There's not really a whole lot to update on as far as Jaxson goes. I am starting to go back through his medical records and getting copies of things I don't have to do some research, but there's only two things I've found that haven't been discussed or researched in full. And I won't have all of the information until after his next surgery because they want to get through that before we move on to the next thing. Which is fine, but leaves me with questions until then.
The first thing about Jaxson is that he does have a Chiari 1 malformation. If you are unfamiliar with the term, basically his brain is pushing down into his spinal column. This was likely caused by the tethered cord. When the cord doesn't separate from the skin completely, the spine stretches as the body grows. That alone causes pain, loss of feelin in the extremities, loss of sensitivity to temperature, etc. It could also be caused by the craniosynostosis because his brain ran out of room to grow. I know they are hoping that this distraction surgery relieves some of that, but I'm not holding my breath. You can read more here.
Th second thing is that Jaxson has a syrinx. I'm sure one of the doctors told us that before, but I didn't remember hearing it, so I was surprised when I saw it on the report. It extends from T11/12 to L2/3 and is 2.5mm. A syrinx is a fluid-filled cavity inside the spinal cord. Over time, it will expand and elongate, causing damage to nerves and impeding funcionality of the extremities and bladder/bowel. A syrinx can be drained, but not removed, and sometimes draining it doesn't fix the problem. It can cause life-altering problems and irreversible damage if not treated properly. You can read more here.
The third thing is that he's had fluid in his brain since birth. It was noticed on the brain MRI he has last year, but apparently it wasn't conclusive. And it's the main reason I'm concerned about the way getting his pins out is going. Dr. Pearson got X-rays last week when we were there, but he wants another set this eek before we meet with him. We're basically going to check in at plastics, then go down to X-ray, then come back and meet with him. The way the tech reacted last week does not leave me feeling confident about the appointment. First, he asked us to wait to make sure the radiologist didn't want any more pictures. They've never had us do that before, but he was training two people so I just kind of let it go. When he came back to tell me we could leave, he kind of hesitated, like he wanted to tell me something. But then he just said we could go. So. Could be nothing, could me something. We won't know until Thursday.
And finally, something positive! I must say that watching Jaxson grow has been, and still is, so amazing. He knows his limitations and he uses his environment to achieve his goal. Whether it be getting to the other side of the room, or pulling/pushing an object to get another object. Watching him explore the living room, or whatever room he's in for that matter, is such a joy. He makes the most hysterical faces and when he figures out that something makes up I laugh, makes you excited or makes you smile, he will repeat it until you quit reacting to it. He's so vocal! I watch him watch our mouths when we talk and when we eat, and I can see the yearning in his eyes to do the same. He communicates with a series of ah's, uh's, ma's and na's until you figure out what he wants. I know it frustrate I him, especially because he doesn't understand why he can't do those things. And every time he has a hospital stay he regresses. It's hard to watch him relearn things like clapping and baby sign language. But then he makes this huge leap past where he was pre-admission and we think he's going to start making significant progress, but then he'll plateau or end up back in the hospital. As hard as it is for me to see him struggle, Jaxson is such an inspiration. He's always got a smile on his face, and even when he gets frustrated he never gives up. Everyone could take a lesson from him in how to enjoy the small things, the next milestone, and just relax. Don't get me wrong, he's still a 15 month old baby and he's not a bundle of joy all the time. But he only fusses when there's a legitimate reason (ie. MRSA), and once it's fixed he's all smiles again. He's just happy to be here!
On top of all of this, I am taking Jeffrey to the doctor tomorrow. I have been meaning to switch him to Children's for awhile now, but I finally got the appointment made. So he'll be a new patient, and I really hope they listen to me and address my concerns. I really think that Jeffrey is borderline diabetic or has Type 1 diabetes. He constantly has to have a drink in his hand, and if we're out in public, he has to stop at every water fountain for a sip. He has other symptoms too, but his last doctor thought I was just a paranoid mom and told me it would pass. Well, he's almost 5 now, and it hasn't passed. Time for a new doctor. And hopefully they'll address his eating habits (or lack there of) too. Although fixing his insulin, if that's the problem, will be a good start! Don't get me wrong, I have no desire to have two sick children. None. Promise. I spend enough time at the hospital as it is, more visits are really not necessary. But my mom gut has been telling me this for too long to ignore any more. I pray that everything comes back normal, and I pray that the doctors will do the necessary tests.
I think that's all I have for tonight. Early appointment tomorrow. Three appointments Thursday. Hopefully all with good news!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Tuesday, October 29, 2013
Friday, October 25, 2013
A Day in The Life of a Mom with a Special Needs Child
I've had this blog in my head for a few days now. It stems from a conversation I had with my sister, as well as an article I read on how to deal with a mom who's lost a child. Both the conversation and the article were extremely helpful to me and I've gained some new perspective on my own life. I've decided not to be quite so hard on myself.
One of the hardest things to come to terms with as a mom is that your child might not be "normal." With some disabled children, you can tell by looking at them that they have special needs. For instance, a child with Down Syndrome or Shaken Baby Syndrome. Those are pretty easy to spot. But what about the other disorders? Congenital heart disease, a lung disorder, a mild form of autism. Those are much harder to recognize. And so, because we don't physically see it, it must not be as difficult, they must not be as needy. Right?
Wrong.
Jaxson looks pretty normal, if you didn't see him on a regular basis, you might not know that he has special needs. The only thing a new person might notice about Jaxson is that his eyes are kind of far apart. Of course, that's after the pins are out. Some people might even notice his scar, but once it heals it's not easy to see. So his special needs aren't that bad, right? I wish.
When I look my Jaxson, I don't see a kid with a disability. I see my baby boy with gorgeous blue eyes and a smile that lights up whatever room he's in. I see an ornery, playful one year old. Sure, he's a little behind developmentally, but it's slight enough that parents of "normal" children would never notice. That's how the mom of a special needs child feels. We don't see the sickness, we don't see the limitations. We see our child as any of our other children, we love them fiercely, we would lay down our lives for them, we believe they are capable of overcoming life's obstacles and we believe that they can do anything they want to do. All children are an inspiration to their parents. Special needs children are no different, and I would argue that they are even more of an inspiration.
It's hard to remember that Jaxson is a pretty sick kid. He's so happy all the time! He loves to play, he loves to smile, his laugh is incredible contagious and he enjoys testing mom and dad to see how far he can push us. He gets swatted on the bottom or hand if he does something wrong. He's smart, really smart. But, as we've all seen, any of that can change in a heartbeat. So, to give you an idea of what some moms go through, I wanted to share the things I do on a regular basis to care for Jaxson.
Every day when I get up, I have to prepare Jaxson's breakfast. Now that he's on Pediasure Peptide, it's much simpler than it used to be. I measure out 5.5 ounces of food and mix with 20mL of water. Prime the tube. Get any medications ready that he needs. Feed him through his tube. That has become quite normal and doesn't even seem awkward anymore. Change his diaper, apply eczema lotion, get Jeffrey breakfast. Somewhere in there I manage to down a couple of cups of coffee. Then it's halftime for Jaxson and I get to hang out with Jeffrey if he sits still long enough. Get Jeffrey ready for school and on the bus. Get lunch ready for Jaxson, follow same procedure as breakfast. Now it's time for one on one time. That means that even though Jaxson thinks we're playing, we're actually doing therapy. Incorporating working on new sounds and tasks with whatever game he wants to play. Sure, it sounds like fun, but after a few hours, it's quite exhausting. Both mentally and emotionally. For Jaxson, right now we are working on me signs and sounds. He's getting pretty good at using signs, but doesn't understand how to use them on his own yet. The only thing he currently says is "mama" and cannot make any other vowel or consonant sounds. We are working on "moo". I also help him with his OT and PT goals. That means working with him on reaching up, picking up a toy form a standing position without sitting down first, standing on his own, grasping small objects with his fingers. Things you don't think about with other kids, Jaxson has to work really hard to do. After that, it's nap time again and I get to pick p our playtime mess, work on whatever I need to do on the computer and make sure the house stays relatively neat so that Jayson doesn't walk into a disaster when he gets home. Jeffrey and Jayson arrive home roughly at the same time, and the rest of the evening is spent with the family. And that's a day with no appointments.
Appointment days are different. Monday we have OT at 9:30, Thursday we have PT at 8:15 and every other Thursday we have Speech at 9:30. Plus any other appointments we have. For example, yesterday we had PT, Cardiology and Plastic Surgery, all before noon. Sometimes we have more than one day like that. It throws off Jaxson's schedule every time. So keeping him on any kind of schedule is nearly impossible. It's days like that that I'm actually thankful for the feeding tube, because keeping him on his feeding schedule is so important. It's taken me up until now to get Jaxson to take more than six ounces. Anytime I tried it before, he would get sick because it was too much food. Getting him enough nutrition is hard enough without having him skip meals.
