I've been feeling really down lately. I've gained weight, I'm not sleeping, I'm constantly on the go and I feel like everything we do is such a fight. Why do some families have to struggle for every little thing? What decisions have we made that could have been handled differently? Why can't things just be normal?
Well, I know the answers to all of those questions. No one knows why some families have to struggle the way we do. It's something that happens when you have a child with disabilities. Going down to one income is going to affect anyone's budget, but when you're already in the middle-class, it takes a bigger hit than most people know. There is no saving, no preparation for the future. But we, as with most families in our situation, figure out how to make it work. It's not easy, and sometimes things are late, but we mostly manage. And then there's the mental and emotional toll having a child with disabilities takes on a person and a family. Especially when there are siblings involved. On top of worrying about the child that is sick, there's another child who needs attention and love. It's not uncommon for these siblings to act out, especially younger kids that don't understand what is going on. Why do some families have it harder than others? My feeling is that it's because the familial unit is strong enough to handle it. If it weren't for the strength of my relationship with Jayson, there is no way we would be where we are. But because our love endures, we have two pretty happy kids that know they're loved, even in the hardest of times.
What decisions have we made that could have been done differently? I'm sure there are many, but with each situation, we've made the decision that we thought was best at the time. Whether it's what groceries to buy, how much gas to put in the car, or which bill to pay first, it's always about what is best at the time. There is so much going on with Jaxson, that we can't plan anything long term. We want to have thanksgiving at our house, and we will, but we aren't planning a huge get-together because we don't know if Jaxson will suddenly spike a fever or end up with some kind of infection that lands him in the hospital for a week. And don't even ask bout Christmas plans. I can barely think past today, let alone that far out. But that's how we do it. Each decision is based on what's going on at that time. Seem times a different choice should have been made, but hindsight is always 20/20. So we make do and confront whatever life throws at us head on.
Why can't things be normal? Well, they are normal. Our normal. We just have to learn to adapt and adjust to what our new normal is. It's not easy, actually it pretty much sucks, and it takes a lot of time, but I think we are rounding the final curve and figuring things out.
So as we adjust and grow to love our lives, I like to take time to stop and think about everyone who has supported and helped us out along the way. There's a single mom who makes donations into Jaxson's account whenever she can afford it. She doesn't have to do that. She could be saving for her baby, and she probably is, but she chooses to give a little to us. We have received donations from some older people who live solely on social security. If you know anything about that, you know that it's not easy to live on social security alone, so for these people to give to us is simply amazing. We've received help friends parents, some of whom I haven't spoken to in years. We've received an outpouring of love and support on Jaxson's page and have been welcomed into many communities, no questions asked. A friends sister, whom I've never met, is the one who started this business with the benefit.
We are blessed in so many ways and we are grateful to each and every person that has reached out to support and help us. And it always comes at just the right time. God is truly looking out for us. He definitely has a purpose for Jaxson, and I'm excited to see what it might be.
Trying to remember how lucky we are is hard when things feel like they could come crashing down at any moment. But that's why we have these pages for Jaxson. All I have to do is l look at his Facebook page and I'm reminded that he has tons of prayer warriors out there. So many are pulling for him and watching his progress. I feel like everyone is family in the communities on Facebook. Whenever someone loses a child or has a setback, I cry for them and their families. Anytime there's an issue with Jaxson, they cry and worry with me. If you have enough blessings in your life to count on one hand, count yourself lucky. Not everyone is.
Now back to Jaxson. He has a neurology appointment today and it's the one appointment I have been dreading. I'm glad we're finally getting in there because maybe they'll be able to tell us something about Jaxson, but part of me doesn't want to hear what they have to say. I know they're going to order tests and possibly labs, so I don't know how much information I'll come home with today. I'm just really scared. No parent wants to hear that their child has anything wrong with his brain. I pray that we don't have to hear something crazy like that. I think my biggest concern is that there's going to be some sort of growth problem, which could cause his bones to fuse early. They wouldn't be able to tell us anything like that without further testing, so it's not something I'd have to deal with today, but it's still a concern. Jaxson had a brain MRI in July, so they'll have access to that, but I'm not sure how much they'll be able to learn from it since it was several months ago. Babies do so much growing, I assume they'll want something else. I don't know. I'm just worried about what they're going to tell me.
I also think that part of the reason I've been so depressed in the last week is because I have been thinking about Jaxson's future. We have no idea what the future holds for him. He has several things that could possibly cause a problem down the road, like his heart and syrinx. He has things that will get better, like his coordination and muscle function. Or maybe they won't. We just don't know. And I'm so scared that this syrinx is going to cause major problems for him. I think his spine is in worse condition than we initially understood and I'm terrified that he's going to end up in a wheelchair for the rest of his life. Don't get me wrong, Jaxson wouldn't complain, he'd just keep smiling that smile and looking at you with those bright blue eyes. He'd find a way to make you laugh and he'd learn to function on his own. But no parent wants that life for their child.
Ok, I have to get some thins done before Jaxson wakes up. Laundry is calling my name! Please remember that if you are local, there is a benefit for Jaxson this Sunday. It's at Carribean Jerks at Polaris from 1-6. Please come if you can, it will definitely be a good time!
"Life is not how it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
Tuesday, November 12, 2013
Tuesday, October 29, 2013
More Diagnoses, Concerns About Jeffrey
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."
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."
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."
Thursday, August 29, 2013
Juggling Life, Transitions and Appointments
Jaxson never does anything the easy way. It's go big or go home with this kid, every time. Most recently, we had to rush Jaxson to the ER. On August 17, Jaxson started to get fussy. Jayson as at work, but thankfully our friend Kelly was in town from Charlotte. Jaxson spiked a fever of 101.7 around 10:30pm. I brought him downstairs and gave him Tylenol, ear drops and gas drops, unsure of the cause. He decided to throw up his entire 3oz snack on me, two hours after he ate it. His fever broke and we cuddled up on the living room floor. He woke up again around 5am (mind you I had to stay awake to feed him at 12am) and had another high fever. I gave him more medicine and got him back to sleep. When he woke up the next morning, he was a different baby. Still not 100%, but definitely happier. We got him to take his food, working from a few ounces up to a normal feed, without getting sick. He slept most of the day, and started to heat up again, but we caught the temperature at 100 and he was fine. Thankfully, we got to go home the next day. And thanks to my parents, sister and niece, Jeffrey did not have to deal with his brother and one of his parents being out of the house for the night!
The following day, I had planned on going back to work. I was only going to go for a few hours because Jayson had to work (we'll get to that), and then someone was coming in to cover me. That is not how the day went at all. We knew as soon as Jeffrey got out of bed that he wasn't doing well. Fever of 101. Okay, fine, that's not horrible. We gave him some Tylenol and he perked up a little, but not all the way. Still, his fever dropped so I planned on going in. Three hours into his Tylenol, Jeffrey's fever skyrocketed to 103.7. I immediately called Jayson to come back (no idea where he was now) so we could take Jeffrey to the ER. My biggest concern was strep with the fever spiking under meds. Luckily it wasn't that, but they determined that he had gotten enterovirus from Jaxson. Awesome. So, home I stayed. Jeffrey ended up being pretty sick that day, but did much better the following day and is now back to his normal rotten self.
When I had to call off of work three days in a row, I spoke with my manager and we agreed. It was not fair to the bank for me to continue to call off work for emergencies, especially when they were really relying on me being there. So I ended up not going back at all. Jayson found a job pretty quickly and we've transitioned back into traditional roles. It's an adjustment for everyone, let me tell you. This is a whole new way of life for me. I've had a job since I was 15, so not working is weird. Jeffrey is all out of sorts. Between daddy being gone all the time now and starting school, it's no wonder that he had an upset stomach today. I kept him home and shortly after I called the school to let them know, he threw up on the blanket I had put down in case he needed to get sick. Now he's sleeping in my recliner. I just hope he feels better when he wakes up! Jayson is adjusting to working full-time again. After not working for over a year, he has done a good job of integrating himself back into the work force. I think Jaxson has had the easiest time with this change. Mommy is home all the time, he loves his schedule and basically sticks to it without a fuss, and he hasn't thrown up since he came home from the hospital. If you are new to this blog, Jaxson used to throw up after every feed. Every. Single. One. And we're not talking a little spit up, we're talking vomiting all over himself, the floor, and whoever happens to be holding him at such an inconvenient time. Thank goodness it appears that we're past that!
