I've been hesitant to write about Cale's health as of late, mainly because I don't want to jinx anything, but I figure it's time to put something positive and hopeful out there seeing that I am generally a very positive and hopeful person, despite the main content of my blog. I tend to put voice to the thoughts and emotions I rarely let anyone see or know about in this space as a way of 'getting it out'. Sometimes my husband and closest friends have no idea what I'm thinking until they read this, if they read this, and so one might assume I'm perpetually sad or cynical but nothing could be further from the truth. I am joyful, happy, always seeing my cup as half full, and more often content rather than discontent. Surprised?
So here's to voicing the positive and hopefulness of my life as of late.
Cale is doing, <gulp>, well. I feel like I need to whisper those words so as not to jinx anything. Alex and I have exchanged those words only a handful of times because we know that like with most things about Cale, it could change in a matter of minutes. BUT, ever since we switched Cale over to nighttime feedings he has seemed more comfortable throughout the day, more able to play without pain, and is without a doubt more active than before. He spends most of his day playing with his sister rather than laying on the floor and just seems plain happy. It's been a joy to experience this change in him and even though having him tube fed during the night isn't our ideal, it's working for him and we're just rolling with it. I've been able to stop myself from worrying about the future and how we're going to get rid of that stupid pump and it's truly let me relax and remain relatively stress free. It's been amazing.
We've also seen an improvement in his oral eating and I love having to tell him to stay out of the pantry! He loves pretzels and will sneak them all day long if I'm not watchful. Who knew I would have to tell him 'no' to food?!
Also, I may have forgot to mention a rather large change that happened in our lives a few months ago. My dad found himself looking for a new job after an unexpected and sudden change with his employer of over twenty years. His job search landed him a new and better position...in Texas! So after the quick sale of my childhood home and lots of work on my mom's part they up and moved to Beaumont, TX. I was initially very sad that they would be so far away and seemingly not as involved in the growing up of my children's lives, but I've since regained a tremendous amount of peace with their move and am happy for their new adventure. Texas will not be forever, or so I tell them.
With that said and out of the way, I am surprising Cale with a trip to see them over Memorial Day weekend. For those of you that know Cale you know that he absolutely loves airplanes and airports, almost as much as he loves my parents, and he asks about going to Texas to see them on a near regular basis. Alex has been traveling quite a bit for work over the last few months which has left me alone with the kids more often than I would like, and so I am so excited for the break and change of pace. I initially was going to fly down there by myself and have a true mini vacation, but something inside of me made me want to bring Cale along for the journey. I am very much looking forward to having some one-on-one time with my favorite oldest boy and surprising him with this trip is going to be priceless! I haven't figured out the details of how I'm going to share the news with him but I do know that he won't know until a day or two before we leave because otherwise he will drive me CRAZY! He tends to ask the same question over and over and over and over again, and I just know he would ask me how long until we leave at least a hundred times a day. It's best that we just leave it as a surprise. :) I can't wait to see my parents again and see their new life.
Riley and Cash often get neglected in this space and I tend to believe no news is good news, but I realize some of you may wonder what's going on with them. Cash is going to be ten months old tomorrow and the days are ticking by until Riley will turn four in July. I can't believe how fast the time is going! They are best pals and no one can make Cash smile like Riley can. Every afternoon, without fail, Riley will hear Cash stirring after waking up from his nap and she will go into his room, shut the door, and I will hear squeals and giggles for the next half hour. I would love to be a fly on the wall and see what they do in there! Cash remains incredibly laid back and is one of the happiest babies I know while Riley gives me more of a run for my money. She's opinionated, dramatic, and thinks she's wiser far beyond her years but deep down has a very tender heart. She's shy in a large group of kids but definitely has her BFF's. She loves to learn and continues to be one of Cale's strongest advocates. She knows all of his signs and often interprets to us what he's saying when we can't figure it out! I can only hope Cash picks up on sign language as quickly as she did. With these three kids our family is complete, and even though life is incredibly busy and chaotic I wouldn't change a thing.
I really wouldn't.
Life is good.
Friday, May 11, 2012
Monday, May 7, 2012
eeny meeny miny mo
For those of you who read my previous post you know that we are currently in the middle of registering Cale for kindergarten. For many moms this process is mostly exciting with a few drops of bittersweet mixed in. For me, the entire month of April has been filled with anxiety over which school to choose and whether of not we should push for Cale to be as involved in a regular classroom as possible. I've lost countless hours of sleep and have generally felt like I'm living in some sort of cruel nightmare.
Until yesterday.
We had a meeting at the school Cale was originally "assigned" to, Hawthorne Elementary. I walked in and immediately noticed the uncleanliness, the disarray of library books on the shelves, and the dated look of this school. Its library also had a pet rat. Chief Charlo, the school I so badly want all of my children to go to, is a relatively new school and so its appearance is much more attractive than what I was witnessing right now. And this school had no rat. I kept telling myself to keep an open mind but I knew that even before talking with anyone I had already made up my mind.
I am not letting my son go to this school.
We finally made our way into the room where a team of teachers waited eagerly to meet one of their possible future students. I forced a smile on my face and introduced my family to each unfamiliar person. Cale was extremely nervous and suspiciously studied each person and signed to me that they were "different" from his teachers at preschool. Yes, these teachers are different. They went on to give us a brief summary of what a day in kindergarten might look like for Cale. They thought it would probably be best to make the extended resource room his "home base" and then as he became more at ease with that to slowly integrate him in the regular classroom as much as he felt comfortable. As soon as they pitched this idea to me I immediately shut down. Without saying it, I had made up my mind. Cale will not be going to this school.
We left the meeting with the understanding that we would try and reach a decision within the next couple of weeks, even though I had already chosen the school for Cale; the best school, Chief Charlo.
On the drive home, however, I felt an unexplainable uneasiness. I knew I didn't want Cale going to that school but for some reason the idea of Cale going to Chief Charlo wasn't settling well with me either. Something inside me kept tugging me back to that extended resource room where we had just met. My thoughts kept wandering back to the bubbly, young-faced teacher who had showed such genuine care for Cale and his future education. I knew the moment I first saw this young lady that if I engaged in too much of a meaningful conversation with her that she would be one of those people I just couldn't help but fall in love with. So I didn't. I simply sat there and took in the information she was giving us. Miss Liz was her name and she warmly pleaded for us to choose her as Cale's teacher.
