Many people have been asking how we are doing. I post a lot about Jaxson, and I try to include everyone else when I can, but lately that hasn't happened. So rather than post something horrifically long on Facebook, I decided to blog. I have no idea how long this will end up being, or how erratic my writing will be, so please be prepared.
We'll start with a quick bit about Jaxson. I've noted what's been going on with his head, but not how he is doing overall. Jaxson is actually doing quite well, believe it or not. He's always in a good mood, and even when he's mellow he's still ornery. Most days you'd never know there was anything wrong with him but for the bulge on the side of his head. His gait is off-balance, but we're not too worried yet. I wouldn't walk straight if there was more weight on one side of my head than the other either! He's just such a happy kid, it's so hard to even tell when there's something going on with him. He never lets anything get him down!
Jeffrey has always been one of those kids that goes in cycles. He will have a streak of fabulous behavior and then a streak of being horrible. The streaks of good behavior are coming fewer and farther between, so it's clear that he's struggling with this one. Jaxson has been to the neurosurgeon three times in less than two weeks, plus other appointments. Jeffrey knows something is up, we've had to make too many trips, and he's worried about his brother. He wants to play with Jaxson so bad, and he does, but we have to remind him to take it easy because of Jax's head. It sucks. All they want to do is play together and they can't even play like normal boys. So Jeffrey acts out, he throws fits, he cries for no reason and he's become increasingly violent and rough. We take him to behavioral health in November, and besides the ADHD they're going to diagnose him with, I'm worried about other things that aren't quite as easy to help him deal with. No, I do not think ADHD is something "easy", but I have experience with it and I have learned techniques that work with Jeffrey already. I will not medicate him unless there's no other option. I'm just ready for this evaluation so we can work on getting him the help and coping skills he needs.
I think the best explanation for Jayson and I is tired. We're tired, drained, scared and worried. We're tired of the appointments, of the endless hours of waiting for someone to get back to us with answers, tired of never having a definitive answer or course of action, tired of not getting to spend time together or even share a bed. We haven't shared a bed since surgery because Jeffrey has a tendency to sneak into Jaxson's bed. They both move around a lot at night, so it's not safe for Jaxson for them to sleep together. So Jayson sleeps with Jeffrey and I sleep with Jaxson. Going on two weeks now. Our marriage is as solid as it ever has been, and our lines of communication flow freely, but it just sucks. We're drained from worrying all the time. Wondering if Jaxson will be awake in the morning, or if the next surgery is going to go as planned. Terrified that anything might happen to our baby at any given moment. And on top of this we have to take care of Jeffrey, who is clearly the biggest loser in this situation. He gets less attention now and we worry that we are missing something with him. We haven't even had time to get his school supplies or uniforms, and school starts next week! He's always waiting on us for something because Jaxson needs so much attention. And Jeffrey is SUCH a good kid, it is heartbreaking to watch him deal with this. Almost as heartbreaking as it is to watch Jaxson deal with it. It's hard enough watching one of your children regress because of a medical issue, but add to that watching your other child regress to toddler-like behavior and you have a pretty good dose of guilt built up.
Earlier today, Jayson took Jeffrey to pick up some paving stones from a friends house for the back yard. That left Jax and I at home for awhile. He sat on my lap for awhile and we watching Signing Time. I am not an emotional person, so I usually know when I'm due for a good cry. I've been due for about a month, so I wasn't all that surprised when I teared up holding him. Jaxson doesn't see me being emotional very often, so he wasn't quite sure what to make of it at first. Then he just looked at me with those big blue eyes and gave me a big ornery grin. It was as if he was saying, "Hey mom, it's cool, I got this!" How is it possible that such a tiny human being can possess so much strength as to hold up his own mother? And while tears streamed down my face for a little while longer, I wasn't quite as upset as before.
For me, the biggest frustration is having to explain to people that even after he gets the shunt (if he needs it), he's still not okay. In fact, I have to keep a very close eye on him all the time after that to make sure the shunt does't malfunction, get clogged or get infected. Any one of those things is an ER trip with immediate surgery. Having surgery with a shunt in place creates all kinds of new risks we have to be aware of. We would have to take precautions anytime we took him somewhere where the air pressure is different. I have to look this up, but I don't think he will be allowed to participate in contact sports. So if that's the only way we're going to fix his hydrocephalus, then of course we will do it, but there is a whole new load of things to learn. But not everyone is educated on things like this, and why should they be? I knew nothing of it until I had to, so I wouldn't expect most people to understand. But it is frustrating. Hydrocephalus is a lifelong condition. It does not go away, so no, Jaxson will still not be okay after this. Not even with regard to his head, but everything else that goes on with him.
I have to say that this has been the hardest issue for me to deal with. I know it's a pretty serious problem, but I don't think I've been this scared of losing my baby since they took him off the heart medication in the NICU. Because, like heart conditions, hydrocephalus can sneak up on you at any time. There's often no tangible cause for fluid to suddenly build up, that's why people with hydrocephalus are monitored so closely.
It's now after 10pm and I can't believe I haven't turned into a pumpkin! I'm beat, Jax is asleep on the floor and J is asleep on the couch and Jeffrey is in bed. I suppose I should join them if I want to be able to function in the morning. Oh who am I kidding? I eat little and sleep less, I'm sure I'll be up for awhile and will still hop out of bed at 6am to get my day started tomorrow. Good night!