Adjusting to life as a stay at home mom has been both frustrating and rewarding. It's frustrating in that I am dealing with two young children every day who constantly battle my every decision. Jeffrey is testing his limits with mom, and he's quickly learning that mom has more will power than he does. There have been a lot of fits, many time outs, and even a few swats on the bottom. On the flip side, there has been relaxation, wrestling on the floor, watching movies and lots of laughter! Each day I learn something new about both of my boys, and each day they amaze me with what they are capable of doing on their own. They make me laugh with their quirky personalities and make me cry when I can't seem to get it right. And I love every second. I can personally keep an eye on Jaxson and make sure I get to all of his appointments without hassle. I can make sure that Jeffrey gets on and off the bus every day, and I can have a fun snack or surprise waiting for him when he gets home. I get to teach them, to play with them, to love on them and be loved by them every second of every day. I wouldn't change it for the world!
The next two weeks are going to be extremely busy and difficult to manage. Jaxson has five appointments next week alone, only one of which is at our house. We meet the new Neurosurgeon on the 3rd, Help Me Grow (home) on the 4th, PT and Speech on the 5th, and the dietician on the 6th. The following week is just as bad, on the 9th is audiology, the 10th he's supposed to go to school, the 12th is PT and the 13th is his EEG. Then we get a five day break until his surgery on the 18th, and we haven't found out how long he's going to be there yet. After surgery, we're clear of appointments for awhile. I say awhile, what I mean is two weeks! But hopefully we'll start getting some answers soon.
So in this thing called life, we are doing well overall. Everyone seems more relaxed and ready to do what needs done. It's good for Jayson to have the distraction of work every day, and it's good for me to be with the boys every day. I think we made the right decision, so hopefully we don't get bit in the butt later!
Also, you may have noticed the links under the "Pages" section growing. Because Jaxson does not have a diagnosis, I have decided to put up links to the different things he has going on in his body. At least the ones I could find that would be helpful to anyone not familiar with the situation. I also have added some Facebook pages for a couple of people, as well as links to a few foundations that are close to me. Each link under the Pages section will take you directly to that particular website. This will be updated as we gain more information and as I have more time to fool around with blogspot and see what capabilities it has.
Now that it's four days after I started this silly thing, I'm finally done. Jaxson did very well at PT this morning and we're headed in for a follow up vision check. Crossies that I'm wrong about his strabismus!
~S
"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."
The following day, I had planned on going back to work. I was only going to go for a few hours because Jayson had to work (we'll get to that), and then someone was coming in to cover me. That is not how the day went at all. We knew as soon as Jeffrey got out of bed that he wasn't doing well. Fever of 101. Okay, fine, that's not horrible. We gave him some Tylenol and he perked up a little, but not all the way. Still, his fever dropped so I planned on going in. Three hours into his Tylenol, Jeffrey's fever skyrocketed to 103.7. I immediately called Jayson to come back (no idea where he was now) so we could take Jeffrey to the ER. My biggest concern was strep with the fever spiking under meds. Luckily it wasn't that, but they determined that he had gotten enterovirus from Jaxson. Awesome. So, home I stayed. Jeffrey ended up being pretty sick that day, but did much better the following day and is now back to his normal rotten self.
When I had to call off of work three days in a row, I spoke with my manager and we agreed. It was not fair to the bank for me to continue to call off work for emergencies, especially when they were really relying on me being there. So I ended up not going back at all. Jayson found a job pretty quickly and we've transitioned back into traditional roles. It's an adjustment for everyone, let me tell you. This is a whole new way of life for me. I've had a job since I was 15, so not working is weird. Jeffrey is all out of sorts. Between daddy being gone all the time now and starting school, it's no wonder that he had an upset stomach today. I kept him home and shortly after I called the school to let them know, he threw up on the blanket I had put down in case he needed to get sick. Now he's sleeping in my recliner. I just hope he feels better when he wakes up! Jayson is adjusting to working full-time again. After not working for over a year, he has done a good job of integrating himself back into the work force. I think Jaxson has had the easiest time with this change. Mommy is home all the time, he loves his schedule and basically sticks to it without a fuss, and he hasn't thrown up since he came home from the hospital. If you are new to this blog, Jaxson used to throw up after every feed. Every. Single. One. And we're not talking a little spit up, we're talking vomiting all over himself, the floor, and whoever happens to be holding him at such an inconvenient time. Thank goodness it appears that we're past that!
Adjusting to life as a stay at home mom has been both frustrating and rewarding. It's frustrating in that I am dealing with two young children every day who constantly battle my every decision. Jeffrey is testing his limits with mom, and he's quickly learning that mom has more will power than he does. There have been a lot of fits, many time outs, and even a few swats on the bottom. On the flip side, there has been relaxation, wrestling on the floor, watching movies and lots of laughter! Each day I learn something new about both of my boys, and each day they amaze me with what they are capable of doing on their own. They make me laugh with their quirky personalities and make me cry when I can't seem to get it right. And I love every second. I can personally keep an eye on Jaxson and make sure I get to all of his appointments without hassle. I can make sure that Jeffrey gets on and off the bus every day, and I can have a fun snack or surprise waiting for him when he gets home. I get to teach them, to play with them, to love on them and be loved by them every second of every day. I wouldn't change it for the world!
The next two weeks are going to be extremely busy and difficult to manage. Jaxson has five appointments next week alone, only one of which is at our house. We meet the new Neurosurgeon on the 3rd, Help Me Grow (home) on the 4th, PT and Speech on the 5th, and the dietician on the 6th. The following week is just as bad, on the 9th is audiology, the 10th he's supposed to go to school, the 12th is PT and the 13th is his EEG. Then we get a five day break until his surgery on the 18th, and we haven't found out how long he's going to be there yet. After surgery, we're clear of appointments for awhile. I say awhile, what I mean is two weeks! But hopefully we'll start getting some answers soon.
So in this thing called life, we are doing well overall. Everyone seems more relaxed and ready to do what needs done. It's good for Jayson to have the distraction of work every day, and it's good for me to be with the boys every day. I think we made the right decision, so hopefully we don't get bit in the butt later!
Also, you may have noticed the links under the "Pages" section growing. Because Jaxson does not have a diagnosis, I have decided to put up links to the different things he has going on in his body. At least the ones I could find that would be helpful to anyone not familiar with the situation. I also have added some Facebook pages for a couple of people, as well as links to a few foundations that are close to me. Each link under the Pages section will take you directly to that particular website. This will be updated as we gain more information and as I have more time to fool around with blogspot and see what capabilities it has.
Now that it's four days after I started this silly thing, I'm finally done. Jaxson did very well at PT this morning and we're headed in for a follow up vision check. Crossies that I'm wrong about his strabismus!
~S
"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."
Thursday, August 15, 2013
Surgeries: Round 2
First, I want to apologize to everyone who relies on this blog for updates. I know it's been two months since my last post, and there's a lot of information to put out here today. I will try to update more frequently as Jaxson has appointments!