That night Alex and I sat down together after putting our kids to bed and discussed the happenings of our day. The longer I sat there talking with him the more I realized that in the process of choosing the best school for Cale that I was really just interested in choosing the best school for me. What school is going to make me feel better? What school would hide the embarrassment I was feeling about Cale not being "normal" enough to be in a regular classroom? I realized how selfish I had been in pushing Cale to be in a regular classroom. Chief Charlo was telling us that mainstreaming him would not be a problem where as Hawthorne cautioned us by placing him in the extended resource room. My pride and my own insecurities are what I was truly placing first, not Cale.
Once again I'm experiencing the death of a dream. Once again I'm seeing how change spotlights Cale's differences. But for some reason, and I'm sure only by God's provision and grace, I am at peace. It's okay that we won't be attending 'Kindergarten Roundup" with all of the other excited parents. It's okay that Cale will spend his first year of kindergarten in a special education classroom.
It's okay.
It's really okay.
And not only is it okay, but it is what's best.
I've finally come to the realization that what I may think is best for Cale is really just a mask hiding what I think is best for me. No parent wants to readily admit that their child is better suited for a special resource
room with limited access into a regular classroom with other normal kids. Or at least I should I wasn't ready to admit that. I've tried my hardest to let Cale have normal childhood experiences, which I think is a great thing and will benefit him positively throughout his life, but there comes a time when I need to stop pushing for 'normal' and let Cale be who he is and trust that he will succeed no matter what, just as he is.
And I truly believe that. Cale will succeed no matter what. Not because of what I've done or the decisions we've made, but because Cale is smart, driven, exceptionally persistent, and one of the hardest workers I've ever known. He will without a doubt endear himself to his future teachers and excel at whatever learning plan is set before him.
I talked with Cale's current preschool teacher this morning and she asked me if we had made a decision yet about which school we've chosen. I told her I thought we were leaning towards Hawthorne, which is the first verbal commitment I've made towards choosing that school and a big step for me personally.
Before having children I never gave a second thought to having to choose a school for my child. Growing up I went to the the school that I lived closest to, simple as that. I never thought that once having my own kids that it would be such a difficult decision, but I think I've grown a lot in this journey and learned a few important lessons in the short few weeks we've had this on our minds.
Sometimes I think it's my job to teach Cale about life, but other times I think God gave me Cale for him to teach me about life.
Maybe it's both.
Until yesterday.
We had a meeting at the school Cale was originally "assigned" to, Hawthorne Elementary. I walked in and immediately noticed the uncleanliness, the disarray of library books on the shelves, and the dated look of this school. Its library also had a pet rat. Chief Charlo, the school I so badly want all of my children to go to, is a relatively new school and so its appearance is much more attractive than what I was witnessing right now. And this school had no rat. I kept telling myself to keep an open mind but I knew that even before talking with anyone I had already made up my mind.
I am not letting my son go to this school.
We finally made our way into the room where a team of teachers waited eagerly to meet one of their possible future students. I forced a smile on my face and introduced my family to each unfamiliar person. Cale was extremely nervous and suspiciously studied each person and signed to me that they were "different" from his teachers at preschool. Yes, these teachers are different. They went on to give us a brief summary of what a day in kindergarten might look like for Cale. They thought it would probably be best to make the extended resource room his "home base" and then as he became more at ease with that to slowly integrate him in the regular classroom as much as he felt comfortable. As soon as they pitched this idea to me I immediately shut down. Without saying it, I had made up my mind. Cale will not be going to this school.
We left the meeting with the understanding that we would try and reach a decision within the next couple of weeks, even though I had already chosen the school for Cale; the best school, Chief Charlo.
On the drive home, however, I felt an unexplainable uneasiness. I knew I didn't want Cale going to that school but for some reason the idea of Cale going to Chief Charlo wasn't settling well with me either. Something inside me kept tugging me back to that extended resource room where we had just met. My thoughts kept wandering back to the bubbly, young-faced teacher who had showed such genuine care for Cale and his future education. I knew the moment I first saw this young lady that if I engaged in too much of a meaningful conversation with her that she would be one of those people I just couldn't help but fall in love with. So I didn't. I simply sat there and took in the information she was giving us. Miss Liz was her name and she warmly pleaded for us to choose her as Cale's teacher.
That night Alex and I sat down together after putting our kids to bed and discussed the happenings of our day. The longer I sat there talking with him the more I realized that in the process of choosing the best school for Cale that I was really just interested in choosing the best school for me. What school is going to make me feel better? What school would hide the embarrassment I was feeling about Cale not being "normal" enough to be in a regular classroom? I realized how selfish I had been in pushing Cale to be in a regular classroom. Chief Charlo was telling us that mainstreaming him would not be a problem where as Hawthorne cautioned us by placing him in the extended resource room. My pride and my own insecurities are what I was truly placing first, not Cale.
Once again I'm experiencing the death of a dream. Once again I'm seeing how change spotlights Cale's differences. But for some reason, and I'm sure only by God's provision and grace, I am at peace. It's okay that we won't be attending 'Kindergarten Roundup" with all of the other excited parents. It's okay that Cale will spend his first year of kindergarten in a special education classroom.
It's okay.
It's really okay.
And not only is it okay, but it is what's best.
I've finally come to the realization that what I may think is best for Cale is really just a mask hiding what I think is best for me. No parent wants to readily admit that their child is better suited for a special resource
room with limited access into a regular classroom with other normal kids. Or at least I should I wasn't ready to admit that. I've tried my hardest to let Cale have normal childhood experiences, which I think is a great thing and will benefit him positively throughout his life, but there comes a time when I need to stop pushing for 'normal' and let Cale be who he is and trust that he will succeed no matter what, just as he is.
And I truly believe that. Cale will succeed no matter what. Not because of what I've done or the decisions we've made, but because Cale is smart, driven, exceptionally persistent, and one of the hardest workers I've ever known. He will without a doubt endear himself to his future teachers and excel at whatever learning plan is set before him.
I talked with Cale's current preschool teacher this morning and she asked me if we had made a decision yet about which school we've chosen. I told her I thought we were leaning towards Hawthorne, which is the first verbal commitment I've made towards choosing that school and a big step for me personally.