"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, August 19, 2014
Sunday, August 17, 2014
Insert Witty Title Here
I've had this blog in my head for days, and just haven't had the time to sit down and type it out. Between the two boys, I might lose my mind before school starts! But I digress. Already. Today's blog is solely about Jaxson and my personal opinions about what the future may hold.
First, I want to bring you back to January of this year. If you recall, we took Jaxson in for a CT because we were concerned about pressure. Because he still had his distractors and the CT didn't show anything, they took out the distractors and did an MRI. Even though his ventricles were enlarged, we were told no hydrocephalus. I was as confused as you are. Fast forward to March, I essentially forced neurosurgery to scan Jaxson's brain/Chiari because I felt he was having pressure again. Again we were told no. Fast forward to July and the eye doctor appointment. We are told his optic nerves are elevated and he needs an MRI to check for hydrocephalus. Lo and behold, proof. I had been screaming it for 8 months before I got the doctors to see what I saw. Ironically enough, it was our new NS that found it, which is a good sign I suppose.
So, hydrocephalus finally diagnosed, Dr. Governale discusses Endoscopic Third Ventriculostomy with me and how Jax is a good candidate and may save him from needing a shunt. I agree and we schedule surgery for the following week. When I get home, I let everything process and sink in, and then I reach out to my amazing Facebook groups for opinions. Some of the people I've met are extremely knowledgeable about certain conditions, and some of them are REALLY good at reading brain MRI's (which I am not!). The bulk opinion was that Jaxson's head is too small and needs to be expanded again. However, Jaxson's head is growing on the same curve it has been since his distraction surgery. I've been keeping an eye on it myself and there's nothing concerning there so far. So I agreed to do the ETV to avoid (hopefully) shunt placement.
Initially, everything seemed to be going really well. Jax was ready to go home the day after surgery and he was pretty happy. Then he ended up with a HUGE mass of fluid on the side of his head. I took him in to NS before another appointment just 5 days after surgery. NS ended up draining over 40mL of fluid out of his head and wrapping it with an ACE bandage for pressure. It sounds like there's a tiny hole in his dura, and keeping the pressure on it may help it heal. Now, almost a week after the fluid was drained, Jaxson refuses to keep his wrap on and his head is not getting better. It's not getting worse either, so that's good, but it's not getting better. So I finally followed my mommy instincts and placed a call to Dr. Jackson, Jax's first NS who we absolutely loved. He let me know that from the sounds of everything, treatment has been reasonable and we need to give the ETV time to do it's job. He said he once had a patient who had a similar bulge last 9 months! He said that was a different situation, but I'm glad he said that because now I won't have a heart attach when the swelling doesn't go down as fast as I think it should. He said that it's possible that as pressure goes down in his head, Jaxson's Chiari may get better as well, which is awesome!
The other thing I asked Dr. Jackson about was Jaxson's spine. Since he did the un-tethering procedure, I wanted to pick his brain about what the obstacles were during that surgery. That man has an amazing memory! He doesn't have access to any of Jaxson's records or his operating notes anymore. He remembered that Jaxson's spine looked rough on the initial MRI, and he remembered that the procedure itself was not satisfying for him. He said that Jaxson has a lot of arachnoid adhesions, and that he basically did as much as he could without potentially causing further damage. He said that Jaxson's spine is always going to look tethered on an MRI.
Time for my opinions. Please remember that these are just that, opinions. Based on conversations I've had with doctors and what my gut and brain are telling me about my baby.
Here's what I see happening as time goes on. Jax will likely need a shunt. Although Dr. Jackson said that if the ETV lasts 6 months then we have a better prognosis of it lasting a long time. Given that Jax has a huge bulge on the side of his head and that his hydrocephalus symptoms aren't getting that much better, I foresee a shunt sooner rather than later. I see another distraction surgery in our future. The joys of pins. Because I agree with the people that say his head is too small, I mean, a portion of the back of his head is still flat. And if none of that makes his Chiari go away (which it probably won't because of his tethered cord), then he'll likely need decompression at some point in his life. The Chiari may not need addressed for many, many years, but I'm sure that at some point he will need it. It will be a matter of distinguishing which disorder is causing his symptoms.
As far as Jax's spine, I'm thinking that any attempt to clean out scar tissue will be futile. The more Jax grows, the tighter his spine is going to be pulled, and any surgery can cause scar tissue. So if there's scar tissue on scar tissue, eventually his spine won't be able to pull any farther. Mind you, this is as he grows, which he is not doing much of right now. We go back to Endocrinology in February for more tests. Now, Jax is already having some symptoms from the tethered cord. He limps and drags his right foot when he walks, he has pain in his right leg and wants me to rub it all the time, and that same leg did not react to the knee-jerk test the last time we had him at Complex Care. Since it's not prohibiting him from doing anything, it's not even something I'm going to bring up to the doctor. I'm leaving that alone for as long as I can because there are only four options when the time comes: Leave it alone and see how he does, attempt un-tethering again, shorten the spine, or spinal transection. You can see my dilemma. He's 2. He probably can't even have his spin shortened or transected until he's done growing. I don't know that, but it makes sense. Not that I like either of those two options. Thankfully, that's not something we have to worry about right now, but it is something that weighs on me at times.