On July 9, Jaxson had an MRI on his spine and skull and a 3D image of his skull. The next day, which was a Wednesday, I was pretty sick and decided to stay home. Best decision I could have made. I received a call that afternoon from the Nuerosurgery departments asking if we could come in the following morning (Thursday) at 5:45am for a brain MRI. I was so shocked I could hardly get out my questions. I asked what they were looking for and was told that the radiologist thought there might be fluid on his brain. If they found that to be correct, they already had a spot for Jaxson in the OR for Friday for a shunt. So we went to the MRI the next day and Dr. Jackson came to speak with us after everything was completed. Jaxson wasn't even in the room from recovery yet. Dr. Jackson (whom we love and were super sad to see leave Children's for Johns Hopkins) informed us that Jaxson did indeed have fluid on his brain. However, they did not think there was any pressure being placed on his brain and rather than place the shunt, they had us take Jaxson to the eye doctor so they could check his optic nerves for pressure. Thankfully they didn't see enough to warrant a shunt. But Dr. Jackson said there were more things we needed to know. Jaxson's lambdoid sutures (back of the skull) were fused. His sagittal suture was fusing. He would need at least one additional surgery on his head, possibly more. He was given a partial diagnosis of syndromic synostosis and we were to meet with the plastic surgeon the following week. He also needs more spin surgery. They will do another scan in a few months to determine the next course of action for that, but it looks like he may have an issue all the way up his spine. There is also the potential that he has a chiri malformation, although that won't be certain until the next surgery is done and they can see if the surgery gives his brain more room to expand.
Jaxson was supposed to have his cleft palate repaired on July 29, but it has now been postponed. He will have distraction surgery (http://www.medscape.com/viewarticle/405635_2) on September 18, my dad's birthday. I'm not sure how long he'll be in the hospital for that one, but probably a week. This procedure is actually 2 surgeries because they have to go in and remove the device, and when they do that, they will likely fix the cleft. In a nutshell, rather than unfusing the bones and expanding them (what they did with his coronal sutures last year), they will make a horizontal cut across the back of Jaxsons skull. They will put in a device that will help expand his skull at a slower pace. This is the best option for him because the back of his head is flat and there isn't much skin to advance the bones the same way they did before. The downside is that he'll have knobs on the outside of his head. We'll have to turn them every day in order to create more space and allow the skin on his skull to recover and expand at a much slower pace. The hope is that by doing this, they won't have to operate on the sagittal sutures and that the space created will give his brain enough room to grow, relieve the fluid in his brain, and make the apparent chiri malformation go away. Only time will tell what the outcome will be. The "wait and see" game is the story of our lives right now.
So that's two surgeries we weren't prepared for, although it's nice that they can combine the second surgery with fixing his cleft. Then we'll have to address the spine, and who knows what that will be like. He'll need at least one surgery on that, possibly more if they don't get the problem completely solved. What has me worried about his spine is that the initial tethering was caused by scar tissue. There's only so much you can do to remove scar tissue without impacting the areas around it, so it's possible that they will not be able to fix it completely.
Round 2 has begun. Each surgery has to be at least 3 months apart from the previous surgery, so at this point we're looking at another year's worth of surgeries. On top of his regular appointments, which now include a visit to the eye doctor every few months and speech therapy. Oh, and I forgot that he'll have to see Physical Medicine and Neurology now too. He may need braces on his feet to correct the positioning for walking, an he's still doing that shaking thing, although not as often.
This sudden turn has taken a huge toll on our family. Jayson and my anxiety levels are through the roof, stress is high, and because my pay was screwed up for two months, money is hard to come by. Jayson and I are working on switching out because he can handle working full-time and I can't. I need to be home with my baby. It won't be an easy transition for anyone, but it's something that has to be done.
Amid all of this, I have had several people ask why I don't just go back to full-time at the bank, stating that sometimes sacrifices have to be made. If one more person talks to me about sacrifices, I might go through the roof. This is something I have to get off my chest, and is not directed at any one person. You want to talk sacrifice? Sacrifice is returning to work from maternity leave while your son is having a feeding tube placed. Sacrifice is not being able to go on a date with your husband for over a year because no one can watch your child. Sacrifice is sleeping an average of four hours a night in 30-45 minute intervals for a year and still managing to go to work every day and help take care of the kids when you get home. Sacrifice is giving up part of your manhood to stay home with the kids because your wife makes more money than you do. Sacrifice is moving to the inner-city because it's cheaper, even though it's not safe. Sacrifice is risking your job because you're so concerned about your child's well-being. No one, no one can possibly understand all of the sacrifices Jayson and I have made over the last 18 months (including while I was pregnant) in order to make sure our children have a decent life. Sacrifice is skipping meals or eating very small portions to make sure that your child can eat when he's hungry. Sacrifice is knowing that when all is said and done, your credit will be in the toilet because of medical bills that can't be paid, and shrugging it off because there are worse things in life than not owning your home or being able to get a credit card. Sacrifice is leaving your child in the hands of someone else, praying that he'll come back to you the way he's supposed to. I have a couple of friends who might have an inkling because of their own children, but until you have a child with medical disabilities that has to have multiple surgeries in a year's time, do not come at me with sacrifices. We have done everything in our power to maintain a "normal" family life for our children, and it has cost us. Not just monetarily, but emotionally and mentally. We are good parents who have fallen on hard times. But we will NOT let that get in the way of raising our children properly.
On a lighter and happier note, both Jaxson and Jeffrey will be going to the Head Start school this fall. They will be picked up and dropped off every afternoon. Jaxson will get therapy while he is there, on top of the therapies we do at Children's. Jeffrey will get the social interaction and education he so desperately needs and wants. If either of us are home with the kids at that time, that person will get at least a 4 hour break every day to get things done around the house and not have kids in the way as a distraction. And it will only cost us $100 a month. Can't beat that!
Our lives are in a constant state of chaos. It's always a waiting game with Jaxson. Waiting to see what this next surgery will bring, waiting to see what doctor is going to throw something in our lap next, waiting on his next round of appointments. And there's always financial stress. Because my pay was messed up due to my leave, we will not get SSI for Jaxson this month or next. We count on that money to pay our rent, so now we are saving every penny we can find while still putting food on the table for the kids. We can handle it. We will get through it. We always do. And while J and I have argued more recently (we almost never fight and it's always been that way), our relationship is as strong as ever.
The Burks' and the Sanderson's are fighters, and Jaxson exhibits every ounce of defiance he can. He is not going down without a fight, and he's happy to accept the challenge. His smile and laughter are what get me through most days, along with the random, "I love you Mommy" comments and requests for hugs and kisses from Jeffrey. I live for those moments, which are often in this house. Jayson and I must be doing something right to have two happy kids who seem to not have a care in the world. In that aspect, we have done a great job not showing the kids how hard this is for us. And we really can't ask for more than that, because that is what life is all about. No matter what the situation, if your kids are happy with a roof over their heads and food on the table, everything else is minute.
I will end this long blog with a line from a Nickelback song. I'm not a huge fan, but I like this line: "My best friend gave me the best advice/He said, 'Each day's a privilege and not a given right.'" So true. So make the best of it today. Give someone a hand, hold the door open, smile at people you pass on the street. You'll be surprised with how good you feel at the end of the day, and the impact you have on the people you encounter may never be known. You could be the person to turn someone's day around, or even their life.
-S
-"Life is not what it's supposed to be, it is what it is. The way you cope with it is what makes the difference."