Before having children I never gave a second thought to having to choose a school for my child. Growing up I went to the the school that I lived closest to, simple as that. I never thought that once having my own kids that it would be such a difficult decision, but I think I've grown a lot in this journey and learned a few important lessons in the short few weeks we've had this on our minds.
Sometimes I think it's my job to teach Cale about life, but other times I think God gave me Cale for him to teach me about life.
Maybe it's both.
Saturday, April 21, 2012
Having a child with special needs sure makes life interesting and keeps me on my toes. I've always said there is never a dull moment in our household and, oy, has that been ringing true lately. Some days I feel as though life is comparable to a relaxing day at the beach; sitting with my toes buried in the sand while sipping a fruity umbrella drink and getting a tan. Life is good. Other days, not so much. Sometimes I feel like life has me on the course of a crashing wave, constantly beating and churning me beneath the waves, never allowing me to come up for air. And oddly enough the days at the beach are on a fairly predictable cycle. Change is the one determining factor in what makes the difference between a sunbathing kind of day and a drowning kind of day.
We are embarking on another season of change at the Burkhalter household and so far this whole experience has left me gasping for air: the beginning stages of transitioning Cale into kindergarten.
Let me give you a moment to let that sentence sink in.
Yes...kindergarten!
I can hardly believe my little three pound preemie is starting kindergarten next year. When did I become old enough to have a child that old? Eeesh.
With his last year of preschool winding down, we met with his teacher for a regularly scheduled parent teacher conference last week. I love these conferences because it's always a time when we get to hear from his teachers how amazing our little guy is. They seem to have all fallen in love with him over the past two and a half years and his educational circle has become a place of comfort for both Cale and me. It's apparent they have a genuine desire for anything and everything that is in his best interest and as a parent, there is no greater feeling than having other people root for your child as much as you do.
Towards the very end of this meeting as we were wrapping things up, his teacher put a little sticky note atop of our papers that had the date and time for our official transition meeting into kindergarten. It was set for April 26th at Hawthorne Elementary School.
Hawthorne Elementary School???
But we live a five minute walk away from Chief Charlo, the school we have been planning for all of our children attending. Chief Charlo, the school my fellow special needs moms have given their stamp of approval. Chief Charlo, the school that was a big deciding factor into the purchase of our house. Chief Charlo, my dream school for my kids.
Needless to say, that little sticky note came as a complete surprise. I fumbled through my words and asked why our transition meeting into Chief Charlo was taking place at a different school. His teacher simply responded by saying, "because that's where he'll be going next year." It was obvious to her then that we had no idea this was coming. In true Erica fashion I broke into tears and we left the meeting agreeing to meet with the head of the special needs program in our school district do discuss our options.
We had that meeting earlier this week. I was far more prepared this go around to deal with things emotionally, aka no crying. They explained their thought process into assigning Cale to a different school other than his neighborhood school. They did a good job of listing the pros and cons to each and I left the meeting feeling more prepared to make this decision. We are going to try and quickly squeeze in a meeting with both principals, and hopefully maybe even observe a kindergarten class at both schools before we need to make our final decision. I feel good about being proactive in deciding where he'll spend the next six years and when all is said and done, I can say that Alex and I did our homework, gave it our all, and then hopefully remain at peace knowing that God already knows each and every one of Cale's future teachers, and that no matter what building he's in, it's the one God has chosen in advance for him.
Aside from going back and forth between schools, we also talked about what a regular day in kindergarten might look like for Cale. I'm ashamed to admit that this conversation is something that has burned a hole in the back of my brain from letting it sit there too long. I've purposely avoided trying to think about what school is going to be like for him. I remember my own thoughts and behaviors towards kids with special needs and one of my greatest fears for Cale is that he'll be treated that same way. Kindergarten is going to expose him to a whole different world and I'm scared for his innocence and sense of worth being crushed. My desire is to have him in a regular classroom as much as possible but I'm starting to doubt what is best. Academically he is right there with his peers but the communication aspect of learning will without a doubt pose a huge threat to his involvement in the classroom. I want him to feel accepted and valued and I'm so scared for how other children might treat him.
My hope is that we as parents have instilled a greater sense of self worth in him that even the occasional bully at school cannot destroy and that God would keep a constant protection around his heart.
I'm prayerful that this season of change in our lives - in his his life - will not beat us beneath the waves. I believe God will direct us and help us in choosing the best school for him, but it's always these changes that seem to shine a spotlight on how different our lives are from our friends' lives. Embarrassing as it is to admit this, I'm battling extreme jealousy over my friends who get to choose where their children go; some get to homeschool their kids while others get to place their kids in a Christian school. Options for Cale's education are limited, and heading into our first year in the public school system is really making me realize how much that stinks.
Sometimes life just stinks and it doesn't seem fair.
We are embarking on another season of change at the Burkhalter household and so far this whole experience has left me gasping for air: the beginning stages of transitioning Cale into kindergarten.
Let me give you a moment to let that sentence sink in.
Yes...kindergarten!
I can hardly believe my little three pound preemie is starting kindergarten next year. When did I become old enough to have a child that old? Eeesh.
With his last year of preschool winding down, we met with his teacher for a regularly scheduled parent teacher conference last week. I love these conferences because it's always a time when we get to hear from his teachers how amazing our little guy is. They seem to have all fallen in love with him over the past two and a half years and his educational circle has become a place of comfort for both Cale and me. It's apparent they have a genuine desire for anything and everything that is in his best interest and as a parent, there is no greater feeling than having other people root for your child as much as you do.
Towards the very end of this meeting as we were wrapping things up, his teacher put a little sticky note atop of our papers that had the date and time for our official transition meeting into kindergarten. It was set for April 26th at Hawthorne Elementary School.
Hawthorne Elementary School???
But we live a five minute walk away from Chief Charlo, the school we have been planning for all of our children attending. Chief Charlo, the school my fellow special needs moms have given their stamp of approval. Chief Charlo, the school that was a big deciding factor into the purchase of our house. Chief Charlo, my dream school for my kids.
Needless to say, that little sticky note came as a complete surprise. I fumbled through my words and asked why our transition meeting into Chief Charlo was taking place at a different school. His teacher simply responded by saying, "because that's where he'll be going next year." It was obvious to her then that we had no idea this was coming. In true Erica fashion I broke into tears and we left the meeting agreeing to meet with the head of the special needs program in our school district do discuss our options.