Jaxson is such a joy to have in my life and an amazing light to everyone he meets. I have no concerns about his cognitive ability (kid is smart!), just his current and future physical limitations. As long as he keeps that smile on his face, I know everything will be okay! I've seen so many things on the web lately, I can honestly say that I would rather have Jax here and need constant monitoring than for him to not be here at all. I cannot bear what the parents of kids with cancer go through, especially if the battle is lost. I cry every time. For the parents as well as the loss of a beautiful soul. So, I take comfort in knowing that, as of right now, there is no threat to Jaxson's life expectancy. I hope that doesn't change, but if it does, I'm sure we'll beat it like we have everything else!
~"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."
First, I want to bring you back to January of this year. If you recall, we took Jaxson in for a CT because we were concerned about pressure. Because he still had his distractors and the CT didn't show anything, they took out the distractors and did an MRI. Even though his ventricles were enlarged, we were told no hydrocephalus. I was as confused as you are. Fast forward to March, I essentially forced neurosurgery to scan Jaxson's brain/Chiari because I felt he was having pressure again. Again we were told no. Fast forward to July and the eye doctor appointment. We are told his optic nerves are elevated and he needs an MRI to check for hydrocephalus. Lo and behold, proof. I had been screaming it for 8 months before I got the doctors to see what I saw. Ironically enough, it was our new NS that found it, which is a good sign I suppose.
So, hydrocephalus finally diagnosed, Dr. Governale discusses Endoscopic Third Ventriculostomy with me and how Jax is a good candidate and may save him from needing a shunt. I agree and we schedule surgery for the following week. When I get home, I let everything process and sink in, and then I reach out to my amazing Facebook groups for opinions. Some of the people I've met are extremely knowledgeable about certain conditions, and some of them are REALLY good at reading brain MRI's (which I am not!). The bulk opinion was that Jaxson's head is too small and needs to be expanded again. However, Jaxson's head is growing on the same curve it has been since his distraction surgery. I've been keeping an eye on it myself and there's nothing concerning there so far. So I agreed to do the ETV to avoid (hopefully) shunt placement.
Initially, everything seemed to be going really well. Jax was ready to go home the day after surgery and he was pretty happy. Then he ended up with a HUGE mass of fluid on the side of his head. I took him in to NS before another appointment just 5 days after surgery. NS ended up draining over 40mL of fluid out of his head and wrapping it with an ACE bandage for pressure. It sounds like there's a tiny hole in his dura, and keeping the pressure on it may help it heal. Now, almost a week after the fluid was drained, Jaxson refuses to keep his wrap on and his head is not getting better. It's not getting worse either, so that's good, but it's not getting better. So I finally followed my mommy instincts and placed a call to Dr. Jackson, Jax's first NS who we absolutely loved. He let me know that from the sounds of everything, treatment has been reasonable and we need to give the ETV time to do it's job. He said he once had a patient who had a similar bulge last 9 months! He said that was a different situation, but I'm glad he said that because now I won't have a heart attach when the swelling doesn't go down as fast as I think it should. He said that it's possible that as pressure goes down in his head, Jaxson's Chiari may get better as well, which is awesome!
The other thing I asked Dr. Jackson about was Jaxson's spine. Since he did the un-tethering procedure, I wanted to pick his brain about what the obstacles were during that surgery. That man has an amazing memory! He doesn't have access to any of Jaxson's records or his operating notes anymore. He remembered that Jaxson's spine looked rough on the initial MRI, and he remembered that the procedure itself was not satisfying for him. He said that Jaxson has a lot of arachnoid adhesions, and that he basically did as much as he could without potentially causing further damage. He said that Jaxson's spine is always going to look tethered on an MRI.
Time for my opinions. Please remember that these are just that, opinions. Based on conversations I've had with doctors and what my gut and brain are telling me about my baby.
Here's what I see happening as time goes on. Jax will likely need a shunt. Although Dr. Jackson said that if the ETV lasts 6 months then we have a better prognosis of it lasting a long time. Given that Jax has a huge bulge on the side of his head and that his hydrocephalus symptoms aren't getting that much better, I foresee a shunt sooner rather than later. I see another distraction surgery in our future. The joys of pins. Because I agree with the people that say his head is too small, I mean, a portion of the back of his head is still flat. And if none of that makes his Chiari go away (which it probably won't because of his tethered cord), then he'll likely need decompression at some point in his life. The Chiari may not need addressed for many, many years, but I'm sure that at some point he will need it. It will be a matter of distinguishing which disorder is causing his symptoms.
As far as Jax's spine, I'm thinking that any attempt to clean out scar tissue will be futile. The more Jax grows, the tighter his spine is going to be pulled, and any surgery can cause scar tissue. So if there's scar tissue on scar tissue, eventually his spine won't be able to pull any farther. Mind you, this is as he grows, which he is not doing much of right now. We go back to Endocrinology in February for more tests. Now, Jax is already having some symptoms from the tethered cord. He limps and drags his right foot when he walks, he has pain in his right leg and wants me to rub it all the time, and that same leg did not react to the knee-jerk test the last time we had him at Complex Care. Since it's not prohibiting him from doing anything, it's not even something I'm going to bring up to the doctor. I'm leaving that alone for as long as I can because there are only four options when the time comes: Leave it alone and see how he does, attempt un-tethering again, shorten the spine, or spinal transection. You can see my dilemma. He's 2. He probably can't even have his spin shortened or transected until he's done growing. I don't know that, but it makes sense. Not that I like either of those two options. Thankfully, that's not something we have to worry about right now, but it is something that weighs on me at times.
