Today is Thursday, which means I need to wake up expecting chaos.
Our day starts off with me sleeping in as late as I can, until I look over at the clock and tell myself that if I don't wake up RIGHT NOW and get my behind downstairs to wake up my kiddos, feed them breakfast, get their diapers changed and their little bodies clothed, I am going to be late dropping Cale off at school. It's a God-given miracle that I am able to get myself and my kids out the door before 9:00 AM on any given day, therefore having to be somewhere at 8:45 and actually getting there on time is a direct act of God.
Today was especially challenging, however, because it was pouring sheets of rain! Buckets, even! I'm not exactly sure why this change in weather threatened to delay my departure time...perhaps it was because I had to make sure Cale had all the appropriate clothing just in case his teachers decided to lose their minds and take a classroom full of preschoolers outside. Or maybe it was because the sky was dreary and it made me move a little bit slower than usual. Regardless, I found it incredibly difficult to get out the door on time.
I made it to Cale's school a few minutes late but the buses were still waiting out front which meant the teachers hadn't come out to help the students off, which further meant I wasn't officially late. Bonus 'Mom' points for me. I helped Riley out of the car and her freshly bathed and brushed hair was immediately plastered to her head from all of the rain. She now looked beautiful, especially with the fat lip protruding from her face. (more on that another time) By the time I walked Cale and Riley into the school we were soaking wet and looking like a pathetic trio of drowned rats.
After we dropped Cale off, Riley and I spent the next two and a half hours INSIDE. We cleaned up the house a little and then met a friend at the mall to let our kiddos play so that we could sit for a few moments and enjoy a quiet cup of coffee. It never ended up being quiet but the friendship and coffee was exactly what I needed. Before long it was time to brave the outdoors again and go pick up Cale.
The rain had not stopped and it was still pouring buckets. I ran with Riley to the front of the school and before I could get to the overhang that would shelter us from the wetness, one of Cale's teachers stopped me with quite a bit of force and very matter-of-factly told me that "my son was a GENIUS!". She then continued to tell me the long version of how Cale painted a picture today and the teachers around the school had all put bets on what the drawing was. She told me her interpretation of the drawing was a cowboy getting kissed by his mistress, but other teachers thought it might be a firefighter saving an old woman from a fire. She was quite sure that coincidences like that don't just "happen" and that Cale might have actually been trying to draw something. It was a good story but by now Riley and I are completely drenched and Riley is shivering from the cold.
I must say, this teacher's excitement about Cale's drawing perked my curiosity and I was looking forward to getting a peek at it myself once we got home. Cale must have been very proud of his artwork because he would not let go of the plastic bag that his drawing was wrapped in. He held onto very tightly the entire car ride home.
When we finally did get home, wet hair and all, I pulled his drawing out of the plastic bag and immediately saw the cowboy kissing a woman. I'm not convinced it's his mistress but it's a person none-the-less. I'm certainly not convinced, nor do I believe for a second, that Cale purposefully meant to draw this (HE'S ONLY THREE YEARS OLD, PEOPLE!), but I did proudly hang it on the front of our fridge, which actually says quite a bit because I love having a clean fridge with NOTHING on it. It's amazing what the pride of a parent can make a person do. :)
Cale still walks around the house and occasionally walks up to the fridge and stares at his beautiful masterpiece. He squeals in delight at his mystery red blob!
The rest of our day consisted of lunch and speech therapy, but now I have two very exhausted kiddos who are quietly sleeping in their beds.
Ahhh, this is my favorite time of the day. :)
Thursday, May 27, 2010
Tuesday, May 25, 2010
Doctors get paid WAY TOO MUCH money...
...or at least the ones in Missoula do.
I take that back, in part. I'm sure there are some exceptions to my rule and I really believe there are a handful of doctors out there that deserve every thing that's handed to them, however most of the doctors we've come in contact over the past four years have done NOTHING to advance our search in finding a way to treat my son. I can't even begin to write about how frustrating and disheartening this is. I'm left wondering if there is more that I could be doing or if I'm simply too "cooperative" with the medical community and so I'm left targeted as a blazing red bullseye. There has to be SOMETHING that SOMEONE can do to make it so that Cale doesn't have to go the rest of his life throwing up and writhing in pain.
If you read my post yesterday you can probably gather that our doctor's appointment did not go well. It was a waste of our time, really. The pediatrician we saw was more concerned about getting home by 5:00 than listening to my concerns. He told me that our appointment in Seattle was the "magical appointment" and that I would just have to wait until then.
So I asked, "Am I supposed to just let my son throw up eight times a day and be miserable for the next three weeks?"