We had that meeting earlier this week. I was far more prepared this go around to deal with things emotionally, aka no crying. They explained their thought process into assigning Cale to a different school other than his neighborhood school. They did a good job of listing the pros and cons to each and I left the meeting feeling more prepared to make this decision. We are going to try and quickly squeeze in a meeting with both principals, and hopefully maybe even observe a kindergarten class at both schools before we need to make our final decision. I feel good about being proactive in deciding where he'll spend the next six years and when all is said and done, I can say that Alex and I did our homework, gave it our all, and then hopefully remain at peace knowing that God already knows each and every one of Cale's future teachers, and that no matter what building he's in, it's the one God has chosen in advance for him.
Aside from going back and forth between schools, we also talked about what a regular day in kindergarten might look like for Cale. I'm ashamed to admit that this conversation is something that has burned a hole in the back of my brain from letting it sit there too long. I've purposely avoided trying to think about what school is going to be like for him. I remember my own thoughts and behaviors towards kids with special needs and one of my greatest fears for Cale is that he'll be treated that same way. Kindergarten is going to expose him to a whole different world and I'm scared for his innocence and sense of worth being crushed. My desire is to have him in a regular classroom as much as possible but I'm starting to doubt what is best. Academically he is right there with his peers but the communication aspect of learning will without a doubt pose a huge threat to his involvement in the classroom. I want him to feel accepted and valued and I'm so scared for how other children might treat him.
My hope is that we as parents have instilled a greater sense of self worth in him that even the occasional bully at school cannot destroy and that God would keep a constant protection around his heart.
I'm prayerful that this season of change in our lives - in his his life - will not beat us beneath the waves. I believe God will direct us and help us in choosing the best school for him, but it's always these changes that seem to shine a spotlight on how different our lives are from our friends' lives. Embarrassing as it is to admit this, I'm battling extreme jealousy over my friends who get to choose where their children go; some get to homeschool their kids while others get to place their kids in a Christian school. Options for Cale's education are limited, and heading into our first year in the public school system is really making me realize how much that stinks.
Sometimes life just stinks and it doesn't seem fair.
Friday, April 6, 2012
update
I feel like a loser. I have totally neglected this space and, truth be told, I don't think I've been in a very good place to give an update on what's been going on in our life. I've sat down at my computer numerous times to try and write it all out but the right words just never seem to flow. My mind has been flooded with what seems like a thousand different thoughts and emotions and trying to make sense of it all has been extremely overwhelming. It probably doesn't help that those thoughts and emotions seem to change on a daily basis. I think I've finally found a topic to write about that seems somewhat manageable, and that is a question I get on a near daily basis:
How is Cale doing?
I never really know how to answer that question. My base line for how he's doing is so skewed because he's never doing well, good, or great. We are at a place in life where I never wanted to be and even though Cale can't express his thoughts, I'm fairly certain he is sad about where we're at, too.
It's been three months since Cale's surgery and it seems as though that surgery fixed absolutely nothing. Okay - not nothing - but the pain and discomfort with eating is still present, if not worse, and we've found ourselves taking several steps backwards in order to try and maintain his quality of life.
After much trial and error Cale is now being tube fed continuously through the night. We have eliminated all daytime feedings, with the exception of the few bites of solid food he gets when he sits down at the table with us, but we now have to come to terms with the fact that Cale is 100% reliant on a machine to feed him and give him the nutrition he needs to grow. That stupid pump is still an eyesore in his bedroom and I have yet to get used to seeing it beside his bed. The good news is that he has been a tremendous trooper with everything and he tolerates being hooked up at night like a champ. He has only turned off his pump once, which is highly amazing considering the fact that he loves anything technology, and he waits patiently for Alex to come and unhook him in the morning so that he can get out of bed. He truly has been the one thing that has made this transition bearable. I can't imagine how we would do this if he were defiant towards all of the changes that have had to take place.
We made the decision to eliminate his daytime feedings because he was in so much debilitating pain after each feeding. It was getting to the point where he would spend most of the day laying on the ground because of his level of discomfort, and even though Cale has his challenges, he's never been the type of kid to be so sedate and inactive. It was heartbreaking to see him not want to play with his sister and even more heartbreaking to see him lose such luster for life. Going places was almost not an option and we all were becoming incredibly stir crazy. I felt extreme guilt for keeping Riley from play dates with her friends and after speaking with his dietician, we finally made the decision to quit feeding him during the day in hopes of making him more comfortable. This decision hasn't been a quick fix because any amount of food or liquid to hit his stomach will send him in a tizzy, so that means one goldfish cracker or one sip of water, but we have noticed the past couple of weeks that things seem to be better. I'm able to go to the grocery store or send him off to school without incurring a bout of severe anxiety. We've been puzzled by the fact that he seems so miserable during the day when he eats and yet he seems to tolerate "eating" at night just fine. I've only recently conjured that he's simply just used to the discomfort and since he's laying down the entire time at night he's able to "make it through". I do think the continuous feeding is interrupting his sleep because he's back to taking naps during the day and when I wake up in the middle of the night to feed Cash I can hear him in his bedroom rustling around or kicking his feet against the wall. All in all, though, it has been a huge relief to know that he's getting all the nutrition he needs to grow.
Since the surgery wasn't the miraculous answer we thought it would be, we are now working on making a plan for what's next. We have been diligent in documenting absolutely EVERYTHING that goes on in Cale's life. If he gets a sip of water, we write it down. If he goes to the bathroom, we write it down. Anything and everything gets written down in the hopes that whichever kind of doctor/specialist we decide to see next, we will have the absolute best information to give them so that they can have the best chances of helping Cale. We are also in the beginning stages of getting Cale approved for in-home nursing. This step in our journey is almost due an entire post of its own because there are so many emotional hurdles that I've had to jump over to come to terms with this, but our goal of the nursing is to have a medically correct documentation of what life is really like for Cale. It's one thing for me or Alex to tell a doctor what's going on, but I think it will be entirely different coming from a nurse who can observe Cale during his feedings. Having a nurse in our home will be extremely invasive and I can't even really wrap my mind around what this will be like, but I have to remind myself that this is only temporary and it's serving as an important step in reaching our goal to make Cale's life better.
All of this is to help make his life the best that it can be and I truly believe his life can be, and will be, great. It's just taking an awful lot to get there.