Jaxson is such a joy to have in my life and an amazing light to everyone he meets. I have no concerns about his cognitive ability (kid is smart!), just his current and future physical limitations. As long as he keeps that smile on his face, I know everything will be okay! I've seen so many things on the web lately, I can honestly say that I would rather have Jax here and need constant monitoring than for him to not be here at all. I cannot bear what the parents of kids with cancer go through, especially if the battle is lost. I cry every time. For the parents as well as the loss of a beautiful soul. So, I take comfort in knowing that, as of right now, there is no threat to Jaxson's life expectancy. I hope that doesn't change, but if it does, I'm sure we'll beat it like we have everything else!
~"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."
Tuesday, July 29, 2014
Catching Up
We finally got our internet last night, and I logged on today to discover that I haven't posted in over six months. For that, I apologize. We are hopeful things will be back on track now!
The last six months have flown by. Jax had his distractors out and cleft palate fixed and after that we haven't had any inpatient stays, our longest stretch by far! We did have to go to the ER a few times for various things including a fall down the steps, but that's to be expected with you have kids and especially boys.
Everything was going very smoothly until Jaxson's eye appointment two weeks ago. They discovered that his optic nerves are elevated and that he also needs glasses. I'm pretty sure I called that from day one, but Jax cooperated well at the exam and they were able to get a really good look at his eyes. So they put in a call to neurosurgery who referred back to plastics and we have that appointment tomorrow. I had to push for an MRI because no one else thought of it, and we had that last week. I haven't seen the report yet, but I was told that his nerves are elevated about a millimeter. I just don't know if it's a CSF flow issue or a space issue. Well, the doctor didn't know when I spoke with him on Thursday. I know it's a space issue and I've been preparing myself for another surgery for months. I knew we weren't done and I'm not convinced we'll be done after this one. He just has so much stuff going on in his little body and I don't think he can handle it all. At least he's happy all the time!
I am pretty confident in that he'll need another distraction surgery. You know, the one with the metal device in his head and the pins that we had to turn for 30 days. Yeah, the one that was awful. But, if we have to choose between that and a shunt, I'm going with the surgery. A shunt is permanent, so if we can fix his issues without placing a foreign object in his body on a permanent basis, then that's what we're going to do. My hope is that it will also relieve his Chiari and he won't have to deal with a decompression/fusion surgery at some point.
I think that this is suddenly becoming difficult for me. I'm struggling more each day with how Jaxson is progressing and how his body reacts to everything. Not having a known syndrome is making me crazy and I scour the internet for answers that I can't find. We have genetic testing next month, and I know that will at least give us something, but it takes 3-4 months for the results as the test is sent to Baylor. We try our best to live each day to the fullest and to make sure that both of our kids are happy, but sometimes it just feels like it's never enough. Jaxson is always happy and smiling, but he gets left out of a lot of things because he can't handle being in the sun for very long. It doesn't matter if he's in the shade or not, the brightness of the sun crushes him, and the pressure in his head right now only makes it worse. That and it makes him sleep a lot, which concerns me. I know, before he wouldn't sleep enough and now that he is I should be praising God, but when you have kids, anything out of the ordinary is cause for concern. And I'm frustrated with the doctors for not having a bigger sense of urgency about this situation. They don't seem to be concerned at all, but part of me thinks it's just because they know they can only do so much and right now that means wait. I just want some answers for my baby. Until we get some, I won't know if he's getting the proper treatment or therapy recommendations. I mean, the therapists are great at seeing what he needs help with and adjusting their plan, but I am looking at the future. I want to be able to plan a course of action and I'm stuck here, helplessly waiting for the doctors to tell me what's next.
I've become extremely active in some great Facebook groups recently, and I've found a ton of support there. I've given a box of formula to a mom, I've sat with a mom while she waited to hear about surgery, and I've spoken with numerous moms who have supported me and answered my questions as well as me returning the favor for them. I'm closer with some of those moms than I am with my, now pretty sparse, circle of friends. Not only do we understand each other, but most of us stay home with our kids because we can't afford to pay a nurse and our "special" kids can't go to daycare. So they're around when I am, where my mom friends of "normal" kids tend to have jobs and extra activities to do with their kids. Which is awesome, I can't think of any of my mom friends that don't go all out for their kids, just like moms of special kids. It's just a different kind of "going all out" and the term "going mama bear" on someone has a whole new meaning. Because rather than it being another mom or someone else's bratty kid, we get to act crazy with doctors and there's nothing they can do about it! :) But I do wish that some of my friends would remember that I also have a "normal" kid in Jeffrey. He loves people and other kids, he's very social and extremely active. Jax isn't house-ridden either, we just have to find a place with shade for him. I don't think that's too much to ask.
So maybe this is more me getting used to being at home all the time. Jayson said it took him about a year to get into a good routine with the boys and I'm just about there so I guess I'm right on track!
~"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."
The last six months have flown by. Jax had his distractors out and cleft palate fixed and after that we haven't had any inpatient stays, our longest stretch by far! We did have to go to the ER a few times for various things including a fall down the steps, but that's to be expected with you have kids and especially boys.