On July 9, Jaxson had an MRI on his spine and skull and a 3D image of his skull. The next day, which was a Wednesday, I was pretty sick and decided to stay home. Best decision I could have made. I received a call that afternoon from the Nuerosurgery departments asking if we could come in the following morning (Thursday) at 5:45am for a brain MRI. I was so shocked I could hardly get out my questions. I asked what they were looking for and was told that the radiologist thought there might be fluid on his brain. If they found that to be correct, they already had a spot for Jaxson in the OR for Friday for a shunt. So we went to the MRI the next day and Dr. Jackson came to speak with us after everything was completed. Jaxson wasn't even in the room from recovery yet. Dr. Jackson (whom we love and were super sad to see leave Children's for Johns Hopkins) informed us that Jaxson did indeed have fluid on his brain. However, they did not think there was any pressure being placed on his brain and rather than place the shunt, they had us take Jaxson to the eye doctor so they could check his optic nerves for pressure. Thankfully they didn't see enough to warrant a shunt. But Dr. Jackson said there were more things we needed to know. Jaxson's lambdoid sutures (back of the skull) were fused. His sagittal suture was fusing. He would need at least one additional surgery on his head, possibly more. He was given a partial diagnosis of syndromic synostosis and we were to meet with the plastic surgeon the following week. He also needs more spin surgery. They will do another scan in a few months to determine the next course of action for that, but it looks like he may have an issue all the way up his spine. There is also the potential that he has a chiri malformation, although that won't be certain until the next surgery is done and they can see if the surgery gives his brain more room to expand.
Jaxson was supposed to have his cleft palate repaired on July 29, but it has now been postponed. He will have distraction surgery (http://www.medscape.com/viewarticle/405635_2) on September 18, my dad's birthday. I'm not sure how long he'll be in the hospital for that one, but probably a week. This procedure is actually 2 surgeries because they have to go in and remove the device, and when they do that, they will likely fix the cleft. In a nutshell, rather than unfusing the bones and expanding them (what they did with his coronal sutures last year), they will make a horizontal cut across the back of Jaxsons skull. They will put in a device that will help expand his skull at a slower pace. This is the best option for him because the back of his head is flat and there isn't much skin to advance the bones the same way they did before. The downside is that he'll have knobs on the outside of his head. We'll have to turn them every day in order to create more space and allow the skin on his skull to recover and expand at a much slower pace. The hope is that by doing this, they won't have to operate on the sagittal sutures and that the space created will give his brain enough room to grow, relieve the fluid in his brain, and make the apparent chiri malformation go away. Only time will tell what the outcome will be. The "wait and see" game is the story of our lives right now.
So that's two surgeries we weren't prepared for, although it's nice that they can combine the second surgery with fixing his cleft. Then we'll have to address the spine, and who knows what that will be like. He'll need at least one surgery on that, possibly more if they don't get the problem completely solved. What has me worried about his spine is that the initial tethering was caused by scar tissue. There's only so much you can do to remove scar tissue without impacting the areas around it, so it's possible that they will not be able to fix it completely.
Round 2 has begun. Each surgery has to be at least 3 months apart from the previous surgery, so at this point we're looking at another year's worth of surgeries. On top of his regular appointments, which now include a visit to the eye doctor every few months and speech therapy. Oh, and I forgot that he'll have to see Physical Medicine and Neurology now too. He may need braces on his feet to correct the positioning for walking, an he's still doing that shaking thing, although not as often.
This sudden turn has taken a huge toll on our family. Jayson and my anxiety levels are through the roof, stress is high, and because my pay was screwed up for two months, money is hard to come by. Jayson and I are working on switching out because he can handle working full-time and I can't. I need to be home with my baby. It won't be an easy transition for anyone, but it's something that has to be done.
Amid all of this, I have had several people ask why I don't just go back to full-time at the bank, stating that sometimes sacrifices have to be made. If one more person talks to me about sacrifices, I might go through the roof. This is something I have to get off my chest, and is not directed at any one person. You want to talk sacrifice? Sacrifice is returning to work from maternity leave while your son is having a feeding tube placed. Sacrifice is not being able to go on a date with your husband for over a year because no one can watch your child. Sacrifice is sleeping an average of four hours a night in 30-45 minute intervals for a year and still managing to go to work every day and help take care of the kids when you get home. Sacrifice is giving up part of your manhood to stay home with the kids because your wife makes more money than you do. Sacrifice is moving to the inner-city because it's cheaper, even though it's not safe. Sacrifice is risking your job because you're so concerned about your child's well-being. No one, no one can possibly understand all of the sacrifices Jayson and I have made over the last 18 months (including while I was pregnant) in order to make sure our children have a decent life. Sacrifice is skipping meals or eating very small portions to make sure that your child can eat when he's hungry. Sacrifice is knowing that when all is said and done, your credit will be in the toilet because of medical bills that can't be paid, and shrugging it off because there are worse things in life than not owning your home or being able to get a credit card. Sacrifice is leaving your child in the hands of someone else, praying that he'll come back to you the way he's supposed to. I have a couple of friends who might have an inkling because of their own children, but until you have a child with medical disabilities that has to have multiple surgeries in a year's time, do not come at me with sacrifices. We have done everything in our power to maintain a "normal" family life for our children, and it has cost us. Not just monetarily, but emotionally and mentally. We are good parents who have fallen on hard times. But we will NOT let that get in the way of raising our children properly.
On a lighter and happier note, both Jaxson and Jeffrey will be going to the Head Start school this fall. They will be picked up and dropped off every afternoon. Jaxson will get therapy while he is there, on top of the therapies we do at Children's. Jeffrey will get the social interaction and education he so desperately needs and wants. If either of us are home with the kids at that time, that person will get at least a 4 hour break every day to get things done around the house and not have kids in the way as a distraction. And it will only cost us $100 a month. Can't beat that!
Our lives are in a constant state of chaos. It's always a waiting game with Jaxson. Waiting to see what this next surgery will bring, waiting to see what doctor is going to throw something in our lap next, waiting on his next round of appointments. And there's always financial stress. Because my pay was messed up due to my leave, we will not get SSI for Jaxson this month or next. We count on that money to pay our rent, so now we are saving every penny we can find while still putting food on the table for the kids. We can handle it. We will get through it. We always do. And while J and I have argued more recently (we almost never fight and it's always been that way), our relationship is as strong as ever.
The Burks' and the Sanderson's are fighters, and Jaxson exhibits every ounce of defiance he can. He is not going down without a fight, and he's happy to accept the challenge. His smile and laughter are what get me through most days, along with the random, "I love you Mommy" comments and requests for hugs and kisses from Jeffrey. I live for those moments, which are often in this house. Jayson and I must be doing something right to have two happy kids who seem to not have a care in the world. In that aspect, we have done a great job not showing the kids how hard this is for us. And we really can't ask for more than that, because that is what life is all about. No matter what the situation, if your kids are happy with a roof over their heads and food on the table, everything else is minute.
I will end this long blog with a line from a Nickelback song. I'm not a huge fan, but I like this line: "My best friend gave me the best advice/He said, 'Each day's a privilege and not a given right.'" So true. So make the best of it today. Give someone a hand, hold the door open, smile at people you pass on the street. You'll be surprised with how good you feel at the end of the day, and the impact you have on the people you encounter may never be known. You could be the person to turn someone's day around, or even their life.
-S
-"Life is not what it's supposed to be, it is what it is. The way you cope with it is what makes the difference."
Thursday, June 13, 2013
Sometimes, Life Hands You Lemons...
Right now, it feels like life has handed us a truckload of lemons and said, "Hey, let's see what you can do with this." Ever since Jaxson was born it's been appointment after appointment, surgery after surgery, test after test, and therapy after therapy. The poor kid has been through so much, and still has so much left to go through. It's such a helpless feeling, as a parent, to not be able to protect your child from scary things. I cry every time we leave him in the Surgery Center because I know he's confused and upset that I'm not with him. Of course, I also know that doesn't last long because they knock him out, but that doesn't make it easier. No parent ever wants to see their child scared and confused. Especially when nothing can be done to change it.