I'm not really sure I did the best at answering the question of how Cale is doing. Aside from the pump feedings and the hassle that goes along with that, he's doing okay. The surgery didn't accomplish what we thought it would and he isn't magically surviving off table food like some people imagine. He's able to chew and swallow five or six bites of whatever we're eating but it's going to be a long, hard road to not only eliminate the pain that comes from eating, but also learning how to eat since that's something he hasn't been able to do during the last five and a half years of his life. We're making progress and we just take it one day at a time.
So there it is. An update on Cale! Hopefully my next post can be lighter and more positive. I can't wait to write about Cash...can you believe he is going to be nine months old in just a matter of days?!?!
How is Cale doing?
I never really know how to answer that question. My base line for how he's doing is so skewed because he's never doing well, good, or great. We are at a place in life where I never wanted to be and even though Cale can't express his thoughts, I'm fairly certain he is sad about where we're at, too.
It's been three months since Cale's surgery and it seems as though that surgery fixed absolutely nothing. Okay - not nothing - but the pain and discomfort with eating is still present, if not worse, and we've found ourselves taking several steps backwards in order to try and maintain his quality of life.
After much trial and error Cale is now being tube fed continuously through the night. We have eliminated all daytime feedings, with the exception of the few bites of solid food he gets when he sits down at the table with us, but we now have to come to terms with the fact that Cale is 100% reliant on a machine to feed him and give him the nutrition he needs to grow. That stupid pump is still an eyesore in his bedroom and I have yet to get used to seeing it beside his bed. The good news is that he has been a tremendous trooper with everything and he tolerates being hooked up at night like a champ. He has only turned off his pump once, which is highly amazing considering the fact that he loves anything technology, and he waits patiently for Alex to come and unhook him in the morning so that he can get out of bed. He truly has been the one thing that has made this transition bearable. I can't imagine how we would do this if he were defiant towards all of the changes that have had to take place.
We made the decision to eliminate his daytime feedings because he was in so much debilitating pain after each feeding. It was getting to the point where he would spend most of the day laying on the ground because of his level of discomfort, and even though Cale has his challenges, he's never been the type of kid to be so sedate and inactive. It was heartbreaking to see him not want to play with his sister and even more heartbreaking to see him lose such luster for life. Going places was almost not an option and we all were becoming incredibly stir crazy. I felt extreme guilt for keeping Riley from play dates with her friends and after speaking with his dietician, we finally made the decision to quit feeding him during the day in hopes of making him more comfortable. This decision hasn't been a quick fix because any amount of food or liquid to hit his stomach will send him in a tizzy, so that means one goldfish cracker or one sip of water, but we have noticed the past couple of weeks that things seem to be better. I'm able to go to the grocery store or send him off to school without incurring a bout of severe anxiety. We've been puzzled by the fact that he seems so miserable during the day when he eats and yet he seems to tolerate "eating" at night just fine. I've only recently conjured that he's simply just used to the discomfort and since he's laying down the entire time at night he's able to "make it through". I do think the continuous feeding is interrupting his sleep because he's back to taking naps during the day and when I wake up in the middle of the night to feed Cash I can hear him in his bedroom rustling around or kicking his feet against the wall. All in all, though, it has been a huge relief to know that he's getting all the nutrition he needs to grow.
Since the surgery wasn't the miraculous answer we thought it would be, we are now working on making a plan for what's next. We have been diligent in documenting absolutely EVERYTHING that goes on in Cale's life. If he gets a sip of water, we write it down. If he goes to the bathroom, we write it down. Anything and everything gets written down in the hopes that whichever kind of doctor/specialist we decide to see next, we will have the absolute best information to give them so that they can have the best chances of helping Cale. We are also in the beginning stages of getting Cale approved for in-home nursing. This step in our journey is almost due an entire post of its own because there are so many emotional hurdles that I've had to jump over to come to terms with this, but our goal of the nursing is to have a medically correct documentation of what life is really like for Cale. It's one thing for me or Alex to tell a doctor what's going on, but I think it will be entirely different coming from a nurse who can observe Cale during his feedings. Having a nurse in our home will be extremely invasive and I can't even really wrap my mind around what this will be like, but I have to remind myself that this is only temporary and it's serving as an important step in reaching our goal to make Cale's life better.
All of this is to help make his life the best that it can be and I truly believe his life can be, and will be, great. It's just taking an awful lot to get there.
I'm not really sure I did the best at answering the question of how Cale is doing. Aside from the pump feedings and the hassle that goes along with that, he's doing okay. The surgery didn't accomplish what we thought it would and he isn't magically surviving off table food like some people imagine. He's able to chew and swallow five or six bites of whatever we're eating but it's going to be a long, hard road to not only eliminate the pain that comes from eating, but also learning how to eat since that's something he hasn't been able to do during the last five and a half years of his life. We're making progress and we just take it one day at a time.
So there it is. An update on Cale! Hopefully my next post can be lighter and more positive. I can't wait to write about Cash...can you believe he is going to be nine months old in just a matter of days?!?!
Thursday, January 12, 2012
the homecoming
I apologize for the lack of updates since Cale's surgery. We have had a tremendous outpouring of help and support and I'm feeling a tad bit guilty for not keeping everyone up to speed with Cale's progress. Alas, here is what's happening with the Burkhalter family.
Cale's surgery last Thursday was a success. I felt much better afterwards knowing that the doctor didn't hesitate for one second in telling us we did the right thing. Even so, seeing my boy in so much pain and seeing his little tummy forever changed by an impressive scar and foreign tube, I felt the wind quickly leave my sails.
Which is probably why the next few days left me so dejected.
Late Friday morning we hit our first major speed bump. After chatting with several visitors who had come through to see Cale, he attempted to test out his feet and stand up in bed. Upon doing so I noticed something leaking from underneath his gown. Hmmm. That can't be good. My mother-in-law lifted his gown and the tube that was previously anchored into his stomach was now dangling towards his knees. Not yet panicked, I stepped outside into the hall and notified his nurse as to what just happened. He stared at me for a few seconds and then quickly jumped into action. I didn't initially know what this all meant. I didn't know enough to be panicked or to even be concerned, but as soon as the parade of nurses and doctors hurriedly rushed around trying to think of the best way to go about fixing this situation, I knew that whatever had just happened wasn't an easy fix. I hopped into Cale's bed and cradled his head in my lap. I ran my fingers through his hair and told him not to be scared; that everything was going to be okay and that these people were going to take good care of him.