Everything was going very smoothly until Jaxson's eye appointment two weeks ago. They discovered that his optic nerves are elevated and that he also needs glasses. I'm pretty sure I called that from day one, but Jax cooperated well at the exam and they were able to get a really good look at his eyes. So they put in a call to neurosurgery who referred back to plastics and we have that appointment tomorrow. I had to push for an MRI because no one else thought of it, and we had that last week. I haven't seen the report yet, but I was told that his nerves are elevated about a millimeter. I just don't know if it's a CSF flow issue or a space issue. Well, the doctor didn't know when I spoke with him on Thursday. I know it's a space issue and I've been preparing myself for another surgery for months. I knew we weren't done and I'm not convinced we'll be done after this one. He just has so much stuff going on in his little body and I don't think he can handle it all. At least he's happy all the time!
I am pretty confident in that he'll need another distraction surgery. You know, the one with the metal device in his head and the pins that we had to turn for 30 days. Yeah, the one that was awful. But, if we have to choose between that and a shunt, I'm going with the surgery. A shunt is permanent, so if we can fix his issues without placing a foreign object in his body on a permanent basis, then that's what we're going to do. My hope is that it will also relieve his Chiari and he won't have to deal with a decompression/fusion surgery at some point.
I think that this is suddenly becoming difficult for me. I'm struggling more each day with how Jaxson is progressing and how his body reacts to everything. Not having a known syndrome is making me crazy and I scour the internet for answers that I can't find. We have genetic testing next month, and I know that will at least give us something, but it takes 3-4 months for the results as the test is sent to Baylor. We try our best to live each day to the fullest and to make sure that both of our kids are happy, but sometimes it just feels like it's never enough. Jaxson is always happy and smiling, but he gets left out of a lot of things because he can't handle being in the sun for very long. It doesn't matter if he's in the shade or not, the brightness of the sun crushes him, and the pressure in his head right now only makes it worse. That and it makes him sleep a lot, which concerns me. I know, before he wouldn't sleep enough and now that he is I should be praising God, but when you have kids, anything out of the ordinary is cause for concern. And I'm frustrated with the doctors for not having a bigger sense of urgency about this situation. They don't seem to be concerned at all, but part of me thinks it's just because they know they can only do so much and right now that means wait. I just want some answers for my baby. Until we get some, I won't know if he's getting the proper treatment or therapy recommendations. I mean, the therapists are great at seeing what he needs help with and adjusting their plan, but I am looking at the future. I want to be able to plan a course of action and I'm stuck here, helplessly waiting for the doctors to tell me what's next.
I've become extremely active in some great Facebook groups recently, and I've found a ton of support there. I've given a box of formula to a mom, I've sat with a mom while she waited to hear about surgery, and I've spoken with numerous moms who have supported me and answered my questions as well as me returning the favor for them. I'm closer with some of those moms than I am with my, now pretty sparse, circle of friends. Not only do we understand each other, but most of us stay home with our kids because we can't afford to pay a nurse and our "special" kids can't go to daycare. So they're around when I am, where my mom friends of "normal" kids tend to have jobs and extra activities to do with their kids. Which is awesome, I can't think of any of my mom friends that don't go all out for their kids, just like moms of special kids. It's just a different kind of "going all out" and the term "going mama bear" on someone has a whole new meaning. Because rather than it being another mom or someone else's bratty kid, we get to act crazy with doctors and there's nothing they can do about it! :) But I do wish that some of my friends would remember that I also have a "normal" kid in Jeffrey. He loves people and other kids, he's very social and extremely active. Jax isn't house-ridden either, we just have to find a place with shade for him. I don't think that's too much to ask.
So maybe this is more me getting used to being at home all the time. Jayson said it took him about a year to get into a good routine with the boys and I'm just about there so I guess I'm right on track!
~"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."
Saturday, January 18, 2014
This blog has no title
As I sit in Jaxson's room, he is taking a nap and so is his daddy. Both of them need it. I am contemplating a lot of things right now. I am heavy hearted, although not so much for Jaxson even though he's a contributing factor. No, what I am heavy hearted about is the number of pages I see on facebook every day for kids with special needs, rare diseases and cancer. Add to that the number of adults I know who have recently been diagnosed with something and it's overwhelming. I want so badly to help everyone and it's frustrating that I can't because I can barely handle my own kids issues.
It's sad to see the sheer number if pages like that popping up on Facebook. Not because they shouldn't have pages, but because there is a clear problem with the world today. We eat so much processed food and put so many chemicals into our bodies that it's no wonder said bodies are succumbing to disease. It makes me angry and it makes me sad. What did these people, especially the kids and babies, do to deserve such treatment? What could be so horribly bad that nature decided, hey, I'm going to go after that one now? I do not think that anyone deserves to have their body eaten by cancer, or that anyone should have to fight every single day to make sure they get to the next one. There is no rhyme or reason to any of it. It's depressing.
I know we can't go through life terrified of what "could" happen, no one should go through life scared. But that doesn't make it easier to handle or watch. I don't know, my head is so jumbled today. We should get to go home tonight, but I'll be back on Monday to get Jax fitted for a new ear mold since we lost one. He hasn't had his hearing aids in well over a month, so I definitely don't want to miss it. We get a break on Tuesday, but then we're back Wednesday, Thursday, and Friday for appointments. I also have to call Dr. Pearson to see if he still wants to do the cleft surgery on the third even though Jaxson's head is done. And I'll need to follow up with Dr. Grondin in the Chiari malformation, I'm sure he'll want to see Jax again soon. And I still need to make the orthopedic appointment now that the referral is in. Plus I have to call the pediatrician for a referral to the eye clinic and possibly GI.
