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."
Tuesday, July 29, 2014
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."
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."
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