First, I want to go over the speech evaluation. There are two types of speech, one is Understanding and I forget what the other one is called, but it has to do with your ability to say words. Jaxson tested at the 8-9 month level for understanding (same place he is with his other development), and he tested at the 6-7 month level for the other. The therapist said that he tested lower than she expected on that one, but it's mostly because of his cleft. He will only have the ability to say certain things while the cleft is open, so getting the harder consonants out of his mouth just won't happen. She, of course, fell in love with his big blue eyes, and said that since his cleft surgery is scheduled for next month, we should wait until after that to start speech. They would treat him a different way if we started now, so it doesn't make sense to do one thing for two months only to switch it up on him. I agreed, so I will get in touch with her when he's cleared to start speech after his surgery. Or I'll call and let her know that the surgery has been moved because they need to do another one on his head.
We met Jaxson's new OT with Help Me Grow today. She's awesome, and I think she's going to do great with Jax. It was funny, she made a comment before she left to her counterpart about how she was right, that we had everything under control and we did the things we're supposed to do. I got a kick out of that. Of course we are! We want nothing but the best for our baby, and I can't understand a parent not wanting that. I'm sure some parents have a hard time making time to do exercises and things with their kids, but man, I would sure make time to give my child every opportunity to learn and grow. Anyway, I shared a video (posted below) with them, and they think it's a good idea that we're going to see Neurology. Meaning, they saw something that didn't look quite right and they don't think it's a sensory issue. So it could be seizure related, or it could be some other neurological issue. Either way, October can't come fast enough.
This was the first time Jaxson did this while sitting in his bouncer. Normally, he's on the floor playing when it happens, but not this time. Which means the situation is changing, which means it can keep changing. The thing with this shaking that concerns me is that it opens up a plethora of new diagnoses. Disorders and syndromes I have researched for the last year have to be re-researched to include the potential for seizures, or seizure-like symptoms. It's just so frustrating that we have to wait until October to get into the Neurology department. And now I'm even more anxious to see what his CT scans say next month. Is it that his brain is out of room because he has a flat head, or his is brain not growing fast enough? Will they be able to see any abnormalities in his brain with the CT, or will Neurology want a PET scan? Is he going to need a fifth surgery? Will they find something that indicates there could be future surgeries?
I can play this game all day long.
But I won't.
What I will do, though, is hug my baby until he squirms, kiss his face until he pushes me away, play with him and do his exercises so he can continue to develop and grow, and, most of all, I will love him with every ounce of my being. Mom's always tell you that you love your kids equally, and it's taken some time for me to allow myself to get to this point, but I am overwhelmed with how true that is. I didn't think there would be enough room in my heart to love another child as much as I love Jeffrey, but baby Jax has wiggle-wormed his way into a snug cubby in my heart and refuses to move. I don't think I allowed myself to bond with him initially because I was so scared that he wasn't going to make it. But the more and more he grows and overcomes, the more I believe that no matter what they eventually diagnose him with, he will be just fine. He's surrounded by people who love and adore him. He has parents who will fight to the death for him. He has brothers who will do anything do protect him. And he has the support of hundreds of people who are pulling for him to keep doing what he's doing.
Sometimes life hands you lemons. In our case, a truckload. You can either be a sour-puss and piddle your life away, or you can use those lemons to make lemonade and hope that you touch someone who needs it. I have more good days than bad days anymore, but I truly hope that I am helping someone with the words I put on the screen. The last year (I can't believe it will be a year soon!) has been a true up and down roller coaster. But you know what? I still have a job, I still have a roof over my head (barely), I have two beautiful children who love each other and their parents, and most of all, my marriage is not only intact, but stronger than ever. We may not deal with things in the exact way we should, but everything gets dealt with at some point.
I am truly blessed to have such an amazing family, to have supportive friends, and an employer that's willing to work with me. I'm so thankful every day that I have people I can lean on, people that will tell me I need to take better care of myself until I actually do it. People that will just listen and not try to compare a situation in their lives to mine. People that will take five minutes just to say, "Hey, I'm thinking about you," and not get angry when I don't respond right away. In spite of everything, or maybe it's because of everything, I have never been happier in my life than I am right now.
"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."
First, I want to go over the speech evaluation. There are two types of speech, one is Understanding and I forget what the other one is called, but it has to do with your ability to say words. Jaxson tested at the 8-9 month level for understanding (same place he is with his other development), and he tested at the 6-7 month level for the other. The therapist said that he tested lower than she expected on that one, but it's mostly because of his cleft. He will only have the ability to say certain things while the cleft is open, so getting the harder consonants out of his mouth just won't happen. She, of course, fell in love with his big blue eyes, and said that since his cleft surgery is scheduled for next month, we should wait until after that to start speech. They would treat him a different way if we started now, so it doesn't make sense to do one thing for two months only to switch it up on him. I agreed, so I will get in touch with her when he's cleared to start speech after his surgery. Or I'll call and let her know that the surgery has been moved because they need to do another one on his head.
We met Jaxson's new OT with Help Me Grow today. She's awesome, and I think she's going to do great with Jax. It was funny, she made a comment before she left to her counterpart about how she was right, that we had everything under control and we did the things we're supposed to do. I got a kick out of that. Of course we are! We want nothing but the best for our baby, and I can't understand a parent not wanting that. I'm sure some parents have a hard time making time to do exercises and things with their kids, but man, I would sure make time to give my child every opportunity to learn and grow. Anyway, I shared a video (posted below) with them, and they think it's a good idea that we're going to see Neurology. Meaning, they saw something that didn't look quite right and they don't think it's a sensory issue. So it could be seizure related, or it could be some other neurological issue. Either way, October can't come fast enough.
This was the first time Jaxson did this while sitting in his bouncer. Normally, he's on the floor playing when it happens, but not this time. Which means the situation is changing, which means it can keep changing. The thing with this shaking that concerns me is that it opens up a plethora of new diagnoses. Disorders and syndromes I have researched for the last year have to be re-researched to include the potential for seizures, or seizure-like symptoms. It's just so frustrating that we have to wait until October to get into the Neurology department. And now I'm even more anxious to see what his CT scans say next month. Is it that his brain is out of room because he has a flat head, or his is brain not growing fast enough? Will they be able to see any abnormalities in his brain with the CT, or will Neurology want a PET scan? Is he going to need a fifth surgery? Will they find something that indicates there could be future surgeries?
I can play this game all day long.
But I won't.
What I will do, though, is hug my baby until he squirms, kiss his face until he pushes me away, play with him and do his exercises so he can continue to develop and grow, and, most of all, I will love him with every ounce of my being. Mom's always tell you that you love your kids equally, and it's taken some time for me to allow myself to get to this point, but I am overwhelmed with how true that is. I didn't think there would be enough room in my heart to love another child as much as I love Jeffrey, but baby Jax has wiggle-wormed his way into a snug cubby in my heart and refuses to move. I don't think I allowed myself to bond with him initially because I was so scared that he wasn't going to make it. But the more and more he grows and overcomes, the more I believe that no matter what they eventually diagnose him with, he will be just fine. He's surrounded by people who love and adore him. He has parents who will fight to the death for him. He has brothers who will do anything do protect him. And he has the support of hundreds of people who are pulling for him to keep doing what he's doing.
Sometimes life hands you lemons. In our case, a truckload. You can either be a sour-puss and piddle your life away, or you can use those lemons to make lemonade and hope that you touch someone who needs it. I have more good days than bad days anymore, but I truly hope that I am helping someone with the words I put on the screen. The last year (I can't believe it will be a year soon!) has been a true up and down roller coaster. But you know what? I still have a job, I still have a roof over my head (barely), I have two beautiful children who love each other and their parents, and most of all, my marriage is not only intact, but stronger than ever. We may not deal with things in the exact way we should, but everything gets dealt with at some point.
I am truly blessed to have such an amazing family, to have supportive friends, and an employer that's willing to work with me. I'm so thankful every day that I have people I can lean on, people that will tell me I need to take better care of myself until I actually do it. People that will just listen and not try to compare a situation in their lives to mine. People that will take five minutes just to say, "Hey, I'm thinking about you," and not get angry when I don't respond right away. In spite of everything, or maybe it's because of everything, I have never been happier in my life than I am right now.
