6 Months Later...
I am not really sure where to start or if anyone is even out there anymore looking at this blog but I have realized I could use an outlet to continue to share Logan's Journey. Logan is now 8 months old or 6 months adjusted and so much has happened in this short time. I guess I should start out by filling you all in on some of the things that were omitted originally in an attempt to focus on the happy and good vs the scary and unknown.
When Logan was about a month old, we received a call from the doctors that there were some issues with his cranial ultrasounds. What we came to find out is that Logan has bilateral cystic PVL (Periventricular Leukomalacia) which means that cysts formed on his brain and caused there to be "holes" in his white matter. This was caused by a lack of oxygen at some point in my pregnancy, whether it was before or after my water broke, at birth when he wasn't breathing or from being stuck in my pelvis, is something we will never know but it happened and we have been dealing with it as best as we can.
Logan has been seeing a Neurologist since being discharged from the hospital and receiving physical therapy weekly to help combat some of the effects of the PVL. PVL can cause high or low muscle tone in the body, flexibility issues, developmental delays as well as other issues such as vision problems and seizures. The main affects that we had noticed in Logan were high muscle tone in his legs, low muscle tone in his core, some leg scissoring, developmental delays and just overall flexibility issues (legs and hips were really tight). Through working with our physical therapist we have been able to help with some of these areas, he is now able to bring his feet to his mouth (assisted) and his hips have opened up but it is definitely a work in progress. We have also noticed some developmental delays, he is not yet rolling over, he is getting better at holding his head however due to his positioning invetro he prefers to look to his right. Also due to the low muscle tone in his core, he isn't able to sit unsupported but has seemed to make some progress. At our Neurologist appointment in February we were told that Logan was "moderate" and then in May were told that he had moved down to "mild" due to some of his progress which was great news to us!
Up to this point, Logan was a happy baby, smiling all the time and making some great eye contact with us. About 2 weeks ago that all kinda stopped and we started noticing him have little "startle fits" where he would splay his arms out to the side as if startled and they would come in clusters, anywhere from 5-30 at a time in about a 3-7 minute timeframes. They really started to become noticeable last Thursday and then when they happened on Friday morning as well I decided to look it up and see if I could find what may be causing this. After some research I was able to find a rare seizure disorder that looked very much like what Logan was doing called Infantile Spasms. These are caused by abnormal brain behavior called Hypsarrhythmia. I called the Neurologist's office that morning and spoke to our doctor who said he wanted to see Logan first thing Monday morning for an EEG to see if we were indeed having Infantile Spasms and if they could detect the Hypsarrhythmia.
Over the weekend we kept good track of the "episodes" and they seemed to get progressively more often and more annoying to him. So this afternoon we went in to the doctors office and got the EEG done to see what was going on. Within 3 minutes of the tech watching his brain behavior, she left the room and came back to let us know that the doctor would be seeing us that afternoon and was going to make room for us in his schedule. That was my first thought that my intuition and research were unfortunately correct. When we went into the meeting with the doctor he confirmed my fears that we were indeed looking at Infantile Spasms and his brain activity was abnormal.
From what I have read, this is a type of epilepsy (one of the worst types supposedly, I read catastrophic more times than I want to admit) that occur in children usually in the first year of life. The reason this is so bad is that it keeps the child from developing at all while the spasms are occurring as the brain is so full with this abnormal behavior it has no room to learn. Obviously, we learn the most and advance the most in these early years so it is very important to have the ability to progress or else we will have many more long term effects. Also, the lack of smiling and laughing is another symptom as he is just unable to really take in and enjoy what is around him.
So what do we do now? First we need to figure out what is causing the spasms to occur, there are two types of Infantile Spasms, symptomatic and cryptogenic. From the sounds of it, the cryptogenic is a better one to have with a better long term outlook however with his prematurity and the PVL the doctors imagine we have symptomatic instead. We are gonna have to run a ton of blood tests, chromosomal tests and do another MRI to see if we can figure out what the symptom is that is causing this. In the meantime, we are also going to have to start Logan on steroids and not just any steroids but massive doses that he will need to take via shots 2 times a day. They don't quite know why the steroids work (and it doesn't work on everyone) but there have been lots of cases that show it will cause the Infantile Spasms to stop and allow for his normal personality and development to get back in line. We are now waiting for the steroids to be delivered to our house and we are expected to start treatment on Monday if not sooner.
So this is the next step in Logan's Journey and I will be updating the blog again with our progress as we go through each new day / week of treatment to see if we will be one of the lucky ones who this does work on. I ask that you all please pray for our little man, he is such a fighter and has been through so much already that I know we can get through this as well but can definitely use the help!! I need my prayer warriors to form again and I thank you all for the positive thoughts and prayers headed our way.
Here are a few pictures of our sweet boy over the past couple of months...
When Logan was about a month old, we received a call from the doctors that there were some issues with his cranial ultrasounds. What we came to find out is that Logan has bilateral cystic PVL (Periventricular Leukomalacia) which means that cysts formed on his brain and caused there to be "holes" in his white matter. This was caused by a lack of oxygen at some point in my pregnancy, whether it was before or after my water broke, at birth when he wasn't breathing or from being stuck in my pelvis, is something we will never know but it happened and we have been dealing with it as best as we can.