"Yes, because there's nothing we can do."
OH. MY. GOSH.
If I were a person that cursed I'm sure I would have screamed several four-letter words at the response that had just come out of his mouth. This man of a doctor didn't even let the tears of a young mom phase him. Again, perhaps his wife threatened that he be home in time for dinner, or else, therefore he couldn't take an extra ten minutes to at least give me a few options of what to do between now and Seattle. The day I find a doctor who actually takes the time to sit and LISTEN to me, and then make a plan on how to go about finding what may be wrong with Cale, I promise I will bend over and kiss the ground he walks on!
Okay, my rant is over and I even feel a little better. On a positive note, I haven't actually seen Cale throw up today and even though he was in school for two and a half hours this morning, his teachers didn't mention anything to me. So I guess I should be grateful and see that as a sign of answered prayer. If you prayed for Cale yesterday, THANK YOU! For at least this morning, it worked!
I take that back, in part. I'm sure there are some exceptions to my rule and I really believe there are a handful of doctors out there that deserve every thing that's handed to them, however most of the doctors we've come in contact over the past four years have done NOTHING to advance our search in finding a way to treat my son. I can't even begin to write about how frustrating and disheartening this is. I'm left wondering if there is more that I could be doing or if I'm simply too "cooperative" with the medical community and so I'm left targeted as a blazing red bullseye. There has to be SOMETHING that SOMEONE can do to make it so that Cale doesn't have to go the rest of his life throwing up and writhing in pain.
If you read my post yesterday you can probably gather that our doctor's appointment did not go well. It was a waste of our time, really. The pediatrician we saw was more concerned about getting home by 5:00 than listening to my concerns. He told me that our appointment in Seattle was the "magical appointment" and that I would just have to wait until then.
So I asked, "Am I supposed to just let my son throw up eight times a day and be miserable for the next three weeks?"
"Yes, because there's nothing we can do."
OH. MY. GOSH.
If I were a person that cursed I'm sure I would have screamed several four-letter words at the response that had just come out of his mouth. This man of a doctor didn't even let the tears of a young mom phase him. Again, perhaps his wife threatened that he be home in time for dinner, or else, therefore he couldn't take an extra ten minutes to at least give me a few options of what to do between now and Seattle. The day I find a doctor who actually takes the time to sit and LISTEN to me, and then make a plan on how to go about finding what may be wrong with Cale, I promise I will bend over and kiss the ground he walks on!
Okay, my rant is over and I even feel a little better. On a positive note, I haven't actually seen Cale throw up today and even though he was in school for two and a half hours this morning, his teachers didn't mention anything to me. So I guess I should be grateful and see that as a sign of answered prayer. If you prayed for Cale yesterday, THANK YOU! For at least this morning, it worked!
Monday, May 24, 2010
Desperation
There seems to always be SOMETHING going on with Cale. I usually choose not to write about it because if I did, this blog would solely be comprised of the "junk" he has to deal with and even though it's important and a huge part of our lives, focusing on what's "wrong" all the time is simply depressing. I feel the need, however, to write about what's going on with him today because I'm taking him into the doctor this afternoon out of sheer desperation, and perhaps those of you reading this can offer up a prayer. Or a lot of prayers.
I've watched Cale over the last eight to ten months get progressively worse in regards to his eating and digesting patterns. It started out with what I just assumed was really bad reflux. When the medicines he was on failed to work I was naive in thinking that we just hadn't found the right one. Initial symptoms that I remember noticing were spitting up every now and then, with an occasional grimace on this face when he had to swallow back down whatever had just come up. Today, however, the symptoms have progressed to Cale throwing up with EVERY feeding, at least once, and then throwing up two to three times in between feedings. Aside from losing his breakfast, lunch, and dinner, he has seemed to have lost total control over his body during these episodes. We've ruled out seizures so we know it's not that, but something is going on his little body that is causing these miserable side effects. He's resulted to laying down when he plays with toys because I think he feels he has more control of his body in that position. He can still sit up and walk but when he's having these bouts of whatever is going on, he chooses to lay down and be still. You can clearly hear gurgling and churning in his stomach that is most noticeable right after he eats or has a drink of water. He cries because he's in pain but thankfully has not refused to eat. Whatever is going on is causing GREAT stress in our family because we're obviously worried about Cale, but the physical demands of cleaning up vomit ALL. DAY. LONG is getting to the point of being too much bear. I HATE watching him suffer like this and I HATE even more that I'm not able to do anything for him.
I see what used to be my happy little boy slowly becoming unhappy in his misery. He's a trooper and has handled this better than anyone I will ever know, but I'm afraid he will soon "give up"; I certainly would have long before now.