And let's not forget about the other factors of having a child with special needs. There's the mental and emotional toll it takes on moms and dads. There's the financial aspect of how much goes into caring for a special needs child. Unexpected hospital stays can cost upwards of $100 just in gas for us, not to mention food and any other necessities that come up. Another things I hadn't thought about is the cost of diapers and wipes. Anytime Jaxson gets an antibiotic, he gets horrible diarrhea. So I probably change 10 diapers a day as opposed to the normal 5-6. And I might use three wipes rear change as opposed to one.
In any given day we have to watch Jaxson carefully. Right now, I'm watching him for dehydration on top of everything else. We have to watch his skin color, how much modeling does his skin have and is it because he's cold, mad or is it a circulation problem. We are watching his head for infection, and that's something that will continue until the distractors come out. I have to keep a constant eye on what he's doing because he often tries things that he can't do. For instance, he climbs onto the one step he can get on with the get up, then he'll hold on to the gate and get upset when he can't get down. Or he will fall off the step and hit his head on the floor. Sure, other kids do that, but other kids don't have metal and screws attached to their skulls. We have to keep en eye on his bruises to make sure they go away properly, especially the ones from where he gets poked a million times for one IV. I check his medical record daily, looking for clues as to what his diagnosis might be. I watch his balance, his temperature, feel his head and try to get him to take food by mouth. I clean his head, clean his mic key button, watch his eyes and monitor his hearing as well as trying to keep his hearing aids in.
There is so much that goes into caring for a child with special needs, and I'm sure I didn't even include everything, I do all of these things on a daily basis, so it's become normal and I don't think about it as being something extra.but probably the hardest part about having a child with special needs is making sure that Jeffrey is okay. Siblings of children with special needs are often overlooked and bypassed by most. But the biggest emotional stressor I have is making sure that Jeffrey has as normal of a day as possible. He's only four, almost five, and you would think he's grown. He's incredibly smart, he's super sensitive, and he has a bigger heart than any kid I've ever met. He loves his brother more than he'll ever tell you, and when Jaxson goes to the hospital, Jeffrey has a very hard time with it. He loves to go to the clubhouse, but what he really wants is everyone back home. He gets very emotional and cries a lot. He throws fits for no reason, he talks back and he's getting a nasty attitude with us. Thankfully, this hasn't spread outside the house because he's fabulous at school, but it's something we're trying to work on with him. He is dying to learn and finds documentaries and learning cartoons on Netflix. He can tell you all about an aardvark and whales and dinosaurs. He has an incredible vocabulary and can count to 20 mostly without help. He recognizes numbers off the bat. But he doesn't know his letters hardly at all and Jayson and I are beginning to suspect dyslexia. He also refuses to learn how to write, and he doesn't want to sit down and let us teach him except on rare occasions. He eats like a bird, and we sometimes have to take away toys or fun things because he refuses to eat what he's asked for. I've talked to the doctors about reflux for years, but gotten nowhere. I'm going to take him to children's for his next primary care visit and have his records transferred. I've also got resources for behavioral psychologists and social workers who might be able to help us get him back on track. It's not that he's a bad kid, far from it. It is extremely out of his norm to act like this, so we know something is up but we don't know how OT fix it. We're hoping that with some advice from a professional, we'll get our normal Jeffrey back. The one that listens, only throws fits occasionally, and eats without a fight.
There is so much that goes into being the parent of a child with special needs. Things that most parents never have to deal with and would never think of. I am so thankful that I've found some groups on Facebook to get involved with as well as for all of the support on Jaxson's page. People we have never met are reaching out every day to offer their support and prayers. It means the world to me, but it would mean more if more of my friends reached out personally. Inspired by the article I read on how to handle a mom who's lost a child, here are a few guidelines on how to handle a mom of a special needs child:
1. Don't just reach out when things look hard. Things are always hard. Sure, when things are difficult we need more support, but when things are good we still need it. Those are the times when we can focus a little bit of attention on the other parts of our lives, like having friends and making sure siblings are taken care of. We need support all the time, so send your friend a message just because you want to, not because you think she needs it at the time.
2. Don't be scared. We are scared enough for our kids, we don't need you to be scared too. No one wants to have we child with special needs, but some of us were blessed with them and feel extremely lucky to have them. They aren't contagious, unless you consider their love of life contagious. They are kids too, they just need a little extra love.
3. If you're going to send something to one child, make sure you send something for the siblings. There is nothing harder to deal with than the fit of a sibling who has to watch their brother or sister receive special gifts and treatment on a regular basis while they get none. A few people have sent us things for Jaxson, and we appreciate the ones who have also sent things for Jeffrey. He's in this as much as we are!
4. If she bails on you at the last minute, don't be angry. Some days are harder than others and we just can't force ourselves to do anything else. Believe me, we WANT to hang out with you and get out of the house for awhile. W need those breaks and we crave them. But sometimes it's just too much. We're exhausted all the time, mentally, physically and emotionally. Not only do we need to rest when we've had a bad day, but we know we wouldn't enjoy the time out and we don't want to bring you down either.
5. Offer to babysit. Even if it's just for a couple of hours, parents of special needs kids NEVER get to spend time together. All they need is a couple of hours every once in awhile to go out to dinner or take a walk, just the two of them.
6. Be willing to come to them. It's hard enough to get out of the house when you have a special needs child, but to have to go far from home is even harder. Be willing to meet at a place close to them, or simply go to their home and be there. Adult conversation is desperately desired, and having someone there to talk to is huge.
I'm sure I'm missing a few things, but what I really want to hit on is that we need help all the time. Mentally, emotionally and financially. Most families of children with special needs are on one income, as we are. Government programs help, sure, but not with everything. And not every family qualifies to receive help. So when you see a donation request, understand that it's not because someone is trying to take your money or take advantage of you. Most likely, their situation is similar to ours and they need just a little extra help to get by.
I hope that this helps people realize just how different it is to have a child with special needs. It's a life and personality altering thing. So before you judge, make sure you have all the facts. I was very appreciative that my sister wanted to ask me questions about this. I never really considered all that we do on a daily basis that is different from everyone else. Explaining things to her helped me realize that and I wanted to share my experience and thoughts with those of you that may have the same questions.
Please remember that we have a t-shirt campaign until the end of the month. Tis campaign is not going to bring us a lot of money, but it will bring a little. It is more about raising awareness on birth defects and the impact they have on everyone around them. It only goes until the end of the month, so please get yours soon! www.booster.com/jaxsonsride
We also have two places you can donate money. One is directly on the Facebook page (www.facebook.com/JaxsonsRide) on the donation tab. The other place is Jaxson's GoFundMe page, which can be found at www.gofundme.com/jaxsonsride. Even if it's five bucks, it will help!
And if anyone ever has questions, please do not hesitate to ask! I am more than willing to discuss anything openly about Jaxson or raising a child with special needs. If someone you know wants to speak with me but doesn't know me directly, please give them Jaxson's Facebook page and have them send a message. This is all about awareness and education. Besides figuring out what Jaxson's diagnosis might be, this is my other mission. Raising awareness on birth defects, what can cause them and how to cope with them will play a huge part in the support families receive when they have to go through something like this.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
One of the hardest things to come to terms with as a mom is that your child might not be "normal." With some disabled children, you can tell by looking at them that they have special needs. For instance, a child with Down Syndrome or Shaken Baby Syndrome. Those are pretty easy to spot. But what about the other disorders? Congenital heart disease, a lung disorder, a mild form of autism. Those are much harder to recognize. And so, because we don't physically see it, it must not be as difficult, they must not be as needy. Right?
Wrong.
Jaxson looks pretty normal, if you didn't see him on a regular basis, you might not know that he has special needs. The only thing a new person might notice about Jaxson is that his eyes are kind of far apart. Of course, that's after the pins are out. Some people might even notice his scar, but once it heals it's not easy to see. So his special needs aren't that bad, right? I wish.
When I look my Jaxson, I don't see a kid with a disability. I see my baby boy with gorgeous blue eyes and a smile that lights up whatever room he's in. I see an ornery, playful one year old. Sure, he's a little behind developmentally, but it's slight enough that parents of "normal" children would never notice. That's how the mom of a special needs child feels. We don't see the sickness, we don't see the limitations. We see our child as any of our other children, we love them fiercely, we would lay down our lives for them, we believe they are capable of overcoming life's obstacles and we believe that they can do anything they want to do. All children are an inspiration to their parents. Special needs children are no different, and I would argue that they are even more of an inspiration.