"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."
Friday, May 24, 2013
Two Steps Forward, One Step Back
Yesterday was a full day in the Burks household. Jaxson had a Neonatology appointment in the morning, followed by a neurosurgery appointment in the afternoon. Our friend Kelly came to visit from Charlotte and Jayson did a tattoo last night. That said, I obviously wasn't able to post about his appointments last night, and I'm not even sure where to start now.
I guess I'll start with Neonatology. Jaxson had a developmental assessment, which went really well. The woman that did the assessment said that Jaxson is at an 8 or 9 month level developmentally, which is an improvement over last time. That puts him about two months behind, and last time it was three, so he's catching up a little! Which is fabulous news, but we have an off-set to that news. We were referred to Neurology. Jaxson has been sitting on his own and crawling for about a month now. About two weeks ago, Jaxson started doing this thing when he crawls. He stops for whatever reason and leans on one side (doesn't matter which one). He'll sit there just fine for a little bit and then he'll start shaking/rocking back and forth. He does the same thing sometimes when he's on all fours. He'll stop and nod his head up and down repeatedly. He doesn't lose consciousness or anything, but it's definitely not normal. He also has a habit of kicking the hard plastic piece of his bouncer or the hardwood floors when he's laying on his back. He kicks hard. We think that it should definitely hurt him and it does not. Then, when we were at audiology on Wednesday, he was sitting by a door and purposely jerking his head back to hit the door with the back of his head. I moved him and he stopped, but that's still not okay. And he likes to bang the back of his head off of our chests if he's sitting on our laps. So we're not really sure what's going on there, but hopefully neurology will have some answers. Overall, Jaxson's Neonatology appointment went well. He's following his own little growth curve a little under the 3rd percentile, but as long as he's not losing weight they said to keep doing what we are doing. Which is what I was going to do anyway, I don't hold a lot of stock in those charts.
After Neonatology, Jaxson and I came home for a little bit to have lunch before we left again for Neurosurgery. The appointment was a follow-up to his spine surgery. We got our referrals back to OT and PT, so we'll be spending a lot more time at the hospital again, but that's okay. Dr. Jackson said that his spine healed up great and that Jax looks good. Then there's more bad news. Jaxson's head isn't growing as fast as it should be. His head measures 42cm and he should be at 43.8cm. I don't really know what that means, except that they're concerned and they want another look at it. They were going to do a scan on his spine again anyway, just to make sure nothing tethered back up and the spinal fluid they pulled hasn't come back. So now when they do that scan, they are doing another CT of his skull. The scans will be done at the end of June so they can look at it before the cleft surgery in July. If his skull needs redone, they'll probably do that before the cleft. They are also going to take a second look at his ventricles. They were a little prominent on the last scan, nothing major I guess, and it could have been due to his head being constricted. But with everything else, they will take a second look at those too. And he wants another test to check Jaxson's kidneys again.
In between the two appointments, I received a call from Genetics. Dr. Hickey wants to follow up with Jaxson too. We didn't get an appointment scheduled because he is booked through July and the August calendar isn't open yet. So I have to call back in a couple of weeks to schedule the appointment. Since there's new information for Jaxson now, and there will be even more by August, I'm hoping that he'll have something to tell us. I am so tired of this waiting game. So many disorders and conditions affect development, that the doctors have mostly been just tracking everything and fixing the things that are fixable. Which is fine, except that we have no answers. I have done so much research and have not found one thing that fits Jaxson. I can find things that cover some of his issues, but not all of them combined. Hell, maybe he'll have something named after him. I don't know, it's just so frustrating. The doctors keep telling us that we're doing all of the right things to make sure he's treated properly, but until I know for sure what his diagnosis is going to be, I won't be able to trust that.
When I was on my way home, I called Jayson to tell him what was going on. His response was a heavy sigh and he asked, "It kinda feels like we're starting round two, doesn't it?" I said, "Yeah, it sure does." It's like we get amazing news about his development and how he's progressing by leaps and bounds, but then we take a step back with his body. I'm trying so hard to stay positive, but it's not easy. I sit here and think about everything Jaxson has gone through and I wonder why he can't just be done? Why do things keep popping up that need addressed? Why can't he be like a "normal" baby and not go to the hospital at least twice a week? I just want to grab him up and cuddle him forever and tell him that everything is going to be okay. I want to tell him that he's perfect the way he is and that he is special. I want to protect him from all of the craziness in the world, not take him to a place that is always stirring with craziness. I want him to always be as happy as he is now so he can keep lighting up the world with that smile. I don't want him to know pain or loneliness, although my rational brain tells me he will experience both in life. I just want him to be a regular boy and experience regular things and not be stuck in a waiting room all the time. I want so much for Jaxson, he deserves the world.
And then I think about what he has coming in the next months. I can't believe we're scheduling appointments in August already. He has urology appointments, scans on his head and back, cleft palate surgery, potential skull surgery, eye appointment, all of his regular therapies plus we're adding speech, audiology, HMG and RIHP appointments, a well baby check, and, oh yeah, his birthday! And then we're into September where he'll go back to cardiology for a checkup. It's overwhelming. We have an entire page of follow-up appointments each time we leave the doctor because they print out the upcoming appointments you have. It's just so much.
The hardest part for me is waiting to see about the skull. They can't do anything else with the front of his head because they already advanced it as far as they could. Which means they'll have to somehow expand the back of his head, which is flat. I have no idea how they are going to do that. You can't round bones that aren't rounded. So, what, will they take off part of his skull and put in some kind of plate? Will they have to do bone grafting? How long will it take and will he need a transfusion? What's the recovery time? How restricted is his activity going to be afterward? Have you ever tried to make a baby stay confined? Jaxson hates it. He wants to be on the floor all the time. There are so many unanswered questions, and everything is a waiting game.Everything in my life is a waiting game right now. I'm on the edge of my seat all the time, there's a tightness in my chest ready to burst into adrenaline when the time comes. Sleep, even though Jaxson actually sleeps through the night now, is nonexistent. Leaving the house is a chore. I'm irritable and moody. And I feel bad for Jayson and the kids because I have no control over any of it. I'm going to see if the doctor thinks I should up my meds when I go next week, just to make sure I don't lose my mind.
Well Jaxson is waking up for his lunch so I guess I'd better feed him. Will update when there's more to tell 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."
I guess I'll start with Neonatology. Jaxson had a developmental assessment, which went really well. The woman that did the assessment said that Jaxson is at an 8 or 9 month level developmentally, which is an improvement over last time. That puts him about two months behind, and last time it was three, so he's catching up a little! Which is fabulous news, but we have an off-set to that news. We were referred to Neurology. Jaxson has been sitting on his own and crawling for about a month now. About two weeks ago, Jaxson started doing this thing when he crawls. He stops for whatever reason and leans on one side (doesn't matter which one). He'll sit there just fine for a little bit and then he'll start shaking/rocking back and forth. He does the same thing sometimes when he's on all fours. He'll stop and nod his head up and down repeatedly. He doesn't lose consciousness or anything, but it's definitely not normal. He also has a habit of kicking the hard plastic piece of his bouncer or the hardwood floors when he's laying on his back. He kicks hard. We think that it should definitely hurt him and it does not. Then, when we were at audiology on Wednesday, he was sitting by a door and purposely jerking his head back to hit the door with the back of his head. I moved him and he stopped, but that's still not okay. And he likes to bang the back of his head off of our chests if he's sitting on our laps. So we're not really sure what's going on there, but hopefully neurology will have some answers. Overall, Jaxson's Neonatology appointment went well. He's following his own little growth curve a little under the 3rd percentile, but as long as he's not losing weight they said to keep doing what we are doing. Which is what I was going to do anyway, I don't hold a lot of stock in those charts.
