Hey friends...
SO many of you have asked what is going on with my boy, Kai (age 7), so rather than write it out a million times, I figured I'd write a note to try to explain a bit (in a very sm nutshell version!) what is going on. Back in Nov.2010, Kai was taken via squad to the hospital for what we originally thought was a bad case of the flu, but turned out to be Juvenille Pancreatitis. This is very rare, especially when there is no family history of it, so the doctors were concerned. He spent a week in the hospital, and finally was able to come home and slowly re-adjust to a "normal" life. During that hospital stay though, I had mentioned to the dr that I had noticed some pretty serious balance issues with Kai. Looking back, I had noticed them his whole life, but wrote them off to "he's just a wiggly boy who likes to be active and not sit or stand still". Doctors had told me he was totally normal both in his movements and his speech whenever I had asked, and they said he would just grow out of the struggles he had. But that turned out to be wrong. His balance and coordination issues continued to be more noticeable, and he even "tipped" over at school and knocked his head on a cement wall when he was supposed to be standing in line outside for an activity. See, you and I have automatic brain signals constantly telling our muscles to fire and work to keep us still when we stand and when we sit. Kai's has a disconnect. His brain doesn't fire the messages, or there is a disconnect when it does fire the message, and often times his body doesn't try to correct until it's too late and he's tipped over. Drs began running tons of tests...from brain scans and MRIs to see if he had a brain tumor, to CAT scans, EEGs, EKGs, Nerve Conduction Studies, EMG studies, and every blood test under the sun. We've seen more specialists than I can even begin to count...and the vast majority of them tell us that "they just don't know. Kai is a complicated and unique case and they just don't know." That's the short version of what has gone on over the past 10 months :-) Needless to say, it's been a long and tedious process and we are still in the middle of it with no answers. Back in Jan, the neurologist here that is working on his case decided that he needed to see a Physical Therapist, an Occupational Therapist, and a Speech Therapist...each 1x per week. So just in case I was bored, I added that to my schedule and we've been faithfully going to various therapies 3x per week. We've been very blessed with incredible therapists who genuinely care and are totally wonderful with Kai, so that's a blessing!
Just a few weeks ago, the drs here decided to send us to another specialist down in Charlotte, NC. This particular dr is a very well knows pediatric neuro-muscular movement specialist. She TOTALLY cleared her schedule for Kai, and she spent 5 1/2 solid hrs with Kai and I as she examined him, asked loads of questions, did lots of tests, and committed to helping us work to get some answers. She has partnered us with more specialists at Duke who are doing a lot of the tests so that we don't have to go back and forth to Charlotte quite as much, so that's been a big blessing. Not to mention my AMAZING friends who have pitched in to help me with watching my kids during the LONG days of specialist visits. So now we wait again... currently, we are waiting on results from the Duke Geneticist that we had tests done with, as well as the EMG and NCS studies that he had done today. The results of these tests will determine what muscles that they will biopsy, as they are wanting to put him totally under and biopsy some of his affected muscles to try to get a closer look at what is going on. They have no answers, but have told us that there is a strong possibility that Kai either has some rare form of Muscular Dystrophy, or a form of Global Apraxia (I will let you google those if you want to know more about what we are struggling through). At this point, I'm just praying for some answers. Not knowing anything is worse than knowing, because we are stuck and unable to move forward to help him. He's not in pain, so that's a blessing! But he does know that something is wrong and that he's not like his other friends, and that has become increasingly difficult as he gets older.
So...that's a short version :-) We appreciate and treasure your prayers and encouragement. I won't lie, it gets really discouraging and tough at times to watch my boy struggle through daily activities that you and I take for granted and can do so effortlessly. He is a fighter, and he doesn't quit! I'm sure that is what has gotten him this far!! (the dr told him about 2 months ago that he would probably never ride his bike without training wheels like his friends because of his balance issues. But Kai set out to prove them wrong. He tried daily...with many tears and many falls, and 2 weeks later HE RODE ON HIS OWN! He's out to prove them all wrong!) :) I couldn't make it through each of the long weeks without my amazing friends...you know who you are...who have sacrificed time and energy to watch my other kids for hours and days on end so I could take Kai to all his appointments, who have cried with me and just listened as I vented. You each are a blessing! Thank you! Please continue to pray that the doctors will be able to find some answers SOON!!