It's hard to remember that Jaxson is a pretty sick kid. He's so happy all the time! He loves to play, he loves to smile, his laugh is incredible contagious and he enjoys testing mom and dad to see how far he can push us. He gets swatted on the bottom or hand if he does something wrong. He's smart, really smart. But, as we've all seen, any of that can change in a heartbeat. So, to give you an idea of what some moms go through, I wanted to share the things I do on a regular basis to care for Jaxson.
Every day when I get up, I have to prepare Jaxson's breakfast. Now that he's on Pediasure Peptide, it's much simpler than it used to be. I measure out 5.5 ounces of food and mix with 20mL of water. Prime the tube. Get any medications ready that he needs. Feed him through his tube. That has become quite normal and doesn't even seem awkward anymore. Change his diaper, apply eczema lotion, get Jeffrey breakfast. Somewhere in there I manage to down a couple of cups of coffee. Then it's halftime for Jaxson and I get to hang out with Jeffrey if he sits still long enough. Get Jeffrey ready for school and on the bus. Get lunch ready for Jaxson, follow same procedure as breakfast. Now it's time for one on one time. That means that even though Jaxson thinks we're playing, we're actually doing therapy. Incorporating working on new sounds and tasks with whatever game he wants to play. Sure, it sounds like fun, but after a few hours, it's quite exhausting. Both mentally and emotionally. For Jaxson, right now we are working on me signs and sounds. He's getting pretty good at using signs, but doesn't understand how to use them on his own yet. The only thing he currently says is "mama" and cannot make any other vowel or consonant sounds. We are working on "moo". I also help him with his OT and PT goals. That means working with him on reaching up, picking up a toy form a standing position without sitting down first, standing on his own, grasping small objects with his fingers. Things you don't think about with other kids, Jaxson has to work really hard to do. After that, it's nap time again and I get to pick p our playtime mess, work on whatever I need to do on the computer and make sure the house stays relatively neat so that Jayson doesn't walk into a disaster when he gets home. Jeffrey and Jayson arrive home roughly at the same time, and the rest of the evening is spent with the family. And that's a day with no appointments.
Appointment days are different. Monday we have OT at 9:30, Thursday we have PT at 8:15 and every other Thursday we have Speech at 9:30. Plus any other appointments we have. For example, yesterday we had PT, Cardiology and Plastic Surgery, all before noon. Sometimes we have more than one day like that. It throws off Jaxson's schedule every time. So keeping him on any kind of schedule is nearly impossible. It's days like that that I'm actually thankful for the feeding tube, because keeping him on his feeding schedule is so important. It's taken me up until now to get Jaxson to take more than six ounces. Anytime I tried it before, he would get sick because it was too much food. Getting him enough nutrition is hard enough without having him skip meals.
And let's not forget about the other factors of having a child with special needs. There's the mental and emotional toll it takes on moms and dads. There's the financial aspect of how much goes into caring for a special needs child. Unexpected hospital stays can cost upwards of $100 just in gas for us, not to mention food and any other necessities that come up. Another things I hadn't thought about is the cost of diapers and wipes. Anytime Jaxson gets an antibiotic, he gets horrible diarrhea. So I probably change 10 diapers a day as opposed to the normal 5-6. And I might use three wipes rear change as opposed to one.
In any given day we have to watch Jaxson carefully. Right now, I'm watching him for dehydration on top of everything else. We have to watch his skin color, how much modeling does his skin have and is it because he's cold, mad or is it a circulation problem. We are watching his head for infection, and that's something that will continue until the distractors come out. I have to keep a constant eye on what he's doing because he often tries things that he can't do. For instance, he climbs onto the one step he can get on with the get up, then he'll hold on to the gate and get upset when he can't get down. Or he will fall off the step and hit his head on the floor. Sure, other kids do that, but other kids don't have metal and screws attached to their skulls. We have to keep en eye on his bruises to make sure they go away properly, especially the ones from where he gets poked a million times for one IV. I check his medical record daily, looking for clues as to what his diagnosis might be. I watch his balance, his temperature, feel his head and try to get him to take food by mouth. I clean his head, clean his mic key button, watch his eyes and monitor his hearing as well as trying to keep his hearing aids in.
There is so much that goes into caring for a child with special needs, and I'm sure I didn't even include everything, I do all of these things on a daily basis, so it's become normal and I don't think about it as being something extra.but probably the hardest part about having a child with special needs is making sure that Jeffrey is okay. Siblings of children with special needs are often overlooked and bypassed by most. But the biggest emotional stressor I have is making sure that Jeffrey has as normal of a day as possible. He's only four, almost five, and you would think he's grown. He's incredibly smart, he's super sensitive, and he has a bigger heart than any kid I've ever met. He loves his brother more than he'll ever tell you, and when Jaxson goes to the hospital, Jeffrey has a very hard time with it. He loves to go to the clubhouse, but what he really wants is everyone back home. He gets very emotional and cries a lot. He throws fits for no reason, he talks back and he's getting a nasty attitude with us. Thankfully, this hasn't spread outside the house because he's fabulous at school, but it's something we're trying to work on with him. He is dying to learn and finds documentaries and learning cartoons on Netflix. He can tell you all about an aardvark and whales and dinosaurs. He has an incredible vocabulary and can count to 20 mostly without help. He recognizes numbers off the bat. But he doesn't know his letters hardly at all and Jayson and I are beginning to suspect dyslexia. He also refuses to learn how to write, and he doesn't want to sit down and let us teach him except on rare occasions. He eats like a bird, and we sometimes have to take away toys or fun things because he refuses to eat what he's asked for. I've talked to the doctors about reflux for years, but gotten nowhere. I'm going to take him to children's for his next primary care visit and have his records transferred. I've also got resources for behavioral psychologists and social workers who might be able to help us get him back on track. It's not that he's a bad kid, far from it. It is extremely out of his norm to act like this, so we know something is up but we don't know how OT fix it. We're hoping that with some advice from a professional, we'll get our normal Jeffrey back. The one that listens, only throws fits occasionally, and eats without a fight.
There is so much that goes into being the parent of a child with special needs. Things that most parents never have to deal with and would never think of. I am so thankful that I've found some groups on Facebook to get involved with as well as for all of the support on Jaxson's page. People we have never met are reaching out every day to offer their support and prayers. It means the world to me, but it would mean more if more of my friends reached out personally. Inspired by the article I read on how to handle a mom who's lost a child, here are a few guidelines on how to handle a mom of a special needs child:
1. Don't just reach out when things look hard. Things are always hard. Sure, when things are difficult we need more support, but when things are good we still need it. Those are the times when we can focus a little bit of attention on the other parts of our lives, like having friends and making sure siblings are taken care of. We need support all the time, so send your friend a message just because you want to, not because you think she needs it at the time.
2. Don't be scared. We are scared enough for our kids, we don't need you to be scared too. No one wants to have we child with special needs, but some of us were blessed with them and feel extremely lucky to have them. They aren't contagious, unless you consider their love of life contagious. They are kids too, they just need a little extra love.
3. If you're going to send something to one child, make sure you send something for the siblings. There is nothing harder to deal with than the fit of a sibling who has to watch their brother or sister receive special gifts and treatment on a regular basis while they get none. A few people have sent us things for Jaxson, and we appreciate the ones who have also sent things for Jeffrey. He's in this as much as we are!
4. If she bails on you at the last minute, don't be angry. Some days are harder than others and we just can't force ourselves to do anything else. Believe me, we WANT to hang out with you and get out of the house for awhile. W need those breaks and we crave them. But sometimes it's just too much. We're exhausted all the time, mentally, physically and emotionally. Not only do we need to rest when we've had a bad day, but we know we wouldn't enjoy the time out and we don't want to bring you down either.
5. Offer to babysit. Even if it's just for a couple of hours, parents of special needs kids NEVER get to spend time together. All they need is a couple of hours every once in awhile to go out to dinner or take a walk, just the two of them.
6. Be willing to come to them. It's hard enough to get out of the house when you have a special needs child, but to have to go far from home is even harder. Be willing to meet at a place close to them, or simply go to their home and be there. Adult conversation is desperately desired, and having someone there to talk to is huge.