There's so much to keep track of with this kid, I have no idea how we've been able to keep up. And every time we think we might be nearing the end of the madness, something else pops up. This poor kid has had six surgeries and has at a minimum one more. He may still need surgery for his Chiari and tethered cord. And I have no idea what nephrology is going to tell us about his kidneys. I am not complaining, though, because some parents never get this opportunity. Their babies don't make it out of the hospital or they're given a hard time by the doctors or whatever the case may be. Jaxson is at one of the top children's hospitals in the country, and I am physically able to take him to his appointments and make sure his needs are met. Again, not every parent gets that opportunity.
So I guess what I'm feeling is humble. And thankful. Thankful that I have my child here with me, that he's in no immediate danger of leaving us, and that I am able to meet his needs as they arise. Humbled by the thought of not being able to do those things. As a parent, the ultimate goal is to teach your child from your own experiences and ready them for life on their own. I plan on doing just that with both of my boys, but in the process I am learning more than I am teaching. From both kids. If people would open their eyes and see what these situations have to offer, the world would be a better place.
I suppose I she find something productive to do with my time instead of wallowing in a place I don't need to be. Step number one in caring for your children (or any loved one, for that matter) is to take care of yourself. I forgot to end my blog the other day with our quote, but not today :)
"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."
It's sad to see the sheer number if pages like that popping up on Facebook. Not because they shouldn't have pages, but because there is a clear problem with the world today. We eat so much processed food and put so many chemicals into our bodies that it's no wonder said bodies are succumbing to disease. It makes me angry and it makes me sad. What did these people, especially the kids and babies, do to deserve such treatment? What could be so horribly bad that nature decided, hey, I'm going to go after that one now? I do not think that anyone deserves to have their body eaten by cancer, or that anyone should have to fight every single day to make sure they get to the next one. There is no rhyme or reason to any of it. It's depressing.
I know we can't go through life terrified of what "could" happen, no one should go through life scared. But that doesn't make it easier to handle or watch. I don't know, my head is so jumbled today. We should get to go home tonight, but I'll be back on Monday to get Jax fitted for a new ear mold since we lost one. He hasn't had his hearing aids in well over a month, so I definitely don't want to miss it. We get a break on Tuesday, but then we're back Wednesday, Thursday, and Friday for appointments. I also have to call Dr. Pearson to see if he still wants to do the cleft surgery on the third even though Jaxson's head is done. And I'll need to follow up with Dr. Grondin in the Chiari malformation, I'm sure he'll want to see Jax again soon. And I still need to make the orthopedic appointment now that the referral is in. Plus I have to call the pediatrician for a referral to the eye clinic and possibly GI.
There's so much to keep track of with this kid, I have no idea how we've been able to keep up. And every time we think we might be nearing the end of the madness, something else pops up. This poor kid has had six surgeries and has at a minimum one more. He may still need surgery for his Chiari and tethered cord. And I have no idea what nephrology is going to tell us about his kidneys. I am not complaining, though, because some parents never get this opportunity. Their babies don't make it out of the hospital or they're given a hard time by the doctors or whatever the case may be. Jaxson is at one of the top children's hospitals in the country, and I am physically able to take him to his appointments and make sure his needs are met. Again, not every parent gets that opportunity.
So I guess what I'm feeling is humble. And thankful. Thankful that I have my child here with me, that he's in no immediate danger of leaving us, and that I am able to meet his needs as they arise. Humbled by the thought of not being able to do those things. As a parent, the ultimate goal is to teach your child from your own experiences and ready them for life on their own. I plan on doing just that with both of my boys, but in the process I am learning more than I am teaching. From both kids. If people would open their eyes and see what these situations have to offer, the world would be a better place.
I suppose I she find something productive to do with my time instead of wallowing in a place I don't need to be. Step number one in caring for your children (or any loved one, for that matter) is to take care of yourself. I forgot to end my blog the other day with our quote, but not today :)
"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, January 16, 2014
Moving, Christmas and Kids
It's been some time since I have been able to write a blog. We haven't had Internet in a month, so I've just been getting on at the hospital. Jaxson has missed some appointments because of being sick, so even those times are few and far between. So here's what has gone on the last month:
We moved into a new place three days before Christmas. We signed the lease the week before and still didn't have get until the day before Christmas. It was turned on via emergency because the landlord hadn't paid the most recent bill. We were told that if it wasn't paid, the city would vacate the premises. So we held off on unpacking, except for making sure we had room for our tree and the boys gifts. Even with the water turned on, we still didn't have hot water. There was a flag on the water tank saying a part needed replaced before it could be lit. So I took the boys to my parents house so they and I could bathe, and Jayson and Michael went to his moms house to do the same. Obviously this couldn't happen every day, so we took sponge baths in between. For two weeks we didn't have hot water, which we finally have now. The landlord waited until the last possible second to pay the bill, but it was paid and they have been much better since then.