We are scheduled to leave for Seattle on June 4 so that Cale can get "scoped" by the GI (gastroenterologist) doctor but at this rate I don't think we can make it that long. Cale's regular pediatrician is unfortunately out of the office today and tomorrow and so we will be seeing someone today that doesn't know anything about Cale, so please pray for wisdom for this new doctor. Please pray that they will take my concerns seriously and that he will quickly develop a heart for treating my son.
Our appointment is at 3:50 this afternoon so I will try and update you after we get home. THANK YOU for praying!!!
I've watched Cale over the last eight to ten months get progressively worse in regards to his eating and digesting patterns. It started out with what I just assumed was really bad reflux. When the medicines he was on failed to work I was naive in thinking that we just hadn't found the right one. Initial symptoms that I remember noticing were spitting up every now and then, with an occasional grimace on this face when he had to swallow back down whatever had just come up. Today, however, the symptoms have progressed to Cale throwing up with EVERY feeding, at least once, and then throwing up two to three times in between feedings. Aside from losing his breakfast, lunch, and dinner, he has seemed to have lost total control over his body during these episodes. We've ruled out seizures so we know it's not that, but something is going on his little body that is causing these miserable side effects. He's resulted to laying down when he plays with toys because I think he feels he has more control of his body in that position. He can still sit up and walk but when he's having these bouts of whatever is going on, he chooses to lay down and be still. You can clearly hear gurgling and churning in his stomach that is most noticeable right after he eats or has a drink of water. He cries because he's in pain but thankfully has not refused to eat. Whatever is going on is causing GREAT stress in our family because we're obviously worried about Cale, but the physical demands of cleaning up vomit ALL. DAY. LONG is getting to the point of being too much bear. I HATE watching him suffer like this and I HATE even more that I'm not able to do anything for him.
I see what used to be my happy little boy slowly becoming unhappy in his misery. He's a trooper and has handled this better than anyone I will ever know, but I'm afraid he will soon "give up"; I certainly would have long before now.
We are scheduled to leave for Seattle on June 4 so that Cale can get "scoped" by the GI (gastroenterologist) doctor but at this rate I don't think we can make it that long. Cale's regular pediatrician is unfortunately out of the office today and tomorrow and so we will be seeing someone today that doesn't know anything about Cale, so please pray for wisdom for this new doctor. Please pray that they will take my concerns seriously and that he will quickly develop a heart for treating my son.
Our appointment is at 3:50 this afternoon so I will try and update you after we get home. THANK YOU for praying!!!
Saturday, May 22, 2010
Goings On and Happenings...
Wow, I feel like it's been FOREVER since I last posted anything about anything. I wonder if anyone ever reads the small amount of things I have to say??? Well, even if there is only one of you out there that decides to stop by this site, I suppose I will talk to you. Thank you for being so faithful!
Last Wednesday Alex and I finally moved into our new house! I must admit that I didn't allow myself to get very excited about moving until it actually happened, but now that it has, I am overjoyed and so excited about our new home! I love waking up in this house and I cannot wait to make it our own! The kids have done amazing with this new transition and have had so much fun exploring their different surroundings. In fact, yesterday I had to stop by our old house to grab a few things and Cale pointed to the house and shook his head "no", only to smile again until we pulled into the driveway of our new house. I guess that means we get a stamp of approval from him. Our new house has at least twice the square footage of our old one and I have been pleasantly surprised to find that we don't have enough stuff to fill this house. I even have bare cabinets, with NOTHING in them, in our kitchen! Not to mention an actual room to do our laundry, rather than having to transfer and fold clothes in the hallway. It is simply marvelous. Dreamy, even. This is the perfect house to have my kids grow up and remember as their first home.
Our best friends coincidently sold their house the very same day we did and just yesterday put a house under contract. I am very excited for them and can't wait to help them move. (moving other people's stuff is far more exciting and less stressful than moving your own, because at the end of the day you can just leave it and don't have the overwhelming task of unpacking it all!)
My parents are coming to visit Memorial Day weekend and I'm excited that they will finally have an actual room and bathroom to themselves. I'm sure that will make their visits a tad more comfortable since they previously had to sleep on an air mattress in the middle of our living room floor. :) For any of you readers that don't live here in Missoula, if you ever find yourself in this beautiful city and don't have a place to stay, our home is always available. :) Seriously.