I'm sure I'm missing a few things, but what I really want to hit on is that we need help all the time. Mentally, emotionally and financially. Most families of children with special needs are on one income, as we are. Government programs help, sure, but not with everything. And not every family qualifies to receive help. So when you see a donation request, understand that it's not because someone is trying to take your money or take advantage of you. Most likely, their situation is similar to ours and they need just a little extra help to get by.
I hope that this helps people realize just how different it is to have a child with special needs. It's a life and personality altering thing. So before you judge, make sure you have all the facts. I was very appreciative that my sister wanted to ask me questions about this. I never really considered all that we do on a daily basis that is different from everyone else. Explaining things to her helped me realize that and I wanted to share my experience and thoughts with those of you that may have the same questions.
Please remember that we have a t-shirt campaign until the end of the month. Tis campaign is not going to bring us a lot of money, but it will bring a little. It is more about raising awareness on birth defects and the impact they have on everyone around them. It only goes until the end of the month, so please get yours soon! www.booster.com/jaxsonsride
We also have two places you can donate money. One is directly on the Facebook page (www.facebook.com/JaxsonsRide) on the donation tab. The other place is Jaxson's GoFundMe page, which can be found at www.gofundme.com/jaxsonsride. Even if it's five bucks, it will help!
And if anyone ever has questions, please do not hesitate to ask! I am more than willing to discuss anything openly about Jaxson or raising a child with special needs. If someone you know wants to speak with me but doesn't know me directly, please give them Jaxson's Facebook page and have them send a message. This is all about awareness and education. Besides figuring out what Jaxson's diagnosis might be, this is my other mission. Raising awareness on birth defects, what can cause them and how to cope with them will play a huge part in the support families receive when they have to go through something like this.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Wednesday, October 16, 2013
More Worries
Today did not go as planned at all. We were supposed to be going home. Instead we are here for who knows how long. Instead, we have another IV, an infection that is not responding to oral antibiotics, a new infection on the other pin, and the possibility of bigger problems. I am not supposed to be here tonight! I am supposed to be at home with my husband and other son. Why can't Jaxson catch a break? Why can't WE catch a break? It's like when something good happens, Jaxson has to trump it with some crazy problem that the doctors can't figure out, let alone treat. Jaxson has been on antibiotics for four days. His pin is no better and still oozes puss when I clean and distract. His other pin is turning red, and his skin is taking hours to return to it's normal color after I'm done. His refill is fine, so it's not wholly a circulation problem. No one can figure it out. I am terrified to get these test results back. I'm scared that the infection has spread to parts of his body that are vital to life. Like his brain. Or bone. Or blood.
I'm worried that we'll be here for weeks. I am in no way, shape or form prepared for that. I wouldn't begin to know where to start. I can't even think of anything else to say about it. So, for now, I suppose I will sign off. My stomach hurts and I need to get some rest if I'm going to be strong for my baby. Good night.
"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
I'm worried that we'll be here for weeks. I am in no way, shape or form prepared for that. I wouldn't begin to know where to start. I can't even think of anything else to say about it. So, for now, I suppose I will sign off. My stomach hurts and I need to get some rest if I'm going to be strong for my baby. Good night.
"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
Monday, October 14, 2013
Final Update
Tonight I have too much to say for a Facebook post. Today has been an over zealous roller coaster with way too many ups and downs. I got a good 5 hours of sleep last night, and that's consecutive hours too! Jayson came to see me and bring me real coffee before he went to work, only to find out when he got there that for whatever reason, his company doesn't work on Columbus Day. Which was nice because he got to spend the day with Jeffrey. Then they both came back to visit, right around the time Kim and Kaitlyn showed up to visit. Jeffrey, of course, went straight to the clubhouse, so Jayson and I visited with the girls and then got a few minutes to ourselves before I went and picked Jeffrey up. I did Jaxson's first distraction before picking Jeffrey up, so Jaxson got to calm down with daddy. Jaxson hit his head today at some point, I can't remember when, and this afternoon he managed to pull out yet another IV. Mind you, it took the IV team 4 sticks to get it in there, so the thought of placing another line filled me with dread. Thankfully, the doctors opted to start his oral meds first and see how they do. I pray that this works so we can go home tomorrow. Dr. Pearson will be in tomorrow, and I cannot wait to talk to a doctor that knows Jaxson. Tonight's distraction was horrid. I actually broke down after I got him calmed down. I won't put you through knowing the details, just know that I have new concerns now. For one, Jaxson has a nice little rash on his arms. We think it's whatever the linen is washed in here because it's happened before, but when the nurse tried to order sterile sheets, she was told they don't do those anymore because the linens are washed with hypoallergenic detergent. We use ALL Free & Clear at home with no problems, so I'm not sure what they're using, but if it's not the cause then we need to figure out what is. Second, Jaxson's infected pin turned a nice shade of purple after his distraction and cleaning. I have no idea if that's okay or not, and the nurse hasn't heard back from the doctor yet. It's still oozing and ultra-extremely sensitive. I mean, you can't even brush his head anywhere near the pin and expect him not to cry. Third, Jaxson's little face and ears always turn bright red after a distraction, and sometimes he gets a little rash around his neck. Tonight, his skin didn't pale back to it's normal color for over an hour. Now, that could just be something related to his heart condition, and I can accept that. But I really need to talk to Dr. Pearson. He probably knows this kid better than any other doctor in this place. And then tonight, to end the night on a happy note, my niece did the nicest thing for us. She took her hard earned money (she's 11, so it's definitely hard to earn!) and bought one of Jaxson's shirts. She knew full well that if she had just asked, we would have given her one, but she wanted to contribute and this was how she chose to do it. I'm tearing up thinking about it! She is such a special little girl.
If you've made it past my runon (I'm sure there's a few) sentences and all-over-the-place rambling, thank you. I am trying to be more transparent in how I do on a daily basis, and I felt that this had to get out. I, me, the non emotional, logical person I am, cried at least twice today. I don't think you can ever feel true fear or dread until you've had to sleep (or stand in this case) next to your child with a hand on his chest to make sure he's breathing. Or until you've watched his skin change color and been forced to wait to act because he might just be cold. It's terrifying. It's something I do not think about on a regular basis, not just because it's scary, but because part of me thinks it's irrational to feel that way. I mean, look at Jaxson. He's so happy! Always! It doesn't matter how many times we come here or how long each stay is, Jaxson is as happy here as he is at home. So how can such a happy kid, who has to be in a tremendous amount of pain, have anything seriously wrong with him? Oh yeah, there's those silly pins sticking out of his head. Even once the pins and the distractor are removed, there's no guarantee that those sutures won't grow back together too quickly again. There's no guarantee that the fluid and possible chiari malformation will relieve themselves with this newfound space. There are so many unanswered questions with Jaxson. And no light at the end of the tunnel as far as finding a syndrome that matches all of his symptoms. I honestly don't care what it is, I just want to know so that he can be properly treated. I so much feel like the doctors are dissing something. Don't ask me what, these are some of the best doctors in the world and we are incredibly lucky to live so close. But there's just a nag in my head, constantly, about this. Jayson would tell me that I worry too much and that the doctors know what they're doing. And he's right. But that doesn't change what I think.
Looks like this turned into an actual blog. So basically, here's the plan: Dr. Pearson will come in and look at Jaxson tomorrow. We'll see what he says about the infection, the skin changing color, the potential allergy issue, and hopefully go home. I suppose I didn't need a blog to tell you that, but thanks for humoring me tonight. God bless, updates to continue in the morning.
If you've made it past my runon (I'm sure there's a few) sentences and all-over-the-place rambling, thank you. I am trying to be more transparent in how I do on a daily basis, and I felt that this had to get out. I, me, the non emotional, logical person I am, cried at least twice today. I don't think you can ever feel true fear or dread until you've had to sleep (or stand in this case) next to your child with a hand on his chest to make sure he's breathing. Or until you've watched his skin change color and been forced to wait to act because he might just be cold. It's terrifying. It's something I do not think about on a regular basis, not just because it's scary, but because part of me thinks it's irrational to feel that way. I mean, look at Jaxson. He's so happy! Always! It doesn't matter how many times we come here or how long each stay is, Jaxson is as happy here as he is at home. So how can such a happy kid, who has to be in a tremendous amount of pain, have anything seriously wrong with him? Oh yeah, there's those silly pins sticking out of his head. Even once the pins and the distractor are removed, there's no guarantee that those sutures won't grow back together too quickly again. There's no guarantee that the fluid and possible chiari malformation will relieve themselves with this newfound space. There are so many unanswered questions with Jaxson. And no light at the end of the tunnel as far as finding a syndrome that matches all of his symptoms. I honestly don't care what it is, I just want to know so that he can be properly treated. I so much feel like the doctors are dissing something. Don't ask me what, these are some of the best doctors in the world and we are incredibly lucky to live so close. But there's just a nag in my head, constantly, about this. Jayson would tell me that I worry too much and that the doctors know what they're doing. And he's right. But that doesn't change what I think.