The house is a fixer-upper, which we knew when we signed the lease, so Jayson has been working on patching holes and painting. The windows are extremely drafty, so we've spent a couple of nights with everyone sleeping in the living room and the rest of the house closed off to conserve heat. The best part was when AEP shut us off. Wen we transferred service, apparently we had to pay a new deposit, which no one communicated to us. I spoke with a supervisor who was nice enough to put that on our first bill, which they normally do not do. But they said that the landlord had to do some sort of identification saying that we lived there, so we had another night in the living room. This time with candles and lots of blankets! Luckily it was turned back on the next day, so we didn't have to worry about staying somewhere else.
Christmas was absolutely amazing. We received so much help that the boys had plenty to open in the morning! We were so grateful, and I cried over it because without that help, these two would have had practically nothing. Thank you to everyone who pitched in!
New Year's was just another night/day for us. We actually stayed up until midnight (not the kids)!
Since then, Jayson got a new job at Olive Garden and has been working in the evenings. We have to transport the kids to school until they get the bus switched over, but they are now in the mornings instead of the afternoon, which I like. Both boys are cranky in the morning lol! So we've basically been trying to slowly get the house in order and make it home.
Last week, J and I noticed that there was a spot on Jaxson's left pin anchor that looked like it might be coming through the skin. So we went and saw Dr. Pearson, who said it was okay, just keep an eye out for infections and such. We haven't seen any signs of infection, but either that day or the day after, Jaxson started throwing up. I let it go, thinking he might have a virus, but after nearly a week, I called again. Besides getting sick after almost every feed, he wasn't taking full feeds, had been cranky and not quite himself. In the last few days, we've noticed him getting tired more often. So we are at the hospital for a CT to check for pressure in his skull. He also has two more spots at the back of each pin, and several spots popping up along his incision. I have no idea when we'll get the results of the scan, but I hope it's soon. And I hope it's nothing that has to be handled now. Jaxson is supposed to have his distractors out and his cleft fixed in 2 weeks, so if he needs a shunt before that, I have no idea what it will do to the surgery. It's just so frustrating to watch him go through this!
On top of that, Jeffrey has been more and more clingy and sensitive. He throws at least 3 fits a day and constantly has to be talked to about his attitude. I know he's going through just as much, if not more, than the rest of us, but it's. hard to not get angry. Where did my sweet, smart, independent little boy go? Who is this sensitive monster that's suddenly attached to the hips of his dad and me? But he's so amazingly sweet (still) and most of the time he's a blast to play with. He always wants me to read to him, which I love, and he loves teaching his brother new signs from the Signing Time DVDs. I know he's just acting out because he doesn't understand anything that's going on. Mom and dad are always stressed because of money (or lack there of) and he can't do a lot of the things that we used to do with him because we just can't. He knows his brother isn't feeling well and he doesn't understand why or hat he can do to help.
...
And now for the current update. Jaxson's CT showed that there could be more fluid in his head. They need to do an MRI to determine if a shunt is needed, but he can't have that done until his distractors are removed. Why? Because he has metal in his head. That would be a pretty devastating situation. So he's having his distractors out tomorrow afternoon most likely, and they are going to try and do e MRI right after. Dr. Grondin says that he doesn't think there's pressure because his 4th ventricle would be bowed, but it's not. He said that's why they need the MRI because it will show if there's pressure. I am of the belief that there actually is pressure. If there isn't, Jaxson may have to have an additional surgery to fix his Chiari malformation. If they determine that is the course of action, they will go in and remove some of the bone at the base of his skull to create more space. And now I have no idea when he will get his cleft fixed now. It's one thing after another with this kid. And it's so frustrating to watch. No child should have to worry about serious illnesses or major surgeries. Jaxson is no exception. What did he do to deserve this? Nothing. No kid does anything to deserve being sick. Seeing my baby in pain, and other kids too, is so heart breaking. I just want to scoop them all up and hug them until it's all better.
Those thoughts are always in the back of my head, but in the front of my head is pure amazement and awe. If Jaxson has taught me anything, it's that you can get through any situation and come out stronger. Long as you keep smiling. And just abut every kid who has to go through something like this is the same way. God truly knows which kids are the best to be our teachers. As much as we work with Jaxson to teach him new things and get his development up to where it should be, he teaches us something new every day. He knows what his limitations are and uses what's around him to get by. He's the most resourceful kid I have ever seen! Jeffrey would rather I do something for him than figure it out on his own, same as most kids. We sometimes use Jaxson as a teaching tool for Jeffrey, and when Jaxson gets older we will do the reverse. I couldn't ask for two more amazing children. They are so different, yet so perfect!
So now I'm settling in, Jayson ran down to get us some food and Jaxson is asleep. I'm exhausted. So I'm going to eat when J gets back and then try to catch up on a bunch of stuff for Jaxson's Facebook page and some research.updwtes on his current status will take place on FB tomorrow. I'm not sure when I'll be able to blog again, but hopefully soon.
We moved into a new place three days before Christmas. We signed the lease the week before and still didn't have get until the day before Christmas. It was turned on via emergency because the landlord hadn't paid the most recent bill. We were told that if it wasn't paid, the city would vacate the premises. So we held off on unpacking, except for making sure we had room for our tree and the boys gifts. Even with the water turned on, we still didn't have hot water. There was a flag on the water tank saying a part needed replaced before it could be lit. So I took the boys to my parents house so they and I could bathe, and Jayson and Michael went to his moms house to do the same. Obviously this couldn't happen every day, so we took sponge baths in between. For two weeks we didn't have hot water, which we finally have now. The landlord waited until the last possible second to pay the bill, but it was paid and they have been much better since then.