Right at that moment I was wishing more than anything that Alex was with us, with me. I was alone though. My mom had gone back to our house to shower and my mother-in-law had taken Riley and Cash down the hall to play. I was alone, my fear level rising more and more, and here I was telling Cale that everything was going to be okay. I needed someone there to tell me everything was going to be okay. My little boy was screaming in pain while they tried to feed the tube back through the hole they had made only the day before. The doctor told me that it was going to be painful but that they needed to do it as soon as possible otherwise the hole would close up and they would need to do surgery again. I watched the doctor's face as he tried to put it back in but I could tell it wasn't going well based on his expressions. Meanwhile Cale was screaming and crying in ways I had never heard before. I told him to squeeze my hand through the pain and I imagine his grip was similar to mine when Alex said the same to me when I was in labor. After a few minutes of pokes and jabs, Cale's surgeon looked at me and said the only way to safely proceed was to go into surgery...again.
That's when I broke down.
I hadn't cried up to this point but there was no stopping the tears. There's just no way to explain the emotional exhaustion of watching your child be put to sleep and in my mind I had crossed that finish line yesterday. I wasn't prepared to do it again, even as minor the procedure as it was.
An hour later Cale was once again being wheeled into the operating room.
Any progress we had made in recovering from the first surgery was now going to have to start all over. Thankfully we were able to choose different pain medications and coming out of anesthesia was night and day from the day before. Cale seemed to be more comfortable and once the surgeon was able to come out and talk to us, he sheepishly confessed that the tube may not have been placed correctly to begin with and that the tube falling out was perhaps a blessing in disguise.
The following days of recovery were much of the same. We were able to start tube feeds on Sunday and he seemed to get stronger and stronger by the hour. By discharge day, Monday, he was walking up and down the halls trying to get on any computer he could find. One would say he was finally starting to act like himself.
One thing I hadn't prepared myself for was the amount of responsibility we would have coming home. While in the hospital we briefly learned how to administer his feedings and care for the incision sites. I felt pretty capable to do all of these things but once we were discharged I literally had a series of mini panic attacks on the drive home. I felt as though we were driving home with our firstborn child and we hadn't read any baby books or been around anyone with a baby before. This was all so new to me and my lack of knowledge and feelings of unpreparedness were so unbelievably overwhelming.
A nurse met us at our house to give us all the supplies we would need and to set us up with a feeding pump. One part of getting Cale back to where he needs to be nutritionally is to have him receive a drip feeding throughout the night. I can honestly say this is what disappointed me the most. This is what set me over the edge emotionally. Cale's bedside no longer has a cute end table with a cute little car night light on top. No, instead his bed side is decorated with an IV pole and feeding pump attached to it. Each time I pass by his room I have to make a conscience effort not to look in, otherwise the tears start to flow again. There's just something about seeing such a specialized piece of equipment in our house and knowing that my child cannot properly grow without it that makes me so sad.
We are currently trying to adjust to a new routine. The "button" that is attached to the outside of Cale's stomach has two tubes that go inside; one tube leads directly into his stomach and the other tube leads directly into his small intestine. He gets "fed" every three hours through the tube leading into his stomach and the tube leading into his small intestine needs to be flushed with water every four hours. I feel like all I do during the day is connect and disconnect tubes. I'm either cleaning all of the supplies, administering medicine, mixing formula, making sure Cale isn't doing something that could lead to his tube getting ripped out, or feeding him and the rest of the family.
I feel like a nurse without the paycheck.
I've been especially discouraged today because Cale is experiencing the same pain symptoms as before the surgery and I can't help but let my mind spiral to the bottomless question of, What if? What if the surgery didn't fix anything? What if the surgery was just a mask over a bigger problem? Sure, I won't have to clean up vomit anymore but at this point I'd rather clean up vomit than watch him hurting all the time.
I feel like our journey with Cale is a dead end road. I'm so tired of this emotional roller coaster. I was expecting a pain-free little boy at the end of this and my heart is breaking, once again, with the realization that this may not happen.
Cale's surgery last Thursday was a success. I felt much better afterwards knowing that the doctor didn't hesitate for one second in telling us we did the right thing. Even so, seeing my boy in so much pain and seeing his little tummy forever changed by an impressive scar and foreign tube, I felt the wind quickly leave my sails.
Which is probably why the next few days left me so dejected.
Late Friday morning we hit our first major speed bump. After chatting with several visitors who had come through to see Cale, he attempted to test out his feet and stand up in bed. Upon doing so I noticed something leaking from underneath his gown. Hmmm. That can't be good. My mother-in-law lifted his gown and the tube that was previously anchored into his stomach was now dangling towards his knees. Not yet panicked, I stepped outside into the hall and notified his nurse as to what just happened. He stared at me for a few seconds and then quickly jumped into action. I didn't initially know what this all meant. I didn't know enough to be panicked or to even be concerned, but as soon as the parade of nurses and doctors hurriedly rushed around trying to think of the best way to go about fixing this situation, I knew that whatever had just happened wasn't an easy fix. I hopped into Cale's bed and cradled his head in my lap. I ran my fingers through his hair and told him not to be scared; that everything was going to be okay and that these people were going to take good care of him.
Right at that moment I was wishing more than anything that Alex was with us, with me. I was alone though. My mom had gone back to our house to shower and my mother-in-law had taken Riley and Cash down the hall to play. I was alone, my fear level rising more and more, and here I was telling Cale that everything was going to be okay. I needed someone there to tell me everything was going to be okay. My little boy was screaming in pain while they tried to feed the tube back through the hole they had made only the day before. The doctor told me that it was going to be painful but that they needed to do it as soon as possible otherwise the hole would close up and they would need to do surgery again. I watched the doctor's face as he tried to put it back in but I could tell it wasn't going well based on his expressions. Meanwhile Cale was screaming and crying in ways I had never heard before. I told him to squeeze my hand through the pain and I imagine his grip was similar to mine when Alex said the same to me when I was in labor. After a few minutes of pokes and jabs, Cale's surgeon looked at me and said the only way to safely proceed was to go into surgery...again.
That's when I broke down.
I hadn't cried up to this point but there was no stopping the tears. There's just no way to explain the emotional exhaustion of watching your child be put to sleep and in my mind I had crossed that finish line yesterday. I wasn't prepared to do it again, even as minor the procedure as it was.