Looks like this turned into an actual blog. So basically, here's the plan: Dr. Pearson will come in and look at Jaxson tomorrow. We'll see what he says about the infection, the skin changing color, the potential allergy issue, and hopefully go home. I suppose I didn't need a blog to tell you that, but thanks for humoring me tonight. God bless, updates to continue in the morning.
The First Step to Recovery is Recognizing That There's a Problem
Today I am blogging from the hospital. It's been awhile since I've done that. I always say I'm going to, but then I never do because I don't want to deal with the emotions that blogging brings out. I am going to stop doing that, though, and just lay my heart out here for everyone. I need to quit ignoring the things I'm feeling, quit being so unapproachable, so walled off. So be ready, because things are about to change around here!
First, I want to address the issue or strength. I know I've mentioned before how people tell me that I'm so strong and they don't know how I deal with everything that's going on in life. Here's the secret: I don't. Seriously. I don't deal with the emotions that Jaxson brings to my heart and mind. It causes problems at home because I'm snappy, irritable and sometimes very hard to deal with. I give Jayson a ton of credit for putting up with my inability to recognize certain emotions and deal with them properly. He has got to be one of the most patient men in the world! I will be the first to tell you that I do not feel strong at all. I have break downs after long periods of bottling up my emotions, it's just that no one sees that. I hide it pretty well, at least on the Internet.
Second, I want to discuss said feelings. I'm terrified. I'm anxious. I'm nervous. I'm angry. I'm sensitive to things that normally wouldn't bother me. I love my family deeply, even if I can't show it. I'm proud. I'm thankful. I'm a chaotic mess. I have two beautiful boys who have a bond that will never be broken. When Jeffrey and Jayson left last night, Jeffrey made sure to give his brother a hug. And then he kissed him right on the lips. I almost lost it right there. He's such a sweet, caring and lovable little boy, a picture of perfection. I'm so scared that he's not getting what he needs. I'm scared that Jaxson is never going to get out of coming to this place all the time. I'm scared that Jayson and I won't be able to provide everything these boys need in order to grow up without a care in the world. I'm anxious and nervous for obvious reasons. There's always something new with Jaxson. He just can't catch a break! I get nervous every time we have to bring him to the ER because I never know what they're going to find next. I'm angry at the world. What did Jaxson do to deserve this? Why must he go through all of this pain and suffering at such a young age? Why did this happen to OUR family? Never once did Jayson and I think that anything like this could happen when we planned to have Jaxson. Jeffrey is perfectly healthy, why should another baby be different? I'm proud of my family and thankful that I have their love and support. Proud of Jeffrey for how he handles his brother and for his ability to adjust and moveop on. He's a huge inspiration to me. I'm proud to be Jaxson's mom. God chose me. I had no say in the matter, and even with everything that's going on, I wouldn't change it for the world. That is one amazing little boy, a pillar of strength and the epitome of what every parent wants in a baby: happy, playful, not a care in the world. How this baby doesn't fuss on a regular basis, I will never know or understand. And without the support of Jayson, there's no way I could handle this. He is my rock, my shoulder to lean on, my giver of comfort. He's my best friend, my partner and my soul mate. I am lucky to have him as my husband and the father of my children.
The problem with me discussing my emotions is that I really don't know how. I can't even alwaysh identify what I'm feeling, let alone talk about it. I mean, I know what certain emotions and feelings are, but to tell you that's what I'm feeling is just not something I can do. It's something I need to work on, and I'm hoping that if I blog more on a regular basis, then I can figure all of this stuff out. For instance, right now I should be feeling something, anything. But I'm just here, sitting at the hospital, not thinking about anything that's going on in my life. I literally have almost no feeling at all. I'm not tired, I'm not sad, I'm not mad, I'm not happy or anxious or nervous. I might be a little worried because we don't have the blood cultures back and I haven't seen the doctor yet. But I'm not. It feels more like a minor irritation than anything else. I feel like that's weird. I should be more concerned. But the rational side of me shuts that down. If there was really something to worry about, we'd know by now, right?
This is the other problem, our PCA came in to do vitals and now I've totally lost my train of thought. I'm a little restless and I feel like there's something I should be doing, but I also know that I'm right where I need to be. I guess I just want to get to the bottom of this emotion thing. Why don't I feel much? Or do I feel my emotions just fine and not recognize them? Or do I recognize what I'm feeling and keep it at an arms length so I don't have to be fully immersed in said emotion? These are the questions I need to answer. I need to work on paying attention and letting go. It's terrifying to think about, but if I'm going to be the mom my boys need, I have to figure this out sooner rather than later. That doesn't mean that I'm going to turn into a wet mop or some dramatic diva, but I need to at least consciously recognize what I'm feeling and address it properly.
Let's talk about Jeffrey for a minute. I cannot believe he's going to be 5 in December! Where has the time gone? It took my baby and gave me back a little boy. A little person with his own personality, his own needs and his own developing attitude. He's so perfect in so many ways, but there is reason to worry about him. Yesterday, Jayson said he was looking out the window and so J asked Jeffrey if he was looking at all the pretty girls outside. Jeffrey told him no, that he was looking for me. Then he sat down on the couch quietly for awhile before randomly bursting into tears. He told Jayson that he didn't know why he was crying. The night before we came here, I came upstairs to find Jeffrey in our bed with his head close to the edge of the bed, on his back, with his right arm extended above his head and toward his brother who as asleep in his bouncer in our room. I wish I had had my phone to take a paid true. A first I just thought that he wanted to be close to his brother because they share a room. Now, though, I think he knew something was wrong and wanted to make sure Jaxson was okay. He has this ability to know when something is wrong with someone, and he always knows how to make it better. He's the light in our house, the joy that keeps us laughing and loving. He is what makes us who we are. I want to hug him and kiss his perfect little face all the time, but now he's too big to hold down, so I sneak my kisses and hugs as often as possible.
And then there's Michael, Jayson's son and my step-son. It's really weird to type that. I'm a stepmom. Odd. Anyway, Michael just always seems to show up right when we need him. He was here last year when Jaxson was in for his first skull surgery, and he helped tremendously with Jeffrey. He watched Jeffrey yesterday and volunteered to watch him today if Jayson had to work. He's a great kid with a heart of gold, and at 19 years old, I'm sure he has better ideas of what he can do with his time. He is not obligated to watch Jeffrey, but he always says yes when we ask. Is extremely helpful, probably more than he even realizes.
Hopefully we'll get an answer on a plan shortly. For know, I am going to relax and do a crossword.
"Life isn't the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
First, I want to address the issue or strength. I know I've mentioned before how people tell me that I'm so strong and they don't know how I deal with everything that's going on in life. Here's the secret: I don't. Seriously. I don't deal with the emotions that Jaxson brings to my heart and mind. It causes problems at home because I'm snappy, irritable and sometimes very hard to deal with. I give Jayson a ton of credit for putting up with my inability to recognize certain emotions and deal with them properly. He has got to be one of the most patient men in the world! I will be the first to tell you that I do not feel strong at all. I have break downs after long periods of bottling up my emotions, it's just that no one sees that. I hide it pretty well, at least on the Internet.
Second, I want to discuss said feelings. I'm terrified. I'm anxious. I'm nervous. I'm angry. I'm sensitive to things that normally wouldn't bother me. I love my family deeply, even if I can't show it. I'm proud. I'm thankful. I'm a chaotic mess. I have two beautiful boys who have a bond that will never be broken. When Jeffrey and Jayson left last night, Jeffrey made sure to give his brother a hug. And then he kissed him right on the lips. I almost lost it right there. He's such a sweet, caring and lovable little boy, a picture of perfection. I'm so scared that he's not getting what he needs. I'm scared that Jaxson is never going to get out of coming to this place all the time. I'm scared that Jayson and I won't be able to provide everything these boys need in order to grow up without a care in the world. I'm anxious and nervous for obvious reasons. There's always something new with Jaxson. He just can't catch a break! I get nervous every time we have to bring him to the ER because I never know what they're going to find next. I'm angry at the world. What did Jaxson do to deserve this? Why must he go through all of this pain and suffering at such a young age? Why did this happen to OUR family? Never once did Jayson and I think that anything like this could happen when we planned to have Jaxson. Jeffrey is perfectly healthy, why should another baby be different? I'm proud of my family and thankful that I have their love and support. Proud of Jeffrey for how he handles his brother and for his ability to adjust and moveop on. He's a huge inspiration to me. I'm proud to be Jaxson's mom. God chose me. I had no say in the matter, and even with everything that's going on, I wouldn't change it for the world. That is one amazing little boy, a pillar of strength and the epitome of what every parent wants in a baby: happy, playful, not a care in the world. How this baby doesn't fuss on a regular basis, I will never know or understand. And without the support of Jayson, there's no way I could handle this. He is my rock, my shoulder to lean on, my giver of comfort. He's my best friend, my partner and my soul mate. I am lucky to have him as my husband and the father of my children.