After Neonatology, Jaxson and I came home for a little bit to have lunch before we left again for Neurosurgery. The appointment was a follow-up to his spine surgery. We got our referrals back to OT and PT, so we'll be spending a lot more time at the hospital again, but that's okay. Dr. Jackson said that his spine healed up great and that Jax looks good. Then there's more bad news. Jaxson's head isn't growing as fast as it should be. His head measures 42cm and he should be at 43.8cm. I don't really know what that means, except that they're concerned and they want another look at it. They were going to do a scan on his spine again anyway, just to make sure nothing tethered back up and the spinal fluid they pulled hasn't come back. So now when they do that scan, they are doing another CT of his skull. The scans will be done at the end of June so they can look at it before the cleft surgery in July. If his skull needs redone, they'll probably do that before the cleft. They are also going to take a second look at his ventricles. They were a little prominent on the last scan, nothing major I guess, and it could have been due to his head being constricted. But with everything else, they will take a second look at those too. And he wants another test to check Jaxson's kidneys again.
In between the two appointments, I received a call from Genetics. Dr. Hickey wants to follow up with Jaxson too. We didn't get an appointment scheduled because he is booked through July and the August calendar isn't open yet. So I have to call back in a couple of weeks to schedule the appointment. Since there's new information for Jaxson now, and there will be even more by August, I'm hoping that he'll have something to tell us. I am so tired of this waiting game. So many disorders and conditions affect development, that the doctors have mostly been just tracking everything and fixing the things that are fixable. Which is fine, except that we have no answers. I have done so much research and have not found one thing that fits Jaxson. I can find things that cover some of his issues, but not all of them combined. Hell, maybe he'll have something named after him. I don't know, it's just so frustrating. The doctors keep telling us that we're doing all of the right things to make sure he's treated properly, but until I know for sure what his diagnosis is going to be, I won't be able to trust that.
When I was on my way home, I called Jayson to tell him what was going on. His response was a heavy sigh and he asked, "It kinda feels like we're starting round two, doesn't it?" I said, "Yeah, it sure does." It's like we get amazing news about his development and how he's progressing by leaps and bounds, but then we take a step back with his body. I'm trying so hard to stay positive, but it's not easy. I sit here and think about everything Jaxson has gone through and I wonder why he can't just be done? Why do things keep popping up that need addressed? Why can't he be like a "normal" baby and not go to the hospital at least twice a week? I just want to grab him up and cuddle him forever and tell him that everything is going to be okay. I want to tell him that he's perfect the way he is and that he is special. I want to protect him from all of the craziness in the world, not take him to a place that is always stirring with craziness. I want him to always be as happy as he is now so he can keep lighting up the world with that smile. I don't want him to know pain or loneliness, although my rational brain tells me he will experience both in life. I just want him to be a regular boy and experience regular things and not be stuck in a waiting room all the time. I want so much for Jaxson, he deserves the world.
And then I think about what he has coming in the next months. I can't believe we're scheduling appointments in August already. He has urology appointments, scans on his head and back, cleft palate surgery, potential skull surgery, eye appointment, all of his regular therapies plus we're adding speech, audiology, HMG and RIHP appointments, a well baby check, and, oh yeah, his birthday! And then we're into September where he'll go back to cardiology for a checkup. It's overwhelming. We have an entire page of follow-up appointments each time we leave the doctor because they print out the upcoming appointments you have. It's just so much.
The hardest part for me is waiting to see about the skull. They can't do anything else with the front of his head because they already advanced it as far as they could. Which means they'll have to somehow expand the back of his head, which is flat. I have no idea how they are going to do that. You can't round bones that aren't rounded. So, what, will they take off part of his skull and put in some kind of plate? Will they have to do bone grafting? How long will it take and will he need a transfusion? What's the recovery time? How restricted is his activity going to be afterward? Have you ever tried to make a baby stay confined? Jaxson hates it. He wants to be on the floor all the time. There are so many unanswered questions, and everything is a waiting game.Everything in my life is a waiting game right now. I'm on the edge of my seat all the time, there's a tightness in my chest ready to burst into adrenaline when the time comes. Sleep, even though Jaxson actually sleeps through the night now, is nonexistent. Leaving the house is a chore. I'm irritable and moody. And I feel bad for Jayson and the kids because I have no control over any of it. I'm going to see if the doctor thinks I should up my meds when I go next week, just to make sure I don't lose my mind.
Well Jaxson is waking up for his lunch so I guess I'd better feed him. Will update when there's more to tell 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."
Thursday, May 16, 2013
Development Progress
Jaxson had an appointment this morning with his OT from Help Me Grow, whom we absolutely love. Today was her last visit because she's moving to Arizona, and I think Jaxson knew something was up because he showed off big time!
Two weeks ago when Mary Helen was here, she had written down that Jaxson was scooting backwards and only crawling about 6 steps when motivated. He was sitting on his own and able to play with his keys while sitting. He wasn't making any words or trying that hard, he wasn't eating well from the spoon and he still wasn't sleeping well. Mind you, Jaxson had spine surgery on March 29 and was restricted on what activity he was allowed to do, so I'm sure that had a lot to do with it. But he was able to do the signs for mommy and daddy and he could wave. He was not able to catch himself if he fell over while sitting, and when he leaned to one side while on his belly, his arm was almost fully extended.
Fast forward to today. Jaxson is up to a half-jar of baby food per day, mixed with rice. He crawls all over the place without hesitation. He has some issues with his legs getting stuck under him when he leans to the side, but most of the time he can work it out on his own. When he does lean to the side, he's almost in a sitting position and he can hold a toy and chew on it while he's leaned over. He not only does the sign for mommy, but says "mama" quite clearly. Sometimes you can understand him saying hi or yay, but there are no consonant sounds, just the vowels. But he's doing very well with his language and now we're working on the signs for more and milk. He now sleeps much better than he ever has. He still wakes up most nights, but it's pretty easy to get him to go back down so it's much more tolerable. He catches himself if he loses his balance while sitting. He can pick up a toy (heavier than his keys) and hold it with one hand while playing with it with the other. He can stand holding onto his exersaucer for a few seconds. He can't pull himself up, but he will stand there and hang on while playing if we sit behind him. The biggest development actually occurred while Mary Helen was here: Jaxson went from crawling to sitting five times! Prior to today, he was unable to do that, and he would get mad when he wanted to sit and couldn't do it alone.
It was such a joy to see how excited Mary Helen was over Jaxson's progress. He has improved leaps and bounds over the last two weeks alone, and he's only getting better. I know it won't be long before he's caught up to his cousin and running all over the place! The next step is to get a ball for him to lay on and work on catching himself in all directions. Also we are to work on clapping and tapping toys together. He's so close as it is, it won't take much work to get him there. He just needs to get that core strengthened so he can balance comfortably without thinking he needs a free hand. That means more time on the floor playing with Jeffrey and Buckeye, harassing them both to no end. They both love it though! Now if we could just get him to keep his hearing aids in his ears and out of his mouth...
--"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."
Two weeks ago when Mary Helen was here, she had written down that Jaxson was scooting backwards and only crawling about 6 steps when motivated. He was sitting on his own and able to play with his keys while sitting. He wasn't making any words or trying that hard, he wasn't eating well from the spoon and he still wasn't sleeping well. Mind you, Jaxson had spine surgery on March 29 and was restricted on what activity he was allowed to do, so I'm sure that had a lot to do with it. But he was able to do the signs for mommy and daddy and he could wave. He was not able to catch himself if he fell over while sitting, and when he leaned to one side while on his belly, his arm was almost fully extended.