I will try to keep you posted .... :-)
SO many of you have asked what is going on with my boy, Kai (age 7), so rather than write it out a million times, I figured I'd write a note to try to explain a bit (in a very sm nutshell version!) what is going on. Back in Nov.2010, Kai was taken via squad to the hospital for what we originally thought was a bad case of the flu, but turned out to be Juvenille Pancreatitis. This is very rare, especially when there is no family history of it, so the doctors were concerned. He spent a week in the hospital, and finally was able to come home and slowly re-adjust to a "normal" life. During that hospital stay though, I had mentioned to the dr that I had noticed some pretty serious balance issues with Kai. Looking back, I had noticed them his whole life, but wrote them off to "he's just a wiggly boy who likes to be active and not sit or stand still". Doctors had told me he was totally normal both in his movements and his speech whenever I had asked, and they said he would just grow out of the struggles he had. But that turned out to be wrong. His balance and coordination issues continued to be more noticeable, and he even "tipped" over at school and knocked his head on a cement wall when he was supposed to be standing in line outside for an activity. See, you and I have automatic brain signals constantly telling our muscles to fire and work to keep us still when we stand and when we sit. Kai's has a disconnect. His brain doesn't fire the messages, or there is a disconnect when it does fire the message, and often times his body doesn't try to correct until it's too late and he's tipped over. Drs began running tons of tests...from brain scans and MRIs to see if he had a brain tumor, to CAT scans, EEGs, EKGs, Nerve Conduction Studies, EMG studies, and every blood test under the sun. We've seen more specialists than I can even begin to count...and the vast majority of them tell us that "they just don't know. Kai is a complicated and unique case and they just don't know." That's the short version of what has gone on over the past 10 months :-) Needless to say, it's been a long and tedious process and we are still in the middle of it with no answers. Back in Jan, the neurologist here that is working on his case decided that he needed to see a Physical Therapist, an Occupational Therapist, and a Speech Therapist...each 1x per week. So just in case I was bored, I added that to my schedule and we've been faithfully going to various therapies 3x per week. We've been very blessed with incredible therapists who genuinely care and are totally wonderful with Kai, so that's a blessing!
Just a few weeks ago, the drs here decided to send us to another specialist down in Charlotte, NC. This particular dr is a very well knows pediatric neuro-muscular movement specialist. She TOTALLY cleared her schedule for Kai, and she spent 5 1/2 solid hrs with Kai and I as she examined him, asked loads of questions, did lots of tests, and committed to helping us work to get some answers. She has partnered us with more specialists at Duke who are doing a lot of the tests so that we don't have to go back and forth to Charlotte quite as much, so that's been a big blessing. Not to mention my AMAZING friends who have pitched in to help me with watching my kids during the LONG days of specialist visits. So now we wait again... currently, we are waiting on results from the Duke Geneticist that we had tests done with, as well as the EMG and NCS studies that he had done today. The results of these tests will determine what muscles that they will biopsy, as they are wanting to put him totally under and biopsy some of his affected muscles to try to get a closer look at what is going on. They have no answers, but have told us that there is a strong possibility that Kai either has some rare form of Muscular Dystrophy, or a form of Global Apraxia (I will let you google those if you want to know more about what we are struggling through). At this point, I'm just praying for some answers. Not knowing anything is worse than knowing, because we are stuck and unable to move forward to help him. He's not in pain, so that's a blessing! But he does know that something is wrong and that he's not like his other friends, and that has become increasingly difficult as he gets older.
So...that's a short version :-) We appreciate and treasure your prayers and encouragement. I won't lie, it gets really discouraging and tough at times to watch my boy struggle through daily activities that you and I take for granted and can do so effortlessly. He is a fighter, and he doesn't quit! I'm sure that is what has gotten him this far!! (the dr told him about 2 months ago that he would probably never ride his bike without training wheels like his friends because of his balance issues. But Kai set out to prove them wrong. He tried daily...with many tears and many falls, and 2 weeks later HE RODE ON HIS OWN! He's out to prove them all wrong!) :) I couldn't make it through each of the long weeks without my amazing friends...you know who you are...who have sacrificed time and energy to watch my other kids for hours and days on end so I could take Kai to all his appointments, who have cried with me and just listened as I vented. You each are a blessing! Thank you! Please continue to pray that the doctors will be able to find some answers SOON!!
I will try to keep you posted .... :-)
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