An hour later Cale was once again being wheeled into the operating room.
Any progress we had made in recovering from the first surgery was now going to have to start all over. Thankfully we were able to choose different pain medications and coming out of anesthesia was night and day from the day before. Cale seemed to be more comfortable and once the surgeon was able to come out and talk to us, he sheepishly confessed that the tube may not have been placed correctly to begin with and that the tube falling out was perhaps a blessing in disguise.
The following days of recovery were much of the same. We were able to start tube feeds on Sunday and he seemed to get stronger and stronger by the hour. By discharge day, Monday, he was walking up and down the halls trying to get on any computer he could find. One would say he was finally starting to act like himself.
One thing I hadn't prepared myself for was the amount of responsibility we would have coming home. While in the hospital we briefly learned how to administer his feedings and care for the incision sites. I felt pretty capable to do all of these things but once we were discharged I literally had a series of mini panic attacks on the drive home. I felt as though we were driving home with our firstborn child and we hadn't read any baby books or been around anyone with a baby before. This was all so new to me and my lack of knowledge and feelings of unpreparedness were so unbelievably overwhelming.
A nurse met us at our house to give us all the supplies we would need and to set us up with a feeding pump. One part of getting Cale back to where he needs to be nutritionally is to have him receive a drip feeding throughout the night. I can honestly say this is what disappointed me the most. This is what set me over the edge emotionally. Cale's bedside no longer has a cute end table with a cute little car night light on top. No, instead his bed side is decorated with an IV pole and feeding pump attached to it. Each time I pass by his room I have to make a conscience effort not to look in, otherwise the tears start to flow again. There's just something about seeing such a specialized piece of equipment in our house and knowing that my child cannot properly grow without it that makes me so sad.
We are currently trying to adjust to a new routine. The "button" that is attached to the outside of Cale's stomach has two tubes that go inside; one tube leads directly into his stomach and the other tube leads directly into his small intestine. He gets "fed" every three hours through the tube leading into his stomach and the tube leading into his small intestine needs to be flushed with water every four hours. I feel like all I do during the day is connect and disconnect tubes. I'm either cleaning all of the supplies, administering medicine, mixing formula, making sure Cale isn't doing something that could lead to his tube getting ripped out, or feeding him and the rest of the family.
I feel like a nurse without the paycheck.
I've been especially discouraged today because Cale is experiencing the same pain symptoms as before the surgery and I can't help but let my mind spiral to the bottomless question of, What if? What if the surgery didn't fix anything? What if the surgery was just a mask over a bigger problem? Sure, I won't have to clean up vomit anymore but at this point I'd rather clean up vomit than watch him hurting all the time.
I feel like our journey with Cale is a dead end road. I'm so tired of this emotional roller coaster. I was expecting a pain-free little boy at the end of this and my heart is breaking, once again, with the realization that this may not happen.
Thursday, January 5, 2012
surgery day
A quick update before my eyes roll back in my head and my face collapses onto the keyboard. It was a long day and I am e x h a u s t e d.
The surgery itself went as well as the surgeon could have expected. He didn't go into a whole lot of detail but he did say that when he saw how large the hernia was he was a little taken aback. He apparently didn't wake up expecting to see what he did. They initially told us to expect an hour and a half to two hours for total surgery time but Alex and I nervously watched the clock tick past two hours, then three hours, and finally at the four hour mark the anesthesiologist came and led us back to the recovery room. Cale was already awake and, rightfully so, very scared. I laid with him in the bed to try and calm him as much as I could but I think it was the third dose of morphine that finally was able to put him at ease. The surgeon explained to us that the size of the hernia was what increased the surgery time and apparently it was quite the battle to get his stomach back down where it should be. He affirmed us by saying we absolutely did the right thing and that this surgery was 100% necessary. Whew!
When we left Cale tonight (my mom is staying with him) his pain was seemingly under control but he spent the majority of the afternoon incredibly uncomfortable. He has been getting doses of morphine every hour and will continue with that plan through the night. Hopefully by tomorrow we can start backing off on the pain meds. One concern is he has yet to produce a wet diaper even though he has been on a constant drip of fluids since surgery. We're hoping it's just taking awhile for his systems to wake back up from the anesthesia but it's definitely something to be mindful of.
An encouraging thing that happened was that Cale was able to eat a few ice chips. One of the many cons of this surgery is that swallowing can be incredibly difficult during the first six to eight weeks after surgery, but Cale seemed to tolerate the ice chips without too much hassle. I'm hoping the same ease carries over into swallowing food.
We made it - the surgery is finally behind us. After today I am realizing the recovery process is going to be harder than expected but thankfully we have a giant sized support system to help us along the way. We had several people come and sit with us while Cale was in surgery and I can't even begin to describe what a blessing that was, especially since the surgery time went well beyond what we expected. My mom drove in from Billings and will be staying the night with Cale tonight and tomorrow night and then Alex's biological mom from Seattle will stay with him the remainder of the nights. Alex's bonus mom, Leslie, has also made herself available to be with Cale and help with Riley whenever needed. Others have offered to keep Riley entertained while we focus on Cale and Alex and I get to come home to a cooked meal each day. We are so blessed.
The "church" is much more than a building for people to enter. The "church" is a group of people shedding God's love upon others by they themselves showing love to other people. I can't think of a better testimony of Christ's sacrifice for us on the cross than lovingly meeting the needs of other people. Our family has been no stranger to the kindness of others and I can't even begin to express my gratefulness for such a loving and caring support of people.
More tomorrow! Also, Cale would love to have visitors so please feel free to text my phone if you want to stop on by. :)
The surgery itself went as well as the surgeon could have expected. He didn't go into a whole lot of detail but he did say that when he saw how large the hernia was he was a little taken aback. He apparently didn't wake up expecting to see what he did. They initially told us to expect an hour and a half to two hours for total surgery time but Alex and I nervously watched the clock tick past two hours, then three hours, and finally at the four hour mark the anesthesiologist came and led us back to the recovery room. Cale was already awake and, rightfully so, very scared. I laid with him in the bed to try and calm him as much as I could but I think it was the third dose of morphine that finally was able to put him at ease. The surgeon explained to us that the size of the hernia was what increased the surgery time and apparently it was quite the battle to get his stomach back down where it should be. He affirmed us by saying we absolutely did the right thing and that this surgery was 100% necessary. Whew!
