with the help of my family, team of therapists, and the rest of "Team Miles." I know my sister is happy to have mommy, daddy, and "Baby Miles" home!
Thank you for visiting my website and taking the time to read my story.
Love, Miles
Organizer
Elyse Cobb
Organizer
San Francisco, CA