In other news, Riley has started asking A LOT of questions. "What are you doing?", and "Why?" seem to be her favorite. I think some parents might get annoyed by such inquiries, but I have found myself loving it and thinking that she just might be the smartest kid to ever walk the planet. :) I think it's due to the fact that I've never had the experience of Cale asking me a hundred questions like most all toddlers do, and so now that I have one that is acting like her actual age, I am just amazed at her brilliance. I'm amazed at Cale's brilliance, too...just in different ways. :)
We head to Seattle in a few weeks for another doctor appointment for Cale. If you find yourself with nothing to pray about or just want to add something else to your list, please pray that this doctor will find SOMETHING and that there will be a simple way to treat it. Thank you!
Last Wednesday Alex and I finally moved into our new house! I must admit that I didn't allow myself to get very excited about moving until it actually happened, but now that it has, I am overjoyed and so excited about our new home! I love waking up in this house and I cannot wait to make it our own! The kids have done amazing with this new transition and have had so much fun exploring their different surroundings. In fact, yesterday I had to stop by our old house to grab a few things and Cale pointed to the house and shook his head "no", only to smile again until we pulled into the driveway of our new house. I guess that means we get a stamp of approval from him. Our new house has at least twice the square footage of our old one and I have been pleasantly surprised to find that we don't have enough stuff to fill this house. I even have bare cabinets, with NOTHING in them, in our kitchen! Not to mention an actual room to do our laundry, rather than having to transfer and fold clothes in the hallway. It is simply marvelous. Dreamy, even. This is the perfect house to have my kids grow up and remember as their first home.
Our best friends coincidently sold their house the very same day we did and just yesterday put a house under contract. I am very excited for them and can't wait to help them move. (moving other people's stuff is far more exciting and less stressful than moving your own, because at the end of the day you can just leave it and don't have the overwhelming task of unpacking it all!)
My parents are coming to visit Memorial Day weekend and I'm excited that they will finally have an actual room and bathroom to themselves. I'm sure that will make their visits a tad more comfortable since they previously had to sleep on an air mattress in the middle of our living room floor. :) For any of you readers that don't live here in Missoula, if you ever find yourself in this beautiful city and don't have a place to stay, our home is always available. :) Seriously.
In other news, Riley has started asking A LOT of questions. "What are you doing?", and "Why?" seem to be her favorite. I think some parents might get annoyed by such inquiries, but I have found myself loving it and thinking that she just might be the smartest kid to ever walk the planet. :) I think it's due to the fact that I've never had the experience of Cale asking me a hundred questions like most all toddlers do, and so now that I have one that is acting like her actual age, I am just amazed at her brilliance. I'm amazed at Cale's brilliance, too...just in different ways. :)
We head to Seattle in a few weeks for another doctor appointment for Cale. If you find yourself with nothing to pray about or just want to add something else to your list, please pray that this doctor will find SOMETHING and that there will be a simple way to treat it. Thank you!
Monday, April 26, 2010
Hallelujah!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
After an already chaotic morning, (Sundays are ALWAYS chaos no matter how well we try and plan ahead), we got a phone call as we were leaving church informing us that we had gotten an offer on our house! First emotion was pure excitement but then the reality of the offer not being exactly what we hoped for started creeping in. Alex spent the afternoon crunching numbers with our realtor. After a few hours we submitted a counter-offer to our potential buyers and within just another few hours they accepted! AAAHHHHHHH!
It's still so surreal knowing that we are actually going to sell our house and that we are actually going to move into the house we have so patiently waited for during the past several months.
I'll try and post pictures of the new house soon.
P.S. Cale's MRI went AMAZING! He did GREAT and it was ten thousand times better than I thought it was going to be. We should be getting a call from his doctor today so if I hear anything I will make sure and update as soon as possible!
Thursday, April 22, 2010
MRI Day!
Tomorrow morning we will check into the hospital at 6:15 am. Yuck. Cale is scheduled to have an MRI done on his brain, along with some blood work testing and a muscle biopsy. Double Yuck.
Cale had an MRI when he was about six months old and during our most recent visit to Seattle Children's Hospital, the neurologist suggested that we do another one since he's now three and a half years old. The first MRI came back "within normal limits", meaning 'I have no idea what that means'. The radiologist that read the results noticed some abnormalities but all of them were "within normal limits". I suppose my brain or your brain could also have some abnormalities but since not every person gets an MRI, we would never know. That's how I choose to look at it anyway.
I'm not necessarily nervous about or worried that they will find something different from the original results, but I am nervous about Cale being under anesthesia. He's been under it before - three times to be exact - and has done fine every time, but there's just something about watching your baby drift off to never-never-land that leaves me feeling uneasy. I'm also wondering about the muscle biopsy. It was explained to me in terms like "they will take a chunk of muscle out of his leg and then sew him back up". What exactly does that mean? Will he be in pain or in some sort of recovery period for a lengthy amount of time? Oh well, I'm sure everything will be fine. No good will come from worrying about it.