When we left Cale tonight (my mom is staying with him) his pain was seemingly under control but he spent the majority of the afternoon incredibly uncomfortable. He has been getting doses of morphine every hour and will continue with that plan through the night. Hopefully by tomorrow we can start backing off on the pain meds. One concern is he has yet to produce a wet diaper even though he has been on a constant drip of fluids since surgery. We're hoping it's just taking awhile for his systems to wake back up from the anesthesia but it's definitely something to be mindful of.
An encouraging thing that happened was that Cale was able to eat a few ice chips. One of the many cons of this surgery is that swallowing can be incredibly difficult during the first six to eight weeks after surgery, but Cale seemed to tolerate the ice chips without too much hassle. I'm hoping the same ease carries over into swallowing food.
We made it - the surgery is finally behind us. After today I am realizing the recovery process is going to be harder than expected but thankfully we have a giant sized support system to help us along the way. We had several people come and sit with us while Cale was in surgery and I can't even begin to describe what a blessing that was, especially since the surgery time went well beyond what we expected. My mom drove in from Billings and will be staying the night with Cale tonight and tomorrow night and then Alex's biological mom from Seattle will stay with him the remainder of the nights. Alex's bonus mom, Leslie, has also made herself available to be with Cale and help with Riley whenever needed. Others have offered to keep Riley entertained while we focus on Cale and Alex and I get to come home to a cooked meal each day. We are so blessed.
The "church" is much more than a building for people to enter. The "church" is a group of people shedding God's love upon others by they themselves showing love to other people. I can't think of a better testimony of Christ's sacrifice for us on the cross than lovingly meeting the needs of other people. Our family has been no stranger to the kindness of others and I can't even begin to express my gratefulness for such a loving and caring support of people.
More tomorrow! Also, Cale would love to have visitors so please feel free to text my phone if you want to stop on by. :)
Wednesday, January 4, 2012
confession
I've been feeling a tad guilty lately over my emotions regarding my son. Yes, Cale's struggles and life journey have put me through the ringer and then some. I've experienced a side of grief that I never had before and my good days and bad days seem to change so fast that it's hard to keep track of which kind of day I'm having. I'm always aware of our situation because Cale is constantly with us (thank God) which makes it hard to escape from the different life that God has given us. I used to have periods in my life, mostly when Cale was younger, when I would constantly wish that Cale were like all of my other friend's kids. I compared Cale to his peers until my head would nearly spin off into the universe until finally comparing him to other kids got to be so depressing that I shut that part of my brain off completely. Those periods of wishing Cale were normal used to be a daily struggle, but thankfully those years turned into days and now I only seem to have those moments a few minutes at a time. I truly love Cale for who God created him to be and even though it's impossible to say for sure, I don't think I could love my children as fully if we had been dealt a normal life. I'm definitely in a place where I can genuinely thank God for Cale and accept that he is exactly how God intended to create him.
I've been feeling guilty because this surgery seems like such a big deal to me. And it is...to ME. If someone were reading this who had lost a child or was helping a child fight cancer I'm pretty sure they would roll their eyes at my sob story and sarcastically tell me boo hoo! And I get it. This surgery is not life or death and even though it's going to forever change the way Cale's body works, God willing he will recover just fine and make positive steps forward. Like I said yesterday, this surgery is not a quick fix and we have a very long road to go down from here, but Cale will get through this. We all will.
With that said, Cale's surgery is tomorrow morning at 8:30. We met with the surgeon today and he affirmed our decision to go forth with it. He fully agreed that this was necessary and for the moment put my mind at ease. Cale's recovery time in the hospital will all depend on how quickly his intestines "wake up" and if we can manage his pain effectively. The surgeon said anywhere between three to seven days in the hospital and then another six to eight weeks until Cale is finally feeling like himself. We've tried our best to prepare him for what's going to happen and I think he gets it, or at least as much as a five year old can get something like this. He gets incredibly excited when we tell him it won't hurt anymore when he eats and the thought of being able to drink as much water as he wants throws him into fits of giggles. He also doesn't mind that he gets a couple weeks off from school. :) I think he's ready and I think I am, too.
It's been a long road leading up to tomorrow and I don't know how we could have got through it as well as we have without the love and support from our friends and family. We truly have an army of supporters and it blows me away to see everyone surround us with prayer and love. I have some of the greatest friends who have offered to bring us meals and the thoughtfulness of everyone just tickles me to pieces! I think I've said this before but I really hope I can be as great a friend to those who have been so kind to us during this entire journey. So, thank you for all of the help, for reading this and checking in with Cale, and for praying for our family.
Tomorrow this part of our journey will all be behind us...
I've been feeling guilty because this surgery seems like such a big deal to me. And it is...to ME. If someone were reading this who had lost a child or was helping a child fight cancer I'm pretty sure they would roll their eyes at my sob story and sarcastically tell me boo hoo! And I get it. This surgery is not life or death and even though it's going to forever change the way Cale's body works, God willing he will recover just fine and make positive steps forward. Like I said yesterday, this surgery is not a quick fix and we have a very long road to go down from here, but Cale will get through this. We all will.
With that said, Cale's surgery is tomorrow morning at 8:30. We met with the surgeon today and he affirmed our decision to go forth with it. He fully agreed that this was necessary and for the moment put my mind at ease. Cale's recovery time in the hospital will all depend on how quickly his intestines "wake up" and if we can manage his pain effectively. The surgeon said anywhere between three to seven days in the hospital and then another six to eight weeks until Cale is finally feeling like himself. We've tried our best to prepare him for what's going to happen and I think he gets it, or at least as much as a five year old can get something like this. He gets incredibly excited when we tell him it won't hurt anymore when he eats and the thought of being able to drink as much water as he wants throws him into fits of giggles. He also doesn't mind that he gets a couple weeks off from school. :) I think he's ready and I think I am, too.
It's been a long road leading up to tomorrow and I don't know how we could have got through it as well as we have without the love and support from our friends and family. We truly have an army of supporters and it blows me away to see everyone surround us with prayer and love. I have some of the greatest friends who have offered to bring us meals and the thoughtfulness of everyone just tickles me to pieces! I think I've said this before but I really hope I can be as great a friend to those who have been so kind to us during this entire journey. So, thank you for all of the help, for reading this and checking in with Cale, and for praying for our family.
Tomorrow this part of our journey will all be behind us...
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