The problem with me discussing my emotions is that I really don't know how. I can't even alwaysh identify what I'm feeling, let alone talk about it. I mean, I know what certain emotions and feelings are, but to tell you that's what I'm feeling is just not something I can do. It's something I need to work on, and I'm hoping that if I blog more on a regular basis, then I can figure all of this stuff out. For instance, right now I should be feeling something, anything. But I'm just here, sitting at the hospital, not thinking about anything that's going on in my life. I literally have almost no feeling at all. I'm not tired, I'm not sad, I'm not mad, I'm not happy or anxious or nervous. I might be a little worried because we don't have the blood cultures back and I haven't seen the doctor yet. But I'm not. It feels more like a minor irritation than anything else. I feel like that's weird. I should be more concerned. But the rational side of me shuts that down. If there was really something to worry about, we'd know by now, right?
This is the other problem, our PCA came in to do vitals and now I've totally lost my train of thought. I'm a little restless and I feel like there's something I should be doing, but I also know that I'm right where I need to be. I guess I just want to get to the bottom of this emotion thing. Why don't I feel much? Or do I feel my emotions just fine and not recognize them? Or do I recognize what I'm feeling and keep it at an arms length so I don't have to be fully immersed in said emotion? These are the questions I need to answer. I need to work on paying attention and letting go. It's terrifying to think about, but if I'm going to be the mom my boys need, I have to figure this out sooner rather than later. That doesn't mean that I'm going to turn into a wet mop or some dramatic diva, but I need to at least consciously recognize what I'm feeling and address it properly.
Let's talk about Jeffrey for a minute. I cannot believe he's going to be 5 in December! Where has the time gone? It took my baby and gave me back a little boy. A little person with his own personality, his own needs and his own developing attitude. He's so perfect in so many ways, but there is reason to worry about him. Yesterday, Jayson said he was looking out the window and so J asked Jeffrey if he was looking at all the pretty girls outside. Jeffrey told him no, that he was looking for me. Then he sat down on the couch quietly for awhile before randomly bursting into tears. He told Jayson that he didn't know why he was crying. The night before we came here, I came upstairs to find Jeffrey in our bed with his head close to the edge of the bed, on his back, with his right arm extended above his head and toward his brother who as asleep in his bouncer in our room. I wish I had had my phone to take a paid true. A first I just thought that he wanted to be close to his brother because they share a room. Now, though, I think he knew something was wrong and wanted to make sure Jaxson was okay. He has this ability to know when something is wrong with someone, and he always knows how to make it better. He's the light in our house, the joy that keeps us laughing and loving. He is what makes us who we are. I want to hug him and kiss his perfect little face all the time, but now he's too big to hold down, so I sneak my kisses and hugs as often as possible.
And then there's Michael, Jayson's son and my step-son. It's really weird to type that. I'm a stepmom. Odd. Anyway, Michael just always seems to show up right when we need him. He was here last year when Jaxson was in for his first skull surgery, and he helped tremendously with Jeffrey. He watched Jeffrey yesterday and volunteered to watch him today if Jayson had to work. He's a great kid with a heart of gold, and at 19 years old, I'm sure he has better ideas of what he can do with his time. He is not obligated to watch Jeffrey, but he always says yes when we ask. Is extremely helpful, probably more than he even realizes.
Hopefully we'll get an answer on a plan shortly. For know, I am going to relax and do a crossword.
"Life isn't the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Friday, October 11, 2013
Pain, Struggle, Joy and Comfort
I haven't blogged for awhile because I haven't been able to bring myself to do it. I don't want to think about what I'm feeling, let alone look back at writings and go through it again. However, writing is what cleanses my soul, and even the not so nice memories are still memories.We are halfway through our distraction process, so it's time to buckle down and get a grip.
Jaxson had his surgery on September 18th, which is also my dad's birthday and two days before my parents anniversary. His knack for timing reared its ugly head once again. But, because my family is awesome, my parents were at the hospital and so was Sam. Sara, God love her, kept Jeffrey for two nights and three days for us. It was a much bigger help than I'm sure she'll ever realize! Everything went according to plan on the day of surgery and they did not think they needed to give him a transfusion. I had previously talked to the doctors about his pain regiment after surgery because I did not want another situation like the last one. If you recall, I wasn't feeling well and had to go home so Jayson stayed the first night of that surgery. Jaxson cried for about 20 hours straight. Only after the pain team came in and we had him on Tylenol, Oxycodone and Dilaudid as often as he was allowed to have them, and it still took almost a day to get his pain under control. The doctors mostly listened. They ordered Morphine instead of Dilauded. I let it go at first because if he could get by with something a little less strong, then that's the way I wanted to go. Jaxson, being Jaxson, said no dice. I attempted to go home that night, but only made it there for about an hour and a half before getting a call to come back. The nurses weren't coming and Jaxson had been crying for 30 minutes. On my way out the door, I called and spoke with the nurse, pretty sternly. She wanted to give Jaxson morphine even though he couldn't have it for another hour. Her boss ok'd it, she said, and it would work faster. Well, don't you think you should check with the parents before doing something like that? And if you had given him his pain medicine on schedule, then we wouldn't have been in that predicament in the first place. So I ended up staying that night and sent Jayson home. The next day, Jaxson did end up needing a blood transfusion because his hemoglobin levels dropped to 6.1 (Normally 10.5-13.5) and then he was moved up to the floor. The rest of the stay was pretty easy, well, as easy as you can expect I guess. I learned how to do the distraction on Sunday and on Monday Jaxson had elbows put on his pins so that they wouldn't stick straight out. We were finally allowed to leave on Tuesday, and let me tell you how excited he was to be home! He was up an moving around as soon as his little bottom hit the floor. It was so good to see him act like his normal self after being stuck (literally) in a cage for a week.
Since we've been home, the distractions have been going pretty well. We had our first breakdown a few days after being home. His left pin would only turn 1.5 times. The right pin turned 3 like it was supposed to. And Jaxson screamed like we just broke his leg on purpose. It was awful. I sobbed for like 10 minutes, Jayson took Jaxson outside and poor Jeffrey ran back and forth trying to figure out why everyone was crying. I'm tearing up thinking about it. That sweet little boy came right over to me and put his arms around my neck and gave me the best hug. Which was amazing. And I cried harder. Now when we do the distraction, Jeffrey disappears to the basement and Jaxson cries as soon as he sees the bag with all of his stuff in it. He knows that when daddy gives him his phone and holds him a certain way that he's going to hurt. And getting the screwdriver (there's no better term for it, it's like a socket wrench but with an allen head) to attach to his pins while he shakes his head is no easy feat. Especially since I try my best not to touch his head because it might hurt. God forbid haha. It's just a really, really hard thing. I do the turning for a variety of reasons, and when it gets to the end (if you can get it to go that far), it actually feels tight. You know how when you screw something into a piece of wood and it gets tight at the end and then you can't turn it any more? Yep, just like that. On my boy's head. I teared up again last night when neither pin would turn all the way. I tear up thinking about what I'm doing to his head. The closest comparison that I have heard is that it's like a palate expander. You put the key in a contraption in the roof of your mouth, turn it, and it widens the palate to create more space. The palate is quite a bit softer than the skull, though, which is why they actually cut into the skull so that a portion of it is pulled away from the rest. That's the part that's expanding out and creating more space for his brain.
