It's Been a Long Time Coming
My apologies to those of you who have been begging me for an update on Jaylen's health. I have ignored almost all of you, and for that I really am sorry. I am tired. I am parenting so many people. I am swamped with doctor's appointments, housework, normal parenting issues, adjusting to life with five, backed up work from my business, major life changes in more areas than I could even share, and just a pinch of clinical depression.
Don't get me wrong, I am loving life with my sweet baby #5, and everyone is adjusting beautifully... but, it has been such a hard season for us. Tom's grandfather was diagnosed with pancreatic cancer just days after we brought Jaylen home, so all things normal have been flipped upside down as we process both this new baby person entering our family, at the same time a beloved elder is preparing to leave it. It has been so sad, and so hard to watch the family grieve and cope and care for him. I am proud to have married into such a remarkable family, though, and the love and joy they show to one another is rare to say the least. We have been treasuring any time we have with Papa, and the kids in particular are slowly processing what this all means.
I am more than overdue for an update on Jaylen's health, so I will briefly tell you what I know... which isn't much. At this point, the neurologist and audiologist believe that the type and amount of antibiotics that Jaylen was given in the NICU are what caused Jaylen's hearing loss. They also suspect that the level was toxic enough to also cause enough damage to his brain to cause developmental delays. We do not know how extensive his hearing loss is, or the neurological concerns for that matter. The next steps for the hearing will be at the end of this month, and the results of that will determine if/when the neurologist will put Jaylen under anesthesia for a full brain MRI.
So, it's not awesome.
This week, we have the cardiologist, a speech therapist and a physical therapist appointment. The two latter are early intervention evaluations provided through the county. I am thankful that we have so many free resources available to us through the county, especially since our insurance is committed to a staunch denial of payment for any and all services that cost more than a buck fifty. (Okay, it's not that bad, but, if everyone who worked for that insurance company was moderately tortured, I wouldn't speak up for the first few days or so... I'm just saying.)
Apart from that, I am trying to adjust to all the major changes in my life. Friendships, family dynamics, support network, etc... everything is under construction, and my neurons have responded by trying to convince me that the answer lies somewhere at the bottom of a can of sweetened condensed milk and an episode of Grey's Anatomy. I can tell you from
personal experience
an ancient Chinese proverb, that that is a lie from the pit of hell and neither ridiculously sweet milk, nor really bad TV will make you less depressed.
Jaylen has been sleeping through the night regularly, so I am getting back on my early morning routine, which is much more conducive to glorifying God and anti-depression than the aforementioned game plan. These early mornings consist of a 4:45am wake up time, going to Planet Fitness to work out and get back home in time to shower and do my Bible study before the kids get up at 7:00am for school. By the time the kids are starting school, I have been awake for five hours. It's total insanity, but it makes me way less insane in the long run. And if all goes well with my workouts, my butt will move back up to where it used to be. I figure an inch a month is a reasonable goal... so, I am looking forward to a normally placed fanny by Christmas of 2014. If I am successful, I am going to send detailed results in one of those Christmas newsletters that highlights family accomplishments. So, we can all be looking forward to that.
This season has, obviously, been very challenging and apart from Christ, I would be hopeless and unable to get out of bed every day. Apart from my faith in Christ, I would be overwhelmed with suffering and I would probably be a bitter, hunchbacked lady swearing at people in the grocery store. Apart from Christ, seasons like this would simply do me in. But, the reality is that I never have to live or breathe one breath apart from Christ... which is such good news indeed. I know I have a loooooong way to go in maturing and understanding who this Jesus person was and is, and what his life and death and (most importantly) his rising mean to me, but I know one thing for sure... I am helpless to do my story apart from His.
Can I get a witness.
Don't get me wrong, I am loving life with my sweet baby #5, and everyone is adjusting beautifully... but, it has been such a hard season for us. Tom's grandfather was diagnosed with pancreatic cancer just days after we brought Jaylen home, so all things normal have been flipped upside down as we process both this new baby person entering our family, at the same time a beloved elder is preparing to leave it. It has been so sad, and so hard to watch the family grieve and cope and care for him. I am proud to have married into such a remarkable family, though, and the love and joy they show to one another is rare to say the least. We have been treasuring any time we have with Papa, and the kids in particular are slowly processing what this all means.
I am more than overdue for an update on Jaylen's health, so I will briefly tell you what I know... which isn't much. At this point, the neurologist and audiologist believe that the type and amount of antibiotics that Jaylen was given in the NICU are what caused Jaylen's hearing loss. They also suspect that the level was toxic enough to also cause enough damage to his brain to cause developmental delays. We do not know how extensive his hearing loss is, or the neurological concerns for that matter. The next steps for the hearing will be at the end of this month, and the results of that will determine if/when the neurologist will put Jaylen under anesthesia for a full brain MRI.
So, it's not awesome.
This week, we have the cardiologist, a speech therapist and a physical therapist appointment. The two latter are early intervention evaluations provided through the county. I am thankful that we have so many free resources available to us through the county, especially since our insurance is committed to a staunch denial of payment for any and all services that cost more than a buck fifty. (Okay, it's not that bad, but, if everyone who worked for that insurance company was moderately tortured, I wouldn't speak up for the first few days or so... I'm just saying.)
Apart from that, I am trying to adjust to all the major changes in my life. Friendships, family dynamics, support network, etc... everything is under construction, and my neurons have responded by trying to convince me that the answer lies somewhere at the bottom of a can of sweetened condensed milk and an episode of Grey's Anatomy. I can tell you from
Jaylen has been sleeping through the night regularly, so I am getting back on my early morning routine, which is much more conducive to glorifying God and anti-depression than the aforementioned game plan. These early mornings consist of a 4:45am wake up time, going to Planet Fitness to work out and get back home in time to shower and do my Bible study before the kids get up at 7:00am for school. By the time the kids are starting school, I have been awake for five hours. It's total insanity, but it makes me way less insane in the long run. And if all goes well with my workouts, my butt will move back up to where it used to be. I figure an inch a month is a reasonable goal... so, I am looking forward to a normally placed fanny by Christmas of 2014. If I am successful, I am going to send detailed results in one of those Christmas newsletters that highlights family accomplishments. So, we can all be looking forward to that.
This season has, obviously, been very challenging and apart from Christ, I would be hopeless and unable to get out of bed every day. Apart from my faith in Christ, I would be overwhelmed with suffering and I would probably be a bitter, hunchbacked lady swearing at people in the grocery store. Apart from Christ, seasons like this would simply do me in. But, the reality is that I never have to live or breathe one breath apart from Christ... which is such good news indeed. I know I have a loooooong way to go in maturing and understanding who this Jesus person was and is, and what his life and death and (most importantly) his rising mean to me, but I know one thing for sure... I am helpless to do my story apart from His.
Can I get a witness.