Logan has been seeing a Neurologist since being discharged from the hospital and receiving physical therapy weekly to help combat some of the effects of the PVL. PVL can cause high or low muscle tone in the body, flexibility issues, developmental delays as well as other issues such as vision problems and seizures. The main affects that we had noticed in Logan were high muscle tone in his legs, low muscle tone in his core, some leg scissoring, developmental delays and just overall flexibility issues (legs and hips were really tight). Through working with our physical therapist we have been able to help with some of these areas, he is now able to bring his feet to his mouth (assisted) and his hips have opened up but it is definitely a work in progress. We have also noticed some developmental delays, he is not yet rolling over, he is getting better at holding his head however due to his positioning invetro he prefers to look to his right. Also due to the low muscle tone in his core, he isn't able to sit unsupported but has seemed to make some progress. At our Neurologist appointment in February we were told that Logan was "moderate" and then in May were told that he had moved down to "mild" due to some of his progress which was great news to us!
Up to this point, Logan was a happy baby, smiling all the time and making some great eye contact with us. About 2 weeks ago that all kinda stopped and we started noticing him have little "startle fits" where he would splay his arms out to the side as if startled and they would come in clusters, anywhere from 5-30 at a time in about a 3-7 minute timeframes. They really started to become noticeable last Thursday and then when they happened on Friday morning as well I decided to look it up and see if I could find what may be causing this. After some research I was able to find a rare seizure disorder that looked very much like what Logan was doing called Infantile Spasms. These are caused by abnormal brain behavior called Hypsarrhythmia. I called the Neurologist's office that morning and spoke to our doctor who said he wanted to see Logan first thing Monday morning for an EEG to see if we were indeed having Infantile Spasms and if they could detect the Hypsarrhythmia.
Over the weekend we kept good track of the "episodes" and they seemed to get progressively more often and more annoying to him. So this afternoon we went in to the doctors office and got the EEG done to see what was going on. Within 3 minutes of the tech watching his brain behavior, she left the room and came back to let us know that the doctor would be seeing us that afternoon and was going to make room for us in his schedule. That was my first thought that my intuition and research were unfortunately correct. When we went into the meeting with the doctor he confirmed my fears that we were indeed looking at Infantile Spasms and his brain activity was abnormal.
From what I have read, this is a type of epilepsy (one of the worst types supposedly, I read catastrophic more times than I want to admit) that occur in children usually in the first year of life. The reason this is so bad is that it keeps the child from developing at all while the spasms are occurring as the brain is so full with this abnormal behavior it has no room to learn. Obviously, we learn the most and advance the most in these early years so it is very important to have the ability to progress or else we will have many more long term effects. Also, the lack of smiling and laughing is another symptom as he is just unable to really take in and enjoy what is around him.
So what do we do now? First we need to figure out what is causing the spasms to occur, there are two types of Infantile Spasms, symptomatic and cryptogenic. From the sounds of it, the cryptogenic is a better one to have with a better long term outlook however with his prematurity and the PVL the doctors imagine we have symptomatic instead. We are gonna have to run a ton of blood tests, chromosomal tests and do another MRI to see if we can figure out what the symptom is that is causing this. In the meantime, we are also going to have to start Logan on steroids and not just any steroids but massive doses that he will need to take via shots 2 times a day. They don't quite know why the steroids work (and it doesn't work on everyone) but there have been lots of cases that show it will cause the Infantile Spasms to stop and allow for his normal personality and development to get back in line. We are now waiting for the steroids to be delivered to our house and we are expected to start treatment on Monday if not sooner.
So this is the next step in Logan's Journey and I will be updating the blog again with our progress as we go through each new day / week of treatment to see if we will be one of the lucky ones who this does work on. I ask that you all please pray for our little man, he is such a fighter and has been through so much already that I know we can get through this as well but can definitely use the help!! I need my prayer warriors to form again and I thank you all for the positive thoughts and prayers headed our way.
Here are a few pictures of our sweet boy over the past couple of months...
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| 6 months (4 months adjusted) 3.12.14 |
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| Just chillin! 4.26.14 |
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| I just love being outside!! 5.25.14 |
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| My Daddy is the GREATEST! 5.27.14 |
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Thank you for sharing sweetheart and bringing us up to date. We are here for you, Chris and Logan praying that this round of treatment will correct the issues Logan is having. I love you
ReplyDeleteLBD and his 'prayer warriors'!
ReplyDeleteGratitude and appreciation for all the love and support Logan Bradley, mommy & daddy receive from ALL...my precious one and only grandchild I love you so much
The prayer warriors in Texas are surrounding you, Logan, and Chris (and Grandma and Grandpa) with love and support. May God give you strength, courage, and peace during these scary days, and may he surround your precious Logan with his healing touch. Many blessings from Janet and Hal's small group!
ReplyDeleteThinking of you all and sending lots of prayers from Lincoln, Nebraska! Thank you for sharing, Melissa. It is a good outlet for you and we can be even more specific in our prayers. Sending love your way, always!
ReplyDeleteWe are sending you, Chris, and Logan positive thoughts from Texas. Life sent you an a different path than you planned and, although this uncharted path is sometimes challenging, you will always be supported in spirit, love, and understanding from friends, family, and virtual friends who read your blog. We will be cheering for Logan, and his endearing giggle, for every new achievement in his life. May you always feel the presence of love and positive feelings surrounding you through this journey.
ReplyDelete