Today I woke up on the floor, like just about every other day, and felt like I was okay. I halfway sleepwalked into the kitchen to get Jaxson's food and give Jayson a hug before work. Normal stuff. I went back to feed Jaxson, who as asleep in his bouncer, as usual. While the feeding tube sucks at times, it is also amazing at times! I can keep him on schedule with his food when he doesn't want to have a normal sleep schedule, and I can make him eat when he's sick so he doesn't lose weight like Jeffrey does. Anyway, Jaxson woke up mid-feed, which isn't really normal. He was so upset and I have no idea why. I had to stop the feed and pick him up before I could finish. So I'm not sure if he just wanted mommy when he woke up, or if something was bothering him, but it took forever to calm him down. Of course, by this time, Jeffrey is downstairs harassing me too. And now mom is in a horrid mood. I hate feeling that way and I'm so glad the day turned around. I found out that I had some money left in my IRA, so I called to withdraw it and it's enough to get us caught up on our bills, plus have a little left. And then I walked down to the apartment office to discuss payment with them (we ended up behind), and the lady that helped me has twins (now 3) who were born at 25 weeks and in the hospital for 8 months. Jaxson was with me, of course, so I explained to her what was going on with him and that we just needed a little time. She took down my whole story and emailed it to the property manager, so I should hear back from them today.
On another good note, I finished the design for Jaxson's shirts. I can't wait to get the approval to roll them out! So, while this morning started out rough and I was really depressed, it looks like it's going to end up just fine. Sometimes it's hard to remember that everything is on God's timeline and that He is always there for us. He even tried to show me that everything was going to be okay. When I took Jeffrey to my parents to spend the night before surgery, the boys were playing in the back seat. Jeffrey can make Jaxson roll with laughter better than anyone! And I just smiled, listening to them. As my eyes went from the rearview mirror back to the road, I noticed a small rainbow in the sky. I did a double-take because it was pretty cloudy although the sun was shining. It was a small rainbow in an opening in the clouds. Here's what that meant to me:
I actually started this blog a few days ago and haven't been able to finish it. Since I took my break, Jaxsons's distractions have become increasingly difficult. He cries as soon as he sees water and Q-Tips, what I use to clean around his pins. He cries so hard, even with turning one in the morning and one at night. If he sees the screwdriver, it's even worse. And the hardest part is that he wants nothing to do with me when I'm done. He wants daddy. Which is fine and I understand why he doesn't want me, but it's hard enough to cause my baby pain, throw in not being able to comfort him as a mother should, and it's a bad mix. I break down about twice a week, and the only thing that gets me through is knowing that he's not going to remember any of this. He won't remember that mommy caused him pain and he won't remember the pain of any of his surgeries. Thank God. I find a small comfort in that.
Jayson and I were talking the other day and we figured out that in Jaxson's short little life, he's been in the hospital 8 times (counting the NICU stay). He's had 5 surgeries, RSV and enterovirus. I think he's spent at least half his life at Children's, and he's not done. He'll have another surgery around December where they will pull out the distractors. Dr. Pearson said that he'll be able to repair the cleft at the same time as that surgery, so were thankful that they can be combined. Then it will be a matter of lots of therapy and focusing on his other issues that have taken a back seat to his skull. Like figuring out what's actually going on with his spine and pushing for an orthopedics referral to make sure there's no structural damage to his ankles and legs. I think his hips turn out too far, and his feet ar always at a right angle. His toes do not point. At the moment, it's not affecting his ability to walk, but I want to make sure we're not fighting a losing battle in therapy trying to fix something that's not going to get better. I have a feeling that he'll have braces on those ankles before long, but we'll have to wait and see.
That's what it's always about with Jaxson. Wait and see. It's the most frustrating thing on the planet. I don't want to wait and see, I want the doctors to figure out everything and just fix it! Just tell me what's going on with my little boy so that I can care for him properly and be prepared for what the future holds. The not knowing is what kills me. I want all of the information I can get. Thankfully, we have an appointment at Genetics at the end of the month. They will take mine and Jayson's blood and compare the genes to those of Jaxson and see if any conclusions can be drawn from it. Hopefully we'll get some answers from that, but I'm not holding my breath.
Which is exactly why I plan on starting a nonprofit organization to benefit kids like Jaxson. There are plenty of support groups and charities out there for kids with known syndromes, but I know we are not alone in not having a single diagnosis that encompasses all of Jaxson's issues. Right now, the doctors are treating each problem separately because there has been no evidence that the issues are connected. The only thing I have come up with is that everything is on the midline. The things that are going on with him are extremely closely related to spina bifida. He just wasn't born with his spine outside his body. I can't find anything for what I would consider a "step down" from spina bifida. So maybe he'll have a syndrome named after him, but either way, I just want to know one term for his problems.
It's funny, I see a ton of pages out there for kids that have birth defects and they have thousands of likes on their Facebook pages, but no matter what I do for Jaxson's page, it's like no one gets it. He doesn't have a single syndrome and so people assume that he's not that bad off. Don't get me wrong, he's a little fighter and I have no doubt that he's going to come out of this 20 times stronger than when he started, but it confuses people that he doesn't "have" something. I want to raise awareness on this so bad! I also think that people tend to overlook some of his issues because the big focus is his skull right now. But remember that he has a heart defect, spinal problems, hearing loss, possible vision problems, and will need TONS of therapy to get completely caught up, especially with speech. We're looking at years worth of speech therapy. And, who knows, maybe PT and OT as well. We just don't know. And I don't even know which doctor to ask about combining all of his symptoms into a single issue. Do I talk to Genetics? Plastics? Neurology? Cardiology? Is there a way to bring all of his doctors to one meeting to discuss his symptoms and come up with an effective treatment plan? I just really feel like there's not enough communication between the specialties and that something is being missed. I don't know what that might be, but I just really feel like something is being overlooked. At what point do I push harder for answers?
I don't know, I'm just increasingly frustrated with the entire situation. I just want this to all come together and be figured out so that Jaxson can have the life he deserves.
One final note and I'll sign off. We started a Booster campaign to sell some shirts and raise money for Jaxson. The goal is 30 shirts, and as of today we've sold 8. If we don't get 20, the order will not print and everyone gets their money back. So please, go get yours today! You can find the page at www.booster.com/jaxsonsride. Please share his Facebook page as well, we need to get word out there on situations like this. Just because there isn't a single diagnosis, doesn't mean it's easier than having said diagnosis. In fact, I would venture to say that it is more mentally and emotionally draining to NOT know what is wrong with your child. So please, I'm begging you to shar Jaxson's story. Even if we educate just one person, that's one person who an go on to educate other people and we can make a huge difference in the world. Thank you!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Jaxson had his surgery on September 18th, which is also my dad's birthday and two days before my parents anniversary. His knack for timing reared its ugly head once again. But, because my family is awesome, my parents were at the hospital and so was Sam. Sara, God love her, kept Jeffrey for two nights and three days for us. It was a much bigger help than I'm sure she'll ever realize! Everything went according to plan on the day of surgery and they did not think they needed to give him a transfusion. I had previously talked to the doctors about his pain regiment after surgery because I did not want another situation like the last one. If you recall, I wasn't feeling well and had to go home so Jayson stayed the first night of that surgery. Jaxson cried for about 20 hours straight. Only after the pain team came in and we had him on Tylenol, Oxycodone and Dilaudid as often as he was allowed to have them, and it still took almost a day to get his pain under control. The doctors mostly listened. They ordered Morphine instead of Dilauded. I let it go at first because if he could get by with something a little less strong, then that's the way I wanted to go. Jaxson, being Jaxson, said no dice. I attempted to go home that night, but only made it there for about an hour and a half before getting a call to come back. The nurses weren't coming and Jaxson had been crying for 30 minutes. On my way out the door, I called and spoke with the nurse, pretty sternly. She wanted to give Jaxson morphine even though he couldn't have it for another hour. Her boss ok'd it, she said, and it would work faster. Well, don't you think you should check with the parents before doing something like that? And if you had given him his pain medicine on schedule, then we wouldn't have been in that predicament in the first place. So I ended up staying that night and sent Jayson home. The next day, Jaxson did end up needing a blood transfusion because his hemoglobin levels dropped to 6.1 (Normally 10.5-13.5) and then he was moved up to the floor. The rest of the stay was pretty easy, well, as easy as you can expect I guess. I learned how to do the distraction on Sunday and on Monday Jaxson had elbows put on his pins so that they wouldn't stick straight out. We were finally allowed to leave on Tuesday, and let me tell you how excited he was to be home! He was up an moving around as soon as his little bottom hit the floor. It was so good to see him act like his normal self after being stuck (literally) in a cage for a week.