Fast forward to today. Jaxson is up to a half-jar of baby food per day, mixed with rice. He crawls all over the place without hesitation. He has some issues with his legs getting stuck under him when he leans to the side, but most of the time he can work it out on his own. When he does lean to the side, he's almost in a sitting position and he can hold a toy and chew on it while he's leaned over. He not only does the sign for mommy, but says "mama" quite clearly. Sometimes you can understand him saying hi or yay, but there are no consonant sounds, just the vowels. But he's doing very well with his language and now we're working on the signs for more and milk. He now sleeps much better than he ever has. He still wakes up most nights, but it's pretty easy to get him to go back down so it's much more tolerable. He catches himself if he loses his balance while sitting. He can pick up a toy (heavier than his keys) and hold it with one hand while playing with it with the other. He can stand holding onto his exersaucer for a few seconds. He can't pull himself up, but he will stand there and hang on while playing if we sit behind him. The biggest development actually occurred while Mary Helen was here: Jaxson went from crawling to sitting five times! Prior to today, he was unable to do that, and he would get mad when he wanted to sit and couldn't do it alone.
It was such a joy to see how excited Mary Helen was over Jaxson's progress. He has improved leaps and bounds over the last two weeks alone, and he's only getting better. I know it won't be long before he's caught up to his cousin and running all over the place! The next step is to get a ball for him to lay on and work on catching himself in all directions. Also we are to work on clapping and tapping toys together. He's so close as it is, it won't take much work to get him there. He just needs to get that core strengthened so he can balance comfortably without thinking he needs a free hand. That means more time on the floor playing with Jeffrey and Buckeye, harassing them both to no end. They both love it though! Now if we could just get him to keep his hearing aids in his ears and out of his mouth...
--"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, May 14, 2013
Vision Test, Sleep Issue, Cleft Repair, Etc.
I promised an update last week and I just didn't get to it. I apologize. Last Thursday, Jayson called me at work and let me know that there was clear liquid coming out of Jaxson's ear. I called the doctor and we were able to get him in that evening. The god news is that the tubes are doing their job. The bad news is that because he has hearing aids, he is more susceptible to ear infections. So when we went to see the ENT yesterday (it was a prescheduled appointment), he told us to keep the drops on hand and if we ever need a refill to call his office. He said that if it happens again, we can just use the drops. If the liquid is discolored at all, then we'll need to take him in, but as long as it's clear we can just use the drops and it will clear up pretty quickly. So that is nice because that means we don't have to rush him off to the doctor every time his ears decide to act up.
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
Early Thursday morning, I took Jaxson to the eye doctor for his first vision screening. Unless they did one in the NICU I am unaware of, which I doubt. I've had strong concerns about Jaxson's eyes, given my own issues with strabismus that runs in my family. His vision alone is fine. He's a little far-sighted, but not out of the normal range for a baby his age. The crazy thing is that the doctor said his right eye isn't pulling in (same eye as me and my mom). He said that when Jaxson looks to the right, his left eye doesn't go in all the way, so if we ever see him turning his head a little to see something, that's why. He's compensating well for it right now, so no action. But we go back in three months to have his eyes checked again just to see how he's progressing. Personally, I think the doctor is crazy. I'm pretty sure his right eye is turning in, even if his left eye isn't fully cooperating. So I'm keeping an eye on it at home and I'll see what he says in three months. Nothing can be done about it right now anyway, so hopefully it's just a phase. I know I had the same concerns about Jeffrey and his eyes are fine now, so it could pass and be part of his slow development. The doctor also said that Jaxson's eyes are a little wide-set, which you can tell by looking at him. But they measured wide too, so that's something else to add to the list.
The reason for the ENT visit on Monday was a follow up to the sleep study. Jaxson snored 95% of the night during the study, so they wanted to see if there was anything obstructing his airway. The doctor read the report while I was there and said that he didn't see anything that needed action at this point. I don't know what that means, and for whatever reason I didn't push for an answer. But I guess it's something else for us to monitor and keep them updated about. Jaxson is now on Claritin every day, poor little guy's eyes turn read and watery within minutes of being outside without it. And we think that's helping.
We also think that the spinal surgery was a HUGE help in a lot of ways. He is definitely sleeping better, we're down to him waking up once a night on most nights. Sometimes he doesn't wake up at all (not often, but we'll take what we can get!) and sometimes he still wakes up at least twice, but his good nights are coming more and more frequently.He's also taking two naps a day on a regular basis and I think he's finally adjusting to a schedule. Because of his delays, I just think it took his little body more time than normal to adjust, plus I think his back was hurting him more than we realized. A tethered cord can cause lower back pain, so getting that fixed has been huge for his development.
Speaking of development, Jaxson officially crawls! He's pretty jerky with his movements, but he's pretty much only happy if he's on the floor playing with toys. He loves playing with Jeffrey in the front room and getting whatever he can in his mouth. Last night, he ate two rice rusks all by himself. It's the first time we've gotten him to understand that they are food and he's supposed to eat them! We haven't tried to give him any for awhile and it was like he'd been eating them for a week. He hasn't taken to anything smaller yet, but we're working on that too. He is starting to take more from a spoon too. We have to mix all of his food with rice or he won't touch it, but he eats about half a jar per day now, as opposed to a jar lasting 3 days or half of it going to waste. He's also starting to babble! His favorite thing to say is, "mama". It's actually the only thing he says haha. He makes the funniest face when he says it too. It's like he has to really try to make the sound, but he loves saying it to get my attention and then giggling at me when I respond. He is so much fun right now! We're also working on standing. I'm not sure how long it will be before he can pull himself up, but if we stand him up, he can hold on to his exersaucer for a little while and stand on his own while playing with one of the toys attached to it. We still have to sit behind him because it doesn't last a very long time, but it's getting better and each time he wants to try for longer. He has improved leaps and bounds over the last month and it's so great to see him acting like any other baby his age, at least mos of the time!
Jaxson's cleft palate repair has been scheduled for July 29. It's a pretty quick procedure and I think he will only be there for one night, so it's not all that bad. They saved the easiest one for last! Of course, knowing Jaxson, we'll still be there for three nights. He doesn't know how to do anything the easy way! I'm actually surprised they didn't schedule the surgery for July 3rd. He was in the hospital on Christmas and Easter, why not his birthday?
The biggest news to share, though, is that I am on medical leave from work for 6 weeks. The time finally came when I could no longer properly do my job and be the mom of a child with a disability. Jeffrey and Jaxson were both miserable, Jayson and I had no reign on our tempers, and my production at work went down the drain. I talked to the doctor who told me to take my Effexor for one more month and then I'm going back to report to him how I am doing. I'm also starting counseling on Friday to address some things that are going on with me. Thanks to Sammy and listening to/watching her deal with post-concussion syndrome, I've learned to become more in-tune with my body and understand what it's trying to tell me. I'm just glad I was able to recognize it now instead of before it was too late. I do no one any good if I don't take care of myself, so that's where I am. The break from work will be nice for everyone. And when I go back to work, I am dropping down to a part-time CSR. Jayson is going to go back to work to make up the difference, but it's clear that I cannot continue to work full-time and survive.
I'm so excited for everything that is going on with us right now. I'm taking the right steps to care for myself, Jayson gets to go back to work (which he very much wants to do), Jaxson is improving every day and Jeffrey is throwing less fits. I am also excited that both Jeffrey and Jaxson will be headed to school this fall! Help Me Grow is helping us get them both into the same Head Start school! I was so excited to hear that we would be able to do that because I wanted so badly to keep them together. Because Jaxson qualifies with his medical conditions, Jeffrey can go in as a normal peer. It means we don't have to qualify income-wise and we only have to pay $100 a month. Huge, huge, huge. Jeffrey will be so excited (and already is) to go back to school, and he's got such a caring and sensitive way about him that being around kids with disabilities will be nothing for him. He's fabulous with Jaxson and I think it will be so good for him to be in that environment until we get him into kindergarten.
Overall, things are on a positive swing for the Burks family. Jaxson is almost done with surgeries (5 in one year boggles my mind) and we're getting everything else straightened out slowly but surely. I still have bad days, but not today. Today is a good day.
"Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference."
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