The house is a fixer-upper, which we knew when we signed the lease, so Jayson has been working on patching holes and painting. The windows are extremely drafty, so we've spent a couple of nights with everyone sleeping in the living room and the rest of the house closed off to conserve heat. The best part was when AEP shut us off. Wen we transferred service, apparently we had to pay a new deposit, which no one communicated to us. I spoke with a supervisor who was nice enough to put that on our first bill, which they normally do not do. But they said that the landlord had to do some sort of identification saying that we lived there, so we had another night in the living room. This time with candles and lots of blankets! Luckily it was turned back on the next day, so we didn't have to worry about staying somewhere else.
Christmas was absolutely amazing. We received so much help that the boys had plenty to open in the morning! We were so grateful, and I cried over it because without that help, these two would have had practically nothing. Thank you to everyone who pitched in!
New Year's was just another night/day for us. We actually stayed up until midnight (not the kids)!
Since then, Jayson got a new job at Olive Garden and has been working in the evenings. We have to transport the kids to school until they get the bus switched over, but they are now in the mornings instead of the afternoon, which I like. Both boys are cranky in the morning lol! So we've basically been trying to slowly get the house in order and make it home.
Last week, J and I noticed that there was a spot on Jaxson's left pin anchor that looked like it might be coming through the skin. So we went and saw Dr. Pearson, who said it was okay, just keep an eye out for infections and such. We haven't seen any signs of infection, but either that day or the day after, Jaxson started throwing up. I let it go, thinking he might have a virus, but after nearly a week, I called again. Besides getting sick after almost every feed, he wasn't taking full feeds, had been cranky and not quite himself. In the last few days, we've noticed him getting tired more often. So we are at the hospital for a CT to check for pressure in his skull. He also has two more spots at the back of each pin, and several spots popping up along his incision. I have no idea when we'll get the results of the scan, but I hope it's soon. And I hope it's nothing that has to be handled now. Jaxson is supposed to have his distractors out and his cleft fixed in 2 weeks, so if he needs a shunt before that, I have no idea what it will do to the surgery. It's just so frustrating to watch him go through this!
On top of that, Jeffrey has been more and more clingy and sensitive. He throws at least 3 fits a day and constantly has to be talked to about his attitude. I know he's going through just as much, if not more, than the rest of us, but it's. hard to not get angry. Where did my sweet, smart, independent little boy go? Who is this sensitive monster that's suddenly attached to the hips of his dad and me? But he's so amazingly sweet (still) and most of the time he's a blast to play with. He always wants me to read to him, which I love, and he loves teaching his brother new signs from the Signing Time DVDs. I know he's just acting out because he doesn't understand anything that's going on. Mom and dad are always stressed because of money (or lack there of) and he can't do a lot of the things that we used to do with him because we just can't. He knows his brother isn't feeling well and he doesn't understand why or hat he can do to help.
...
And now for the current update. Jaxson's CT showed that there could be more fluid in his head. They need to do an MRI to determine if a shunt is needed, but he can't have that done until his distractors are removed. Why? Because he has metal in his head. That would be a pretty devastating situation. So he's having his distractors out tomorrow afternoon most likely, and they are going to try and do e MRI right after. Dr. Grondin says that he doesn't think there's pressure because his 4th ventricle would be bowed, but it's not. He said that's why they need the MRI because it will show if there's pressure. I am of the belief that there actually is pressure. If there isn't, Jaxson may have to have an additional surgery to fix his Chiari malformation. If they determine that is the course of action, they will go in and remove some of the bone at the base of his skull to create more space. And now I have no idea when he will get his cleft fixed now. It's one thing after another with this kid. And it's so frustrating to watch. No child should have to worry about serious illnesses or major surgeries. Jaxson is no exception. What did he do to deserve this? Nothing. No kid does anything to deserve being sick. Seeing my baby in pain, and other kids too, is so heart breaking. I just want to scoop them all up and hug them until it's all better.
Those thoughts are always in the back of my head, but in the front of my head is pure amazement and awe. If Jaxson has taught me anything, it's that you can get through any situation and come out stronger. Long as you keep smiling. And just abut every kid who has to go through something like this is the same way. God truly knows which kids are the best to be our teachers. As much as we work with Jaxson to teach him new things and get his development up to where it should be, he teaches us something new every day. He knows what his limitations are and uses what's around him to get by. He's the most resourceful kid I have ever seen! Jeffrey would rather I do something for him than figure it out on his own, same as most kids. We sometimes use Jaxson as a teaching tool for Jeffrey, and when Jaxson gets older we will do the reverse. I couldn't ask for two more amazing children. They are so different, yet so perfect!
So now I'm settling in, Jayson ran down to get us some food and Jaxson is asleep. I'm exhausted. So I'm going to eat when J gets back and then try to catch up on a bunch of stuff for Jaxson's Facebook page and some research.updwtes on his current status will take place on FB tomorrow. I'm not sure when I'll be able to blog again, but hopefully soon.
Tuesday, November 12, 2013
Blessings and Worry
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."
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, 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."
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