Since we've been home, the distractions have been going pretty well. We had our first breakdown a few days after being home. His left pin would only turn 1.5 times. The right pin turned 3 like it was supposed to. And Jaxson screamed like we just broke his leg on purpose. It was awful. I sobbed for like 10 minutes, Jayson took Jaxson outside and poor Jeffrey ran back and forth trying to figure out why everyone was crying. I'm tearing up thinking about it. That sweet little boy came right over to me and put his arms around my neck and gave me the best hug. Which was amazing. And I cried harder. Now when we do the distraction, Jeffrey disappears to the basement and Jaxson cries as soon as he sees the bag with all of his stuff in it. He knows that when daddy gives him his phone and holds him a certain way that he's going to hurt. And getting the screwdriver (there's no better term for it, it's like a socket wrench but with an allen head) to attach to his pins while he shakes his head is no easy feat. Especially since I try my best not to touch his head because it might hurt. God forbid haha. It's just a really, really hard thing. I do the turning for a variety of reasons, and when it gets to the end (if you can get it to go that far), it actually feels tight. You know how when you screw something into a piece of wood and it gets tight at the end and then you can't turn it any more? Yep, just like that. On my boy's head. I teared up again last night when neither pin would turn all the way. I tear up thinking about what I'm doing to his head. The closest comparison that I have heard is that it's like a palate expander. You put the key in a contraption in the roof of your mouth, turn it, and it widens the palate to create more space. The palate is quite a bit softer than the skull, though, which is why they actually cut into the skull so that a portion of it is pulled away from the rest. That's the part that's expanding out and creating more space for his brain.
Today I woke up on the floor, like just about every other day, and felt like I was okay. I halfway sleepwalked into the kitchen to get Jaxson's food and give Jayson a hug before work. Normal stuff. I went back to feed Jaxson, who as asleep in his bouncer, as usual. While the feeding tube sucks at times, it is also amazing at times! I can keep him on schedule with his food when he doesn't want to have a normal sleep schedule, and I can make him eat when he's sick so he doesn't lose weight like Jeffrey does. Anyway, Jaxson woke up mid-feed, which isn't really normal. He was so upset and I have no idea why. I had to stop the feed and pick him up before I could finish. So I'm not sure if he just wanted mommy when he woke up, or if something was bothering him, but it took forever to calm him down. Of course, by this time, Jeffrey is downstairs harassing me too. And now mom is in a horrid mood. I hate feeling that way and I'm so glad the day turned around. I found out that I had some money left in my IRA, so I called to withdraw it and it's enough to get us caught up on our bills, plus have a little left. And then I walked down to the apartment office to discuss payment with them (we ended up behind), and the lady that helped me has twins (now 3) who were born at 25 weeks and in the hospital for 8 months. Jaxson was with me, of course, so I explained to her what was going on with him and that we just needed a little time. She took down my whole story and emailed it to the property manager, so I should hear back from them today.
On another good note, I finished the design for Jaxson's shirts. I can't wait to get the approval to roll them out! So, while this morning started out rough and I was really depressed, it looks like it's going to end up just fine. Sometimes it's hard to remember that everything is on God's timeline and that He is always there for us. He even tried to show me that everything was going to be okay. When I took Jeffrey to my parents to spend the night before surgery, the boys were playing in the back seat. Jeffrey can make Jaxson roll with laughter better than anyone! And I just smiled, listening to them. As my eyes went from the rearview mirror back to the road, I noticed a small rainbow in the sky. I did a double-take because it was pretty cloudy although the sun was shining. It was a small rainbow in an opening in the clouds. Here's what that meant to me:
9 “I now establish my covenant with you and with your descendants after you 10 and with every living creature that was with you—the birds, the livestock and all the wild animals, all those that came out of the ark with you—every living creature on earth. 11 I establish my covenant with you: Never again will all life be destroyed by the waters of a flood; never again will there be a flood to destroy the earth.”12 And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: 13 I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. 14 Whenever I bring clouds over the earth and the rainbowappears in the clouds, 15 I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. 16 Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.” Genesis 9:9-16I felt peace after that and knew that everything would work out, at least for the surgery. And it did. And it's still working out according to His plan. Part of me takes solace in that and knows that we will be okay as long as we keep faith. Part of me wants to throw a fireball at the sky and make Him do things according to MY plan. But I suppose He knows best :)
I actually started this blog a few days ago and haven't been able to finish it. Since I took my break, Jaxsons's distractions have become increasingly difficult. He cries as soon as he sees water and Q-Tips, what I use to clean around his pins. He cries so hard, even with turning one in the morning and one at night. If he sees the screwdriver, it's even worse. And the hardest part is that he wants nothing to do with me when I'm done. He wants daddy. Which is fine and I understand why he doesn't want me, but it's hard enough to cause my baby pain, throw in not being able to comfort him as a mother should, and it's a bad mix. I break down about twice a week, and the only thing that gets me through is knowing that he's not going to remember any of this. He won't remember that mommy caused him pain and he won't remember the pain of any of his surgeries. Thank God. I find a small comfort in that.
Jayson and I were talking the other day and we figured out that in Jaxson's short little life, he's been in the hospital 8 times (counting the NICU stay). He's had 5 surgeries, RSV and enterovirus. I think he's spent at least half his life at Children's, and he's not done. He'll have another surgery around December where they will pull out the distractors. Dr. Pearson said that he'll be able to repair the cleft at the same time as that surgery, so were thankful that they can be combined. Then it will be a matter of lots of therapy and focusing on his other issues that have taken a back seat to his skull. Like figuring out what's actually going on with his spine and pushing for an orthopedics referral to make sure there's no structural damage to his ankles and legs. I think his hips turn out too far, and his feet ar always at a right angle. His toes do not point. At the moment, it's not affecting his ability to walk, but I want to make sure we're not fighting a losing battle in therapy trying to fix something that's not going to get better. I have a feeling that he'll have braces on those ankles before long, but we'll have to wait and see.
That's what it's always about with Jaxson. Wait and see. It's the most frustrating thing on the planet. I don't want to wait and see, I want the doctors to figure out everything and just fix it! Just tell me what's going on with my little boy so that I can care for him properly and be prepared for what the future holds. The not knowing is what kills me. I want all of the information I can get. Thankfully, we have an appointment at Genetics at the end of the month. They will take mine and Jayson's blood and compare the genes to those of Jaxson and see if any conclusions can be drawn from it. Hopefully we'll get some answers from that, but I'm not holding my breath.
Which is exactly why I plan on starting a nonprofit organization to benefit kids like Jaxson. There are plenty of support groups and charities out there for kids with known syndromes, but I know we are not alone in not having a single diagnosis that encompasses all of Jaxson's issues. Right now, the doctors are treating each problem separately because there has been no evidence that the issues are connected. The only thing I have come up with is that everything is on the midline. The things that are going on with him are extremely closely related to spina bifida. He just wasn't born with his spine outside his body. I can't find anything for what I would consider a "step down" from spina bifida. So maybe he'll have a syndrome named after him, but either way, I just want to know one term for his problems.
It's funny, I see a ton of pages out there for kids that have birth defects and they have thousands of likes on their Facebook pages, but no matter what I do for Jaxson's page, it's like no one gets it. He doesn't have a single syndrome and so people assume that he's not that bad off. Don't get me wrong, he's a little fighter and I have no doubt that he's going to come out of this 20 times stronger than when he started, but it confuses people that he doesn't "have" something. I want to raise awareness on this so bad! I also think that people tend to overlook some of his issues because the big focus is his skull right now. But remember that he has a heart defect, spinal problems, hearing loss, possible vision problems, and will need TONS of therapy to get completely caught up, especially with speech. We're looking at years worth of speech therapy. And, who knows, maybe PT and OT as well. We just don't know. And I don't even know which doctor to ask about combining all of his symptoms into a single issue. Do I talk to Genetics? Plastics? Neurology? Cardiology? Is there a way to bring all of his doctors to one meeting to discuss his symptoms and come up with an effective treatment plan? I just really feel like there's not enough communication between the specialties and that something is being missed. I don't know what that might be, but I just really feel like something is being overlooked. At what point do I push harder for answers?
I don't know, I'm just increasingly frustrated with the entire situation. I just want this to all come together and be figured out so that Jaxson can have the life he deserves.
One final note and I'll sign off. We started a Booster campaign to sell some shirts and raise money for Jaxson. The goal is 30 shirts, and as of today we've sold 8. If we don't get 20, the order will not print and everyone gets their money back. So please, go get yours today! You can find the page at www.booster.com/jaxsonsride. Please share his Facebook page as well, we need to get word out there on situations like this. Just because there isn't a single diagnosis, doesn't mean it's easier than having said diagnosis. In fact, I would venture to say that it is more mentally and emotionally draining to NOT know what is wrong with your child. So please, I'm begging you to shar Jaxson's story. Even if we educate just one person, that's one person who an go on to educate other people and we can make a huge difference in the world. Thank you!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
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