I hate that we have to do this. I hate that Cale has to go through this. However, the pre-surgery nurse did say that when he wakes up tomorrow he will most likely be looking for his mom. I will definitely be looking forward to that! :)
I will update how things went, as well as the results, as soon as I can.
Wednesday, April 21, 2010
Prayer for complete healing questioned?
This post may be a little heavy and so I'll start out with something light. I saw an advertisement informing me that Dairy Queen is celebrating a birthday and so they're offering a "buy one Blizzard and get the second one for $.25". I'll definitely be partaking in that tonight!
I was driving down the street today, on my way to Starbucks to grab my usual Americano, when a thought hit me so hard I felt as though I had run into something.
My husband and I pray, DAILY, for complete healing in Cale. I go through seasons when I'm angry with God for not answering my prayer, but on the contrary I also go through seasons when I'm filled with so much patience, and faith, that I'm content in waiting for the day WHEN He DOES answer my prayer. Right now, on this very day, I'm somewhere in the middle.
I'm angry that I, one of billions of people in this world, was given a child with a disability. People have babies every day, healthy babies. Why me? A selfish but honest question. When someone says to me, "God chose you to be Cale's mom because He knew you were the best person for the job" only ignites my anger. Should I feel special or feel like I won some sort of an award? On the contrary, I'm also content knowing that Cale will most likely never be completely healed. I'm not saying that God is incapable of performing miracles but I've had long enough to think about the fact that there is a bigger purpose - a purpose that may never be revealed - behind why Cale is my son and I am his mom. I'm okay with that and I sometimes even feel special that I get to be apart of one of God's purposes.
Going back to the thought that hit me so hard while on my way to Starbucks. My prayer for complete healing in Cale might leave God feeling puzzled. He may be up in Heaven, looking down on me, wondering what on earth I'm asking of Him. He's confused because He doesn't view Cale as being sick. In His eyes Cale is not "disabled". Cale is perfectly healthy and it's me, and this world, that labels him as being different. So I'm left wondering what my prayer for Cale's life should be. I don't think there's anything wrong with asking for healing because I assure you that if I or someone in my family were to get sick, I would be the first one begging God for a cure. For whatever reason, though, I feel like I should be praying something different for Cale. I don't know what that is yet because this journey of raising him and being his mom changes on a daily basis, but I'm sure God will let me know what it is He wants, whether it's through a dream or while on a drive to Starbucks.
He certainly has interesting and unique ways of communicating to us.
I was driving down the street today, on my way to Starbucks to grab my usual Americano, when a thought hit me so hard I felt as though I had run into something.
My husband and I pray, DAILY, for complete healing in Cale. I go through seasons when I'm angry with God for not answering my prayer, but on the contrary I also go through seasons when I'm filled with so much patience, and faith, that I'm content in waiting for the day WHEN He DOES answer my prayer. Right now, on this very day, I'm somewhere in the middle.
I'm angry that I, one of billions of people in this world, was given a child with a disability. People have babies every day, healthy babies. Why me? A selfish but honest question. When someone says to me, "God chose you to be Cale's mom because He knew you were the best person for the job" only ignites my anger. Should I feel special or feel like I won some sort of an award? On the contrary, I'm also content knowing that Cale will most likely never be completely healed. I'm not saying that God is incapable of performing miracles but I've had long enough to think about the fact that there is a bigger purpose - a purpose that may never be revealed - behind why Cale is my son and I am his mom. I'm okay with that and I sometimes even feel special that I get to be apart of one of God's purposes.
Going back to the thought that hit me so hard while on my way to Starbucks. My prayer for complete healing in Cale might leave God feeling puzzled. He may be up in Heaven, looking down on me, wondering what on earth I'm asking of Him. He's confused because He doesn't view Cale as being sick. In His eyes Cale is not "disabled". Cale is perfectly healthy and it's me, and this world, that labels him as being different. So I'm left wondering what my prayer for Cale's life should be. I don't think there's anything wrong with asking for healing because I assure you that if I or someone in my family were to get sick, I would be the first one begging God for a cure. For whatever reason, though, I feel like I should be praying something different for Cale. I don't know what that is yet because this journey of raising him and being his mom changes on a daily basis, but I'm sure God will let me know what it is He wants, whether it's through a dream or while on a drive to Starbucks.
He certainly has interesting and unique ways of communicating to us.
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